When someone dies at home, everyone in the family is affected. Looking after a relative who is at the end of their life can be enormously rewarding, but carers have many unmet information and support needs. This can take a toll on their physical and emotional health.
Here are some tips if you are looking after someone nearing the end of their life.
1. Look after yourself
Carers looking after someone with a life-threatening illness have higher levels of emotional distress, including depression and anxiety, than the general population. It’s important you look after yourself.
Self-care might mean finding time to take a break from caring by signing up for yoga classes where calming breathing techniques are practised, or seeking counselling or support groups.
Caring can be very rewarding for both the carer and the patient. Research shows caring can make people feel closer to those they’re caring for. Carers often feel proud that they have been able to look after someone in their last years, months or days of life.
It can be a positive experience to think about the rewards of caring, like spending more time together or knowing you’re making a difference to a loved one at a difficult time.
It’s important you look after yourself.
2. Get informed
Caring for a relative at the end of life is likely a new experience. Many carers are learning on the job and often don’t feel practically or emotionally prepared for the task. Research consistently shows carers want to know how to safely carry out practical caring tasks, like moving the person in and out of bed, preparing suitable meals, and giving medication.
Emotional tasks might include listening to the patient’s worries and helping the patient write down their preferences for care and treatments in an advance care plan. When patients have an advance care plan, carers report less stress because key decisions have already been made and documented.
Palliative care services often have support groups or information sessions, which help carers feel more prepared and better informed. Such groups help meet carers’ information needs. They also increase self-efficacy (the belief of being able to personally succeed in caring tasks).
Recently, distance learning has been offered to carers and evidence shows this helps them feel more prepared to carry out their duties.
A carer’s emotional tasks might include listening to the patient’s worries.
3. Ask for help
Many current approaches to supporting people nearing the end of life involve working with whole communities. Known as compassionate communities, these approaches are based on the concept it is not just up to an individual carer, or the health service, to look after people approaching the end of life. Support can be everyone’s responsibility, from pharmacists, librarians and teachers to employers and colleagues.
Apps, such as Care For Me, and websites can help co-ordinate help from friends, family and the community. The website Gather My Crew offers a way for carers to list tasks they need help with, to take some of the pressure off themselves.
4. Talk about it
When someone is critically ill or dying, family members often decide not to share their worries with each other. Psychologists call this protective buffering. People do it to try to protect their family and friends from worrying more.
Although it is well-intended, protective buffering can make people feel less close. It’s OK to share worries with each other. Being able to talk about feelings means being able to deal together with the difficult things like pain or fear.
Talk about your anxieties.
Using the “d” words (death and dying) can be difficult, and is an outright taboo in many cultures. Find language that suits you: be direct (death), or use metaphors (pass away) or less direct phrases (getting sicker) so that you can talk about worries together.
5. It’s OK to think about the future
It’s hard to balance feeling positive and feeling sad about the person approaching the end of their life. Many family members and carers say they feel guilty for thinking about the future or making plans for after the person has died.
But research in bereavement has shown it’s normal and healthy to move between focusing on the here and now, and on the life after the caring role ends. This might be reassuring if you’re the kind of person who doesn’t always want to face emotions head on – distracting yourself by thinking about the future is actually a natural and healthy thing to do.
If you are facing serious illness today or want to prepare for your own, or a loved one’s, illness in the future, you can tell your nurse, doctor and family that you want to talk about your wishes and what’s important to you. As we age, what matters most to us about our health care choices should become more important, not less, especially as we near the end of life. It’s important not just for us, but for those we leave behind.
Let me tell you a story to show you what I mean.
At 68, a woman we’ll call “Carmen” thought she was healthy — until she suffered a stroke and then a heart attack. Her husband, Eddie, a house painter, worried. How could they get Carmen the care she needed? How would they pay for it? Carmen told Eddie she wanted to avoid the hospital as much as possible, go to church and not be a burden to him.
Carmen represents the type of patient who nurses, doctors, social workers and other health care providers see every day. Yet, health care teams often serve people like her poorly. As a nurse, I’ve seen many people needlessly returning to the hospital over and over or spending their final days in an intensive care unit hooked up to machines they never wanted. But sometimes, when the right conversations lead to the right actions at the right time, the story has a better ending.
