How to conduct discussion about mortality can be the greatest challenge in a health-care provider’s career. My new book, Life After the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers (Da Capo Lifelong; February 14, 2017) is a guide for professionals, families and patients when faced with poor prognosis and the need to talk about chronic and end-of-life issues. After 27 years of practice in palliative care, I have gained valuable knowledge and unique insights and how to best address these concerns. Since I can’t personally talk to everyone, I’ve written this book—to give all the same information that I give to those that personally contact me. Chapter 14, Difficult Treatment Decisions and Discussions speaks to culture, religion and other traditions that must be handled mindfully when working with aging patients.
Serious illness doesn’t discriminate; it strikes patients of all ethnic and cultural backgrounds. Members of particular groups frequently have traditions that govern how they deal with serious illness, dying, and death.
In today’s Western cultures, the wishes of seriously ill people are paramount. Our laws and institutions are geared to see that their directives are carried out. In other cultures, decisions are based on what’s best for the family and the individual’s interests are less important. The patient’s family, not the patient, is expected to make the important decisions including treatment and end-of-life decisions.
If you want your family to make those decisions, make your wishes clear. Put them in writing. Make sure that they’re in your medical record. Tell your family, friends, and medical providers that you authorize your family to make all the necessary decisions regarding your treatment and end-of-life.
When it comes to cultural differences, my major concern is that assumptions will be made that don’t reflect patients’ wishes.
I was treating Mae, a Chinese-American patient in the ICU when it became clear that she had only a matter of days left. I asked her nurse, who was also Chinese-American, if she knew whether anyone had asked about Mae’s spiritual preferences. Did she want to see a spiritual leader or have particular customs followed? “Oh, no,” the nurse replied, “We Chinese aren’t religious.” Her answer surprised me. It was not what I had experienced. So I asked Mae’s family, learned that they were Catholic, and was told that both Mae and her family wanted her to receive the Sacrament of the Sick, which we soon arranged
You can’t assume that you know about someone because you know their ethnicity, country of origin, religion, or primary language. You certainly don’t know their preferences for something as personal as medical care and spiritual needs at the end of life.
Although cultural traditions play a role in making treatment decisions, that role is not absolute. For example, in some cultures the tradition is to withhold unfavorable information from patients. In those cultures physicians don’t discuss diagnosis and prognosis directly with the patient. And yet, cultures are not homogeneous. Opinions diverge even in the most traditional communities. They are never 100% one way or the other. Ultimately, treatment and end-of-life decisions are personal and vary with each case.
I tell my students to be curious. To ask respectful questions like, “What do I need to know about your culture or religion to make sure I take good care of you?” Share these traditions and practices with your doctors and nurses. If the person who is ill in your family is potentially more traditional than you are, you can ask them the same question- “Grandma, what are the traditions in our family that are important when taking care of people who are sick?” This question about traditions is another opportunity for the person who is sick to find meaning, purpose, legacy and dignity by sharing family and cultural traditions.
On the other hand, I sometimes find that people don’t want straight talk. Some people prefer to be a bit in the dark, to live with some denial. That’s OK, too. The point is that you can never know what someone will say. That goes for me as a doctor and for family members. The goal is not to assume what someone wants, but to ask.
At 84, Mr. Wong, was admitted to the hospital with right-sided abdominal pain. An ultrasound revealed a mass in his gall bladder that looked like cancer. His family told us not to tell him what we found because he wouldn’t be able to take such bad news. They said that in their tradition the family would make all medical decisions for him.
One morning, when Mr. Wong was feeling better, I visited him. He was in bed and a Mandarin interpreter was with his family in her room. I wanted to respect the family’s wish, but I also wanted to respect Mr. Wong. So I said, “Mr. Wong, I have information about what’s going on. Some people want me to tell them everything while others prefer that I only speak to their families. How do you feel?”
Mr. Wong thought for a moment and then spoke in Mandarin, which the interpreter translated. “You know doctor, everyone has to die someday.” I was stunned. I hadn’t said anything about dying. I regrouped and said that yes he was right but what I wanted to know was how he wanted me to handle new information about his condition and whether he wanted me to tell him or his family. “Oh doctor,” he replied, “you will tell me everything. And by the way, it’s OK if you also want to tell my family.”
Mr. Wong went on to tell us that he felt better and wanted to go home. He declined a biopsy that his family had been ready to consent to. Mr. Wong’s family thought they were protecting him, but they complicated the situation and made it more difficult. They nearly exposed him to a biopsy that he didn’t want.
The US and every state have laws that mandate that healthcare providers make interpreters available for any person who doesn’t speak English. These laws are so important because they support better patient-doctor and nurse communication, which is the backbone of good medical care.
Low-income Californians who are elderly and disabled were less likely to go to the emergency room or be hospitalized after their in-home caregivers participated in an intensive training program, according to a report.
Under a pilot program, nearly 6,000 aides in Los Angeles, San Bernardino and Contra Costa counties were trained in CPR and first aid, as well infection control, medications, chronic diseases and other areas. All were workers of the In-Home Supportive Services program, who are paid by the state to care for low-income seniors and people with disabilities, many of them relatives.
Researchers at the University of California, San Francisco based their analysis on the results in Contra Costa County, which they said produced the most complete and reliable data.
UCSF professor emeritus Bob Newcomer said they compared insurance claims on 136 at-risk elderly and disabled residents whose caregivers were trained with the claims from more than 2,000 similar residents whose caregivers did not receive the training. Though the sample was small, Newcomer said he was encouraged by the findings.
“Training shows a lot of promise,” he said.
The rate of repeated emergency room visits declined by 24 percent, on average, in the first year after caregivers were trained and 41 percent in the second year, according to the UCSF analysis.
The demand for in-home caregivers is rising nationwide as the population ages and people develop dementia or live longer with chronic diseases. Caregivers typically help elderly and disabled people with bathing, dressing, eating and getting to medical appointments. The work is largely unpaid and done by family members, but some states pay caregivers for eligible low-income residents through their Medicaid programs.
There are currently no federal training requirements for in-home caregivers, even if they are paid with taxpayer dollars. Around the country, however, training programs have been developed and tested, according to the Paraprofessional Healthcare Institute, an advocacy group that also provides training. Among the states that have tried different types of instruction are Massachusetts, North Carolina and Michigan.
California’s In-Home Supportive Services program pays caregivers to help about half a million elderly and disabled people stay in their homes rather than be placed in institutions. To qualify for the care, seniors must be eligible for Medi-Cal, be 65 or older, and be blind or disabled.
The goal of the pilot program was to determine whether educating IHSS caregivers and integrating them into the medical team would improve the health of their patients. The training was conducted by the California Long-Term Care Education Center under a three-year, $11.8 million grant from the federal Centers for Medicare & Medicaid Services. The center, which released the report on the results of the pilot program, worked in conjunction with UCSF.
The caregivers in all three counties, 44 percent of whom did not have a high school education, voluntarily attended about 60 hours of classes and completed 13 hours of related work at home. The people they cared for also took part in some of the classes, which were conducted in several languages.
Caregivers who were trained told researchers they felt better equipped to do their jobs and communicate with clients and their doctors, according to the report.
One of the caregivers, Andrew O’Bryan, said he was especially happy to learn CPR in case his mother has an emergency. For more than eight years, he has been paid by IHSS to care for his 67-year-old mom, Anabelle O’Bryan, who he said has diabetes, congestive heart failure, arthritis and high blood pressure.
O’Bryan, who lives in Oakley, a city in Contra Costa County, said he also learned what to ask when he accompanies her to the doctor and how to decide if she needs to go to the hospital.
“Now I am more equipped to spot things” before they get worse, he said.
For example, O’Bryan said he knows to elevate her feet when they get swollen rather than immediately take her to the ER.
Annabelle O’Bryan said she is more confident in her son’s abilities after he took the class, and she knows that he is helping her stay healthier.
“He is really on top of me not eating the sugar,” she said. “He is really careful about that.”
Newcomer of UCSF said that because the caregivers are in the patients’ homes for hours, they can be the “eyes and the ears” for physicians and other medical providers. They can tell the doctors “if the person is more confused, or is refusing to eat, or that the status is changing,” he said.
The results of the study show that caregivers play a pivotal role in helping keep people out of the hospital, said Corinne Eldridge, executive director of the California Long-Term Care Education Center. The nonprofit center was founded in 2000 by members of the Service Employees International Union, which represents many IHSS workers.
During the training sessions, Eldridge said, the caregivers learned skills such as how to read medication labels or provide the best diet for a diabetic patient. Like Andrew O’Bryan, they also became more confident about handling worrisome situations, such as deciding when to call a doctor or dial 911.
Eldridge said the center is now hoping to gain support from Medi-Cal health plans to help pay for the training as a way to reduce health care costs.
“We really see training as part of the solution in order to provide better care … and frankly as a way to invest in the workforce,” she said.
