Now we can treat it without making other symptoms worse
Half of people with Parkinson’s disease experience hallucinations, paranoia and delusions. Mary O’Hara reports on a new hope.
One night without warning, Jay Sagen leapt from his bed and grabbed the quilt, then ran downstairs and threw it out onto the street. He was certain there was a large black snake in it. His startled wife Diane hurried after him and tried to explain that nothing was there. “But he wasn’t listening to me trying to talk sense into him.”
Then Jay began seeing black cats everywhere in the house. He believed there were groups of people on the property at night too, and that a creature called Big Boy was in their bed with them. Sometimes, he believed he’d whiled away whole afternoons talking to his brother in the living room of their cosy California home south of Los Angeles.
He simply didn’t understand when Diane told him his brother was never there.
Jay, a 77-year-old artist, taught for decades at local community colleges. He was diagnosed with Parkinson’s disease in 2009 after a neurologist observed his tremors and other physical symptoms, including stiffness. Diane, a therapist now aged 73, was not scared: “We’ll deal with it, if that’s what it is,” she thought.
Preparing for the tough adjustment to life as the primary caregiver to a person with a neurodegenerative illness, Diane knew the disease was associated with health problems ranging from difficulty sleeping to tremors and slowing of movement. She also expected that it would take a toll on her time and energy as she assisted Jay with his physical impairments.
What she didn’t know – and what few people even within the medical and caring professions realise – is that over the course of their illness at least half of all people diagnosed with Parkinson’s disease will develop another set of symptoms known as Parkinson’s disease psychosis (PDP). The impact on the patient and their family – often because they don’t know what is happening – can be devastating.
Jay’s PDP symptoms began as frustrating, annoying behaviours. He would insist Diane was stealing from the family finances, for example, or accuse her of being unfaithful after 50-odd years of marriage. Eventually, the manifestations became more serious. He was increasingly seeing things and people that weren’t there. He was frightened. On one occasion Diane returned from work to learn Jay was in hospital. He’d fallen badly while charging out of the house because he had become convinced he was late for a party. “When I think back, that was disturbing,” she says. “I would think: ‘How bad is this going to get?’”
There was no answer to her question. PDP brings with it a number of serious related issues, such as a higher risk of premature death. To make matters worse, drugs for treating psychosis can heighten the physical symptoms of Parkinson’s disease. In recent months, however, a new drug has become available. It is the first of its kind and specifically treats psychosis without affecting other symptoms – but for people like Jay and Diane, questions about who the drug might help, who can get access to it, and how much it costs now loom large.
“Parkinson’s is pretty easily recognised. People are slowed down, they’re bent over, they have a tremor and we think of it as a motor disorder – which it is,” explains Dr Jeffrey Cummings, Director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas and a leading authority on Parkinson’s and PDP. “But people aren’t often familiar with the non-motor components of Parkinson’s disease, including depression [and] psychosis.”
Between 7 and 10 million people are estimated to have Parkinson’s disease worldwide – 1m in the USA and more than 100,000 in the UK. This means several million people will also develop PDP and experience sometimes debilitating delusions and hallucinations. Yet while experts acknowledge that general awareness of the motor symptoms of Parkinson’s is high (certainly in the USA, where the launch of a foundation by actor Michael J Fox after his diagnosis propelled it into the limelight), PDP remains largely hidden, misunderstood and undertreated.
Dr Rachel Dolhun, Vice-president of Medical Communications at the Michael J Fox Foundation, points out that it can be difficult for people to make the connection between PDP symptoms and Parkinson’s, and to talk openly about it. “I think the difficulty is that PDP has symptoms that people don’t recognise, that they don’t bring up to their doctors and to their caregivers because they don’t realise it’s a problem… they’re afraid they’re going crazy or they think there’s not a treatment for it. Even the fact that it is defined as psychosis is a scary thing.”
Reassuring people that it is part of the disease is a big issue, she adds. “It can happen and there are things that we can do – but we can’t do anything if you don’t tell us about it.”
It isn’t clear exactly what causes it, but the psychosis can stem from either the underlying Parkinson’s disease (mostly among those who have lived with it for a long time) or the medication used to treat it. Drugs prescribed to alleviate the motor symptoms of Parkinson’s work by replenishing dopamine, the brain chemical that is diminished in people with the disease. The problem is that while this can reduce motor symptoms, increasing dopamine can overstimulate other parts of the brain and cause psychosis.
Meanwhile the medications used to date to treat psychosis symptoms – drugs such as clozapine – act by blocking the dopamine system, which tends to worsen motor problems as well as run the risk of serious side-effects.
Cummings sums it up this way: “The great paradox is that the drugs that improve psychosis make Parkinson’s worse. And so we just have not had a good alternative for our patients in terms of controlling psychosis.”
Diane Sagen perches on the sofa in the living room of her house in a tranquil cul-de-sac near Newport Beach. She has a stack of notes in her hands – pages from a diary she’s kept to chronicle the progression of Jay’s illness. By her side, propped up on a cushion, is a screen with live video streaming from the bedroom so she can keep an eye on her husband while he rests.
“[I’m] always being vigilant in case he falls, which he does a lot,” she says. “I’m very hypervigilant. Every now and again you can’t take it any more and you’ll turn [the vigilance] off and then something will happen.”
Diane has had intermittent support for Jay, such as care assistants, without which she says she would struggle to cope. While we are talking, she takes an unexpected call from a healthcare worker who confirms the couple have qualified for some new respite care through Medicare, the federal health insurance programme for retired people. Putting down the phone she takes a long, deep breath and says to herself: “Oh that’s great.”
Without this kind of help what would she do? “I don’t know. Go out of my mind. I would just be totally worn out.”
Diane says online groups have helped her to support others in similar circumstances – especially on the worst days – and to receive support in return. She is active in carers’ groups and puts herself forward for interviews like this one to raise people’s awareness. But even with her resolve to make the most of things, and given that from time to time there are glimpses of the Jay she fell in love with, she confesses it has been getting tougher as time has gone on. Physical exhaustion is one repercussion of assisting Jay day in, day out with his mobility.
But in the absence of unlimited funds to pay for help full-time, she says, it’s a mounting effort. Loneliness is a particularly challenging aspect of the caregiving role too. “You just want to escape, basically. It really is 24 hours a day of caring. And if you don’t get away occasionally, you know, you suddenly wake up and realise you are under water.
“That’s the big thing with this. It’s that feeling of isolation you get,” she says. “Nobody understands. They don’t know how hard it is. If you’ve had enough sleep you can separate yourself and say, ‘OK, it’s the disease.’ If you’re not feeling rested, you’re like, ‘Oh my god, I’m gonna kill this man.’”
Coming back downstairs at one point after checking on Jay, Diane explains why she has been speaking out about PDP. “This is what was handed to me. I guess I feel a responsibility. I’m glad to have that voice.”
Pressure on marriages and other relationships are recurring characteristics of living with PDP, not least because paranoia about infidelity features so highly. Dr Jim Beck, Vice-president of Scientific Affairs at the Parkinson’s Disease Foundation in the USA, says the “ripple effect” on the wider family and loved ones is significant. “The psychosis, as it gets more severe, can be really disruptive for relationships and for caregivers. That’s the number one reason people with Parkinson’s enter nursing homes. It’s because of psychosis.”
And because the symptoms are so complex and challenging to manage, once someone experiencing psychosis is placed in a nursing home, they are highly likely to remain there permanently. A drug that treats the symptoms of psychosis without making the physical symptoms of Parkinson’s worse is something that medical professionals and those affected by PDP have long hoped for. They know it would have a massive impact on the quality of life of people with Parkinson’s and their carers.
Elaine Casavant is a longstanding advocate on behalf of people with PDP and their families. A former nurse, she is a member of the People with Parkinson’s Advisory Council, which guides the work of the Parkinson’s Disease Foundation and speaks all across the USA on the subject. She says the difficulties of living with and treating PDP should be much more visible and a higher priority for policymakers, researchers and medics.
Elaine’s husband Len was diagnosed with Parkinson’s in the early 1990s when he was in his mid-40s. His psychosis symptoms, initially wrongly diagnosed as dementia, have waned at times as some medications and interventions, such as deep brain stimulation, have produced temporary relief. But on the whole, she says, the accusations of infidelity and the delusions and hallucinations have taken their toll. “They’re odd, they’re hurtful, they’re frightening,” she says.
One night, Len got up thinking children were playing in his room. Elaine heard him shouting in the night and ran into the room. But Len had strung an extension cord across the doorway. As she tripped and fell, he started yelling: “Elaine, Elaine, I’ve got one!”
Watching her husband suffer has at times felt relentless. “Sometimes I feel like I’m a prisoner in my own household. No matter how many times you correct or fix or clean up, tomorrow is going to be the same if not worse.”
Over the years Elaine has heard the same frustrations from people in similar circumstances, and that the strain is often unbearable. She has also been highlighting through her personal experience and activism the glaring absence of any effective treatment to target PDP. But that absence may soon be over.
On 29 April 2016, the US Food and Drug Administration (FDA) approved the first ever drug to specifically treat delusions and hallucinations associated with PDP. Trials showed the medication – brand name Nuplazid and from the compound pimavanserin – eased the symptoms of the condition without the same negative effects on motor symptoms as other antipsychotic drugs. This is because the new drug, from the San Diego-based pharmaceutical firm Acadia, doesn’t act on dopamine in the brain.
In fact, it is the first example of a class of drugs called selective serotonin inverse agonists, and is being touted by Acadia as a “breakthrough therapy”. “It does not work on the dopamine receptors. It works on the serotonin pathways,” explains Rachel Dolhun. “So it has this new mechanism of action.”
Jeffrey Cummings, a lead researcher on the trial, says that after a long time spent searching for a compound that would relieve symptoms of hallucinations and delusions in people with Parkinson’s, the new drug is a game changer. “It’s a breakthrough compound because not only have we not had any treatment for psychosis in Parkinson’s disease, we haven’t had treatment for psychosis in any neurological disease.”
The arrival of Nuplazid is “a big deal” for people with PDP as well as for their loved ones if the burden of care can be reduced, says Jim Beck: “Having a drug which doesn’t interfere with motor symptoms or other aspects of Parkinson’s yet has the potential to really address the psychosis – it’s really important.”
Ruth Ketcham was one of the people who took part in the trial. Her hallucinations had begun one year after her diagnosis with Parkinson’s. At first, her daughter Jody Wade explains, it was a belief that animals were in the house at night. “I believed her. I said, ‘What kind of animals?’” An exterminator confirmed there were none.
The alarm bells began ringing louder when Ruth started repeating a “kind of entertaining” story about the neighbours doing T’ai Chi in the garden every morning at daybreak. “Again, I believed it,” says Jody. “She described people in amazing detail and the detail never changed.” Only after Jody stayed overnight at the house did she realise it was an elaborate hallucination.
After being made aware by her specialist of the phase III trial of pimavanserin, Ruth agreed to take part. “I have to say – and I didn’t say this to my mother – I really wasn’t that hopeful,” Jody admits. “She had a 50/50 shot of getting the placebo. But you know what? It was worth a shot. There was nothing else that was going to help her.”
More than five years later, and now 93, Ruth is still taking the drug and the outcome has been dramatic for the whole family. “I remember going back to the doctor with my mother and just being absolutely elated,” says Jody, welling up. She told the doctor that her mother had obviously got the real drug. “The doctor said: ‘You don’t know that.’ But I said: ‘Yeah. But I do know that.’” Within weeks, the hallucinations had drastically reduced, and while there are some mild symptoms now and again, they are nothing like before.
“I ask my mother: ‘What does this mean to you? What do you take away from this?’ And she says: ‘It gave me a normal life back.’ Five years later I still cry talking about it. It gave us years with my mother that we wouldn’t have had.”
Like any drug, Nuplazid has various possible side-effects. Adverse reactions recorded in the trials included a small number of participants experiencing nausea, constipation and confusion – luckily, Ruth has experienced none of them.
Elaine Casavant cautions that drugs don’t work in the same way for everyone, but also that people aren’t always able to access medication when it has been approved, for example if health insurance doesn’t cover it, or if they are poor. Drugs don’t come cheap in the USA, especially branded ones.
“Most people dealing with this are exactly like me, living on a fixed income and already paying for medications,” she says. “I’m in the process of negotiating the insurance [for a Nuplazid prescription]. It’s a matter of negotiating a rate we can afford. But again, I’d be willing to pay out of pocket to get this drug as soon as I can get it.”
In early September, a few weeks into Jay Sagen’s first prescription of Nuplazid, Diane noted some positive signs in her diary. “It’s sort of sporadic,” she confirmed. “He’ll have a couple of days with no delusions, then a day with lots of them. I notice a difference though. He’ll point to what he thinks is a man (usually in the mirror) and say something about him. All it takes is for me to say, ‘There’s no man,’ and he’ll say, ‘Oh,’ and drop it. So he’s easier to bring around to reality than he was.”
A month later, in a further update, she explained that things were continuing to improve: “The Nuplazid is working really well now. He only sees the occasional phantom person now.”
For now, Nuplazid is only available in the USA. While Acadia pushes for wider distribution and informs medical professionals on developments, plus makes moves to have it approved in other markets such as Europe, millions of people with PDP will have to wait to see if this potentially transformative compound will work for them.
So what’s next? That a new therapy has been approved is understandably welcome, but it is far from the end of the suffering, not least because the causes of Parkinson’s disease are still not well understood and a cure is nowhere on the horizon.
However, Rachel Dolhun says that for the first time a variety of “really exciting” therapies could be on course to offer relief for people with Parkinson’s in general, and also for those with PDP. Some might even be available in less than two years. Most of these potential new therapies are in the early stages of trials but, she says, the possibilities are nonetheless significant: “Knowing that there’s research going on into understanding Parkinson’s better, developing better and newer treatments, and finding a cure is certainly reason for optimism.”
Jeffrey Cummings too is hopeful. He thinks the step forward with pimavanserin could blaze a trail for others like it and says he’s already being approached by drug companies interested in further research following the trials that brought Nuplazid to market.
“This is a paradigm shift in terms of opening up the field. To say: ‘Yes, we are beginning to know enough about the underlying biology of these symptoms that we can intervene more effectively.’ And it won’t be just Parkinson’s. This is a gateway to more effective neuropsychiatric interventions.”
In the meantime, caregivers like Jody Wade, Elaine Casavant and Diane Sagen understand what it’s like to be on the frontline of PDP. They would all like a cure for their loved ones, of course, but in its absence they say better support, such as more respite for patients and caregivers to help navigate the condition’s unique challenges, is vital. Raising awareness is crucial too, not only so that people are diagnosed and treated, but also because research funding may follow.