The Proactivity of Palliative Care
Fortunately for Carmen, her neighborhood community had a program that put together everything a person with a serious illness would need — proactively. This program drew together medical and nursing care with social work services to support the needs of the family grappling with serious illness. Carmen was relieved to learn that the program covered treatments to manage her pain and symptoms and also coordinated her care with her health care team. This is called palliative care.
The palliative care Carmen received was different than hospice care (available to people expected to live six months or fewer). Palliative care provides pain and symptom management until a cure is reached, or chronic condition management until death. Palliative care was an extra layer of support while Carmen got her other treatment.
Not only do people generally feel better with palliative care, they also live longer. Research shows that palliative care improves patient and family satisfaction, increases time spent at home and reduces the amount of time people spend in hospitals.
When Carmen took a turn for the worse and required hospice, her care team listened to what mattered to her and helped her plan accordingly. When it became clear that she was getting worse, the team helped her remain at home and comfortable, just as she wanted. She had time to be with her closest friends, and died with her family around her.
And that’s the point. We deserve to live out our lives on our own terms.
What Matters to You?
The John A. Hartford Foundation is committed to helping ensure that members of the public understand they have a key voice in how care is chosen and delivered. The Foundation supports several groups that provide helpful resources for patients, families and clinicians. This includes Care.Lab, a collective of leading national experts who helped develop scenarios like Carmen’s to illustrate the possibilities; The Conversation Project, which offers free starter kits to help define your wishes and advance directive guidance. If you want to learn more about palliative care in your community, visit getpalliativecare.org.
Improving care for people living with serious illness requires palliative care and — when needed — hospice services.
People should receive the care they want and know how to avoid the care they don’t want. Families should feel supported and better equipped to help their loved ones. Clinicians should know their patients are receiving care that aligns with the patient’s goals. Health care systems benefit from the person-centered care their clinicians deliver. This is the care we should all demand.
Death with dignity is a movement gaining steam.A June 2017 Gallup poll found that 73 percent of Americans supported medical aid in dying at a patient’s request, as long as it is painless.
Oregon is just one of six states plus the District of Columbia with laws in place that allow medical aid in dying. Doctor-assisted suicide will also become legal in Hawaii in January 2019. In 2018, 23 states entertained death with dignity legislation, and Maine is voting on a ballot initiative in 2019.
While the names of the bills vary — Death with Dignity, Medical Aid in Dying, Medically Assisted Dying — the bills are remarkably similar.
Death With Dignity: The Details
For death with dignity, participation by doctors or nurses is strictly voluntary. No doctor can be compelled to prescribe life-ending medicines, there are no government programs which will provide assistance and there is no database of participating doctors.
To qualify for a prescription for life-ending medications, patients must prove they are a legal resident of the state in which it is legal, be 18 or older, be mentally competent and diagnosed with a terminal illness that will likely lead to death within six months. Patients must also be able to self administer the medication. At least two physicians must determine all criteria are met, and several states with pending legislation require witnesses who are unrelated to the patient who have no financial interest in the patient’s estate.
Physicians must also inform patients of alternatives, such as hospice, palliative care and pain management techniques. Physicians may make a referral for psychological or psychiatric evaluation. The laws and bills also require the patient to make at least two oral requests with a waiting period of at least 15 days (20 in Hawaii) between requests, followed by a written request.
Controversy Still Present
Dr. Jamie Wells, a medical ethicist and a director of medicine for the American Council on Science and Health, said the debate over medically-assisted dying laws is difficult in part because we live in a binary culture which tries to reduce everything to black and white. But the individual situations where a law like this would come into play, she noted, are often gray.
“I wish we had more of an honest portrayal of how things happen in these circumstances. Nuances matter, and with these conversations about right to die and end of life, discussion is lost and progress is not made,” Wells said. “There are many shades of gray. Some people refuse further therapy. Sometimes trying the last-ditch chemo can be the cause of death.”
Australian scientist David Goodall made headlines in May when he traveled to Switzerland to end his life at age 104. He had at least one failed attempt to end his life at his home before traveling to Switzerland.
“When people have a failed attempt they can acquire new disease and illness which increases their suffering,” Wells said. “People who attempt to overdose on Tylenol, for example, can have profound liver disease as a result.”
Navigating Family Influence
End-of-life care is an area of medicine where a patient’s family often has an influence on care. But since death with dignity legislation requires non-family witnesses, patients aren’t pressured into ending their lives prematurely.
The opposite scenario happens as well — one where family members resist the patient’s desire to die.