Ivana Russo submitted her application for a California nursing license on April 22, nearly a month before she graduated from a nursing program at Brightwood College in San Diego. She expected it to take 10 to 12 weeks for the state to process her paperwork and authorize her to take the licensing exam.
As of early August, 15 weeks later, the licensing board still had not reviewed her file and could not tell her when it would. Russo called the agency, often, to ask about the status of her application. It was hard to get a staff member on the phone. When she did, she said, “Every time I got a different story.”
State officials claim that hiring new nurses is a crucial workforce concern for California, yet at least 2,000 recent nursing graduates like Russo remain in licensing limbo, with their applications taking as long as 24 weeks for the Board of Registered Nursing to process.
Experienced nurses from other states who apply for California licenses also wait months for the go-ahead to work.
The current delay in California comes on the heels of a related slowdown in 2014 and is a major inconvenience for the nurses who want jobs and a hassle for the hospitals that want to hire them. And critics say at least some of the problem stems from the flawed $96 million implementation of a computer system called BreEZe which, as its name suggests, was intended to streamline professional licensing.
Patricia McFarland, CEO of the Association of California Nurse Leaders, an advocacy group, described the computer system as poorly conceived and inefficiently deployed, citing it as a significant contributing factor in the delays. Moreover, she said, the licensing board doesn’t have a big enough staff to handle the volume of license applications it receives.
“We can’t license our graduates,” McFarland lamented. “Nurses want to retire, they want to train the next generation. We have hospitals investing in residency programs and they can’t start the new nurses they want to hire. At the end of the day, who’s suffering? Our nurse graduates and our patients.”
Veronica Harms, a spokeswoman for the nursing board and for the Department of Consumer Affairs that oversees it, said the department had resolved early glitches with the new computer system. But she acknowledged that the system is still labor-intensive and time consuming, and she agreed more staff is needed to speed the licensing process.
Harms said that the board’s new executive officer, Joseph Morris, who started July 10, “has acknowledged the backlog of applications and is determined to work with [the department] in finding long-term solutions.”
The nursing board is responsible for licensing the state’s more than 417,000 registered nurses, or RNs. It conducts background checks, verifies educational bona fides and authorizes nurse graduates to take the National Council Licensure Examination, or NCLEX, which candidates must pass to get their nursing license. In fiscal year 2015-2016, the board issued 23,743 licenses, more than half to new nurses.
This year’s delays are not the first at the board, which suffered a slowdown in 2014 after it and nine other state licensing agencies adopted the “off-the-shelf” BreEZe system. Once launched, the system malfunctioned, upending workflow and creating more tasks for staff.
We have positions for them, but we can’t let them in without licenses in hand.
A February 2015 report on the system by the California State Auditor concluded that the consumer affairs department “failed to adequately plan, staff and manage the project for developing BreEZe.” The audit recommended that the nursing board analyze its application process to determine its need for additional resources.
But McFarland, of the nurse leaders’ association, said the state audit was a “game of dodge ball” in which the consumer affairs department and state IT leaders refused to accept responsibility for a real fix.
The audit showed that most of the 10 state boards that implemented BreEze in 2014 were “generally dissatisfied” with it. All 10 were unhappy with the system’s reporting capability, and eight of them said the system actually made their operations less efficient.
Today, BreEZe is used by 18 state boards, bureaus and committees, including the Medical Board of California, the Dental Board and the Board of Behavioral sciences.
The nursing board reports on its website which applications it is currently reviewing — but only by dates received, not by name. Applicants cannot click to find out where their individual applications stand in the process or how much longer they should expect to wait. And the website warns that “contacting the Board for application status while within these timeframes may cause processing delays.”
As of Aug. 8, the board was processing applications filed between March 16 and March 31, according to the website. Nursing graduates said it seems to have been working on March applications for some time.
On July 27, Russo asked if showing up in person might help expedite her case. The worker on the phone said she didn’t think so.
“I’d drive eight hours up to Sacramento if it meant I could move this forward even one week faster,” Russo said. Promising offers come and go, she said, but she can’t start a job until she has her license.
She said she had to withdraw or cancel interviews with a subsidiary of Rady Children’s Hospital-San Diego and the Center for Discovery La Jolla, a residential treatment facility.
Other nursing grads are also feeling confused and frustrated as their job searches get mired in the state’s licensing logjam.
Lara Golden, who recently earned a Master of Nursing degree from the University of Virginia, applied for her California license on April 13. She had postal receipts, but when she called the board in June they couldn’t find her paperwork. So she flew from Virginia to California to submit a second set of fingerprints in person. Seven weeks and many phone calls later, Golden is still uncertain when her application will be reviewed.
Fremont resident Angel Li received her bachelor’s degree in nursing from Washington State University in Spokane in May. She submitted an application to the nursing board on March 15. After hearing nothing for 12 weeks she, too, started calling the agency.
“I kept waiting and waiting and calling back, which is not an easy task,” she said. “Sometimes they just hang up due to the high call volume.”
In May, Li said she had a promising interview for a pediatrics position at a Southern California hospital. The manager wanted to hire her, but said she couldn’t move ahead until Li had a license.
Golden is supposed to start a residency program at a UC hospital but fears she won’t have her license in time.
“I have people calling me crying,” said Kathy Harren, regional chief nursing officer at Providence Health and Services, Southern California. “We have positions for them, but we can’t let them in without licenses in hand.”
Nancy Blake, critical care services director at Children’s Hospital Los Angeles, said that as of Aug. 9, 22 nurses out of the 57 her hospital has hired for its nursing residency program, which starts September 26, still had not been cleared by the nursing board to take the licensing exam. Under normal circumstances, only two or three candidates would not yet have taken the test by this point in the summer, she said.
Blake, who hit roadblocks while renewing her own license earlier this year, worries that young nurses will get discouraged — and that hospital staffing will suffer. “A lot of the boomers are retiring,” she said. “I believe we’re on the cusp of a nursing shortage.”
A 2014 survey by the state nursing board acknowledged as much, reporting that nearly half of California’s nurses were over 50 and that many younger nurses were having trouble getting work. It is “essential that recently graduated RNs find employment opportunities so they are prepared to take on the roles of retiring RNs,” the report urged.
Susan Odegaard Turner, founder of Turner Healthcare Associates, a consultancy in Thousand Oaks, said California now has more of the newly trained nurses it needs but still has not solved the problem.
“We got more nurses. But now they can’t get their license,” Turner said. “This is a different kind of shortage. We’ve produced them, but they’re not working.”
The thought of going to the hospital can be very frightening and disorient for people suffering from dementia. The stay at the hospital could be for a short period, for instance, an operation or for a longer period due to a serious illness or accident.
Statistics show that people occupy two-thirds of beds are over the age of 65, and around 30% of them will have some dementia.
Since dementia patients have trouble understanding where they are; the confusion compounds if they are ever taken to a place which is unfamiliar to them.
This is why going to the hospital can be a very upsetting situation for them, and may even confuse them more than usual.
They may not understand where they are, as hospitals can seem very noisy for people with dementia. If you’re worried about taking your loved one to the hospital, you might want to check out these factors in the vicinity, to make the stay or visit as less cringe worthy as possible.
Staff who are skilled and have time to care
The staff should be well educated about dementia, and trained to handle the patient with care. Moreover, there should be an availability of specialised doctors and nurses for dementia, who can understand the disease and its conditions thoroughly.
The staff to patients ratio at the hospital should also be sufficient enough to support the complex needs of dementia patients.
Environment that is dementia friendly
Due to the compound nature of this disease, the kind of environment that a patient is kept in plays a significant role, and can have a lasting impact, both negative and positive on the individual with the dementing illness.
The hospital environment should be calm and should increase orientation, provide comfort and become familiar quickly. The lighting and floor should be fixated in such a way that it supports orientation and not disturb the patient visually.
For some patients identifying the bed, the area can be a lifeline, for this very reason the bed area should always be personalized with familiar items for dementia patients. Moreover, since mental stimulation is critical for a person suffering from dementia, the resources in the room should support activity and stimulation.
Care plans that are person centred
We are all well aware that the symptoms of dementia vary from one person to another; therefore, their care cannot be generalised. The hospital should ensure that the care for a dementia patient is based on the specific needs of that individual.
Their preferences and understanding of their abilities are crucial when developing a care plan. Moreover, to make the patient more comfortable in the hospital environment, family and friends should also be involved in the care plan.
Due to individual differences in the disease itself, the encouragement of social engagement and activities should be to an optimal amount; of course, the optimal amount also varies from one person to another.
Specialists should be present at all cost when devising the care plan; support from professionals can ensure that the individual with dementia is getting the right support.
Partnership with the caretaker
Adequate care of the patient acknowledges the needs of families and caregivers who have been helping the person with dementia since the very beginning.
Of course, the caretaker is often happily willing to assist the care of their loved one, but the hospital staff needs to take into consideration how they wish to be involved. Moreover, when it comes to decision making, the caretaker’s assessment in the decision-making process should always be considered.