According to Jim Beck, educating the wider population about PDP is paramount. “I think this really speaks to the heart of the matter – that this is something that is just not spoken about.”
“You would not believe the people living in isolation with this,” concludes Elaine. “They have no backup, they have no support.” Jody agrees: “Too many people suffer in silence.”
On 20 October 2016, Jay Sagen died suddenly after having a heart attack. Diane requested that their experiences with PDP continue to be published.
Every day, hundreds of Israeli volunteers drive ill Palestinians from the West Bank and the Gaza Strip to hospitals in Israel. Shaul Adar joins them on the road and learns why they see their neighbourly help as a step on the journey to peaceful coexistence.
At 6.30am, the Eyal border crossing is a picture of human misery. The official name is “border crossing”, but nobody uses this term. Israelis and Palestinians alike say “Makhsom” – meaning barrier or roadblock – which reveals the psyche of movement between Israel and the West Bank.
Thousands of Palestinian workers, mainly men, who have made it through the rigorous security check via steel pens, are looking for a bus, pickup truck or employer that will take them for a valuable day of work inside Israel proper. The narrow road leading from the crossing to the main road and on to the centre of Israel is gridlocked. Israeli police and border patrol are watching from a distance while it seems every traffic law is disregarded. It can take hours in overcrowded conditions, facing petty tyranny from the guards, and there is no guarantee of being allowed to the other side.
Behind rows of buses is a policeman from the Palestinian Police Force and Leila, his three-year-old daughter, who suffers from high blood pressure. They are on their way to Tel HaShomer hospital, near Tel Aviv, for treatment for the little girl. They are foreigners in this country – from Israel’s estranged neighbours, no less. Yet amid the car engines, horns and general mayhem, the father and daughter sitting on a rock appear to be the calmest people around. They are comfortable in the knowledge that someone is coming to pick them up. That someone is my brother, Amir Adar, a software engineer, a 60-year-old Israeli citizen and a volunteer for Road to Recovery, a group of Israelis who drive sick Palestinians to Israeli hospitals from Israel’s borders with the West Bank and the Gaza Strip.
Israel has occupied the West Bank and Gaza since the Six-Day War in 1967. Although there are hospitals in the West Bank and Gaza, they are not as well-equipped as the ones in Israel. Many people with cancer, people who need a transplant or children who need dialysis have to go to Israel for life-saving treatments. While the Israeli health system is not responsible for the health of Palestinians, the Palestinian Authority pays high tariffs for any treatment for its citizens (as well as those in Gaza), which makes the Palestinian patients welcome and valuable guests. The problem is getting them into Israel, and to the hospital, in the first place.
Today, both the West Bank and Gaza are fenced and Palestinians require a permit to enter Israel. There is some cooperation between the Israeli government and the Palestinian Authority, which runs civil matters in the West Bank, but the Hamas movement, which controls Gaza, is committed to the destruction of Israel.
Following the collapse of the Oslo Accords and peace treaty in the 2000s, the short journey from Gaza to an Israeli hospital is now a Herculean task. Sick Palestinians need to see a local doctor, who will refer them to a specialist, who then may ask to send them for treatment in Israel. From there, the Palestinian Authority Health Office will need to authorise it, get a permit from an Israeli coordination officer, find the right hospital, and send a commitment to pay the bill. This process alone can take weeks or even months.
With relationships between Israel and the Palestinians at a nadir, each case is scrutinised by both sides. To get the permit to enter Israel, Palestinians may be asked to work for the Shabak, or Shin Bet, Israel’s internal security forces. This makes any travelling patient a suspected traitor in local Palestinian eyes, while equally the Israelis fear a breach of security. The patient is only allowed one person to accompany them and that person must be cleared by the security services. Many, mainly young men, are not allowed in, so the burden falls on grandmothers and grandfathers to put a child at ease. Each journey in and out is a long haul of bureaucracy, checks and border crossings, and fear of being in the wrong place at the wrong time.
Palestinian patients make their way to the crossings from the West Bank and Gaza, clear all the checks, and then need to make the much longer, expensive and intimidating way across Israel. This is not a time when a Palestinian can feel safe inside Israel.
This is why my brother is here today.
Ordinary volunteers like him take sick Palestinians from border crossings to Israeli hospitals and back again. Without them, patients like Leila would have no option but to take a taxi into Israel, which is too expensive for most Palestinians. Road to Recovery’s 500 volunteers provide them with a free ride and the company of an Israeli to ease their fears.
Thanks to the morning rush hour, the 30 km drive takes three hours. The journey takes us through some of the most affluent neighbourhoods of Israel, a world away from the living conditions in the West Bank, and, traffic aside, there are no further problems or delays. “Shukran,” says the father warmly (thank you in Arabic). “No thanks needed,” answers Adar in Arabic. “It is my duty. It’s also an opportunity to brush up my Arabic.”
It is dawn the next day. I am at Rambam Medical Centre in Haifa, in the north of Israel by the sea. In a battered white Citroen people carrier named Junky are two girls from Gaza, and one mother and one father. The driver is Yuval Roth, the founder and engine behind Road to Recovery.
The 60-year-old white-haired Israeli is a semi-retired maker of stilts for performance artists, a former juggler who taught generations of Israeli jugglers, and son to a Holocaust survivor father. In 1993, he lost his brother Udi, who was kidnapped and shot by a Hamas unit on his way back home from a reserves service in Gaza. Roth’s reaction was to join the Parents Circle – Families Forum, a joint group of bereaved Israelis and Palestinians from the West Bank and Gaza. There they can share their pain and discuss ways to improve the situation.
In 2006, he was asked by Muhammad Kabah, a fellow member of the forum, to drive his brother for cancer treatments in Israel.
“For me it was just like a helping a neighbour,” says Roth, when he starts the 160-km journey south to the Erez crossing into Gaza. “I’m from Pardes Hanna and he is from a village near Jenin. There is a border between us but we are still neighbours. That was the start and then I had more requests, so I’ve asked for help from family and friends.”
Roth began driving sick Palestinians on a regular basis, with others soon joining his cause. Word of mouth spread, and six years ago Roth received a donation of US$10,000 from the singer Leonard Cohen, and Road to Recovery was born.
“His donation pushed me to found the trust and enabled us to increase the number of volunteers,” he says. The resulting media coverage has brought the organisation to the awareness of like-minded Israelis and in 2015 it was able to make more than 8,000 patient trips, covering over 550,000 km, with an operating budget of 570,000 shekels ($150,000). The proposed 2016 budget is double that, at 1.17 million shekels, raised largely from donations from Israel and abroad.
The greatest sacrifice the volunteers make is not the missed sleep, the snail’s pace of their drives or the waiting. It is losing the option to turn a blind eye to suffering. While most Israelis don’t want to know about the hardship of Palestinians, let alone sick Palestinians, Road to Recovery volunteers are brought face to face with the misery of the conflict’s most vulnerable people.
“I do it for many reasons,” says Adar. “First, to help people who need it the most. For me it’s not a tall order, nothing too demanding. It’s also a political act and I want to set an example for my children. This is the place I’m living in. If I close my eyes the problem will still remain. For any chance of an agreement in the future we must have a better day-to-day life right now. I owe it to myself as a human being not to sit idle.”
These are the last days of spring in Israel. Jacaranda trees are in full purple bloom, huge flocks of storks and pelicans are making their way back north to Europe, and the hills are still green before the harsh summer will turn them dry yellow. But the land is under a cloud. The relationship between Israelis and Palestinians has been deteriorating constantly since the breakdown of the Oslo accords, and today it is arguably worse than ever. Most young Israelis and Palestinians have no opportunity to meet each other; fear and hate are the prevalent feelings.
These are the days of incitement and a poisonous atmosphere. In April 2016, Bezalel Smotrich, a right-wing member of the Knesset, the Israeli parliament, said that he would not want his newborn child to be taken care of by Arab staff at an Israeli hospital. The remark revolted many Israelis. Israel is a highly divided society but the fact that an active member of parliament would say such a thing was shocking. The Israeli health system is supposed to be a meritocracy, with many Israeli-Arab doctors and nurses. Jews and Muslims and other minorities are meant to receive treatment without discrimination.
“Indifference drives me mad,” said Arnon Rotbart, 51, a lawyer in Tel Aviv, and a fellow Road to Recovery volunteer. He wishes the Israeli public would give more thought to the living conditions of Palestinians. “These people need help,” he told me when we met in his office. “They can value the goodwill of Israelis to show compassion and empathy and they can spread it around them. The hateful, aggressive approach, the utter indifference, is something that I want to make a stand against. When a member of the Knesset says that he doesn’t want to be near an Arab baby in the maternity ward because in 20 years time that baby will grow up to be a murderer, I want to ask why we won’t give that baby the tools to be our friend.”
I also met Road to Recovery’s coordinator with Hamas, who did not want me to publish her name. Her day job is in a factory, but in her spare time she works with Road to Recovery because, she says, every child deserves medical treatment and shouldn’t pay the price for the conflict. “I feel that Israel is responsible for the condition in the Gaza Strip, the hospitals and the lack of facilities. I can’t ignore it,” she told me.
I ponder this in the back of Roth’s car, as I talk with Maisa, the mother of Lian, a three-year-old girl. They live in Rafah, in the south of Gaza. The girl has had a liver disease and had to undergo a liver and kidney transplant. “I did some tests in Rambam and I was found eligible to donate a liver lobe. It was a very easy decision for me,” says Maisa in fluent Hebrew. “First she had the liver transplant and later the kidney and she is, praise God, all right. I’m also, praise God, well. We come every month or two for a check-up or if there is an emergency.”
Roth is driving the children to the border – the Eyal crossing – so they can get back home to Gaza. That is relatively far away from Haifa or the West Bank – a taxi would have cost the families around 500 shekels. A journey to Haifa from the Gaza border can last six hours, including inspections, but Maisa says that recently it has become much better. “We only have to go through a security check once. The staff at Rambam are very good to us. For me, it’s like a second home. We lived there for three years, and it’s like a family to me now. They give with all their hearts with true love to children and parents. They wake up in the early hours and they do good for people, for sick children. I’ve never heard of anything like it.”
As our journey to Rambam goes on, Roth’s two phones ring every few minutes. The garage is calling about a repair for his other car, Muhammad Kabah is looking for work, and there is a barrage of calls about a juggling festival Roth is organising in the next week during the Passover vacation.
“I used to be a mediocre juggler but I’m proud to say that I’ve raised generations of wonderful Israeli jugglers,” says Roth. “Everybody can be one and I taught many who became world-class. The key point is to throw the item correctly to the right place. Yes, gravity will bring it down but much later then you think. If you throw it right you make more time for yourself. So don’t panic! Once you understand it there is no stress and you can juggle away.”
I ask how many balls are in the air running Road to Recovery. “Today it’s about seven,” he says. “Manageable.”
The other girl in the car with us is Afnan, a charismatic nine-year-old from Gaza City. She is perhaps the organisation’s best-known patient, following an Israeli TV piece two years ago about the 2014 conflict known as Operation Defensive Shield. Afnan, then bald from cancer treatment, was on her way back home from Haifa with her father when, following a Hamas missile attack, the roads and crossing were closed. Staying in Haifa was the safe option, but Afnan was homesick after not seeing her mother and brothers for nine months.
The decision to turn back led to tears and heartbreak as Roth – also the driver that night – ended up detouring to Kibbutz Hatzerim near Beersheba, 200 km south of Haifa, where he grew up. With Israeli Air Force jets taking off from the nearby base on their mission to bomb in Gaza, and Beersheba targeted by Hamas rockets, Afnan met Israeli kids her age in a shelter. It was surreal. “They show that TV programme at universities now, in courses about conflict solving,” says Roth. “After just a few questions about the conflict, the kids started to play with her normally. Kids are clean, not yet corrupted by hate, and we need to learn from them.” A few hours later, the crossing opened and Roth was able to drive Afnan and her father to their home, albeit to a war zone.
8am, near Jaayus
Halfway to the Erez crossing, on the motorway to avoid the metropolis of Tel Aviv, you can see the olive-tree-covered hills of Samaria on one side and Greater Tel Aviv on the other, with the barrier, sometimes fencing and sometimes the infamous wall, separating Israel and the West Bank. I peer out the car window to the east, where, just a few kilometres away, is the village of Jaayus. Two days ago there, I met Naim El Beida, Road to Recovery’s Palestinian coordinator for the West Bank. He, alongside Roth, is one of two indispensable people to the operation.
El Beida works as a building site manager in Israel (“I helped build the country,” he said with pride). He is always with his phone and a big black diary, organising trips to hospitals and making sure there are no last-minute problems. El Beida, a peace activist, was referred to Roth when a poor relative was looking for transport for his sick son. The father knew that El Beida was well connected in Israel and a mutual friend told him about Roth. “I immediately liked the activity,” he told me. “I believe it is the path for coexistence, without violence or wars. These two people can’t separate; nobody will take us so we have to live together.
“One patient led to another and now I don’t have a moment for my own. My number is passed from sick person to another. My wife told me, ‘It’s the phones or me,’ but because of my belief in my work and the help it provides for my people I told her it will be the phones!”
Today, El Beida’s number is available in every Palestinian hospital and with every medical secretary. He is one of the first people a seriously ill Palestinian would call after receiving grave medical news. He helps in many ways – as a translator, a fixer, smoothing out small problems that get in the way of a patient getting treatment. He sees the families before the first trip and after it. The difference is huge.
“I know that everybody is afraid the first time. They don’t believe it can happen. If during the previous week a group of soldiers come into your home and mess it around and cause havoc and a day later, I tell them, a Jew will come to the crossing and take you to a hospital, you’ll be confused. Some people have never met nice Israelis like our members. Some of them have just met soldiers and Shabak security service – only threatening Israelis. One mother came back from her first ride and couldn’t believe it. She said: ‘These are Jews? The driver spoke Arabic and bought sweets for the kid.’
“I told her that there are many Jews, some are good and some are bad, and it is the situation that caused them to be bad. In a different situation we would have met and become friends.”
“I wake up at 3am for work,” he told me and four other Israelis who visited him that morning. “I return in the evening and then start coordinating trips until I collapse into bed. It does affect the family, the kids and my health, but it is my calling. I want to sow the seed of respect between the people and help everybody that needs it.”
10am, Moshav Ma’agalim
As our car drives further south we reach the light-brown borders of the Negev desert and turn west towards the Mediterranean. After a rainy winter the colours are a mix of the red soil and the dark green vegetation. The Israelis who live here are in the range of Hamas missiles and have had their share in the never-ending circle of violence.