“I’ve literally had a spouse say to me, ‘He can’t die until this date because that’s when the next check comes in,’” hospice nurse Alison Keeler of Washington state said. “Family isn’t always on board with a death with dignity decision. I became a hospice nurse because so often we were doing interventions on people that I felt were really hastening their deaths. They weren’t comforted. They suffered.”
Kristin Metzger of Maryland, another hospice nurse, has taken care of patients who had family members waiting on an inheritance and patients who receive the gamut of care because a family is depending on a Social Security check.
“I’ve seen people intubated, tube-fed, because there is financial gain,” Metzger said. “They’re the reason hospitals have ethics committees.”
Metzger stressed that terminal patients, regardless of whether they are in a state where medical aid in dying is legal or not, should not have to worry about suffering or pain.
“Is physician-assisted dying the answer or the Band-Aid? I actually wonder if we put our work and energy into addressing the root cause — if hospice isn’t actually the answer.” Metzger said. “Many people live longer on hospice because we’re managing their quality of life… If people truly understood what hospice and palliative care can provide for the terminally ill, no one would ever consider medical aid in dying.”
While Metzger, Keeler and Wells hold different opinions on death with dignity legislation, all three agreed it is important for families to discuss their opinions and wishes openly long before a crisis occurs.
“In a perfect world: Everyone has the right discussion at the right time when they can make the right decisions, but unfortunately people are messy and complicated.” Wells said.
In 2008, Sister Rose Mary Dougherty created a Companioning the Dying training program. She started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.
By Debra Bruno
In the United States, there’s probably no better way to spoil cocktail party chatter than by introducing the subject of death, dying or the end of life.
Yet, in the same way that the birth process went from a doctor-run event to a movement in which women took charge of their own pregnancies and deliveries, there is growing interest in thinking about the dying process. In part, that’s because the large population bulge of boomers is reaching a point where the end seems not that far away. But also, many people have had the experience of sitting at the bedside of a dying person without the slightest clue what to do.
And increasingly, classes, seminars, and programs are available that try to help people understand how to comfort those in the last stages of life.
Sister Rose Mary Dougherty, 79, a member of the religious order School Sisters of Notre Dame, calls this companioning the dying and she decided to make it a focus when, years ago, she found herself sitting at the bedside of a dying priest who was a friend. Next to her sat another friend, also a priest.
She watched as the two priests sometimes prayed and sometimes were quiet, together, doing nothing at all. At one point, the priest sitting next to her turned and said: “I don’t know what a priest should do anymore. I don’t know what I’m to do here, but I can be here. Maybe that’s my final vocation.”
That’s when it hit her: Even people trained in comforting feel a sense of helplessness when a friend or family member is dying. But she also resolved to do something about it.
So in 2008, Dougherty created a nine-month Companioning the Dyingtraining program, based in Baltimore. Today, the program provides instruction for hospice workers, caregivers, volunteers and family members on how be with someone in their final months or days.
Companioning the Dying concentrates on something that nearly everyone will have to face at some point in their lives. In the past, it was common for elderly family members to live with their adult children as they aged. Their last days were spent at home, surrounded by loved ones.
Society is different now, at least in many places in the industrialized West, where a youth-focused society has pushed end-of-life concerns mostly out of sight. As a result, people can feel unprepared — even panicked — when they have to deal with end-of-life issues.
“We’ve lost the place of dying,” says Jan Booth, a hospice nurse who also helps out with the Companioning the Dying program. “How do we bring aging and illness and dying into some kind of context that doesn’t change the grief that’s inherent, but changes our capacity to be with it?”
Dougherty started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.
Dougherty, now emeritus program director of Companioning the Dying, lives in her order’s residence in Baltimore. Her voice is weakened by Parkinson’s disease, yet her piercing blue eyes demonstrate the same alert presence that she teaches.
Companioning the Dying has something of the feel of group therapy — with readings, exercises and discussions — in which participants can talk freely and without judgment about anything they might have experienced with the dying, Peter Fitz, 75, says. He wanted to get involved in hospice volunteer work and did the program three years ago.
“Every death, and every person, is different,” says Fitz, a retired English professor. “The crucial part is to find out, with the individual not only on any given day or a particular hour or minute,” where they are. The task, then, is “emptying out your suggestions for people and learning to listen in a different way.”