This is especially important when hospitals are aiming to provide the right care to the person suffering from dementia.
Families sometimes hold valuable information that can help the staff get a proper assessment of the disease and provide care which meets the exact needs of the individual.
The care of dementia patients is ever changing and unique. Each family with a dementia patient may have special needs that are entirely different from another family with a member with the same illness. Hospitals, which take into consideration these four factors and understand the caretaker should consider the uniqueness of the patient for their loved one suffering from dementia.
ALMA CA– USEY
Alma Causey is a blogger by choice. She loves to discover lives and world around her. She likes to share her discoveries, experiences and express herself through her blogs.
Planning for your retirement need not be a daunting prospect and in fact, if you look at it as planning for your future, it can provide a certain level of “peace of mind”, knowing you have a solid plan in place. Many of our clients have lived in their homes for 10-30+ years or more and they have come to realize that they not only have a financial investment in their home, but an emotional investment as well. This emotional Investment can be priceless to an aging home owner. The amount of memories and positive milestones created and realized within the home can bring an aging senior a great amount of comfort and ease to fall back on in their later years.
However, there are some important items to address and be aware of if an aging senior wishes to remain in the house that they love. Listed below is a basic guide to the kinds of questions you should be asking yourself when planning to age in place in your home, during your retirement years:
1. Is it realistic to continue living in your home?
Like many millions of senior citizens in Pennsylvania today, you may wish to remain in your own home when you retire, but there are many factors you will need to consider as you look into your own future:
• If your health declines, are you still going to be able to move around the home?
• Will you be able to maintain your home, from organizing and cleaning to gardening?
• Some aspects of your home may not conform to aging and your safety needs; could this be an issue? Can it be addressed?
• Can you adhere to your medication schedule yourself, or will you need to be assisted by a healthcare professional?
• Can you cook safely for yourself, and prepare healthy, nutritious meals?
2. Can I maintain a social life and keep active?
• Are you able to keep active during the day, if not at home, then in a nearby sports hall or community centre?
• If you have no friends near your home, are there places to meet other senior citizens and socialize?
3. Will I be able to manage my finances independently?
• Do you pay bills on time and know how much you spend on utility bills each week or month?
• If you haven’t already assigned a family member to make important financial decisions on your behalf, is there someone that you can empower?
• Can that person access certain financial information of yours, such as assets, deeds and account information, should they need to?
• Do you have a current and updated will?
4. Will I still be able to drive, or should I rely on family and friends?
• If you have a car, is it in your interests to keep it; how regularly do you use it and how safe are you? If you’ve had accidents recently, are not confident driving or cannot afford to maintain a vehicle, you may want to consider using public transport.
• Are there regular public transport services that you can access easily and affordably?
5. Do you have adult children to help you when in need?
• If you’ve lived alone, you may enjoy your privacy and will need to consider who will be able to assist you if you have a temporary issue?
• How much will you have to depend on your children for different aspects of your life, from transport to personal care?
• How often will your adult children need a break from their care giving?
• If you choose to have personal or medical care at home from an agency like BrightStar, will this be acceptable to your children and how will you pay for care?
• Do your children live close to your home, and will they be able to help in emergency situations?
6. Have you researched nursing homes or assisted living options?
• If you do choose this type of care, can you be sure that they are able to provide you with the right level of care?, and if your health deteriorates, can they support you fully and provide the attention you require?
• Can you afford their fees?
• The National median cost for a Pennsylvania assisted living room is $43,200 a year.
• The annual cost for a private room in a Pennsylvania nursing home is $113,150
• How would such a move affect your family’s schedule and travel time to you?
The above items are just a few of the topics that should be considered regarding your aging in place needs. If you have questions, we would be happy to discuss this topic in more detailed manner with you.
BrightStar Care is a well-known Bucks County PA home care provider. We provide homecare, including Alzheimer’s, elder care, long term care, childcare. We also provide medical staffing solutions in Lower Bucks County, PA. We have developed an impeccable reputation throughout Bucks and Montgomery County for exceptional service and value. If you have any questions regarding aging in place for you or a loved one, we would be happy to speak with you and answer any questions you may have. If you are looking for professional caregivers in Bucks County PA, contact us at 215.750.8802. We would be happy to assist you and your family. – Brian Fitzpatrick/Owner of Bucks and Montgomery County BrightStar Care.
A lack of oversight in the rapidly growing home care workforce could undermine new wage and labor gains for many of the nation’s 2 million workers, according to a report released recently.
Private agencies employ the vast majority of home care workers, who provide services that are largely paid for by Medicare, Medicaid and other federal and state programs. But the companies are poorly regulated, which could hamper the enforcement of new labor standards, said the National Employment Law Project (NELP), a labor advocacy group.
Home care workers this year gained federal minimum wage and overtime protections after a lengthy battle in the federal courts. The U.S. Department of Labor is expected to begin full enforcement in 2016.
To ensure that workers can take advantage of the new benefits, stronger oversight of the industry is needed, said Sarah Leberstein, one of the report’s authors.
“We are poised to really improve things for home care workers but we need to make sure that those standards are upheld no matter what the work arrangement is,” she said.
For example, Leberstein said a worker may not benefit from the federal minimum wage and overtime laws if her boss calls her an independent contractor, a classification traditionally not covered by employment laws, and if no enforcement agency questions the designation.
Home care workers are among the fastest-growing occupations, according to the Labor Department.
There are different types, including home health workers who provide medical care, and personal care aides, who help with bathing, eating, shopping and other tasks.
The average wage of the largely female home care workforce is about $10 an hour and nearly 50 percent of them rely on public assistance such as food stamps, according to the Paraprofessional Healthcare Institute, which does research, training and advocacy for direct care workers.
Personal care workers in particular have long been underpaid and have lacked worker protections, unless they happen to be in a union or employed by an agency with good benefits, said Susan Chapman, a professor at UCSF School of Nursing, who was not involved in NELP’s report.
Those poor working conditions, along with an improved economy, have contributed to a shortage of paid workers to care for the aging population, Chapman said.
“If you could work at a coffee house with benefits and higher pay, you would take that job over working in a home care situation,” she said. “The care is valued but the workers are seemingly less valued by our economy.”
Neither the federal nor state governments require home care agencies to report data on workers’ wages and hours, the report said. Without such transparency, they can’t determine the amount of public funds used for agency’s overhead versus employee pay, NELP said.
“As taxpayers, we really should care what is going on with the money that is supposed to be used to provide really critical services for people with disability and older adults,” Leberstein said.
The authors’ recommendations include paying workers $15 per hour and ending government contracts with agencies that have a record of labor violations. The report also recommends that home care agencies be required to produce wage and hour reports on employees.
If governments regulate the agencies more strictly and monitor them more carefully, workers would have a better chance at getting fair pay and decent working conditions, NELP said. Turnover also might be reduced and the quality of care might improve as well.
“We think it’s the federal and state governments that should take the lead in reforming the home care industry,” said Leberstein. “They have a lot of power to do this because they are paying for home care services.”
The holidays can be a really fun time of the year for seniors who are getting family and friend visits but when someone is living with dementia it may be a challenge for family to know how to interact.
Helping families to have successful visits can make your team stand out and more deeply connect with families. Here are 5 tips to help families to have successful holiday visits:
Send a note to families, before the holiday rush with suggestions for how to engage with their loved one during the holidays. There is a great list of suggestions available from FIT Kits® HERE that you can use in your letter and refer families to.
During your care meetings leading up to the holidays, ask caregivers to identify what times for interaction work best for each person. Be sure a caregiver communicates that specifically to family so it helps set the stage for a successful visit.
Ask caregivers to have in mind a few activities that the person enjoys and be ready to set them up for families when they arrive. This is an opportunity to showcase the expertise of the caregivers and create a specific connection to the family. Ask caregivers to actively help families by asking if they’d like some suggestions for what to do during a visit and setting them up in a quiet area.
Have caregivers introduce themselves to new family members and answer questions. During the holidays many family members visit from out-of-town and may have anxiety about seeing their loved one with dementia. Ask caregivers to be on the lookout for family members that seem new, awkward or uncertain and have them intervene by introducing themselves and answering questions about the family member.
Prepare your team. This is really important because it is easy for everyone to get so involved in the day-to-day work that they forget how important a family visit is for the senior and for the family members. For some out-of-town family, it might be their only visit all year. This is an opportunity for the staff to show what they know and how in tune they are with each person living there. Remind your team of how important they are and how to help make each visit special.
“This has been our most delightful visit with (my mother) in years – not because she changed, but because we did.” – Family member working with Steven Sabat, PhD
So many people are coming through your community during the holidays and every one of them will be sharing their experience once they leave. Help them all have a good memory to rave about with others.
By taking the extra time to prep your team and approach every family interaction as an opportunity, you confirm why they chose you to care for their loved one.
Home-based healthcare is a growing job market for professional caregivers. If you are comfortable performing intimate tasks for people in need, then you may want to consider a career as a Home Health Aide, Certified Nurse Aide, or Registered Nurse. Training and certification requirements will depend on which path you choose and where you get certified.