Moshav Ma’agalim is a small cooperative of religious Jews, and when Roth makes a stop there to deliver stilts to a customer, everybody takes the opportunity to stretch their legs. You can feel the tension. Nobody says a word but some glances are exchanged and when we make the short way to the Erez crossing in less than half an hour, everybody is relieved.
While Road to Recovery has its supporters, a common reaction is “the poor of your city come first” – the Hebrew version of “charity begins at home”. In other words, why are you helping outsiders (and, to some, their enemies)? Roth does actually help poor Israelis as well, as part of his volunteering work outside of Road to Recovery. But that saying follows the volunteers everywhere. “Among my friends there’s a lot of support, but I keep hearing that phrase,” says Amir Adar. “I almost prefer blatant racism to this. I wonder how many of them help the poor.”
Road to Recovery is politically neutral, but the vast majority of the members are middle-class Ashkenazi (Jews of European descent) lefties. Some of them were high-ranking officers in the Israeli Defense Force, others were ordinary soldiers who 30 years ago served in Gaza and chased the stone-throwers they now carry in their cars.
There are a low number of Arab-Israelis among them, but a recent TV programme aired in January on Channel 2, the most popular TV channel in Israel, brought Road to Recovery a wave of new volunteers, with new moral conundrums for Roth to deal with.
Roth received a call from the head of Israeli settlers in the Samaria region, saying that they wanted to help. “I almost choked,” Roth tells me as we drive. “I told him that I’d call him back because I didn’t know what to do. I asked other members and they didn’t understand my question – they said yes, of course we should work with them, but it’s still not clear-cut for me.”
This is the kind of dilemma you can find in this crazy region. The settlers want to help but there remains an ideological rift for Roth. “I don’t have a problem with a right-wing Israeli – I’d welcome him into the organisation. But in my world there is no such thing as a nice settler. The fact you are a settler is the problem. Thanks for your will to help but you are sitting on a land that doesn’t belong to you and that’s a problem.”
10.30am, Erez crossing
We can see by now the fences around Gaza and a big wall; yellow signs warning not to take photos of the security facility welcome you to the big crossing at Erez. Despite this, it is a surprisingly modern and pleasant terminal, and our car is allowed to park near it. The kids, Afnan and Yuval, are clearly happy to be near home. Their parents unpack suitcases and plastic bags. Afnan, with a big green Maccabi Haifa Football Club bag on her back, carries a number of boxes of Matzoth, the unleavened substitute for bread for observant Jews during the coming seven days of Passover. She gives a hug to Yuval and the two of them and their parents make their way into the terminal to be examined by the two sets of crossing guards, Israeli and Hamas.
There are three more Road to Recovery cars parked here. One of them is driven by Amram Mitzna – a former brigadier general in the Israeli army, the second-highest rank, a former mayor of Haifa, and a former chairman of the Israeli Labour Party.
Among Road to Recovery’s other members are Aluma Goren, a former captain of the Israeli national basketball team, and Eran Schandar, a former state attorney.
What a contrast, I think, to the two children I am waving goodbye to. They are the most vulnerable people. They live in the harshest conditions under the despotic Hamas regime and the ever-watchful eye of Israel’s Shabak security service.
Even the Palestinian health bodies are not too eager to help such families, according to Road to Recovery’s Gaza coordinator: the Palestinian Authority in the West Bank is in conflict with Hamas in Gaza, so the Authority is less than keen to be seen helping people from the Strip. The contrasts between the abject poverty in Gaza and the affluence of Israel, the mayhem of daily life in Gaza and the Israeli bureaucracy, lead to a constant culture clash that can drive even the most committed person into despair. Even among Road to Recovery volunteers there are moments of doubt.
I hear stories of patients’ families turning treatment areas into storage spaces while they gather donations – money, goods – mainly from Arabs living in Israel. Roth says he’s heard the stories and can understand it to some extent, as some families come from terrible poverty. “Some of them don’t have anything.”
Yes, he says, there are some times when people take advantage of Road to Recovery, and some do rile him. Like yesterday, when a volunteer drove to Rambam Medical Centre to collect a patient who wasn’t there. It turned out that the family had gone out shopping in Haifa. “They didn’t understand what we are. We are not taxi drivers,” says Roth. “It happens every now and then, but 95 per cent are people who need us and without us they could die.”
“A Gazan is like an onion with so many layers,” said the coordinator. “They will tell you what you want to hear because they attempt to survive between Israel and Hamas. I know what happens in the cars, the relationships that are formed and the understanding that we are the same. That is why Hamas opposes our actions in principle. They are willing to let it happen because they know it is a matter of life and death. But they do it with gritted teeth.” (The Israeli government is more than fine with their activities – it secures money for the hospitals, after all.)
If running Road to Recovery is juggling with seven balls in the air, cooperating with Hamas is juggling them on a tightrope over a volcano. A lethal conflict is always a possibility, and once in a while there is a breakdown in communication. The last one was over a “fun day”, when the organisation takes sick Palestinian children not to the hospital but to the beach or a festival for relaxation. Hamas deemed this a step too far and “normalisation with the Zionist enemy”. But in most cases the desperate need for life-saving treatments helps ease the tension.
11am, on the road to Haifa
After a short break, Roth collects two young mothers with a toddler each and we head north once again. It’s another 160-km journey but Roth doesn’t show any sign of tiredness. It is a quiet, calm drive, although again Roth’s phones are buzzing with calls – at any one time it could be last-minute problems at a crossing or something to do with the juggling festival. But he values the drive. He says it’s time he can spend on maintenance of the most important resource – the volunteers.
In rare cases when a patient doesn’t turn up, or when a passenger’s family is brusque, Roth does his best to smooth things over. “A week ago a volunteer poured his heart to me after he drove somebody and didn’t get even a thank you or goodbye. They just left. I do understand his feeling. There are people like that but I try to remember we don’t know what they’ve been through at the hospital.”
Sometimes people get too involved. They form a bond with a family, and expectations that may not be met. By the nature of their work, volunteers have to deal with dramatic situations, such as when a nine-year-old boy with cancer had an infection and a high temperature. He had to go for emergency treatment in Israel, but could only go with his grandmother. The boy, fearing for his life, cried that he wanted to die with his mother by his side. Her permission arrived at the last minute, when the boy was at the crossing, allowing the mother and child to travel for the treatment that saved his life.
Naturally, there are also deaths, many of them of children. Road to Recovery volunteers may visit the bereaved. In some cases the relationship forged during the treatment is strong enough to be maintained even during and after a death. As Roth tells me, “We try and visit bereaved families and we are told, ‘Though our child has passed, it doesn’t mean we have to end our relationship.’ When it comes from them, it does give you strength despite the sadness.”
A long day’s work comes to an end as we pull in one last time to Rambam Medical Centre in Haifa. The two mothers and kids complete the journey and check in.
In a perfect world there would be decent hospitals for the Palestinian people. In a better world the Israeli hospitals and the Health Ministry would take care of the crossings and transportation. In the real world it’s up to Yuval Roth and his group. Roth’s next hope is to make Naim El Beida a full-time West Bank coordinator with an office. “That is the dream and it will make a huge change,” says Roth. “In the meantime our job is to drive the needy and by that to create a little hope, some pockets of a better future.”
Some names have been changed.
The pain and sorrow of bereavement is supposed to get easier to bear as time passes. But what if it doesn’t? Psychiatrists call it ‘complicated grief’ – and it can be treated. Andrea Volpe reports.
After Stephanie Muldberg’s 13-year-old son Eric died of Ewing’s sarcoma in 2004, she was lost in a sea of grief. Her days were long, unstructured, monotonous. She barely left her New Jersey home. When she did leave, she planned her routes carefully to avoid driving past the hospital, just a few miles away, where Eric had been treated during the 16 months of his illness, or the fields where he had played baseball. Grocery shopping was a minefield, because it was painful to contemplate buying Eric’s favourite foods without him. To enjoy anything when he could not felt wrong. And Muldberg never thought she would be able to return to the temple where he had celebrated his bar mitzvah – and where his funeral was held.
Looking back, she describes herself as not knowing how to grieve after Eric died. “I didn’t know what to do, how to act in front of people – what I needed to do privately, who I could reach out to. I was fearful of making people more emotional, too emotional, and having to comfort them,” she tells me, by Skype. “I didn’t know how to talk about what I was thinking.” Muldberg’s long dark hair is pulled back and she’s wearing a white T-shirt. One of the things she says is that she thought if she stopped grieving, her memories of Eric would fade, and she’d lose her connection to her son for ever.
The passage of time often seems the only remedy for grief, but time didn’t help Muldberg. In the years following Eric’s death, she says, she felt consumed by grief. Then a family physician heard a talk by Columbia University psychiatrist Katherine Shear about treating chronic and unremitting grief and thought Shear might be able to help her.
Four years after Eric died, Muldberg arrived at the New York State Psychiatric Institute in Manhattan, for her first meeting with Shear. She answered Shear’s questions with as few words as possible. It was as if she were barely present in the small, windowless room. Her face was drawn and clouded; she sat crumpled in her chair, arms crossed tightly around her, as if the weight of her loss made it impossible to sit up straight. It felt to her as if Eric had died just the day before. Shear diagnosed Muldberg with complicated grief, the unusually intense and persistent form of grief she has been researching and treating for almost 20 years.
Grief, by definition, is the deep, wrenching sorrow of loss. The initial intense anguish, what Shear calls acute grief, usually abates with time. Shear says that complicated grief is more chronic and more emotionally intense than more typical courses through grief, and it stays at acute levels for longer. Women are more vulnerable to complicated grief than men. It often follows particularly difficult losses that test a person’s emotional and social resources, and where the mourner was deeply attached to the person they are grieving. Researchers estimate complicated grief affects approximately 2 to 3 per cent of the population worldwide. It affects 10 to 20 per cent of people after the death of a spouse or romantic partner, or when the death of a loved one is sudden or violent, and it is even more common among parents who have lost a child. Clinicians are just beginning to acknowledge how debilitating this form of grief can be. But it can be treated.
I first learned about complicated grief while riding the subway in Boston, where I read an advertisement recruiting participants for a study at the Massachusetts General Hospital, which I later discovered was related to Shear’s research. By then, I’d been a widow for about a decade. I was 33 when my husband died and it was fast – just six weeks from when he was diagnosed with pancreatic cancer. My grief had a different kind of complication: I was pregnant, and our son was born seven months after his father’s death. By the time I read that subway ad, he was in elementary school, and I was holding my own. I gradually went back to work. Single parenting was overwhelming, but it kept me focused on what was right in front of me. Having a young child is filled with small pleasures and motherhood enlarged my sense of community. I fell in love again. But it still felt like I walked with a limp, and that limp was grief.
Often, I felt that the course of my grief – as it slowed or accelerated – wasn’t within my control. Sometimes I’d buckle, and wait it out. Sometimes I’d push back. Somehow, I knew it was going to take as long as it took. There wasn’t anything to do about it except live. Freud, writing in Mourning and Melancholia, one of the first psychological essays on grief, saw it this way, too: “Although mourning involves grave departures from the normal attitude of life, it never occurs to us to regard it as a pathological condition and to refer it to a medical treatment. We rely on its being overcome after a certain lapse of time, and we look upon any interference with it as useless or even harmful.” That’s how it went for me.
I’d be the first to say that my path through grief has been intellectual. I’ve spent years contemplating what grief is. That subway ad made me wonder: Was my grief a disease? To be diagnosed with an illness is to seek – or wish for – a cure. But conceiving of grief as a disease with a cure raises questions about what is normal – and abnormal – about an experience that is universal. Is grief a condition that modern psychology, with its list of symptoms and disorders and an ample medicine cabinet, should treat, as if it were an illness rather than an essential part of being human?
A little more than a year ago I began sitting in on clinical training workshops at Columbia’s Center for Complicated Grief, which Shear directs. The first workshop was both a challenge and a relief. It was strangely comforting to be in the company of so many people – grief counsellors, social workers and therapists – who spent their time thinking about what it meant to grieve. It would be almost another year until I called Stephanie Muldberg to see if she’d be willing to talk at length about what her treatment was like.
Sometimes I can feel in our conversations how deliberately she chooses her words. She is, she tells me, a very private person. At times her desire to talk about her experience of complicated grief feels in tension with her natural inclination to be more self-contained. “I think the problem is people don’t talk about grief, and I want to normalise the fact that people can talk about it, and make it easier, and not so taboo,” she tells me.
For something so fundamental to being human, there’s still a great deal we don’t know about the grieving process. It wasn’t until the 20th century that psychologists and psychiatrists claimed expertise over our emotions, including grief. The conventional wisdom about grieving is that it’s something to be worked through in a series of stages. Lingering on any stage too long, or not completing them within a certain window of time, might be dysfunctional. Clinicians disagree about how long is too long to grieve, about whether the grieving person should wait for her grief to shift on its own or do something to initiate that process, and about what to do, and what it means, if grief is slow or stalled.
The idea of grief as something we need to actively work through started with Freud. John Bean, a psychoanalyst who has trained extensively with Shear and worked with her to treat patients in her research studies, explains to me that because Freud believed we have a limited supply of psychological energy, he viewed the central emotional “task of grieving” to be separating ourselves emotionally from the person who died so that we can regain that energy and direct it elsewhere. Freud thought this would take time and effort and it would hurt. His theory of “grief work” persists, often in tandem with newer theories of grief.
If grief is work, then Elisabeth Kübler-Ross provided the directions for how to do it. Kübler-Ross first proposed the five-stage model in 1969 as a way to understand the psychology of the dying, and it quickly became a popular way to understand bereavement. Today, those stages – denial, anger, bargaining, depression and, finally, acceptance – are practically folklore.
But it turns out grief doesn’t work this way. In the past several decades, more rigorous empirical research in psychology has challenged the most widely held myths about loss and grief.
When George Bonanno, professor of clinical psychology at Columbia University’s Teachers College, researched the paths people take through grief, he discovered there’s more variation to how we grieve than psychologists thought. His office, in a massive gothic brick building in New York City’s Morningside Heights, is crammed with books and lined with Chinese sculptures. On a rainy afternoon he outlines the three common paths he identified. Some people, whom he terms “resilient”, begin to rebound from loss in a matter of weeks. Others adapt more gradually, following a “recovery” path. The intensity of those first days, weeks and months of mourning subsides. They “slowly pick up the pieces and begin putting their lives back together”, typically a year or two after losing someone close to them. People with complicated grief, like Muldberg, struggle to recover. Their grief becomes what Bonanno calls “chronic”, staying at a high level of intensity for years.