Those “suggestions” can often end up being the worst thing people can do, says Sallie Tisdale, author of “Advice for Future Corpses (and Those Who Love Them).” People often say things such as “Are you sure the doctor knows what he’s doing?” and “God always has a plan,” she says. “Please don’t say those things.”
She suggests something similar to the Companioning program. “People ask me how to prepare. I say, stand at the doorway and take a self-inventory. Try to drop your own agenda. If the person says, I want to eat ice cream and watch a Yankees game,” just accept that, and do that for them she says.
Lourdes Salazar, a caretaker by profession who also volunteers for her church, St. Camillus in Silver Spring, says that one exercise her Companioning the Dying group did was to choose a day and behave as if it is your last day on Earth. She went out to lunch with her son and told him what she was doing. “I never realized how wonderful it would be to have a lunch with you on my last day,” she told him.
One of the main advantages of Companioning the Dying say participants, is the way it helps them all appreciate their own lives. “When you change your concept about the meaning of death, your life changes,” Salazar says.
Even a nurse who has spent most of her career working with terminally ill children and their families has found that the experience of the course helped her when she was faced with five nearly consecutive deaths in her own family. Janet Will says she thought she was experienced in handling difficult situations. But having the Companioning program allowed her to focus on her own grief and avoid the role of the professional.
“The people who love you the most don’t want to see you grieving any more,” Will says. “Where do you go with that?”
Xaverian Brother Michael McCarthy says that his group ended up being a “tremendously rich melting pot” of people from all walks of life. The group covered details such as what is involved in the dying process, but it also offered time to reflect on being compassionate with oneself even as you help someone else.
It’s not about taking a person’s blood pressure, he says. “You’re going to be present, and if you’re not present with yourself, then your presence isn’t going to be as meaningful” to the dying person.
Peter Fitz remembers visiting a man at a hospice in Baltimore. Fitz didn’t know him. The man was in a “highly agitated” state and couldn’t speak. Fritz asked him if he could nod his head. “Can I take your hand?” he asked. The man nodded yes. The two held hands until the man finally fell asleep.
“In a funny way, he gave me comfort, too,” Fitz says. “It’s an experience that in some important way we shared.”
Dying doesn’t disappear at Christmas. For those who know death will come soon but don’t know exactly when, the festive season, when the air is thick with “joy”, can be particularly unsettling.
As a psychotherapist working in palliative care, I often see distressed patients in the lead up to Christmas. Patients can find decorations and carols being played in shopping centres particularly triggering, reminding them this may be their last Christmas.
The dying person may often face an inner struggle. They may want to be involved in activities but may not have the physical and emotional capacity to deal with the heightened stress and stimulation. Some may prefer to sit quietly and watch proceedings without necessarily being amongst the action, but still feeling like they are a part of things.
Regardless of the the type of life-threatening illness, and whether an infant, child, adolescent, young, middle or older aged person is dying, both the patient and their family members may experience deep distress. You may feel the impending death, and your family the anticipated loss. These gloomy or morbid feelings might clash with the celebrations of Christmas.
Whether it’s you or a loved one facing dying at this time of year, there are some practical tips available that draw from a wealth of research and experience.
If you are the one dying
Where possible, plan ahead how you want to spend your Christmas festive period so you don’t place additional pressure on yourself. Think about the most comfortable arrangements for you. Where and with whom do you want to spend Christmas Day? Which is the best time of day for you to manage different activities? Let people close to you know your thoughts.
The process of dying is unique to each individual. It may be quick or slow, spread over weeks or days. Palliative care specialist at Stanford University, Dr James Hallenbeck wrote:
For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life — a phase known as ‘active dying’. A person may begin to lose their senses and desires. First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.
We have an ideal perception around death, that a dying person wants to be surrounded by family in their final hours. But some people in the active phase of dying may actually prefer to be alone. And while this may be difficult for family members to hear, you can give yourself permission to ask for whatever you would like.
Studies indicate some dying people may feel they’re a burden to their family. Other people have difficulty saying “no” because they don’t want to disappoint or hurt others, or they may fear conflict. Know your limitations and don’t push beyond these to simply please others.
Many dying people feel they may be a burden to their families.
Have kind consideration for yourself. Remember you are a person before you’re a patient. And remember it’s OK to say “no” and forgo invitations.
If you’re caring for a loved one who is dying
Essential care demands such as helping the person you are caring for to feed, go to the toilet, and clean themselves, will not disappear at Christmas. If your loved one is dying at home, they may require unrelenting attention.