Becoming a Home Health Aide (HHA)
Home Health Aides provided basic personal care to patients, which may include assisting with hygiene, dressing, preparing meals, housekeeping, and transportation. In some cases, HAAs may also provide limited medical assistance, like administering medications, dressing wounds, as well as checking vital signs under the supervision of a nurse.
In the United States, certification requirements for Home Health Aides include 75-180 hours of classroom training and 16-80 hours of clinical training, depending on the state. You may be able to receive free training, so check with your local labor agency.
Becoming a Certified Nurse Assistant (CNA)
Certified Nurse Assistants often have more contact with their patients than anyone else on a caregiving staff. Like Home Health Aides, CNAs also help patients with feeding, bathing, and dressing. CNAs may also listen to their patients’ health concerns, note symptoms and changing conditions, as well as report information to supervising doctors and nurses—so communication skills are key.
Before entering a certification program, you must have a High School Diploma or GED. Certified Nurse Assistants must complete at least 75 hours of training, as well as pass an examination. Contact your state nurse aide registry or licensing board to find out more information.
Becoming a Registered Nurse(RN)
Registered Nurses can work in a wide variety of facilities, and should be prepared to supervise Home Health Aides, Certified Nurse Assistants, and even less experienced RNs. Registered nurses may perform health assessments, make health recommendations to patients, and execute medical regimens as prescribed by a licensed physician.
Registered nurses must graduate with at least an associate degree in nursing. You may choose to pursue additional credentials through a bachelor or master of science degree in nursing. Upon completion of an accredited training program, an RN must pass the National Council Licensure Examination (NCLEX-RN).
Where to Get Trained
Training programs for Home Health Aides and Certified Nurse Assistants may be offered by the American Red Cross, community colleges, technical and vocational schools, online training programs, as well as local health care providers.
Registered Nurses must train at a college, university, or in-hospital training program.
Things to Remember
Make sure the training program you choose is accredited by checking with the National League for Nursing Accrediting Commission.
Learn about local certification requirements through your city or state health department.
Find out about free training through your city or state labor department.
As a professional caregiver, you’re well aware that death is inevitable. While you’ve probably had specific training on the steps to take when a client passes away while under your care, many instructors fail to address the crucial interaction you may face with your patient’s family after the fact. This brings up an important question: How involved is too involved when a client passes?
While many of the following suggestions depend on both the length of time the client was in your care and the relationship you built with the patient and their family members, this will give you some ideas for showing your respect after your client departs this world.
Mail a Sympathy Card
Sending a sympathy card is always a safe recourse, even if you’ve had minimal contact with the client’s family. A card will always be appreciated and will let the family members know their loved one was more than a job to those involved in their final days.
If you spent an extended period of time with your patient, you might consider sending flowers to the wake, or making a donation instead if it was specifically requested. If you have one or more colleagues who also attended the client, it is perfectly acceptable to send one arrangement from all who were personally involved.
Attend the Service
It’s not at all unusual for caregivers and physicians to attend the funeral of a beloved patient. According to Professor Bruce Arroll at the National Institutes of Health, a professional’s attendance at the funeral “may help the relative over the shock and the initial grief and prepare them for gradual acceptance.”
Sometimes a caregiver spends months or years taking care of a client and becomes accepted as an extra family member. If this is the situation you’re facing, you should understand you’re most likely going through the grief process yourself. It’s not unprofessional to offer more than the minimal in this case, so here are a few ideas if you feel you should go the extra mile when a beloved client has passed away.
Order Funeral Cards
If you know the family is on a tight budget, you might consider making a contribution to the funeral itself. This doesn’t have to be anything major. You could pay for something small like funeral prints, photo books or prayer cards as a thoughtful way to show how much the client will be missed by you, as well as the family.
Pick up Meds
Often the devil is in the details, and something as simple as offering to pick up the client’s medications and delivering them for proper disposal will seem like a monumental chore to a grieving family. A caveat here: If you offer to do this, make sure you leave a detailed inventory of the medications before you take on this responsibility.
Many times a patient has special needs during their final months or days and family members are unaware of the protocol involved in returning equipment that has been leased or borrowed. Oxygen tanks and wheelchairs are typical in this category, and you can volunteer to return them or notify the supplier for pickup. Unused supplies such as bandages can often be donated to an organization which helps the uninsured.
Bring a Meal
Bringing food is the universal sign of friendship and comfort, so don’t worry about falling back on an old standard. A casserole or other foodstuff which can be easily reheated will always be appreciated, especially if the immediate family is faced with a deluge of visitors from out of town.
Call a Week Later
If you feel like a part of the family, don’t hesitate to stay in touch. Often the survivors feel lost once the wake and funeral is over and the reality of their loss begins to set in. Calling or visiting will remind them that their loved one was more than just another patient to you, so don’t be afraid to talk about your client who has passed. Reminiscing about a fond memory may be the key they need to process their loss and begin the next stage of life without their loved one.
As you go through the process of comforting your client’s survivors, keep in mind that caregiving is a stressful occupation. Regardless of your professional attitude, you may also be suffering from the loss of a beloved client. Remember the stages of grief: denial, anger, bargaining, depression and acceptance. Take some time for your own emotions to process the loss, so you don’t end up suffering from occupational burnout.
For trauma workers like Jonathan Bartels, a nurse who has worked in emergency care and palliative care, witnessing death over and over again takes a toll. Over time, they can become numb or burned out.
But about two years ago, after Bartels and his team at the University of Virginia Medical Center in Charlottesville tried and failed to resuscitate a patient, something happened.
“We had worked on this patient for hours and the chaplain came in and kind of stopped everyone from leaving the room, and I’m like, ‘Wow, that’s really bold,’ ” he said. “She said, ‘I’m just going to pray over this patient and then you all can leave.’ And I watched it and I felt – it was the act of stopping people — really inspired me.”
While the prayer wasn’t totally comfortable to him because Bartels, like many at the hospital, is from a different religious tradition, the pause felt right.
“So the next time we worked on another person who didn’t make it, I decided to be bold and stop people from leaving,” he said. “I just said, ‘Can we stop just for a moment and recognize this person in the bed? You know this person before they came in here were alive, they were interacting with family, they were loved by others, they had a life.’ ”
The team did it – they stopped, just for a minute.
“When it was done, I said, ‘Thank you all and thank you all for the efforts that we did to try and save them.’ People walked out of the room and they thanked me and they thought it was really awesome,” he said.
The idea began to spread throughout the hospital, particularly to emergency department workers. The Pause, as it has become known, also is being taught as part of the curriculum at UVA nursing school. Emergency medical technician Jack Berner says it helps him handle the toughest cases.
“It makes it so we can actually view the person as a person rather than as a patient that we see on an everyday basis,” he said. “You can relate more to the case [knowing] it’s somebody’s father or their mother, their sister or their uncle, rather than somebody you just see for five minutes.”
Bartels hopes The Pause will help medical workers like Berner accept the loss without disconnecting emotionally.
“So you are able to feel and you are also able to sense and give back,” he said, even if it’s not a relative, a worker can have a sense of being a part of a loss. “I can also acknowledge the pain that I bore witness to in caring for that family and caring for that patient,” he explained.
The concept is spreading beyond UVA. After the dean of UVA’s school of nursing talked about the practice in a speech at a national conference, a nurse from Providence Sacred Heart Medical Center brought it across the country to Spokane, Wash.
This story is part of a reporting partnership with NPR, local member stations and Kaiser Health News.
So many of my friends had no idea what a caregiver was and insisted that if you were outside of senior care then no one would know what I was talking about. So I wanted share more about this role before I get into some more interesting posts.
The title of caregiver in the senior care industry really is a label we have created for a certain group of people providing the direct care to the senior. The title on a job description denotes that it would be a specific employee that would do the tasks to make sure the care of the senior was up to par. Those tasks might include dressing, feeding, bathing, and socializing. So yes, we do have a certain job title for a caregiver BUT what I want to explore at The Spunky Caregiver is a broader definition of a caregiver, that caregivers exist in many fields of work and that it can be a behavior type as well as a job title.
In my definition, a caregiver is someone who is providing care for a person that ensures their physical, mental, and emotional well-being. So in a senior care property this can include: the kitchen staff that prepares and serves the food, the housekeeper who reports anything they see that might be affecting care, the administrator who is jumping in to provide direct care when needed, staying late to help the caregivers, or covering a shift when someone calls out, the maintenance man who watches a senior to see what adaptations they can make to their room for safety, the secretary who helps makes doctor appointments and connects with the family, etc.
Everyone that participates in ensuring the well-being of a senior is “giving care.” This crosses lines into other fields of care. Though I focus on senior care, here are a few other examples: RNs, LVNs, and CNAs in hospitals that work with all ages, teachers, cafeteria workers, secretaries in schools and then the obvious parents and grandparents.