One school of thought that has influenced Shear is called the dual-process model: grief is stressful, so we alternate between confronting the emotional pain of our loss and setting it aside. Even grieving people, research has shown, have moments of positive emotion in their lives. Hope returns gradually. If the stage model maps a single, clear path through grief, then the dual-process model could be seen as a charting a wave pattern through grief.
It’s now an axiom of grief counselling that there’s no one right way to grieve. That seems like a good thing, but it’s also a problem. If everyone grieves differently, and there’s no single theory of how grief works, then who’s to say that someone like Muldberg isn’t making her way through grief in her own way, on her own clock? Even though it was clear to her and to those around her that, four years after her son’s death, she was still suffering, bereavement researchers don’t agree about how to explain why her grief was so prolonged – or what to do about it.
Shear, who is in her early 70s, is the warmest shrink you’ll ever meet. Everything about her conveys equanimity, especially the way she can sit with the stories of patients whose grief is unrelenting.
It wasn’t always that way. “At the beginning,” she tells me, she was “afraid to sit in the room with someone who was really intensely grieving because I was still a little bit uneasy with death and dying, but also because it makes you feel so helpless – because you feel like there’s nothing you can do”. The grieving person, she says, “feels like the only thing that’s going to help” is bringing back the person they are grieving – “and you agree”.
“Grief is not one thing,” Shear says. “When it’s new, it crowds out everything else, including even people and things that are actually very important to us. It stomps out our sense of ourselves, too, and our feelings of competence. We think of grief as the great disconnector, but over time, it usually settles down and finds its own place in our lives. It lets us live in a meaningful way again. It lets us have some happiness again.”
Two weeks later, I’m jammed into a hard plastic desk in an overheated university classroom listening as Shear, who is professor of psychiatry at Columbia’s School of Social Work, explains the underlying principle of her work, which is that “grief is a form of love”.
She quotes me C S Lewis’s A Grief Observed to explain what she means: “Bereavement is an integral and universal part of our experience of love. It is not the truncation of the process but one of its phases; not the interruption of the dance, but the next figure.” This is called an attachment approach to grief. It’s shared by many grief researchers and counsellors, and it can be traced back to the British psychiatrist John Bowlby. Attachment is what gives our lives security and meaning. When an attachment is severed by death, Shear says, grief is the response to the lost attachment. Peel back the psychological theory, and what you’ll find is something that anyone who has experienced grief knows intuitively: “Nature is so exact, it hurts exactly as much as it is worth, so in a way one relishes the pain, I think. If it didn’t matter, it wouldn’t matter,” writes the novelist Julian Barnes in Levels of Life, his extended essay on grief following the death of his wife.
Shear explains that it’s our close bonds to those dearest to us that also help us want to care for other people and confidently explore the world. These attachments are woven into our neurobiology. The longing and yearning of acute grief, and the feeling of unreality that comes with it, she says, are symptoms of just how much grief short-circuits our bio-behavioural wiring.
Shear agrees with Bonanno that over time most grieving people integrate their loss into their lives. But people with chronic grief face some complicating factor. Complicated grievers tend to be women. They are often excellent carers but not so good at taking care of themselves or accepting help. Often, their emotional reserves of self-compassion and self-motivation have been drained. Shear says that “we don’t grieve well alone”, but frequently people with complicated grief become isolated because their grief has remained at high levels for so long; the people around them may feel that they “should have gotten over it by now”.
Shear believes that adapting to grief and loss is “a normal, natural process”, she says. “We’re not talking about grief itself being abnormal. We’re talking about an impedance in some problem of adaptation.” Think of it this way: her therapy jump-starts a stalled process, the way a defibrillator restarts a stopped heart.
Shear’s office, with its striped beige wallpaper and mahogany furniture, is so spotless it would feel like a hotel room it if weren’t for the picture of her grandson as a chub-cheeked toddler on her panoramic Apple monitor. It’s a sticky day in July, and she’s telling me how she came to study and treat grief.
In the 1990s, Shear was researching anxiety and panic disorders at the Western Pennsylvania Psychiatric Institute and Clinic when she became involved with research on depression and anxiety in elderly people. One of the common triggers for depression in the elderly is the death of a spouse, and the team she was working with identified a cluster of symptoms in depressed patients that weren’t depression. They expressed deep yearning, were often driven to distraction by thoughts of their deceased spouse, and had great difficulty accepting death, to the point that persistent, acute grief became a risk to their physical and mental health.
To differentiate grief-related symptoms from depression and anxiety, Shear worked with a research team that included psychiatric epidemiologist Holly Prigerson. It was Prigerson who, in 1995, had published a questionnaire that identified complicated grief as a specific syndrome and could accurately assess its symptoms. Shear has relied on it as a diagnostic and assessment tool in her research ever since. Shear and her colleagues also used it to design a new treatment, complicated grief therapy. Prigerson, who now holds an endowed professorship at Weill Cornell Medicine in New York City, and directs Cornell’s Center for Research on End-of-Life Care, continues to work on the epidemiology of prolonged grief.
In their first meeting, Shear asked Stephanie Muldberg to keep a daily grief diary, recording and rating her highest and lowest levels of grief. Muldberg kept this diary for the duration of the therapy. Every day for almost half a year she was paying such close attention to her grief that it became inscribed in her daily life. Not that her grief wasn’t already a pronounced everyday presence, but now, with Shear’s help, she was facing it head-on rather than avoiding it. The diary was one of several techniques Shear used to help Muldberg look her grief in the eye.
Muldberg says that the grief diary helped her pay attention to herself in a way she hadn’t been able to do in the four years after Eric’s death. Using the diary, she began to see that she had some happy moments interspersed with some low times of grief. “There were always going to be hard times during the day for me, but I wasn’t only focusing on the hard times, I was starting to learn how to move forward.”
Complicated grief therapy (CGT) takes place over 16 sessions, structured, Shear says, by techniques adapted from approaches used to treat anxiety disorders, including cognitive behavioural therapy, a well-researched approach to psychotherapy, and exposure therapy, used to treat avoidance and fear in anxiety disorders. The structure itself is part of the therapy, she says, because structure is reassuring to people who are feeling intense emotions.
Shear has been testing CGT since the mid 1990s. In 2001, she and her colleagues published a small pilot study that showed promising results. Since then, they have published several randomised controlled studies supported by the National Institute of Mental Health, demonstrating that CGT helps patients who have complicated grief to reduce their symptoms better than conventional supportive grief-focused psychotherapy. Shear is a pioneer, but she’s not an outlier. Currently a group therapy version of CGT is being studied at the University of Utah. Researchers in the Netherlands and Germany are also exploring variations on cognitive behavioural therapy and exposure therapy to treat traumatic and prolonged grief. And a recent study in Wales confirms one of Shear’s main findings, which is that the techniques in her treatment are more effective together than separately.
A few sessions into her treatment, Shear asked Muldberg to do something she had never done, which was to tell the story of the day Eric died. It’s a technique Shear adapted from prolonged exposure therapy that she calls “imaginal revisiting”. At first, Muldberg says, she was apprehensive because she wasn’t sure if she could remember what had happened. Over the course of three weekly sessions, Muldberg told the story of Eric’s death, rating her levels of emotional distress as she did. The purpose of this technique is to “help people connect with the reality of the death in the presence of a supportive person who is bearing witness to it,” Shear explains. “We want to keep grief centre stage,” she says. “If you do let yourself go there, paradoxically your mind finds a way to face that reality and to reflect on it.”
Then, as with the grief diary, Muldberg had “homework”: listening to a tape of herself telling the story every day between sessions. At first, this was distressing, but she gradually learned how to manage her emotions, recognising, she tells me, that she wasn’t going to forget Eric. The intensity of her feelings began to lessen, so that by about halfway through the therapy she began to feel better.
Muldberg admits she was sometimes sceptical of what Shear was asking her to do, and she says sometimes she pushed back. Part of CGT includes psychoeducation, in which the therapist explains to the patient the premise and purpose of the therapy. Shear’s explanations, Muldberg says, helped her understand that “there was a reason I was feeling this way”. She describes Shear’s approach as “I don’t want to push you but we’re going to figure out ways that you can accomplish these things, feel good about them, and do them.”
A few weeks after Muldberg started revisiting the story of Eric’s death, she worked with Shear to make a list of the places and activities she had been avoiding since he died, and gradually started trying to face them. Shear calls this “situational revisiting”, a form of prolonged exposure therapy. “We do this to provide people with an opportunity to confront the reality of the loss and actually understand its consequences, because being there without the person is going to be different than being there with the person. We want people to start to reflect on that,” she tells me.
For Muldberg, many of the things she had avoided were the everyday parts of being a mother, such as going to the grocery store, but she says, “I didn’t realise how much harder avoidance was than doing some of these things.” Together with Shear, she broke down tasks, such as driving past the baseball field where Eric had played, into smaller steps until she could do them again.
Sitting in that classroom listening to Shear explain these exercises makes my chest tighten until my heart aches. I can’t imagine doing them myself, let alone how anyone with complicated grief could withstand them. It seems like a wrenching exercise in repeatedly tearing a scab off a wound.
When I ask Shear about this she acknowledges that her approaches are counter-intuitive because they “ask people to go toward their grief”. She tells me it’s by explicitly detailing and describing their grief that people with complicated grief become unstuck, as they learn to shift back and forth between the pain of grief and restoring their lives. Shear is more interested in having patients engage with the therapy techniques than she is with getting them to reach a certain point. To her workshop audience, she puts it this way: “We do not try to lower grief intensity. I’m just trying to turn the Titanic one degree.”
In one of my conversations with Muldberg, I remark that CGT seems counter-intuitive, almost confrontational, and that these exercises seem extremely emotionally demanding. She is quick to correct me. Therapy was challenging, she says, but it came as a great relief to finally feel understood and have the support to face Eric’s death. “When I started to do things, I started to feel better,” she tells me.
For Shear, “feeling better” is a sign that our natural adaptive abilities are kicking in, allowing a person who is suffering from complicated grief to begin the emotional learning process that ultimately helps grief subside. This also creates an opening for the person to begin to reimagine their life after a devastating loss.
At the same time that Shear was helping Muldberg come to terms with the reality of Eric’s death, she was also helping her begin to envision the future. Part of losing someone very close, Shear says, is that we lose our sense of identity. Part of grieving is regaining it.
In another CGT exercise, the therapist asks a scripted question: “If someone could wave a magic wand and your grief was at a manageable level, what would you want for yourself? What would you be doing?” Someone with complicated grief can’t imagine a future without the person they’ve lost, or without the unrelenting, intense grief that’s taken up residence in their life. It’s a future-oriented question for someone who has lost sight of the future. Just asking the question, Shear says, can activate our innate exploratory system and spark hope.
One way to think of the therapist’s role in CGT is that she’s teaching her patient what grief is. “Loss is a learning process. The problem is, it’s unwanted information,” says therapist Bonnie Gorscak, one of Shear’s long-time collaborators and a clinical supervisor at the Center for Complicated Grief. Learning from loss, Gorscak says, means being able to “stand in a different place and look at grief”, to approach the pain it causes, experience it, and have some respite from it. It’s a counter-intuitive approach for therapists, too. Sitting with someone with complicated grief, Gorscak says, “is some of the worst pain I’ve ever sat with”.
CGT is challenging, but it works. Still, Shear’s therapy has sparked controversy, starting with the very idea that there is a form of grief so severe and debilitating that it meets the definition of a mental illness.
In recent years, Shear and a group of colleagues have advocated for a grief disorder to be included in the Diagnostic and Statistical Manual (DSM), psychology’s diagnostic bible, because they believe complicated grief is a clear-cut, diagnosable syndrome, separate from depression, anxiety or post-traumatic stress disorder. (Shear and Prigerson, once collaborators, now disagree about the best way to diagnose complicated grief, but they agree it should be viewed as a mental disorder.) Without sanction by a DSM diagnosis, psychotherapy in the US is not covered by health insurance. Without insurance reimbursement, CGT is out of most people’s reach. In 2013 the DSM-5 listed Persistent Complex Bereavement Disorder as a “condition for further study”, calling for more research on the issue.
The major issue therapists have with complicated grief is that they believe it pathologises a fundamental human experience. Leeat Granek, a health psychologist at Israel’s Ben-Gurion University, is concerned that including a grief disorder in the DSM could narrow the spectrum of acceptable ways to grieve and create a narrative that would distort the ways people understand their own grief. She believes that this would lead to “a lot of shame and embarrassment for the mourner because the expectations around grief are no longer realistic”.
Donna Schuurman, senior director of advocacy and training at Portland’s Dougy Center, which supports grieving children and families, questions the idea of a grief disorder. She rejects the use of terms such as “complicated”, “debilitating” or “persistent” to describe grief reactions and as the basis for constructing a diagnosable syndrome. Schuurman agrees that “grieving people may have chronic issues or chronic problems related to what has happened after someone dies”, but says that “often those issues were already there before the death”, and that “chronic issues ought not to be framed as mental disorders of grief”.
“Medicalizing or pathologizing the experience of someone who is having difficulty after a death does not do justice to the full social and cultural context in which he or she is grieving,” she writes. “Grief is not a medical disease, it is a human response to loss. Many people who are experiencing severe challenges after a loss are doing so because the social expectations around them are not supporting them.”
Instead of labelling complications of grief as symptoms that define a disorder, Schuurman says she would focus on the experiences and behaviours that were contributing to any “serious challenges” a grieving person was facing. “We can label it depression, drug or alcohol abuse, etc., as any good therapist should do,” and “try to look at underlying issues, and not just symptoms, to be of help,” she explains. Good professional help, she believes, “could take a variety of forms and theoretical backgrounds”.
New scientific research on grief, Shear’s among it, is challenging some of the foundational premises of grief counselling as it has been practised, often in community settings. As George Bonanno discovered, there are several common trajectories through grief, meaning that there are some commonalities among grieving people as they adapt to loss. Still, Shear says, “each experience of grief is unique, just as each love experience is unique”. CGT, she says, “helps people find their pathway to adapting to loss”.
One way to answer the question of whether or not grief is a disease is to ask if the treatment provides a cure. Stephanie Muldberg describes her grief as “a wound that wasn’t healing”, but CGT isn’t a cure the way antibiotics cure an infection. Grief doesn’t end, it just changes form. Muldberg says CGT taught her how to live with grief as part of her life. She still carries her grief for Eric with her, but she is also back in the world. She travels with her husband and daughter. She volunteers for the Valerie Fund, an organisation that supports families of children with cancer and blood disorders, and that helped Eric and their family when he was sick.