Be realistic with your expectations. This can be a different and simpler Christmas than others. Allow for spontaneity. Try not to be a martyr and delegate and ask others to help. Doing so enables others to feel they’re included and contributing in special ways.
Listen to the person who is dying. Let them speak if and when they can. Gauge their mood and be guided by them. There is value in being present with the dying person without talking.
Heightened noise and activity, which often go hand in hand with the holiday season, can create distress for a terminally ill person. Ask family and friends to roster their visits over the different days of Christmas so as not to tire, overwhelm or stress the dying person.
People can think children don’t understand death and wouldn’t be able to cope with the concept, so often they may protect them by hiding it. But children are attuned to the family emotional dynamics. They know something is happening and they need their feelings validated. It can be helpful to get children involved in taking care of someone who is dying.
Research shows children do manage themselves well in the face of dying, when adults support them to deal with their responses.
Expect things can change quite suddenly. Have a backup plan ready. Keep emergency contact details readily on hand always.
When dying is happening at Christmas, it’s best to allow all feelings to be expressed rather than simply putting on a brave or smiling face. Feelings are a natural response to suffering and what may be a stressful situation.
It’s mostly important to remember not to hide your needs and feelings but to speak and communicate with your loved ones. Especially when dying may be imminent.
While enjoying her seventh decade on the planet, Donna Personna knows her remaining days are numbered. Yet the prospect of her demise doesn’t scare her.
“The end question. ‘The end.’ It’s not a touchy subject for me. I’m irreverent,” said Personna, a transgender woman who grew up in San Jose and now lives in San Francisco. “I have been on the planet for 72 years. I learned long ago this was going to come.”
Personna, a beloved drag performer, playwright, and hairdresser, credits her Mexican heritage with teaching her that death is a part of life. She pointed to the annual Dia de los Muertos holiday — the Day of the Dead in early November — as one example of how, from an early age, she was taught to embrace one’s mortality rather than fear it.
“I am not worried about it. It doesn’t scare me,” said Personna, who graduated with honors from San Jose State University and, for years, owned her own hair salon in Cupertino, which she sold a while back but continues to cut hair at once a month for longtime clients.
Born into a large Baptist family with 16 siblings, Personna remains close with several of her older brothers and their families in the Bay Area. She is confident she can rely on them in the case of emergencies or if her health deteriorates.
“Some of my nieces said, ‘You can live with us,'” said Personna, who has designated one of them the beneficiary of her estate.
Her Plan B, however, is to move into a pueblo outside Guadalupe, Mexico where her Social Security check and personal savings will be worth more.
“I want to spend the rest of my days in Mexico. I don’t want to die in San Francisco,” said Personna. “I am longing to go there.”
Confronting the end of one’s life isn’t easy for the majority of seniors, whether LGBT or straight. Most have not declared an executor for their estate, let alone discussed with their physician what sort of care they want in their dying days.
“It is rooted in the death phobia that North American culture has,” said Brian de Vries, a gay man and professor emeritus of gerontology at San Francisco State University who is a leading expert on end-of-life issues among LGBT seniors.
There are an estimated 2.7 million Americans who are LGBT and 50 years of age or older. Of that age group, 1.1 million are 65 and older. By 2060 LGBT elders in the U.S. are expected to number more than 5 million.
This generation of LGBT seniors differs from its heterosexual counterpart in significant ways, according to aging experts. Most of the LGBT seniors experienced discrimination not only in their day-to-day lives but also in medical settings due to their sexual orientation or gender identity.
LGBT seniors are oftentimes no longer in touch with their birth families, having been ostracized after they came out of the closet. And many don’t have a partner, spouse, or children of their own to rely on as they age.
“The issues around aging alone are particularly meaningful in LGBT seniors,” said Lisa Krinsky, 55, a lesbian who is the director of the LGBT Aging Project at the Fenway Institute in Boston.
And in the case of many older gay men, they lost their families of choice, whether it was their friends, partners, or spouses, to the AIDS epidemic. Thus, they are more likely to be aging alone. And if they are living with HIV, they are largely unprepared for their retirement years having believed they would have died by now.
Dearth of research
For LGBT seniors, living alone “sets them up to more likely need institutional care as one gets older,” said Daniel Stewart, a doctoral student and adjunct professor at Saint Louis University in Missouri.