I hope that gives some clarity on the definition and helps us explore further in upcoming posts how we can evolve in the senior care industry, engaging ALL levels of caregivers to unleash their stored potential.
Though male nurses make up a small minority of the nursing population, they still manage to be the butts of a majority of jokes when it comes to the medical profession. However, that shouldn’t be the case and our buddies over at Online Nursing Schools decided it was time to recognize our unsung heroes of medicine. Brought to you by onlinenursingschools.com via guyism.com.
The conversations that matter most in healthcare are often the most sensitive and challenging. From conveying serious diagnoses to ethical quandaries surrounding end-of-life care, these conversations are the bedrock of the patient-provider relationship. When they go well, patients’ health outcomes, trust, and satisfaction with care are enhanced. In her highly praised TEDx talk, On Being Present, Not Perfect Elaine C. Meyer, PhD, RN draws on both professional and personal experience to illustrate the profound gaps in healthcare communication and how to close them. She unveils her vision to establish an emotional standard of care for patients and their families through honest, direct and genuine healthcare conversations. She introduces the “one-room schoolhouse” educational approach and shares the Wizard of Oz metaphor blending Courage, Brains and Heart to guide healthcare conversations. She also provides a helpful companion Facilitator’s Guide to deepen the learning potential of the Talk.
In a seemingly previous life, I was a Recreation Therapist(CTRS). It was a great profession to be in. I worked on an acute rehab unit, and AIDS/HIV unit(now long closed) and a SNF. I worked with amazing professionals. As I reflect on how that career led me here, I realize that the very foundation of Recreation Therapy is what we now call Person-Centered Care. The interests of each individual were at the core of the treatment program I designed. Every part of their life was taken into consideration during sessions I had with them and was fundamental in every decision we made about their care. And that continues to be what I see as the path to empowering the people we work with to live a rich meaningful life.
At the initial meeting with every patient we would complete a Recreation/Leisure assessment to discern what was functionally important to that person and what brought meaning to their lives. From there we would plan out their therapy regime, intending to get them back to doing what made their life worth living.
Completing a Leisure History with seniors can be really powerful. When I was at University I had to do a leisure history of an elder. I chose to interview my grandmother. I found out SO much information about her youth…they used to roast chestnuts in the gutters in Philadelphia as a teenager, her future husband used to walk 5 miles to her house (and back) to see her, they loved to dance, her house was one of the early houses on the street to have TV, she traveled by train when he joined the military during WWII ….etc. That interview changed our communication. We got closer and we had new things to talk about.
This week I made a mini-version that can be used in Long Term Care communities where therapy is not the primary goal but living a meaningful life is. I called it a ‘Leisure History’ and modified it to a simple form that can be used by any staff member and should be in turn be shared with every staff member. You can mark it up and then use the back for extra notes and interesting stories to share. Please feel free to use it and pass it on to anyone else.
Using a Leisure History to Empower Staff and Employees
Two ways to use this form:
Fill it out with every senior that moves in. Make it a policy that it is completed by a staff member and shared with the rest of the staff within 3 days of arrival. I would ideally suggest the day after move in. At least 20 minutes should be set aside to complete it. This form should be a conversation starter, not simply a check list. It is a way to open the door to get to know someone. Sit down and offer them some tea so it becomes a visit rather than another requirement during their move. If they can not communicate, engage a family member in the process. As a new person moving into a foreign, scary place mostly likely in a time of great change, having a 20+ minute conversation with one person can give them a friendship, an anchor in what is about to be many weeks of adjusting to change. This completed form should be available for staff members to see so they can create a relationship based on commonalities and interest of the individual. Activities offered should be based on the information gathered in the leisure history. For example: If in the notes the person said they hate Bingo, then the staff should try to convince them to play Bingo. If they like music, it should say what kind, so offer to put that kind of music on their radio. If they have always chosen to be alone, give them them the final choice when asking them to join groups. A leisure history is an intimate view of what makes up this person’s life and puts the focus on the unique individual.
I would like to suggest that using this form is highly beneficial to your staff as well. If you ask people that work in long term care what they like about their job most will tell you it’s the seniors. Getting to know our elders is the best part of our jobs. We laugh at their stories, we cry with their pain and loneliness, and we are let into their most intimate daily routines. Having a full leisure history allows us to more deeply connect with them. We can know them better and have deeper relationships. Having good relationships at work makes us happier at work. Every staff member should fill one of these out for themselves. It is a great reminder of what makes us happy and that can be shared with the seniors. It also can generate conversations and relationships between co-workers and be the foundation for upcoming employee appreciation.
Click on the icon below to get your form:
In Long Term Care the focus should be on the person, not the diagnoses. The Leisure History gives you and your staff an opportunity to engage more fully with every person in the community and make their lives more meaningful.
Last year I attended an excellent conference called the Pioneer Network Conference. After one of the fabulous sessions I spoke with the leader who is well-respected in the Culture Change movement. When she heard my company name she looked at me and said, “Did you like the session? We use the word Care Partner.” Honestly, at the moment, her snarky tone was so light that I almost didn’t catch it and I felt a little confused. From this brief exchange, it seemed the title Care Partner was superior and Caregiver was frowned upon. I have worked with seniors since 1997 and during her session was the very first time I had heard the title Care Partner in exchange for Caregiver. This conference of Culture Change was so exciting for me that I was hearing many thought provoking ideas, this was just one of them.
The fundamentals of the Culture Change movement teachings were not new to me. They are what I have been talking about and sharing for years. These ideas are exactly why I founded TheSpunkyCaregiver.com but what was new to me about the Culture Change movement was the language.
Since the conference, I have thought a lot about using the words Care Partner in place of Caregiver. I agree, the title focuses on partnership and implies that the senior is actively engaged in any care they receive which is really important in person-centered care. So mostly I love it.
On the other hand, this title will take time to effectively integrate into main stream professional senior care corporations and systems. Now, every time I speak I am making a decision about which title to use. In the senior care world I came from, Care Partners are those people, organizations and services that are part of helping a senior but are “outside” services – such as hospice, PT, OT RT, neuropsychologists, etc. So choosing to use the term Care Partners rather than Caregivers in a conversation can create more confusion that is alleviates.
Caregivers or Care Partners – What’s the word?
Words have power. I think using the title “Care Partners” is a great way to change the conversation about the role of the people who care for our seniors. I spend a section in my upcoming workbook addressing this topic because I do believe, how we talk to and label people matters. I also believe we can create a revolution and change our senior care culture, while continuing to call people Caregivers – because the value we place on someone and their work day-to-day transcends the label we put on the job. And I believe that is where true change comes from.
In the past 10 days, 3 women over the age of 70 have dropped the F-bomb while talking to me. Yep.
And that made me think more about one of the very struggles and frustrations I have always had while working in elder care – balancing “being real” with being “professional.” While talking last week to a colleague, she said that one of the obvious expectations while working in corporate America is that you have a personal life and a work life and the two should not mingle.
Do organizations that provide elder care focus too much on this as well? Has it gotten too corporate? The philosophy that is advocated for these days is “person-centered care.” Providing person centered care and engagement requires an intimacy, a knowing of the person you are working with. The only way to really have this knowing is by being transparent yourself. And if you are expending your energy (wasting it I might add) on trying to be your “work” self, the result is a distancing from the person you are trying to get closer to. Intimacy is the primary thing we all crave, that makes us feel valued and whole. If professionalism suggests that we leave part of our real self at home, we are missing a part of our self while interacting at work and we are not whole. We lose the opportunity to be truly authentic and connected with those around us.
In 1997 I was working in a hospital, primarily with people who had some type of neurological “injury” – at the time that was maybe 50% had a stroke which put much of the population I worked with over 65. I had an eye brow ring and punked out short blond hair. That eyebrow ring was an incredible touch point. It created conversation and intimacy that I would have had no other way to create. It made people laugh, get angry, fear for my future, ask questions, counsel me, become intrigued but most of all it was a way we really connected. One day I ran into the CEO in the hallway. He asked me to take out my ring…because it was “unprofessional.” I was so bold, I said “not until it’s in the employee handbook.” For two reasons – one, I was a bit of a rebel but the second was because I knew that that simple social rebellion and self-expression (in ’97 not every kid had a facial piercing) connected me with SO many people in an interesting way. I simply didn’t care about “professionalism,” I cared about realism and connecting with other humans as I was. The result: I was good at my job and really well-liked.
That thing which was different and edgy helped to create intimacy and connection. That “thing” wasn’t who I was but it was an outward expression of who I was and it provoked curiosity. Self-expression – physically, verbally, energetically, makes us all interesting and unique. Respecting another does not require us to stop self-expressing… this includes while we are working with elders.
What I have in fact found is that when I am real, raw, honest, opinionated, creatively expressive – that is when people feel open and connected to me – particularly elders!! When I am focused on how I am dressed and acting “appropriately,” I miss so many opportunities – the energy I put into monitoring myself is what I could be putting into being present.