I ask Shear when her fear of sitting with intensely grieving people had subsided. “Well,” she says, “there’s this entire field of study called terror management.” I was expecting her to tell me about her feelings but she answers by telling me how research explicated them – exactly what she’s done in designing a therapy for complicated grief. I look up terror management: it’s the theory that in order to deal with the fear of our own mortality, we find ways to find meaning and value in our lives – like helping people. In that sense, what Shear has done with CGT is to create a form of evidence-based compassion. It’s compensation, perhaps, for the existential helplessness of the therapist, but it also compensates for many of our communal failures helping people grieve. We are too busy, too secular, too scared to deal with grief. It’s hard for Western culture – American culture in particular – to sit with something that can’t be fixed.
The more I thought back over my conversations with Stephanie Muldberg, the more I thought about how her therapy with Shear helped her put Eric’s death in context of her life story. The idea that a story needs a beginning, middle, and end goes back to Aristotle. People with complicated grief can’t see the arc of their own stories. They can’t get to what classic plot theory calls denouement – resolution. Most of us, when faced with a loss, find a way of putting what happened into the form of a story: this is what happened, this is who I was, this is what the person who died meant to me, and this is who I am now. But people who have complicated grief can’t do this.
Grief is a problem of narrative. A story, in order to be told, needs a narrator with a point of view who offers a perspective on what happened. But you can’t narrate if you don’t know who you are. Many of Shear’s therapy techniques are about learning to narrate in the face of great pain and devastating losses. Start with the grief diary, which records the emotional story of your everyday life. Follow that by imaginal revisiting, akin to a wide-angle shot in cinema, which helps organise a story arc amidst intense emotion.
Plotting out the story restores the narrator and the narrative. Then, you can begin to imagine a new story, a new plot for yourself. It’s not a choice between grief or living, remembering or forgetting, the way Muldberg once worried it was. The book of life is a multi-volume set. A sequel can only start when the first volume is brought to a close and when the narrator knows she’s going to be all right.
Sue Armstrong meets Pan Pantziarka, whose son George had Li–Fraumeni syndrome and lived with cancer from early childhood.
One of the bleakest moments in Pan Pantziarka’s long struggle with Li–Fraumeni syndrome was when doctors at Great Ormond Street Hospital in London told him there was nothing more they could do for his little boy. They had exhausted all options for treating his son’s cancer, “and at the age of four George was sent home to die,” he says.
George had been diagnosed at the age of two with rhabdomyosarcoma, a rare tumour of muscle tissue that appeared as a hard lump beside one eye. He had been through several bouts of surgery and many rounds of chemotherapy, and then radiotherapy as the original tumour returned, but nothing would shift the last traces of his disease, and his prospects looked grim.
In fact, George had 11 years of remission and regular childhood, and his family’s paralysing anxiety was beginning to lift. Then, he developed skin cancer. His doctors attributed the small lesion behind his ear to the radiotherapy he had received a decade earlier.
At this stage, no one except his father was prepared to link George’s cancer to his mother’s death from ovarian cancer just a year after he was born. For such a long time, says Pantziarka, “the mindset was just that we were an incredibly unlucky family”. It was not until George developed a third cancer, in his jawbone, within months of his skin cancer diagnosis, that alarm bells began to ring. The family was sent for genetic testing, and they heard of Li–Fraumeni syndrome for the first time. George, it transpired, had a mutant copy of p53, most likely inherited from his mother, and was extraordinarily susceptible to cancer.
While it was a relief to know at last what they were up against, the diagnosis of Li–Fraumeni was devastating. “The level of paranoia is just unbelievable,” says Pantziarka. “A child comes down with a bit of a cough, and most parents think, ‘Oh, it’s just a chill’. But for a Li–Fraumeni family every cough could be the harbinger of something terrible. The paranoia is isolating. But even more isolating is the fact that many of the professionals they come into contact with – you know, GPs, school nurses – have no understanding of what this is.”
Pantziarka was worried too about his daughter, Despina, seven years older than George: was she also a carrier of the mutant gene? The wait for her results was gruelling, but the news was good. For George, however, things got steadily worse. Within two years of developing osteosarcoma in his jaw, he had reached the end of the road again with conventional therapy. But he refused to give up hope. He and his father travelled to China, where novel ideas for treating cancer were being trialled. The expedition – involving interminable journeys on trains, planes and local buses for the very sick boy, tedious weeks in spartan accommodation and cheerless hospitals, the loneliness of an alien culture, and mighty struggles to communicate – sapped the strength and morale of father and son. And in the end it was too late for George. He returned home even more ravaged by disease and now suffering the side-effects of his many treatments, including a dropped foot from nerves damaged by the therapy. He died in 2011 at the age of 17.
“Most people, when they hear my family’s story, think it’s absolutely horrendous,” says Pantziarka. “But actually it’s not untypical of Li–Fraumeni syndrome. There are families in crisis, and then there are families who are waiting for the next crisis… It’s horrible, it really is.”
Since George’s death, Pantziarka, a data scientist by training, has used the expertise he developed from voracious reading about his son’s condition to apply his skills to cancer. Today he works for a non-profit foundation, the Anticancer Fund, set up by medics and scientists to encourage research into promising new treatments for cancer – especially the repurposing of existing drugs – that are ignored by pharmaceutical companies because they are a poor financial proposition. The Fund also offers direct support to patients, helping them to navigate the wealth of information on treatments and understand the best options for themselves.
Pantziarka is coordinator of the repurposing drugs project. “When we first started talking to people it felt like we were banging on a closed door,” he says. But as word has spread about trials with drugs like metformin, originally designed to treat diabetes and now being tested against cancer, things have begun to change. “It feels like we’ve turned a corner and there’s a massively increased interest in this idea.”
An extra from Brazil’s cancer curse
When discussing death, the words we choose can speak volumes.
In the 1970s and 1980s, Susan Sontag wrote about the metaphors that surround TB, AIDS and cancer, arguing that their use can add to the suffering of patients, stigmatising them and encouraging victim-blaming.
More recently, much has been written, often by people with cancer or other diseases, protesting against warfare metaphors. On a BBC World Service radio programme, writer and presenter Andrew Graystone says: “I had to try and love these cancer cells because I didn’t want to declare a civil war in my own body, I didn’t want to be a battleground.” Rob A Ruff, head of chaplaincy services at a Minnesota hospital, writes: “We rarely leave room in the warfare metaphor for the realization that some battles cannot be won despite everyone’s best effort.”
While some patient groups, charities and government bodies are removing references to fighting and battles from their documents, making way for discussions of journeys and pathways, others are still embracing these metaphors. Graystone writes: “the advertising agency that designed Cancer Research UK’s recent Race for Life campaign wanted to turn their traditional sponsored runners into ‘an army who run, dance and sing all up in cancer’s stupid stupid face with the new line of Cancer We’re Coming To Get You’.”
Professor Elena Semino and colleagues at Lancaster University have been studying how metaphors are used in communication about the end of life. Based in the Department of Linguistics and English Language, they have assembled a set of over 1.5 million words, collected from interviews and from online forums where patients, carers or healthcare professionals meet to talk with their peers. They used the words as a dataset to investigate how and when people in these groups use particular types of metaphors – whether related to sport, violence or any other theme.
This work has shown that, despite the backlash, violence metaphors are still used by people with cancer, in a variety of ways and to describe different situations. One of the most striking things for Semino is how often patients use them, and how often they’re empowering. “They use them to encourage each other,” she says. “‘You’re such a trooper!’, ‘keep up the fight!’”
One of the areas in which patients use these metaphors is when they’re talking about going into hospital or preparing to meet health professionals, especially consultants. Patients also describe the effects of the disease with violence metaphors (cancer attacking, invading or strangling them) as well as their response to it (being a fighter, sharpening weapons). They also use them to describe their treatment, their relationship with family and friends and even their own mental state (“I am destroying myself with my mind right now, torturing myself”).
“Metaphors are resources and tools for making sense of our experiences and expressing our emotions and our feelings,” says Semino. “Different metaphors are more or less appropriate for different people at different times – or even for the same person at different times.”
Semino and colleagues are now working on a ‘metaphor menu’ to help people with cancer talk about their disease, and are looking for feedback on the project.
“Hopefully by sharing our data we can help doctors know what to listen out for and react in a slightly more nuanced way – if something seems to be helpful, accept it or even use it.”
How do you tell someone that they’re seriously ill, or even dying? Chrissie Giles explores how doctors learn and how they deal with the stress and trauma, for both their patients and themselves.
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I was 14 when I was told that Dad was dying.
I was sitting on the floor of our lounge. Mum said that she had some news. Sensing the worst, I fixated on the newspaper open in front of me, staring at an advert for German cut glass. It was cancer, in his pancreas, and he might only live a few more months.
They were going to try an operation, she told me and my sister, to reduce the pain. As a nurse, she must have known that this was unlikely to work, but she knew her audience and didn’t want to overload us with information. She must also have known that pancreatic cancer has one of the bleakest outlooks, due in part to a lack of symptoms in the early stages. By the time you start to notice the nausea, jaundice or weight loss, it’s too late to hope that it’s something less serious.
That night, as I wrote my diary, I could think only about how I felt. Reading it back now I wonder what it was like for my mum, still reeling from the news herself and having to tell the rest of us.
As a doctor, Kate Granger often deals with discussions of bad news and end-of-life issues. But there’s another reason the subject interests her. Three years ago, at age 29, she was diagnosed with a very rare and terminal form of cancer that affects soft tissue. She’s spoken and written widely about her experiences living with a terminal disease. She spearheaded the #hellomynameis campaign, to get people working in the NHS to introduce themselves to every patient they meet. She’s planning to live-tweet her own death.
Granger was diagnosed with cancer while on holiday in the USA. “I came up against some tough episodes of breaking bad news when I got back to the UK,” she says. “When I got my MRI results, I was told when I was by myself by a junior doctor who didn’t know what the plan was going to be.”
In pain and alone, she was told “without a warning shot” that her MRI scan showed that the cancer had spread. “He was basically giving me a death sentence. He sort of couldn’t wait to leave the room and I never saw him again.”
Her experiences have shaped her as a doctor. “I think I was a fairly compassionate, empathetic doctor, but having been through all I’ve been through, when I came back to work I was just so much more aware of how body language is really important, how you think about the impact of bad news on an individual more than just viewing ‘telling Mrs Smith that she’s got lung cancer’ as a task.”
I ask several doctors to share their experiences and the patients that stick in their mind. One remembers a woman who came in soon after Christmas. She’d been in and out of the doctor’s over the last nine months or so, with general symptoms that are all too easy to ignore: feeling tired, swelling. Then she had suddenly become jaundiced and short of breath, so a relative brought her into A&E.
It was one of those situations, the doctor says, where you pull the curtain back and immediately think, “This is not good”. “On very few occasions do you touch something and say, ‘This is cancer’.” When she examined the patient’s abdomen it felt “rock hard”.
“She kept saying to me, ‘It’s going to be fine, isn’t it?’ And I’m saying, ‘We’ll do everything we can, let’s just do a few tests and figure out what’s going on.’ At that stage in my mind, I knew it was bad, but I still had to figure out exactly what flavour of bad it was.”
The woman was anxious to be home on New Year’s Eve to make a call to family overseas. But blood tests confirmed that she’d need to stay.
“She said to me, ‘Tell me the worst-case scenario.’ I looked at her. She looked at me. And in my mind I was thinking, ‘She’s not ready for this diagnosis.’ Then her relative stepped in and she said, ‘No, no, she means what’s the worst-case scenario in terms of how long does she have to stay in hospital?’
“At that moment, you realise that we all know exactly what we’re talking about, but we’re all accepting it to different degrees.”
Compartmentalisation seems to be important in coping – she mentions several times that bad news, death, is part of the job. “You have to be strong for the family. I can easily go back into the staffroom and cry my eyes out, but in that moment I have to be there, I have to be the hand to hold, or the shoulder for the patient to cry on.”
The doctor speaks of the first patient she cared for, a man with metastatic prostate cancer. She was called into his room by his wife, and as she arrived, the man took his last breath. His wife broke down onto the floor in front of her. “In that moment, you have to say, ‘I’m sorry, he’s gone.’ And you kind of just have to suck it up and be there for them in that moment because that moment is everlasting for them.”
It’s an office that could be anywhere, except for the clinical examination bed in the corner, complete with curtained cubicle. The A4 sign blu-tacked to the door reads: “Room booked for breaking bad news all day”.
Six medical students sit listening. “They’re real. They cry, they shout,” the facilitator, a doctor, tells the circle in front of her. Nerves crackle in the air, a few people let out self-conscious laughs. The facilitator is referring to the two actors who have come to rehearse scenarios with the students, who are one year from being qualified doctors.
Understandably, they have a lot of concerns: about getting emotional, whether or not they should touch patients, saying the wrong thing, not saying the right thing, not saying anything at all.
The scenarios are given out. The students’ eyes hurriedly scan down their sheets of paper. Cringes. Sharp intakes of breath. One scenario is based around telling a parent that their son has suspected schizophrenia. Another, that a person’s relative has unexpectedly died in hospital. One peers over his neighbour’s shoulder. “You got the short straw,” he says, shaking his head.
When the time comes, his neighbour heads for the door. “You might want to take in some tissues for this one,” the facilitator tells him. “Yeah, for me,” the young man replies.
The rest of the group watch on a live video link, seated in plastic chairs in a half-moon in front of the screen. They touch their faces self-consciously, arms crossed protectively across their bodies. The speaker hisses.
In the room sit a couple. The woman fiddles with her handbag, refusing to accept the news. The man stares silently at his hands, fists clenched around his mobile phone. “Is that true, or just something you say?” he says aggressively to the young doctor. He’s just been told that his baby, born at just 26 weeks, has severe brain damage and is unlikely to survive.
The students’ eyes dart to each other across the room. A shake of the head, a smile, a wince, sensing their colleague’s pain – pain they are all going to feel for themselves sooner or later.
Telling the truth takes its toll.
Researchers at Aristotle University in Greece have found, perhaps unsurprisingly, that telling a (pretend) patient that they had cancer was more stressful for a doctor than concealing the diagnosis. Doctors who don’t tell the truth, they suggest, may be doing so to keep control of the situation and avoid their and their patients’ emotional reactions.
The stress of having ‘bad news’ conversations can lead some doctors to put them off, or to deliver news in a less-than-optimal way, says Dr Laura-Jane Smith, a respiratory registrar in training who works in London.
Finding the right time and place to have conversations about things such as progression of disease can be challenging, and patients react in all sorts of ways. “Some people will want to have that conversation when they realise that they’re unwell. Some people will strongly say, ‘I’ve been in hospital before, there’s no way you’re sending me to [intensive care],” says Smith. Some just don’t want to know.