Stewart and his colleague, Brandy Fox, a Ph.D. student at the university’s Center for Health Care Ethics, presented their research on LGBT older adults’ end-of-life perceptions and preparations at the Gerontological Society of America’s annual conference, held last month in Boston.
“There is not a lot of research on LGBT end of life,” noted Stewart.
Talking about the end of one’s life can be exceedingly difficult for LGBT seniors, according to aging experts, because of their lack of trust in their health care providers or not having close familial or social connections, leaving them without a family member or friend they can turn to and discuss how they want to be cared for as they age.
“We know gay and lesbian seniors delay getting care,” said Kysa M. Christie, Ph.D., a clinical psychologist at the Veterans Affairs Boston Healthcare System during a panel at the aging conference focused on palliative and end-of-life care for LGBT older adults.
The reasons can vary, said Christie, from internalized homophobia and heterocentrism to stress-related stigma and poverty. It is estimated that one in five LGBT seniors, she said, “have no one to call in a crisis. Compare that to one in 50 for heterosexual seniors, so that is a stark difference.”
Fox and Stewart interviewed 17 LGBT seniors living in the Midwest about end-of-life issues. The cohort expressed concerns about being a burden as they aged and largely had unfavorable views of health care settings, particularly religious affiliated hospitals.
As one 78-year-old woman told the researchers, “Me and the medical profession do not get along,” recalled Fox.
De Vries and his colleagues in the field of LGBT aging call the lack of discussions about one’s palliative care needs, from who will be one’s power of attorney to what a person’s advance directives are for their medical care, “the missing conversations.” It is a subject that seniors must repeatedly address as their circumstances and choices may change as they age.
“I like that it is plural, as once you have the conversation people think you are done with it,” said de Vries. “It is hard enough to have the conversation. And once you have it, you want to wipe your hands dry and move on. As if that is it; it is one of many conversations people need to have, I think.”
For several years now de Vries has been involved in research in Canada looking at end-of-life issues among LGBT seniors. In one paper de Vries co-wrote, and is under review at the International Journal of Aging and Human Development for inclusion in a special issue on LGBT aging, he and his colleagues note that evading end-of-life discussions “keeps death ‘in the closet’ — along with one’s hopes, fears, and wishes about their end of life.”
The issue struck close to home for de Vries six years ago when his husband, John Blando, Ph.D., who is also a professor emeritus at SF State having worked there as an instructor/adviser in the Department of Counseling, was diagnosed with Parkinson’s disease. The men, both 62 and together 33 years, began to seriously discuss end-of-life issues, such as how to care for each other, as they drew up their wills and estates. When they moved four years ago from San Francisco to Palm Springs and had to revise their wills, they also completed their advance health care directives and durable powers of attorney.
“These naturally involve deeper discussions about end of life — at least that was our experience,” said de Vries. “Of course, elements of end-of-life discussions have dotted our other conversations as we talk about our plans and hopes for the future. I will admit to some discomfort in some of these conversations — about raising issues that we both fear, about releasing strong emotions — but they ultimately rest on expressions of love and opportunities to share.”
‘Death cafes’
Aging expert Brian de Vries, right, with his husband, John Blando, Ph.D.
Since the couple retired to Palm Springs, de Vries has continued to work on end-of-life issues and helped launch a group called PALS, short for Planning Ahead for LGBT Seniors. It presents seminars where people can discuss a range of palliative care issues, from entering hospice care to planning one’s funeral.
“We have a funeral home director come in who is gay and talks about his experiences and the issues and the complications he has seen and how they could be mitigated if people only planned ahead,” said de Vries.
He also borrowed a concept from Britain known as a “death cafe,” where people meet socially to talk about death and dying issues. The gatherings are held at least once a month in Palm Springs and attract upward of 20 people or more.
“What is so neat is it is an in-your-face approach to it. It is not a ‘passing away cafe’ or something subtler. It is a death cafe,” said de Vries. “The idea is it just kicks the door open and brings it out of the closet and brings it into a public space and invites people who may not know each other to a safe space to have these conversations.”
For those LGBT people who have thought about how to plan for their end-of-life care, they tend to focus solely on matters related to their death or dying and not the months or years leading up to their final days. As an example, de Vries said when he once asked a focus group of gay men if they had a will or written out their funeral plans, most had. Hardly any of them, however, had determined who in their life would take them to the hospital or pick them up when, and if, they were discharged.