Elder care communities that are interesting and engaging are not stuffy. There is laughter, there is debate, there is expression and often messiness mixed in. It’s not about appearances, it’s about experiences. To assume that our elders … who, by the way, are about to be the rowdy, rebellious, bold, outspoken, creative, drug curious, big thinking, opinionated, fascinating crowd from the 60’s … are so easily offended and require a gentle “professional customer service” approach is almost laughable. They want to keep living and feeling and being provoked to think and create. They want interesting activity – and seriously, what is interesting about being proper and dull (that creates distance and a false sense of safety.) And I have found this all along the way even with the stoic generation of elders we have been serving!
Kindness, vibrancy, authenticity and connection are above all what I want if I have to live in an elder care community.
To go back to the F-bomb, I do use “inappropriate language” during my consulting when I sense that we need to cut through the distance and get real. I find it instantaneously wakes up the room and changes the perspective – I become real. I also tell vulnerable, uncomfortable stories when I want a group to feel that I am real and not another “professional” who is separate or above them.
I am not suggesting that you encourage your staff to start integrating bad language into their work routines. But I am suggesting that you consider what level of “professionalism” you would want if you were in an elder care community. I can tell you that the people I know – yes half of my close friends are over 65 – are resistant to living in an elder community because they (and I) fear the lack of real true connection with others. The noise of real conversation, the freedom to do and say what we want, of being exactly who we are, when we want and the fear of going to live like we are living in a hotel with stuffy customer service everyday. I can feel the fear rising! And honestly, like now, I will welcome the good use of “inappropriate” language when it is warranted.
Every person connects in a unique way – elders and staff members. Teaching your team members how to connect in a person-centered way without sharing their drama will give them the freedom to access all of their energy, not wasting it on being professional but using it on being real.
Are you thinking about becoming a professional caregiver? If so, I will provide you with the steps I took to become a professional caregiver. Since my experience does not reflect what all home care agencies expect, I will also discuss steps outside of my experience.
Here is what I had to do
Signed up for training (the training was free)
Attended an orientation
During the orientation I was given a competency exam.
Went to a short interview that was no longer than 30 mins. The interviewer asked me for my resume and why I wanted to work for the agency.
Within two weeks, I attended the first day of training. The training was a month long.
Throughout the training, I was quizzed at the end of each week based on the lesson plans. The lessons were based on health, nutrient, diseases, mental illnesses, disabilities, medications, medical terminology, and safety.
In the middle of the training I was told to get a physical exam and a random drug test.
I also had to perform hands on exams such as hand- washing, bed baths, bed- making, dressing, transferring patients, and taking vital signs.
At last, in order to earn my home health aide and personal care certificate I had to accomplish one more step. I participated in a adult daycare facility, where I was assigned to one patient from the hours of 9-5pm. I interacted with the patient, engaged in activities, and assisted my patient in the restroom. It was also my job to feed my patient breakfast and lunch.
There you have it, as the training came to an end I was so excited to start. I was sent to a client’s home within one week after the training.
Now I will be providing you with a list of steps that other home care agencies might require.
Typically a high school diploma or experience is not required but depending on the state you live in requirements varies. Be sure to get information on that before applying for a professional caregiver position.
You can apply online and once you receive a phone call, you’ll bet set for an interview
Training is mandatory ( some agencies may charge)
Training may be similar to my experience
Some states require at least 75 hours for training
Can the way hospitals are designed improve the experiences of staff and visitors, and even the recovery of patients? Lucy Maddox finds out.
“If one room can alter how we feel, if our happiness can hang on the colour of the walls or the shape of a door, what will happen to us in most of the places we are forced to look at and inhabit? What will we experience in a house with prison-like windows, stained carpet tiles and plastic curtains?” – Alain de Botton
This summer, Laura gave birth to twins. Five weeks early.
Laura’s girls were looked after in the Dyson Centre for Neonatal Care at the Royal United Hospital in Bath, England. Laura arrived there after a caesarean section, having lost more blood than expected and with a dangerously low temperature. Despite her condition, she remembers being wheeled through the double doors of the Centre for the first time: “It’s kind of a blur,” she says. “But I do remember the light just really hitting me.”
To reach the Dyson Centre you have to walk, or be wheeled, through the old corridors of the main hospital. It feels hot, that particularly uncomfortable hospital warmth that amplifies the medical smell. Your shoes click on the lino floors and the sound echoes off the plain walls.
As soon as you go through the doors to the Centre, things change. It is light, airy and spacious. Natural wood and soothing greens make it feel more like a Scandinavian spa than part of a hospital. You’re greeted by a wooden reception desk, and to the left, French windows open onto a Zen-like pebbled garden. It smells slightly of chlorine, like a posh swimming pool.
The Dyson Centre, finished in 2011 and funded in part by Sir James Dyson, of vacuum cleaner fame, is an example of a new and different type of healthcare design. Deliberately distancing itself from the traditional hospital look, feel and smell, this and other places like it are drawing on a growing body of research that shows that buildings themselves can speed the recovery of patients, as well as boosting the health and happiness of the staff who work in them.
The Dyson Centre is eight decibels quieter than the old Neonatal Intensive Care Unit that it replaced, and has both more natural and more controllable light. A central corridor loops round in a horseshoe shape with smaller rooms coming off it. The ceiling of the corridor is high, with skylights running its whole length, bright blue sky visible throughout. The upper walls are painted moss green. The floor below is a sandstone colour and the walls and the ceiling beams are whitewashed wood, not unlike a sauna.
The babies who need most care are in the high-dependency room. It’s dark as you enter, but the room still feels spacious, and the size of the tiny babies makes it seem even bigger. Born before they were quite ready, the babies are a disconcertingly dark red colour and lie in futuristic white cots with plastic bubbles protecting them. Further round the corridor the rooms progressively become lighter, with fewer machines, and bigger, healthier-looking babies.
The ward was designed to give parents a sense of progress as their newborns move from the high-dependency room to regular neonatal rooms. Laura, mum of the twin girls, noticed this sense of flow: “It’s like a horseshoe really. You have to make your way around.”
Looking at the original sketches for the Centre, one of them stands out. The architect has drawn the building like a hug, its arms enveloping a baby. “The whole point… was to provide a secure base,” says clinical psychologist Dr Mike Osborn, who was part of the team consulted about the design. “Secure base” is a term from attachment theory. It explains how as infants we attach to our primary caregivers, using them as a secure base from which to explore the world, and returning to them when we are afraid, ill or in need of care and reassurance. “Essentially we want the building to be a great big nurse. A really good nurse,” he says.
The design principles in typical healthcare environments inadvertently make patients and staff more stressed, Osborn says. “Ceilings are low, the lights are glaring, the floors are noisy, the privacy is non-existent,” he says. “It all accumulates to push us towards hyperarousal… it’s not soothing at all.”
For a building to be therapeutic, it should have spaces that flex to allow both sociability and privacy. Social spaces with comfortable, movable furniture encourage people to speak to other patients. Places that encourage family and friends to visit, like single-bed rooms or private areas which can be screened off, increase visiting, reduce patient stress and speed up recovery.
The Centre has been designed to allow families to get a balance between socialising with other patients and privacy. For example, relatives are free to rearrange the chairs, which are different heights: tall ones for looking in the incubators and lower, more comfortable ones for holding the babies.
“It’s very different,” says Debbie Grant, nurse specialist at the Centre. “I can honestly say I fell in love with this building.”
James Dyson, who enjoys living in the Wiltshire countryside, believes that good hospital design can make people get better more quickly. “Well-considered design and the inventive use of technology at the Dyson Centre for Neonatal Care is improving the health of premature babies,” he says. “New research, comparing the old and the new building, has proved that the building is a treatment in itself.”
Clinicians from the Centre were involved in the research to measure the impact. Unable, for obvious reasons, to ask the babies themselves how they felt, the team devised new and ingenious ways of measuring the activity of babies, staff and parents.
Ten families using the old unit and ten families using the new Centre took part in the research, along with over 40 staff members. Staff movement was tracked using wifi and infrared receivers. The result? Staff in the new Centre spent nearly twice as much time in clinical rooms with the babies as the staff in the old unit did.
The tricky problem of how to measure the babies’ activity was solved by designing special baby accelerometers that fix on to their nappies. Usually used to measure the speed and movement of aircraft and sportspeople, the accelerometers were repurposed to monitor the breathing patterns of the sleeping babies, without any need for invasive tubing and tangled wires. “We had to colour-code them because initially people started throwing them away with the nappy,” says Professor Mark Tooley, a consultant clinical scientist who co-led the research.
The babies in the new Centre slept for 20 per cent longer than those in the old unit. Dr Bernie Marden, a consultant neonatologist who co-led the research, explains that this is crucial for premature babies, because sleep is “when all the brain development gets done”.
Parents visited the new Centre for an average of 30 minutes longer a day. Parents and staff reported feeling less cramped and less stressed than those in the old unit. Ninety per cent of babies observed in the new Centre were breastfed, compared with 64 per cent of those studied in the old unit.