There’s also the danger of shooting the messenger. Katherine Sleeman, medical doctor and lecturer at King’s College London’s Cicely Saunders Institute, quotes froma study that found that patients perceived doctors as better communicators when they gave a more optimistic view of palliative (non-curative) chemotherapy. “It seemed as though you can inform patients that a disease is incurable but at the expense of the relationship with them, which is fascinating,” she says.
The demands that patients and families put on doctors – to find a balance between honesty, truth and hope, to be human, yet not too human, to know everything, even the unknowable – add to the stress.
“I think we find it difficult to admit that we don’t know,” says Dr Stephen Barclay, Senior Lecturer in General Practice and Palliative Care at the University of Cambridge, “because patients come to us, and we look to ourselves to be people who investigate, make decisions, make a diagnosis and have an action plan.”
He thinks that doctors find it quite emotionally difficult to acknowledge uncertainty – something born of not the doctor’s incompetence but more the unpredictability and uncertainty of so much of medicine, particularly the later stages of many diseases. “It is frightening. No one ever enjoys having these sort of conversations,” he says.
It takes a lot of conversations to find someone who can tell me – in full-colour, human, non-clinical terms – what it’s actually like to have to, on a daily basis, tell people that they’re seriously ill. Finding doctors to talk to isn’t the problem. Our conversations start promisingly enough. But somewhere along the line, everything comes through a professional filter. They become less clear, less direct, obscured in medical language, cloaked in the self-preserving bubble of the passive voice or generalised to just any doctor’s experience. “You can become upset by it but…”
For my sister, a doctor for eight years, it isn’t so much telling the bad news that stays with her, but the small, seemingly insignificant things that went along with it: noticing a pristine newspaper, unread, on the bedside locker of a patient who had just died, despite attempts at cardiopulmonary resuscitation. Finding a cheque waiting to be paid in in the wallet of a man who’d had a fatal accident.
These things – the physical manifestations of the nearly-done, not-done, never-to-be-done – seem to resonate. Unopened birthday presents, cancelled holidays, unworn clothes: all symbols of a life ending prematurely, of potential diminishing, of a future fading. They’re what remain after the practicalities of dealing with a patient and their relatives are long forgotten.
You do what you can to process it, one doctor says. Review what has happened from a medical management point of view: analyse, rationalise, conclude. Did we do everything we could? Would we do anything differently next time? Have a cup of tea, splash your face with cold water, have a cigarette, get on with the next patient.
Then your shift ends.
Self-medication takes a variety of forms. For some doctors, it’s straight to the pub. One (teetotal) doctor’s prescription: “Go home, order a pizza, eat lots of ice cream, sit in front of the TV and watch trash.” Another has a friend who’s also a doctor, and they’ve agreed that either of them can call the other at any time and vent.
Annabel Price, Consultant in Liaison Psychiatry at Addenbrooke’s Hospital, Cambridge, says that some doctors are more vulnerable to being affected emotionally by breaking bad news than others. This may be because they are struggling with bereavement or mental health issues in their own lives. Or it may happen if there’s a patient or medical case that they relate to particularly closely.
Doctors need to be resilient, but so do the organisations that they work in. “You would hope that if a situation is very difficult for an individual… the team then would help them to manage it, either by allowing them to step back or by providing them with extra support to be able to do that,” says Price.
“I would be very optimistic if I said that that works 100 per cent well every time and that all teams function in that way, but that’s the ideal that I think we should be working to: recognising that doctors are people, just as much people as our patients are, fallible humans who have our strengths and weaknesses, and weak points and struggles, just like anybody else.”
Dedicated services do exist for doctors to get help with their mental health, for example, but are those in need willing or able to find and use them?
One paper, advising junior doctors on how to look after their mental health, identifies three challenges for doctors seeking medical help. The first is stigma, including the fear that seeking help will lead to their fitness to practice medicine being challenged. The second is the idea that doctors can feel that they are somehow “letting the side down” if they need time off. The last is barriers to care. “Doctors do not make good patients,” the authors write. “Typically they do not follow their own health care advice, they self diagnose and self medicate, and they present late after ‘corridor consultations’. Once unwell, doctors are often reluctant to consult a general practitioner (even if registered) or to take time off work.”
Moreover, healthcare systems are far from perfect. Resources – including the time, space and supportive colleagues conducive to productive, healthy working lives – are often limited.
I asked Twitter if doctors need, and can get, support when breaking bad news. An Australian doctor summed it up: “Can’t even get time at work to go to the toilet while working in [the emergency department], let alone support when breaking bad news”.
When you are giving bad news about a life-limiting illness, many patients and their families want to know all they can about the condition: treatments, cures and how long patients survive. But the data aren’t always available. Studies are often small, or dated, or in populations of patients so different that findings are hard to extrapolate to the patient sitting in front of you. Everybody and every body is different – so certainty can be in short supply, at the very time when people want it most.
“How long have I got?” is an especially dreaded question. No clinician I speak to says that they give patients actual numbers, often preferring to talk about whether it is a matter of years, months, weeks or days. This is because prognostication – judging the course of a disease or condition – is notoriously hard. While there are ways to assess imminent death in, for example, a patient with terminal cancer, it can be extremely difficult to estimate how long a patient with frailty, dementia or a chronic lung condition will live.
Research shows that doctors tend to overestimate the survival of terminally ill patients, predicting them to survive more than five times as long as they end up doing.
Stephen Barclay never gives numbers to patients asking about survival. He reinforces this practice to his medical students: “I teach the students very firmly not to give numbers because often the information isn’t there,” he says. “And if the information is there, it’s average survival and by definition of an average, 50 per cent of patients live longer and 50 per cent live shorter.”
Giving people a ‘sell-by’ date is not only virtually impossible but can be harmful. “I’ve certainly had a number of patients who have been told, ‘you’ve got six months’, and when six months comes they assume they’re going to die today and that can be really difficult if they’re clearly living longer,” Barclay says. Conversely, if things are clearly moving on a lot more quickly then having a particular date in mind can encourage people to have unrealistic hope.
Laura-Jane Smith agrees that you have to choose your words carefully. “What I have realised from having spoken to patients is that they never forget that conversation, and actually quite often they don’t forget the specific words that you use,” she says.
“You fall into the trap of wanting to dress it up, and wanting not to use words like ‘cancer’ and ‘incurable’ and ‘life-threatening’,” she says. “The more that I do it, the more I try and find ways to say things as clearly as possible without being blunt and I think that’s much more effective.”
Individual words matter. Professor Elena Semino and colleagues at Lancaster University have been conducting a study of how certain kinds of language are used in communication about the end of life. They’ve created a set of over 1.5 million words, collected from interviews and online forums, where patients, carers or healthcare professionals meet to talk with their peers.
Violence or war metaphors (“battling my disease”, “keep up the fight!”) can be disempowering or disheartening for people with cancer, potentially demanding constant effort or implying that a turn for the worse is a personal failure. But in other contexts, they can empower people, helping someone express determination or solidarity, or bringing a sense of meaning, pride and identity.
“You don’t need to be a linguist to realise what metaphors a patient’s using,” says Semino. Doctors should ask: are those metaphors working for the patient at that point? Are they helpful, giving them a sense of meaning, identity, purpose? Or are they increasing anxiety?
While patients and their relatives may want to delay or avoid conversations that discuss death directly, this isn’t a benign act of self-preservation. A study of over 1,200 patients with incurable cancer has shown that those who had early conversations about the end of life (in this case, defined as before the last 30 days of life) were less likely to receive “aggressive care” in their last days and weeks. This included things like chemotherapy in their last two weeks, and acute care in a hospital or intensive care unit in their last month.
Are doctors obligated to give this kind of information to patients? “The GMC [UK General Medical Council] guidance is that you should tell the patient all he or she wants to know; you should be honest; you should disclose as much as you can about what’s going on,” says Deborah Bowman, Professor of Bioethics, Clinical Ethics and Medical Law at St George’s, University of London.
“The way contemporary ethics is taught, learned, understood, it’s more about different types of knowledge and different types of expert,” Bowman says. “You may well be an expert on radiotherapy, but the patient is the expert on his or her own life, preferences, values etc.”
While patients have the right to know, they also have the right not to know. Stephen Barclay and his research group looked at the timing of conversations about the end of life with patients who had conditions such as heart failure, dementia and the lung disorder chronic obstructive pulmonary disease. “There are a significant proportion of patients who appear not to want to have early open conversations, and some never wish to have conversations at all,” he says.
Barclay cautions that the urge for so-called “professional tidiness” – getting these end-of-life conversations out in the open – can lead doctors to place themselves rather than their patient at the centre of the care. There’s no one-size-fits-all approach, he says. It’s about the offer of a conversation rather than the conversation necessarily happening.
For Katherine Sleeman, what – and how – you tell patients with life-limiting illnesses about their condition is incredibly important. She believes that having open, honest conversations allows doctors and nurses to establish the patient’s preferences: everything from where they’d like to die to the level of medical intervention they’d want if they stopped breathing or suffered a cardiac arrest.
But it’s not just about medical care. The last thing somebody does may be as small as writing a letter or transferring money from one bank account to another to cover their funeral costs. But if they’re not told that they’re dying, then they’re being denied a last opportunity to exert control over their own life.
Good communication can even increase hope. Sleeman cites a small study of patients with end-stage renal disease. The researchers found that being given more information earlier on in the course of an illness could increase a patient’s hope rather than extinguish it. “With the provision of prognostic information, new threats will be perceived, but rather than annihilate hope, it provides an opportunity to reshape hopes, making them more consistent with the future,” they wrote.
“The great fear is that we’ll destroy hope by having these conversations,” says Barclay. “There is a really quite good evidence base that actually sensitive and appropriate patient-led conversations might destroy unrealistic hope, but they do generate realistic hope.”
Unrealistic hope is ultimately unhelpful, he says, because it’s never fulfilled. He remembers a patient with advanced cancer who said that his family were planning to take him on a luxury beach holiday in six months’ time. Barclay’s response: could they go a bit sooner, have the holiday in the UK? “They clocked what I was saying, had a holiday in this country the next month – had a lovely time.” Two months later, the patient died.
Though my Dad’s terminal diagnosis came nearly 21 years ago, my mum remembers his reaction clearly. “Dad turned to me and said, ‘Well, I’ve had a good life, a very happy life’.” He was reluctant to have the operation that might prolong – but not save – his life.
I remember him coming home from the hospital soon after, to rest before the operation. We’d bought him an apple turnover, his favourite cake, but it remained uneaten. Dad was propped up in bed, writing a list of things to do. He phoned a neighbour and invited him to take the tools he wanted from our garage. He read a letter an old friend posted through the door, triggering the only tears my mum remembers.
A couple of days later, earlier than planned, he was taken back to hospital. He didn’t come home again. But the short time that he lived knowing he was terminally ill gave him the chance to say goodbye. And us the same.
Meet the donors, patients, doctors and scientists involved in the complex global network of rare – and very rare – blood.
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His doctor drove him over the border. It was quicker that way: if the man donated in Switzerland, his blood would be delayed while paperwork was filled out and authorisations sought.
The nurse in Annemasse, France, could tell from the label on the blood bag destined for Paris that this blood was pretty unusual. But when she read the details closely, her eyes widened. Surely it was impossible for this man seated beside her to be alive, let alone apparently healthy?
Thomas smiled to himself. Very few people in the world knew his blood type did – could – exist. And even fewer shared it. In 50 years, researchers have turned up only 40 or so other people on the planet with the same precious, life-saving blood in their veins.
Red blood cells carry oxygen to all the cells and tissues in our body. If we lose a lot of blood in surgery or an accident, we need more of it – fast. Hence the hundreds of millions of people flowing through blood donation centres across the world, and the thousands of vehicles transporting bags of blood to processing centres and hospitals.
It would be straightforward if we all had the same blood. But we don’t. On the surface of every one of our red blood cells, we have up to 342 antigens – molecules capable of triggering the production of specialised proteins called antibodies. It is the presence or absence of particular antigens that determines someone’s blood type.
Some 160 of the 342 blood group antigens are ‘high-prevalence’, which means that they are found on the red blood cells of most people. If you lack an antigen that 99 per cent of people in the world are positive for, then your blood is considered rare. If you lack one that 99.99 per cent of people are positive for, then you have very rare blood.
If a particular high-prevalence antigen is missing from your red blood cells, then you are ‘negative’ for that blood group. If you receive blood from a ‘positive’ donor, then your own antibodies may react with the incompatible donor blood cells, triggering a further response from the immune system. These transfusion reactions can be lethal.
Because so few people have it, by definition, rare blood is hardly ever needed. But when it is, finding a donor and getting the blood to a patient in crisis can become a desperate race against the clock. It will almost certainly involve a convoluted international network of people working invisibly behind the bustle of ‘ordinary’ blood donation to track down a donor in one country and fly a bag of their blood to another.
Forty years ago, when ten-year-old Thomas went into the University Hospital of Geneva with a routine childhood infection, his blood test revealed something very curious: he appeared to be missing an entire blood group system.
There are 35 blood group systems, organised according to the genes that carry the information to produce the antigens within each system. The majority of the 342 blood group antigens belong to one of these systems. The Rh system (formerly known as ‘Rhesus’) is the largest, containing 61 antigens.
The most important of these Rh antigens, the D antigen, is quite often missing in Caucasians, of whom around 15 per cent are Rh D negative (more commonly, though inaccurately, known as Rh-negative blood). But Thomas seemed to be lacking all the Rh antigens. If this suspicion proved correct, it would make his blood type Rhnull – one of the rarest in the world, and a phenomenal discovery for the hospital haematologists.
Rhnull blood was first described in 1961, in an Aboriginal Australian woman. Until then, doctors had assumed that an embryo missing all Rh blood cell antigens would not survive, let alone grow into a normal, thriving adult. By 2010, nearly five decades later, some 43 people with Rhnull blood had been reported worldwide.
Hardly able to believe what she was seeing, Dr Marie-José Stelling, then head of the haematology and immunohaematology laboratory at the University Hospital of Geneva, sent Thomas’ blood for analysis in Amsterdam and then in Paris. The results confirmed her findings: Thomas had Rhnull blood. And with that, he had instantly become infinitely precious to medicine and science.
Researchers seeking to unravel the mysteries of the physiological role of the intriguingly complex Rh system are keen to get hold of Rhnull blood, as it offers the perfect ‘knockout’ system. Rare negative blood is so sought after for research that even though all samples stored in blood banks are anonymised, there have been cases where scientists have tried to track down and approach individual donors directly to ask for blood.
