Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part eight of an eight part series.
Palliative care is often misunderstood as simply a way to manage the last weeks of life.
This evolving discipline, however, is much more than that. It’s a focused treatment offered by a specialized team: doctor, nurse, social worker, often working alongside pharmacists, nutritionists and counsellors.
The mandate of the team is broad – and includes helping caregivers contend with the emotional stress of a loved one’s illness – but pain management and symptom relief for the patient are priorities.
Why palliative care early
“Originally, palliative care focused entirely on the last weeks of life,” says Dr. Romayne Gallagher, Physician Program Director, Palliative Care Program at Providence Health in Vancouver. Gallagher started in family medicine nearly three decades ago and moved into palliative care about 12 years ago.
“We now know the earlier you introduce palliative care, the better family satisfaction and the shorter the length of stay in hospital. There are also studies showing patients live longer if they get palliative care,” Gallagher says.
Palliative services often require a doctor’s referral, but if your loved one has a long-term illness, such as Alzheimer’s, you should be proactive and ask their physician about palliative services early.
Providence Health Care is a collection of hospitals, clinics and residences in British Columbia. Its palliative services are offered not just to patients in their long-term facilities, but to those who come to emergency departments and then return home, as well as those who need to be admitted for short stays.
“We’re [the Palliative Care Team] constantly trying to sell ourselves,” says Gallagher. “I try to explain to patients and families that I’m here to help you live as well as you can for as long as you can. People are afraid to see us because they think ‘maybe I’m sicker than I thought and the docs haven’t told me.’ ” That is simply not the case.
What can the palliative team do for you?
Arriving patients are triaged by a palliative care nurse who speaks with family to see what’s needed. That might be education about the condition that brought the patient to hospital, details about the treatment plan and possible outcomes.
“We see many patients with dementia,” says Gallagher. “They usually have other acute illnesses, and those are often a consequence of the dementia. Those patients become exhausted.”
The team can help set up advance-care directives (which let the patient determine treatment at a time when they are capable of making decisions, even if the treatment itself will be needed when dementia makes decision-making impossible). They also help family members understand the new condition that brought their loved one to hospital, and its likely progression.
This team is also your translator with your loved one’s doctors.
“It’s surprising how many people don’t realize they have the right to say no to treatment, to withdraw or to stop a particular treatment. That’s their right as a patient, if the treatment is not achieving their goals. This is why people with dementia often say, ‘I’m going to choose physician assisted suicide’ and we have to say ‘you have a lot more choice than that,’ ” says Gallagher.
“For many people, their goal is simply to stay out of hospital as much as possible.”
Treatment, and choice
Staying out of hospital is not always an option. Pneumonia is one complication that often lands patients with dementia in hospital.
“And let’s say when your mum is in hospital, she climbs out of bed, she screams and cries, she’s scared because she doesn’t understand what’s happening and she becomes delirious every time she’s admitted. It’s a horrible experience for her. We can help with delirium management.
“We also say, ‘What’s going to happen in future?’ ”
The patient’s future plan could be to treat the symptoms — shortness of breath, pain, sleep disruption — but not the infection. What’s the benefit of that? “We can try treating symptoms in the patient’s home, or the facility where they live, instead of in the hospital,” says Gallagher.
“People often think ‘I have a choice of palliative care and death, or I have to carry on all the treatment,’ but it’s never that simple,” she says. “This is baffling to some people who think that medicine is all pills and surgery.”
Gallagher points to a study of patients with dementia and aspiration pneumonia, a common condition in patients with dementia and one that indicates that they have about six months to live. (There are 40 muscles involved in swallowing and it’s a highly coordinated function, one that breaks down when sections of the brain aren’t communicating properly. Patients end up with saliva, food or liquid in the lung and that leads to infection.)
“Some of the patients in the study refused going to hospital and instead treated only the symptoms at home, while the others chose to be admitted to hospital and receive treatment for the infection as well.” Result: There was no difference in the mortality rate between the two groups. “Fascinating right?,” asks Gallagher. “The point is that maybe we, as a society, over treat some things.”