Now, Osborn and colleagues are hoping to employ the principles used in the Centre to create a new cancer centre. Dyson has agreed to fund part of it, and they are fundraising to cover the rest. Osborn explains that in a cancer centre the cure is also sometimes part of the stress. He thinks that the gruelling nature of chemotherapy and radiotherapy shouldn’t be underestimated: “It’s all relative because however nice the place is, it’s still the scene of the crime.”
Research into buildings that make us recover better goes back to the 1980s, and has gathered momentum in recent years. Roger Ulrich, Professor of Architecture at Chalmers University of Technology in Sweden, was one of the first to research how hospital buildings can affect patients.
In 1984, Ulrich took advantage of a natural experiment created by a long hospital corridor, in which half the patients had a view of a brick wall and half a view of trees. The patients facing the natural view got better more quickly and reported less pain than those facing the wall. They asked for fewer painkillers and reported fewer minor complications like headaches or sickness. “Reducing stress, and distracting patients from their internal focus or their obsession on their own pain, reduces the pain,” says Ulrich.
Other studies have shown similar results. In one experiment, bedridden heart-surgery patients were given colour pictures to look at after their operations. Patients looking at an open, well-lit and natural image of trees and water needed fewer painkillers than patients who had no picture or an abstract image. Another study found that healthy volunteers sat in a hospital had a higher pain threshold and better pain tolerance when they were watching a video of nature scenery than when they were watching a blank static screen.
Healthcare design has been improving in the USA, western Europe, Australia and parts of Asia, says Ulrich. The USA, in particular, is leading the way with design initiatives that aim to reduce the spread of infection, such as single-occupancy rooms. In one study, at McGill University in Canada, a move to only single bedrooms in an intensive care unit resulted in 10 per cent shorter stays than in another unit in a local hospital where not all the rooms were single.
Sleep is important. Poor quantity and quality of sleep can lead to increased stress, impaired immune function and difficulties with temperature regulation. Perhaps unsurprisingly, patients in quieter hospitals report that they sleep better. A quieter environment is also associated with fewer patients returning to hospital after discharge, perhaps because of the additional benefits that sleep brings.
The impact of noise on staff has been less widely researched, but this is changing. Studies show that working in quieter hospitals can buffer against stress at work, possibly also helping clinicians to sleep better when they go home. Less noise and better-lit environments also reduce clinician error.
Naturally lit rooms, which allow patients to see whether it’s day or night, have been linked to better sleep, less pain and less stress. In one study patients in naturally lit rooms took fewer painkillers than those in darker rooms, leading to a 21 per cent reduction in medication costs.
The Maggie’s Centre at Newcastle looks a bit like a Teletubby building as you view it across the car park, from the entrance of the main cancer ward. Surrounded by wild flowers and vibrant green grasses, it is topped off, mushroom-like, with a flattened solar panel. As you approach, the head of a tall statue becomes visible over the fence.
Inside, the building exudes a heavy feeling of calm, like a very expensive, modern house. The building faces south and light floods in through the windows. You can see flowers or grass from every room. Nature is reflected on the inside too, where most of the surfaces are wood. In the kitchen, there’s a long wooden table in front of the doors that lead out to the garden. Outside, people are sitting at another table, chatting and drinking tea out of nice mugs. There is nothing clinical about this space. It feels more like somewhere you’d spend a weekend away in the country.
Maggie’s centres are built in hospital grounds specifically for people affected by cancer. There are 15 centres around the UK and one in Hong Kong, with more in development. The centres were the idea of Maggie Keswick Jencks, a designer married to the architect and designer Charles Jencks. After being diagnosed with cancer, from which she died in 1995, Maggie worked to create a blueprint for a place for people affected by cancer that was different from the traditional hospital. Each Maggie’s centre is designed differently, following the blueprint of essentials which Maggie and her husband drew up.
The Newcastle Maggie’s was finished in 2013 and designed by architects from Cullinan Studio in London. One of them, Lucy Brittain, explains how the centres began: “Maggie got her diagnosis [of cancer]… in her 20-minute slot with her consultant, who then said ‘I’m really sorry, I know it’s terrible news, but I’ve got another patient to see.’ And she was in shock. She got put out into one of these stereotypical corridors with nowhere to sit, and all she wanted was to go and have a cry and take it all in.”
Maggie wanted to have a more human place to absorb what was happening, and thought about what patients and families need during cancer diagnosis and treatment. The brief she came up with is hard to categorise.
“Charles Jenks writes that [the Maggie’s Centres] are like a balance between all these typologies,” says Brittain. “So it’s a bit more than a house, but it’s not a house, and it’s into art, but it‘s not an art gallery, and it’s kind of spiritual, but it’s not a church, and it’s like a hospital, but it’s not medical.”
“I came to look around… walked in, and had this amazing feeling, like never before,” says Karen Verrill, Head of the Newcastle Maggie’s, remembering her first visit, made while she was deciding whether to accept the job.
People often arrive at the Maggie’s Centre when they’ve just been given a diagnosis. “A lot of it doesn’t register properly,” says Verrill. “It’s not unusual to see someone walk across the threshold for the first time and burst into tears. I think it’s that they’ve found somewhere safe to come to.”
Cancer treatment often requires a lot of sitting around and waiting. “When somebody’s very ill and they need to be rushed in, they don’t care where they’re going as long as it makes them feel less ill,” says Verrill. “But when you’re having routine treatment for a life-threatening illness like cancer, that’s when the environment makes more of a difference.”
Verrill thinks the building also makes it easier for the staff to cope with their sometimes difficult jobs. “Treating people every day, all day, can take its toll… [But here], if I’ve got a few people waiting for me, which I often do have, I don’t feel as stressed as I used to… For me it’s an amazing place to be, to work.”
JJ was a young Royal Navy submariner when he found out that he had cancer. He is still in his early 20s, but looks older. JJ hated to eat in the hospital so Verrill used to pick him up some tea to have on days when he was due for treatment. “I can’t really remember the first time I came. I wasn’t in the best place,” says JJ. “They thought I wasn’t going to survive.”
At Maggie’s, JJ likes to spend time in the kitchen, “in the centre of it all”. But he also appreciates the flexibility of the space. “There’s places you can disappear to as well. I used to go and have a little sleep. I don’t do much here, I like to soak it all in. I’ll sit and talk to people, sit in the garden and absorb the weather. It’s therapeutic.”
Simone, 46, speaks of her experience in hospitals: “Some of those corridors really give you the creeps. They’re those sort of beige magnolia colours, the sort of slightly sick vomity colour… and that feeling of being really claustrophobic. And the waiting rooms… you were all sitting almost like on a bus.”
When Simone had to decide whether to have chemotherapy, coming to Maggie’s really helped: “the light, the kitchen table, everything is so welcoming and so inclusive,” she says. “Somebody just made me a cup of tea and I waited for Karen… That sense of being really valued at a time when you are really struggling is very important…
“People can walk in here and come in anonymously… if you just want to sneak in and make a cup of tea you can do that. Usually somebody will smile at you but no one will force you to do anything.”
Most of us have been lost in a hospital. The corridors all look the same, the signs for the department you want are there one minute and then gone the next. Everybody seems too busy for you to bother them asking for directions.
Getting lost is not only a cause of stress to patients and their families, but, when staff have to give directions, it is also a waste of clinical time. One study in a 600-bed hospital estimated that poor wayfaring cost over $220,000 a year. Much of this was due to the 4,500 hours of clinical time a year – approximately two full-time positions – that was spent giving directions to lost patients and even staff.
Signs at every junction and clear demarcations of different areas with visual cues such as different-coloured floors or walls can help. Some of these principles have also been used for making wards dementia-friendly.
While clear wayfinding is crucial, the research suggests, weirdly, that we also do better in buildings that are not totally straightforward. Therapeutic spaces need to take into account not only the balance of sociability versus privacy, but also the tension between simplicity and complexity. Layouts need to be coherent enough for us to feel we that understand where we are and can interact easily and safely, but complex enough to give us a sense of exploration and mystery, a feeling that not all the space has been revealed at once.
The idea of mystery as a therapeutic element in hospital spaces seems counter-intuitive: why would we want to make environments more complex? The idea comes partly from evolutionary theories that suggest we will stay interested and alert if we have a sense that there are elements of our environment left to discover. But we also need to be able to feel that we have somewhere safe we can retreat to or hide if necessary.
There are many places in the Newcastle Maggie’s Centre where you could slip off and curl up in a corner if you wanted to, without bothering anyone, then wake up and continue with whatever was going on. There are no signs, and areas reveal themselves to you as you explore, like the mezzanine and roof garden that you see only when you walk up the stairs.
It feels like a building that holds a lot of emotion, one where it is possible to sit still and realise what you are feeling. The kitchen, garden and living room are shared spaces that promote sociability, but the smaller rooms provide easily accessible aloneness. Even the toilets contain a comfy chair, in case you want to sit and take a moment on your own.