And because Rhnull blood can be considered ‘universal’ blood for anyone with rare blood types within the Rh system, its life-saving capability is enormous. As such, it’s also highly prized by doctors – although it will be given to patients only in extreme circumstances, and after very careful consideration, because it may be nigh on impossible to replace. “It’s the golden blood,” says Dr Thierry Peyrard, the current Director of the National Immunohematology Reference Laboratory in Paris.
Blood groups are inherited, and Rhnull is known to run in families. So the next step for the haematologists in Geneva was to test Thomas’ family in the hope of finding another source, particularly as Thomas wouldn’t be able to donate until he turned 18. Things looked even more hopeful when it turned out Thomas’ grandfathers were third-degree cousins. But the tests showed Thomas’ Rhnull blood was due to two completely different random mutations on both sides. Pure chance, twice over, in the face of vanishingly small odds.
In 2013, Walter Udoeyop received a letter from an old friend back in Nigeria. Father Gerald Anietie Akata’s 70-year-old mother had a tumour in her heart, but no hospital in Nigeria could perform the surgery she needed. Akata enclosed his mother’s medical records, asking for Walter’s help.
Walter, a consultant at Johnson City Medical Center, Tennessee, knew from the start this wasn’t going to be easy. Francisca Akata’s operation would cost a daunting $150,000 minimum if she had it in the USA. Father Akata had been a pastor in Johnson City for several years, and Walter initially hoped to enlist the help of the church and hospitals his friend had served in. But neither could raise such a large amount of money.
He recalled that another friend had recently had open-heart surgery in the United Arab Emirates (UAE) for only $20,000. He phoned the hospital there, and the staff agreed to operate on Francisca. Father Akata’s parishioners in the USA and Nigeria raised the money, and three months later, Francisca Akata was flying eastwards towards the UAE.
But a few days after her admission, the doctors told Francisca that blood tests had revealed that she had a rare blood type, shared by 0.2 per cent of the white population: Lutheran b negative. To complicate the matter, she was also O negative – the uncommon, but not officially rare blood type that many of us have heard of, shared by around 5 per cent of people. The combination made Francisca’s blood so rare it would be difficult, if not impossible, to find a match for her.
Since there was no compatible blood in the UAE or any of the other Gulf States, Mrs Akata had to fly back home and wait until matching blood was found. The hospital searched for blood but couldn’t find any in the two weeks that followed.
Walter requested Francisca’s blood tests from the hospital and then began the search for compatible blood in the USA. He tried blood centre after blood centre across the country before he was referred to the American Rare Donor Program in Philadelphia, a database of all rare blood donors in America. Finally, he had located some suitable donors.
His relief was short lived because, as Thomas or Peyrard could have told him, it’s a lot harder for blood to cross borders than it is for people. “You would not imagine how difficult it is when you have to import or export rare blood,” Peyrard says. “Your patient is dying, and you have people in an office asking for this paper and that form. It’s just crazy. It’s not a TV set, it’s not a car. It’s blood.”
Sometimes sending blood from one country to another is more than a bureaucratic nightmare. As Walter now discovered, the hospital in the UAE had a policy not to accept blood donations from outside the Gulf States, which meant that Francisca wouldn’t be able to use the blood he had found in America.
The situation looked bleak. But then, after a chance meeting with a colleague, Father Akata found out about a small general hospital in Cameroon, Nigeria’s neighbour to the east, that had set up a heart surgery programme with funding from the Catholic Church. Walter got in touch with the surgeons there, who confirmed that they could do the surgery if he could supply compatible blood.
The American Rare Donor Program contacted the South African National Blood Service, which had four suitable donors listed; however, one of these was unreachable, one wasn’t able to donate until later in the year, and two had been medically retired from donating. These are all common problems with rare donors. There are limits placed on how often people can donate. What’s more, keeping track of donors can also be a challenge – some get ill or die, and others move home without updating the blood services.
There were two units of compatible blood in South Africa’s frozen rare blood bank, but frozen blood has a 48-hour lifespan, compared to four weeks for fresh blood. If it got held up at customs, or delayed for any other reason, it would be unusable by the time it reached the hospital in Cameroon. To use the frozen South African blood, Francisca would have to have her operation in South Africa. Walter was running out of options.
When he turned 18, Thomas was encouraged to donate blood for himself. There is now no frozen blood bank in Switzerland, so his blood is stored in the rare blood banks in Paris and Amsterdam. He travels to France to donate, avoiding the bureaucratic machinery that would grind into action if his blood had to be sent over the Swiss border to Paris.
The first urgent request came a few years after Thomas began donating, when he got a phone call asking if he would mind taking, and paying for, a taxi to the blood centre in Geneva to donate for a newborn baby. That moment brought it starkly home to him how valuable his blood was. It was perhaps also the first intimation that the costs of donating would ultimately be his. Some countries do pay donors (and some pay more for rare blood) to encourage donations. But the majority of national blood services don’t pay, to deter donors with infections such as HIV.
The altruistic ethos of the blood services in western Europe means that they also don’t cover donors’ travel costs or time off work, both of which would constitute payment for blood. They can’t even send a taxi to take a rare donor to a blood centre, although the blood itself can travel by taxi from the centre to a patient.
It’s something that can become a frustrating and potentially fatal problem. Thierry Peyrard told me that he was recently contacted by a doctor in Zurich asking for blood with another rare combination of negatives, for a patient about to undergo surgery. There were only four compatible donors in France, and Peyrard could only contact two by phone. One of them was a 64-year-old lady living in a village near Toulouse. Although she was more than willing to go to the blood centre in the city and donate, since she can’t drive she simply couldn’t get there.
So unless his doctor drives him over the border again – a courtesy going far beyond the call of duty between a doctor and patient – Thomas will take a day’s holiday from work, twice a year, and travel to Annemasse in France to donate, paying his own travel costs there and back.
Walter had one last chance to find the blood Francisca Akata so desperately needed: a small laboratory on the other side of the Atlantic. The modest size of theInternational Blood Group Reference Laboratory (IBGRL) in Filton, near Bristol in England, is misleading; the expertise at the IBGRL means it’s one of the world’s leading laboratories in rare blood identification.
If the donor and recipient are in different countries, the blood services of both countries will negotiate costs. The requesting country usually covers the cost of flying the blood in at 4°C, the temperature at which fresh red blood cells have to be preserved to keep them intact before transfusion.
“It’s generally a reciprocal agreement between countries so that no one who ever needs blood is penalised for being where they are,” Nicole Thornton, Head of Red Cell Reference at the IBGRL, told me. “Some countries charge a bit more per unit of blood, but there’s no hard and fast rule. Most don’t charge too much because they might be in the same situation at some point.” In the UK the charge is £125.23 per bag of blood.
Walter contacted Thornton, who searched the International Rare Donor Panel and identified 550 active O negative/Lutheran b negative donors worldwide. Because they are inherited, blood types tend to pool in specific populations, and 400 of those donors turned out to be in the UK – most of them in or around London. A flight from the UK to Cameroon would be much shorter than a flight from the USA. And the blood would be fresh.
As the blood was available, and because it wouldn’t make logistical sense to fly a second consignment if Francisca needed more than four units, the UK blood services agreed to send six bags of blood. All six UK donors who received a phone call and were able to donate did so within days.
In Rochester, Kent, England, it was James’* 104th donation. He first donated as an 18-year-old in the army in 1957, when he was told his O negative blood was “good for blue babies”. In 1985 he got a letter explaining his blood was rare (although not how rare) and asking if anyone in his family would donate so their blood could be tested. The family members he asked were reluctant, however, believing they “needed their blood for themselves”.
A few years later, in the early 1990s, James got his first phone call from the blood services, asking whether he would mind “popping down to the local hospital to donate blood for someone in Holland”. There, he was told that a taxi was waiting for his blood. He didn’t think this particularly unusual, saying that it was all in a day’s donation.
He wasn’t surprised to be called up again, but he didn’t know that his blood was going to Cameroon. And previously he hadn’t known he was Lutheran b negative, as well as O negative. He was surprised and mildly intrigued to learn that there were only 550 known people with the same blood in the world.
The bag of James’ blood joined the five bags from the other donors, and all six were couriered to Tooting in south London to start their 7000-km journey.
This was when Walter discovered how remote the hospital really was. Kumbo, in the mountains of north-west Cameroon, is more than 400 km north of both Douala and Yaoundé, the sites of the country’s major international airports. The blood would have to travel for several hours to get there, bumping over a dirt road in the March heat. Even packed in ice, it would be hard to keep it at the cell-preserving 4°C.
Francisca Akata’s blood landed at the international airport in Douala and was cleared through customs by noon on Friday 21 March 2014. A helicopter, supplied at the last minute by the hospital to avoid the lengthy road journey, was waiting outside. Her blood flew the rest of the way to Kumbo and arrived at 14.00, just after Francisca had been wheeled into the operating theatre.
The operation was a success, and the Catholic Diocese of Kumbo found her somewhere to recuperate before flying home. Walter still marvels at the efforts of so many people – on three separate continents – to save one life, “just like the shepherd who left 99 sheep and went after the one that was lost.”
Since his blood can be given to anyone with a negative Rh blood type, Thomas could save countless lives. But if he ever needs blood himself, he can receive only Rhnullblood. If he donates a unit for himself, he has to permit it to be used by anyone else who might need it.
This leaves Thomas dependent on other Rhnull donors. But of the other 40-odd people known worldwide with Rhnull blood, only six or so besides Thomas are thought to donate. And they’re all a long way away: their locations include Brazil, Japan, China, the USA and Ireland. The reluctance to donate is perhaps understandable, but it places an added burden on the people who do give their blood. It’s also probably why Thomas, when Peyrard and I met him in Lausanne, greeted us with mild amusement. “Is it interesting to put a face to the bag of blood?”
Over tea, he described the impact of his blood on his life. As a child he couldn’t go to summer camp because his parents feared he might have an accident. As an adult he takes reasonable precautions: he drives carefully and doesn’t travel to countries without modern hospitals. He keeps a card from the French National Immunohematology Reference Laboratory in Paris, confirming his Rhnull blood type, in his wallet in case he is ever hospitalised. But one thing that is in his blood – and that of almost everyone growing up in the shadow of the Alps – is skiing. Abstaining seems to have been an option he never even considered.
The only apparent health effect he experiences is mild anaemia, which is why he was advised to donate twice a year instead of four times. Intriguingly, one doctor once asked whether he has a quick temper. In fact, the opposite is the case: “I am very calm. If it’s just my personality or if my blood has an impact or not, I don’t know.”
On the whole, Thomas is laid back about his ‘condition’. “I don’t have a problem like haemophilia that has an impact on daily life. In that sense, I’m lucky. I’m glad also that when I was told I had this special blood, they told me it’s okay to have children. I was allowed to have a family, so I’m happy.”
Donors like James and Thomas never learn what has happened to their blood – and haematologists don’t fly across borders to express their appreciation. But on this day, as we sat in a room full of spring sunlight looking out at the hazy white-flecked peaks, Peyrard told Thomas that his blood had saved lives. Just recently, a unit was sent back from France to Switzerland for a young child who would otherwise have died.
On one level, Thomas’ blood does divide him from the rest of us. On another, as the French philosopher Simone Weil observed, every separation is a link.
And Thomas’ different blood has given him the odd unexpected perk. When he was due for conscription, the doctor who first told him about his blood – Dr Marie-José Stelling – wrote to the army saying it was too dangerous for him to do military service, so he was exempted. Over the course of the past 40-odd years, Thomas and Stelling have developed a particularly close relationship. Last year, she joined him and his family and friends to celebrate his 50th birthday party on a boat on Lake Geneva. “She was very kind,” Thomas says. “She saw the human aspect of being Rhnull – not just a bag of blood.”
*Name has been changed.
Dr Paul Marinescu has chosen to meet me on a cold winter’s day in a room stocked with plants, fish tanks and two parrots singing in their cages. It’s a room as lively as its incumbent’s life. This grey-haired man with a gentle voice acts as father to 18 – two his own children and 16 HIV-positive orphans that he took in at a time when nobody wanted them.
The official statistics show that during Romania’s communist rule more than 10,000 children were infected with HIV. What happened is described as an epidemiological accident. What followed is something of a miracle – around 65 per cent of the children are still alive today. “Everybody saw them as having no hope; doctors, parents, everyone actually expected them to die,” says Monica Dan, a psychologist at the Romanian Anti-Aids Association who has worked in the field for 20 years. “I’m still astonished by how strong they are and by what many of them have accomplished.”
Marinescu’s act of patronage saved the lives of a small group of children. Their story is also that of all Romanians with HIV, of managing to live with a once-lethal disease in a poor country recovering after the collapse of communism.
The fall of Nicolae Ceaușescu’s regime left Romania with many orphans, the roots of which lie in Decree No. 770 of 1966. People born around this time were known asDecreţei, the decree children.
Ceaușescu, the country’s communist president, had a wish that became an obsession. He wanted to be the leader of a great number of people, to raise Romania’s population from 19 million to 25 million. Having grown up in the countryside, where poverty hadn’t affected birth rates, and being the third of his parents’ ten children, he couldn’t understand why people wouldn’t want to have large families. So he made it into a law. The decree banned women from having abortions and using any type of contraception. Families with more children were entitled to several benefits, while childless families had to pay additional tax. This, he reasoned, would increase the birth rate of the entire country. The irony was that among these decree children, born out of the ruler’s wish, were the ones who would, as young adults, bring the streets to life in December 1989, ending his rule.
As the number of Decreţei grew, the country’s economy shrank. Orphanages became overcrowded. Living standards had become precarious, with insufficient food in the stores and no heating or warm water in homes. Many children were abandoned at birth and wound up in institutions where living conditions were even more despicable: electricity and heating were supplied sporadically, food was rationed and children frequently fell ill.
According to testimony from orderlies and nurses around the country, many orphanage children didn’t even have a change of clothes – clothes were washed and their carers had to decide whether to leave the children sitting around undressed or dress them in wet clothes. These poor conditions made children anaemic and malnourished, so they were given blood transfusions or injections for their frequent colds.
Then in 1985 came the first documented HIV case in Romania. As doctors investigated, they realised there was a massive problem among the country’s children, especially those in orphanages, who needed medical care more frequently than those living with their families. According to reports from the Stefan S Nicolau Institute of Virology in Romania, 1,168 cases of AIDS were reported in December 1990, 99 per cent of which were in children less than four years old. Around 62 per cent were abandoned children living in public institutions.
The southern counties of Giurgiu and Constanţa, along with the capital, Bucharest, were among those with the largest numbers of infected children in both orphanages and families. Border areas like the coastal Constanţa were the first to be affected with HIV. Where it came from exactly is unclear, but blood donations played a key part. Under the communist regime, donating blood was seen as a moral obligation. “Constanţa was the opening of the country to the world,” said Rodica Mătușa, who was head of the Paediatric Infectious Disease Division at Constanţa County Hospital in the 1990s. “There were sailors who came from all over, and our sailors who travelled worldwide. There was a coastline where we had foreign tourists. All these groups of people were donating blood.” Romania’s blood stocks were low, and the donations welcome. According to a 1990 Human Rights Watch report, blood was a form of baksheesh in Romania, donated in return for favours done and papers processed. The regime did not coerce donations but there was an ‘official’ exchange rate of a meal or a day or two off work for every donation. Unofficially, donation could get you a driver’s licence, a student visa renewal or a job. “Ordinary citizens, foreign students and workers, including dock workers, had little choice but to comply, and whether through ignorance or self-interest, those who were HIV positive also donated blood,” says the report. But donated blood was never tested for any disease, let alone HIV.
The situation was compounded by the poor hygiene measures of the time. The same needles were used multiple times for multiple patients in transfusions and vaccinations. Even if needles were sterilised, it was often done improperly – power cuts and shortages were frequent, so there was never any guarantee that sterilisation equipment or procedures had been run properly.
In orphanages all around the country children were getting transfusions to treat colds and malnutrition. Doctors estimate that a single infected donor could pass the virus to up to 80 children.
Romania’s doctors knew the country was at risk of an epidemic, but government officials ignored their pleas. The communist state was projecting a facade of perfection – the best leaders, the best health system – that nothing would be allowed to shatter. To ensure the doctors’ silence, they stationed Special Service agents at their workplaces and monitored their calls. No measures to combat HIV were taken until after the 1989 revolution, when the borders opened and the horrendous situation finally came into public view. Then, journalists and photographers from all over the world showed what life was like for the orphans of Romania. In Constanţa alone, thousands were found to be infected with HIV. Many more did not even make the statistics – they were already in the morgue.
In 1999, Paul Marinescu was working as an infectious-disease specialist in a small hospital in Singureni, a village in Giurgiu county about 30 km from Bucharest. An important part of his work was taking care of children with HIV. Marinescu was head of the local Health Department – a representative of sorts for the Ministry of Health at a county level. Giurgiu was his home. What he saw was a local tragedy.
Many families had seen their children infected in hospitals, but the children in the worst shape were in the orphanages – their disease meant no chance of adoption. And Romania’s orphanages were often isolated on the outskirts of cities, where children with HIV lived hard, lonely, abuse-ridden lives.
Almost everyone avoided contact with the HIV-positive. Although the ways the disease could be transmitted were widely communicated through medical workers, television and newspapers, discrimination was everywhere. Especially frightening to people were children with HIV. They were not welcome in kindergartens or schools. People fled when they saw them in the streets.
Marinescu felt compelled to act. “When I visited them for check-ups, the children didn’t want to let me go,” he recalls. “They called me Daddy, clinging and holding on to my legs with both arms.” He’d had his own two children by then, but wanted to adopt the children from the orphanage where he worked. His lawyers warned of the legal complications adoption would entail. So instead he started a foundation called Saint Mary, named in memory of his mother, taking 16 HIV-positive children under its care. “Legally, I became their tutor,” he says. “I was poor, but I had a lot of dreams for them.” Modest dreams, such as a bigger garden, more food.
Marinescu first housed his children in an isolated ward in the Infectious Disease Hospital in Singureni. A fire forced a move to a small house he built using funds from individual donations. Further donations from local businesses offered basic supplies of food, clothing, fuel for the winter. He visited the children every day, in the morning before going to work or in the afternoon, on his way home. He talked to them and listened to how their day had been.
In the years that followed, other children with HIV came under Marinescu’s wing: a young woman who had been found in the street, another with brain damage. There were times when he was caring for as many as 23 children – most of whom are still alive today, some with their own families. Three of the children died. Two were in the final stage of disease when they came under his care, but he still regrets the third, who could still be alive had he not refused to take his medicine. “When he turned 18, he wanted to live his own life and left the foundation. He also got mixed up with some questionable people, and because of the diseases associated with HIV, he died six months later,” Marinescu laments.
While healthcare reforms meant that blood transfusions were handled much more safely, HIV was still spreading. Today there are around 500 new HIV cases in Romania each year, mostly transmitted through sexual intercourse or contaminated needles used with recreational drugs. There are still children born HIV positive, and there is still popular prejudice against them.
Singureni, a small community with just 3,000 inhabitants and little knowledge of HIV, for years opposed the children’s presence. The locals protested in schools – if a child with HIV joined, parents moved their children to another class or voiced their fears on local TV shows. Teachers made the children feel so bad about themselves that they stayed home.
One of the worst moments came in 2011, when the mayor of Singureni accused the children of giving HIV to others in the village. The doctor stood up for his orphans. “I know what the mayor would have liked,” said Marinescu in a TV interview at the time. “He’d like to have seen them in ghettos. For many years, I tried to teach the people of the village how the disease was transmitted. I did the talking, but I did the listening as well.” The incident was debated on national TV and newspapers. The community became divided.
Marinescu’s story was not an unusual one. In Constanţa, Rodica Mătușa set up her own non-profit NGO – the Speranta Association, meaning ‘hope’, to care for the HIV-positive orphans she had encountered in her hospital. In 1992, they raised the funds to buy a house and land in the village of Mihail Kogălniceanu, 36 km north of Constanţa’s main city. Speranta eventually gained further funding from the Global Fund to Fight AIDS, Tuberculosis and Malaria (through the Romanian Angel Appeal Fund) and became something of a model for similar foundations across Romania. Throughout the 1990s, foreign aid poured into the country, from governments, from NGOs, from Italy, Japan, the UK and the USA. Foreign aid could provide orphanages with better food and better clothes, but not social integration.
In Singureni, Saint Mary was a small one-man foundation. Its orphans had little, but its limitation became its strength. Its one man had knowledge of the country and system.
Marinescu decided to enrol his children in a school in Giurgiu City, the county capital, where people were more tolerant. During the week, the children stayed in hospital accommodation in the city, which Marinescu had arranged through his connections. When it came to high school, he advised and supported the children to study practical subjects – nursing, computing – that he hoped would enable them to more easily find jobs in later life.
The children’s lives went on. In 2002, Romania’s government introduced more protection for children with HIV. By law they had the right to education, confidentiality over their HIV status, and disability allowance. Understandably, most of Marinescu’s orphans moved away from Singureni as soon as they were able, to start again in the region’s other surrounding villages, where no one knew their names or their past.
On a wall outside Dr Mariana Mărdărescu’s office is a panel summing up 25 years of fighting against HIV. Pictures of Hillary Clinton, Madeleine Albright and others who’ve helped the young Romanian patients with HIV hang from the walls. “Nobody asked how we felt when taking care of these children,” she says. “I’d gone to medical school to save lives, but there I was treating children the same age as my daughter and not knowing if they would survive. When parents asked how long their children would live, I’d just say, ‘Let’s see.’”
‘Let’s see’ turned into children who had been expected to die within a few years living to see 30 and beyond. Mărdărescu now heads HIV surveillance and control at Matei Balş, the largest infectious-disease hospital in the country, in Bucharest. According to her reports, 20,146 people have been registered as HIV-positive since 1985, with 12,866 still alive, 65 per cent of whom were infected as children before 1990.
“The fact that so many of them are alive today makes me think they’ll reach 60,” says Mărdărescu, “because HIV is now a chronic disease.”
The first treatments began in 1995. Today, 90 per cent of the HIV drugs available in the world are available in Romania. Marinescu’s orphans remember how hard it was to take the medicine when they were just eight or nine years old. At first, they were given powdered drugs, then syrups because they were too young for the pills. As adults, many are on special treatment plans, taking two to five pills a day, with regular check-ups every three to six months, depending on their physical and mental state.
The challenge now, Mărdărescu says, is to create a combined-dose treatment that combines many drugs in a single pill, is easy to take and doesn’t take a toll on the patients’ physical appearance. This is vital because even with access to treatment, many patients abandon their treatment over time. “Some of them see it as a routine; others get to a state where they feel stuck and refuse the treatment, either for some time or for ever,” she says.
“We call them therapeutically aged. We offer the possibility of treatment, but some drop out in favour of [enjoying] their day-to-day lives, which they want to be the same as the lives of others.”
Things can only change if the patient agrees to work with a psychologist, says Mărdărescu, adding that after treatment is stopped, the results of their blood tests get worse and the illnesses associated with HIV can eventually kill them.
This is a legacy of the years when access to drugs was difficult. Even with the legal reforms of 2002, and later 2004, which provided further rights including a disability pension and food allowances, Romania was still a country in the process of rebuilding. Local health authorities were unprepared for the changes that swept in and the scale of the problem. The government would promise access to drugs, but hospitals and pharmacies wouldn’t be stocked, sometimes for weeks, playing havoc with attempts to keep patients on their regimens.
On the positive side, Romanians with HIV are entitled to disability allowance of around €250 a month from the government, possibly more depending on health status and whether they need a full-time carer. But this creates something of a dilemma if they want to work. Start working and their disability allowance is cut in accordance with their working hours – and, outside of the major cities, wages in Romania are low. Giurgiu, for example, is one of the poorest cities in the country. And for the types of jobs available to HIV-positive orphans, the average monthly pay is around €200. Many living with HIV, though, struggle to work a full eight-hour day.
When they turned 18, most of Marinescu’s orphans banded together to rent places of their own. Some of them have their own families now. Roxana* has a four-year-old girl who’s now in kindergarten. Ileana* has two children. A third young woman moved to Spain and has one child. “She calls me frequently to let me know how she’s doing,” says Marinescu with delight.
Roxana is talkative, with a big smile and perfect teeth. She’s happy to have a family of her own. “I did some research and did everything I needed to prevent my little girl from getting the virus,” she tells me. “Because I did everything the right way, my little girl isn’t ill. I was able to give birth in Giurgiu, my hometown, by C-section. The doctors know what they have to do when dealing with an HIV-positive pregnant woman, so I wasn’t afraid at all. The day after the C-section I already started taking care of my baby. I knew I couldn’t breastfeed her, but I wanted to take care of her myself… When you grow up without parents, things are different. I didn’t need anyone to help me.”
Roxana is determined to tell her little girl about her illness. “When she turns 10 or 11, I’ll tell her the truth about myself. I won’t hide it from her, it doesn’t make any sense. She’ll find out anyway. I’ve read a lot on the subject, enough to understand it myself and be able to speak to others about it.”
Marinescu taught his children not to hide who they are. Yet candour comes at a price, so many are understandably still reluctant. Cristina* says they avoid having their pictures taken, because of years of traumatic experiences being pointed at in the street. “Things haven’t changed that much in the way HIV is perceived,” she says. “We avoid having too much exposure.”
Like the other orphans, Cristina’s biggest wish is to find a job. She’s a good seamstress and would like to work in a protected factory – sheltered workshops financed through European Union funds or foreign aid that provide a stepping stone for people that need social support, such as Roma people or the unemployed. Other HIV orphans have benefited from similar models. The Speranta Association, for instance, has established two farms where its children, now young adults, are working or training. “They’ve tried to get jobs in the city, but you know how it is,” says Rodica Mătușa. “Either people found out they were HIV-positive or they just didn’t manage to find work, so we had to do something to help them make a life for themselves.” The farms and their workers support themselves using 60 per cent of what they produce, selling the rest. One farm, named Speranta after the Association, grows vegetables and livestock, while the other, ARICO (Aripi pentru Copii, or Wings for Children), produces flowers.
The challenge for Marinescu’s orphans is to find such a future for themselves. But no matter what their path, they know they always have a home. Many come back and work as volunteers in the centre where Marinescu once took care of them. They come together often, celebrate birthdays together, comfort and help each other in every way they can. Marinescu continues to help his adopted children with food, advice, medical treatment, even wedding dresses. The doctor gave them a family that kept them alive as children, and a bond that helps keep them alive as adults.
* Some names have been changed to protect identities.
Love is not enough for a child to get over a difficult start in life. Lucy Maddox asks: what is?
The importance of feeling connected to others is common to the findings of many studies of what helps people to survive difficult or violent childhoods. We all need caring relationships, as much as we need our basic physical needs to be met, and many of those who have survived and thrived after a challenging start say that relationships – either with one other person or with a wider community – were a help.
It’s easy to interpret this research as somehow saying that love is enough, or that we can love people to make them better. The reality of caring for children who have come from abusive or neglectful homes is much more complex. They might push back against usual boundaries or find it hard to know how to behave in response to affection. It doesn’t mean that these things are unwanted or unimportant, but to persevere with showing care in these circumstances might be hard for caregivers to do. If love isn’t enough on its own, then what else matters? Which bits of the relationships with key caregivers are the most important?
Kevin Wright is a foster carer who is also a trained psychologist, psychotherapist and social worker. While he agrees that relationships are crucial, he says it’s important to be clear that it’s what you do, not what you say, that really counts. He thinks foster carers don’t get anything near enough support to understand all of this. “It is tough, when someone is in your home and acting out – it’s not easy for people to know how to react when they’re aggressive,” he says.
“It is extremely simplistic to say they need a loving relationship… I don’t know what that actually means in real terms. What I do know is what a child needs.”
Wright has just finished two years of fostering a teenager who started his foster placement very aggressive, drinking and staying out until all hours. He now lives independently and pops back a lot to visit.
“I do have one word which I would say is critical, and it’s respect,” says Wright. “Because the one thing with kids who’ve been very disturbed… is nobody gives them any respect. And respect means listen, validate their perspective.”
For Wright, respect means no shouting, and clear, consistent expectations of behaviour and boundaries, with positive regard for the young person. He doesn’t use punishment – he uses praise and reward: “I don’t do sanctions, I do positive reinforcement for positive behaviour.” Often, this can be monetary, but the real point is to be rewarding a specific behaviour and praising it, modelling clear boundaries and a sense of respect. Wright did this with the boy he’s just fostered: “We agreed with him what he would get bonuses for – like telling us where he was, coming in so we didn’t have to call the police about him… When he started doing it and started getting his bonuses he started behaving. He took me literally – I said I don’t want you coming home drunk, so when he was, he didn’t come home!” Wright laughs. But the boy learned not to have to use drink and to come in on time, and he was rewarded with extra pocket money.
“You can’t expect to get respect if you’re not treated with respect, and most of the time that’s not what they’re getting,” says Wright, who also has four children of his own. “With teenagers, whatever you’re doing – you cannot expect to see the fruits of your labour until many years later… Be patient, don’t get frustrated, validate.”