Oslo’s landscape is a fairytale from above. Clouds give way to dark green forests, which are interrupted by smaller lakes, then larger lakes, then ragged-edged fjords joining the sea. Sandy-coloured roads wind through the trees and rock breaks through in rough textured patches on the hillsides. The pools scattered everywhere make established forests seem like they are growing up from temporary swampland. There is a sprinkling of houses, gathering mass nearer the airport.
The colours are all natural: the dark blue-greens of trees, the blue-black of the water, the misty blue-greys of the mountains receding into the far distance. White clouds hang still above, with purple, rain-bruised underbellies. This is a country where nature is all around you, even in the city, seeping up from the ground, on all sides and above. It is hardly surprising that nature is reflected in Norwegian building design.
Oslo’s Akershus Hospital, completed in 2008, won the coveted Better Building Healthcare Award for Best International Design in 2009 and is widely recognised as an excellent example of modern health-promoting architecture. In contrast to its backdrop of fir trees and hills, the hospital looks imposingly modern, all straight lines and white. As you follow the path round to the main doors, piano music pipes out of embedded speakers. A pregnant woman and her partner are on their way out, crying, and a sick-looking man in a dressing gown is having a cigarette. The entrance has two sets of revolving doors, one then another, in an effort to keep heat loss to a minimum.
Inside, the ceiling is high and pale wood is everywhere. To the left are some cosy lamps attached to wooden sofa-shaped benches. It is light, modern and noticeably quiet. If you walk a few metres further in, the ceiling suddenly opens up even more, stretching up several storeys and drawing the eye towards the sky, which is visible through the huge glass roof. Bridge-like open corridors traverse the atrium connecting one side of the hospital to the other.
Architect Anne Underhaug, from CF Møller, was involved in designing the hospital, along with other architects, doctors and nurses. For her, the wood and light are not particularly linked to the research on their value, but more to the experience of living in Scandinavia. “Daylight means a lot in Scandinavia because half the year you don’t have very much,” she says. “Regulations are very very strict on daylight. Unlike in the US where you don’t have any daylight regulations at all, where you can have an office with no windows… Here the operating theatres have windows in as well, everything, even the X-ray rooms and CT rooms, MRI rooms, all of them have daylight.”
As for the materials: “Have you seen the houses in Norway?” she laughs. “We build everything out of wood.”
One side of the hospital houses the wards, the other the treatment buildings. Through the middle runs the large glass-covered atrium, with shops, cafés and a hairdresser. The central ‘street’ is a principle copied from other Scandinavian hospitals and allows more normal social interaction in a central fluid space. Smaller, more private places come off the main street, and all areas are built with flexibility in mind. The different parts of the hospital are built so that wards are near other wards with similar functions.
The wards at Akershus have a cluster design, where equipment and nurses are shared between a certain number of patients. There are no closed nursing offices – instead the nurses sit at exposed desks in the middle of the ward corridors. This was a major change. One of the hospital’s nursing team leaders says: “It’s a good thing but also a challenge… You need to be very flexible.”
This wasn’t the only change that took adjustment. “The vision was to make a very technically advanced hospital,” says Underhaug. “It was actually too technically advanced. The people couldn’t use it when they moved over.” The electronic dosage system for prescribing and giving out medication had to be put on hold for a year so staff could get used to it. Clinicians at the hospital are now used to seeing the robots that deliver items gliding about, but for me they were a source of delight.
Within the building, hidden conduits transport waste and resources. Equipment is stored locally and can be ordered to clinical areas or dispatched to the sterilisation system via pneumatic delivery tubes. The containers used to carry equipment and clinical samples around the hospital are opened by another robot, Roberta. She lives in the basement and exists to stop the staff from getting wrist strain.
Akershus was built with the newest technologies at the forefront of its design. But has this made a difference? The majority of the hospital’s heating is provided renewably by heat-pump plants from specially drilled wells, 200 metres underground, on a neighbouring farmer’s land.
Looking at the length of time that patients stay there, it’s hard to draw comparisons as the new hospital serves more elderly patients than the one it replaced did. However, even with an older and more medically complex population, the average bed stay is now four days: approximately one day less than in the old hospital.
The impressive modernity of Akershus and the beauty of the building as you move around it seem to speak for the principles of evidence-based design. But Underhaug doesn’t agree. “I think evidence-based design came afterwards… People need to look out, they need the daylight. You don’t need a book on evidence-based design to know that.”
She thinks that the economic and social climate is more relevant than the research in Norway’s hospital design; that architectural judgement and human instinct play as much a part in good design as the research and textbooks. “Of course I would like to say that it’s our thinking that we like to be light and concerned about material,” she says. “I think it actually has more to do with the fact that hospital buildings in Norway go in cycles.”
While in neighbouring Denmark a large programme of hospital building was carried out at once, in Norway hospitals have been built in phases, each learning from the last. Akershus follows in the wake of Rikshospital, also in Oslo, and St Olav’s in Trondheim, and it uses similar principles of light, space and nature. Publicly funded, the hospital received about £700 million from the Norwegian government. “I think it was the right time,” said Underhaug. “Because also the economy was quite good and you could start to think about what you really wanted… and a kind of public discussion, what should a hospital be?”
Despite the available evidence, hospitals and clinics vary hugely in how much they take into account the design factors that we know are better for patient health. Many healthcare services are housed in buildings that do the exact opposite of what research suggests is helpful.
So, what should a hospital be? Are we treating patients and making staff work in places that are likely to make them feel worse? Shouldn’t the buildings where healthcare is given themselves have health-promoting properties?
The King’s Fund, an independent charity working to improve health and healthcare in England, has collated research on healthcare design. Sarah Waller, its Programme Director for Enhancing the Healing Environment, acknowledges the financial tensions that many services face. “It depends totally on what the service is going to provide and what’s affordable,” she says.
“There are still some big builds but more often it’s refurbishment… We have a better understanding than we did have, and there are some beautiful examples, for instance, some beautiful hospital gardens, but a lot of it still gets forgotten. And a lot of architects say they challenge their clients but the client says there’s not enough money.”
Roger Ulrich, the researcher who first compared natural and non-natural views in hospitals, firmly believes that good hospital design can save money. “It’s clear that hospital design can help reduce pain and stress,” he says. “By carefully selecting, in evidence-based ways, certain important design upgrades when creating a new hospital, the design upgrades will cost more, e.g., single rooms, measures to reduce noise, but they pay back rather quickly by shortening stays and reducing other costs.”
Ulrich also links better-designed buildings with staff who are happier and more effective, and who spend more time with patients while coping better with the demands of their jobs.
It’s not just cost that gets in the way of better buildings. “The timeline in designing, creating and building a hospital is at least five years, often ten,” says Ulrich. “So any hospital that opens its doors today is at a minimum five years out of date. The edge of knowledge moves on.”
An estimated 40,000 people are hospitalised every day in the UK alone, and even more work in healthcare services. As the world’s population continues to expand, and the proportion of those who are elderly grows, medical care – especially for the very young and very old – is more important than ever.
It might be expensive to invest in better design now, but the alternative means leaving patients and staff in buildings that make them feel sicker and more stressed. While the ferocious financial pressures on healthcare services make investment difficult, the research suggests that putting short-term costs ahead of the evidence on health-promoting buildings could cost us all dear.
Despite a growing demand for home-based caregivers, the profession is one of the lowest paid and this can affect most of us, says Lynn Wilson, founder of The CareGiver Partnership.
As thousands of baby boomers turn 65 every day, the demand for home health care steadily grows. Yet home-based caregivers remain among the lowest paid workers, says Lynn Wilson, founder of The CareGiver Partnership, a national retailer of incontinence products and other home health care supplies.
“When caregivers don’t have a stable standard of living, they cannot provide quality care,” Wilson says. “Agencies that employ home health aides have to balance keeping costs affordable for families who pay out of pocket with attracting quality employees. Even for family caregivers, the job is physically, emotionally and financially draining.”
Wilson says it’s important home health care professionals earn enough to meet their daily needs and more, because it can affect us in several ways:
1. About 8,000 baby boomers turn 65 every day, according to the AARP.
As the demand grows for personal care and home health aides to serve aging baby boomers, the industry is among the lowest paid. The median hourly wage is $9.60 and the annual pay average is $18,600, according to the U.S. Labor Department and National Employment Law Project.
2. Eighty-five percent of seniors want to remain in their own homes.
If a loved one isn’t ready to move into an assisted living or nursing home facility, families may have to rely on independent caregivers, professional agencies, and, in some cases, respite care offered by state and nonprofit organizations.
3. If a caregiver quits a job to provide full-time care, it can cost that individual hundreds of thousands of dollars.
The CareGiver Partnership is a national direct-to-consumer retailer of home healthcare products for incontinence, diabetes, nutrition support and more. In addition to providing products and services that help caregivers and loved ones maintain personal dignity since 2004, the company also offers an online library of more than 1,500 family caregiver resources and personal service by experts in caregiving.