“It kind of provides an entry into this. It is a bit innocuous to ask someone, ‘I need a ride back and someone to sit with me for an hour, would you do that?’ People feel honored to have been asked and that someone cared enough about me to think I could help them with this,” said de Vries.
Asking for help isn’t always easy for LGBT seniors, noted the Fenway Institute’s Krinsky, even when they have family or friends who can assist them. She recalled talking once to a group of 20 older lesbians and asking them if they would be willing to go to the pharmacy for a friend.
“Eighteen said they would go for someone,” said Krinsky.
But when she flipped the question and asked the women if they would request help for themselves in getting their medications from the pharmacy, “only eight hands went up.”
Krinsky refers to such a model of care as “horizontal caregiving,” where a circle of friends, neighbors, and/or co-workers rely on each other to look after one another.
“We see tight families of choice taking care of each other as best as they can,” she said, “as people are concerned about how will I care for myself as I age.”
Such a structure, she said, upends the heteronormative approach of relying on one’s biological family to provide caregiving. It is expected that a married straight couple’s children and grandchildren will look after them in their senior years and that responsibility is passed on with each new generation.
“Right now, we a have a vertical model of multi-generational caregiving,” Krinsky explained.
Challenges
Even though Personna lives in an LGBT-affirming city like San Francisco and has her family’s support, she is cognizant of the fact that there are still challenges that LGBT seniors must confront.
“Because of my orientation it is totally different than a heterosexual family and their end-of-life situations. So many things are already in place for them,’ she said. “By law you get things and your family connection is built in. My community, we have to build that and do the work. People my age usually don’t have what the heterosexual person has, like built in grandkids to come over and take you to lunch.”
Five years ago Personna moved from Cupertino into the city to help care for her friend, Bill Bowers, 71, a member of the famed gender-bending group the Cockettes whose outrageously designed jackets became a must-have for rock stars such as the members of the Rolling Stones and Led Zeppelin.
Bowers, a gay man who is HIV-positive, had been living alone at the Derek Silva Community when he had a stroke that left him unconscious for two days in his studio apartment. After that episode, he moved into a two-bedroom unit so that he would have a roommate who could look after him. After he lost his first roommate to cancer, Bowers asked Personna to move in.
“I can’t live alone,” said Bowers. “I asked Donna because she was traveling back and forth from the city to Cupertino on weekends to move in. She is here to be my caregiver.”
Personna not only ensures Bowers makes it to his various medical appointments and takes his daily regimen of medications but also provides companionship. They also share many of the same friends and can reminisce about their younger days in the city.
Bowers has designated an executor for his estate and thought about how he would prefer to be cared for at the end of his life. For example, he doesn’t want to be put on life support should it come to that.
He expects to live out his days in San Francisco, though Bowers said if he could afford it he would spend the rest of his days in Paris or somewhere tropical, like Tahiti or the jungles of South America.
Unafraid of death, Bowers is concerned about how he will die.
“I don’t want to suffer,” he said. “I watched my former roommate go through weeks of suffering. I don’t want to go through that or have someone have to watch me suffer.”
The good doctor is irked. In a very gentle way, but still.
“I think it was Confucius who said that the beginning of wisdom is to call things by their correct name,” says Dr. Ira Byock, 67, founder and chief medical director at the Providence St. Joseph Health Institute for Human Caring in Torrance, California. “So to be perfectly grammatically correct and to be absolutely legit, let’s focus on the adverbs and the adjectives, since what we’re really talking about is Dying Well.”
Which is exactly where throats start to get cleared and the death-phobic among us try to edge toward the exits. Because no matter the fact that each and every person alive to read this must one day perish, none of us wants to perish. Particularly not in misery and solitude. “I’ve had patients who have literally said to me that they’d rather be pushed down a flight of stairs,” intones Byock, “than have to face a future of crap care in some facility at the end of their lives.”
But Byock is not in the euthanasia camp — dying quicker doesn’t mean dying better. His pitch, instead: a menu of a few different things, the most compelling being “psychedelic-assisted therapies.”
Studies show about 25 percent of Medicare spending gets poured into caring for people in their last year of living — which would add up to $175 billion last year. That number is catching the eyes of cost-cutting politicians. All this penny-pinching has caused Byock to turn a jaundiced eye to the spate of now-legal physician-assisted death states: California, Colorado, the District of Columbia, Hawaii, Montana, Oregon, Vermont and Washington. “I call it Physician-Hastened Death,” says Byock. “And why the rush to hustle the old and the sick into the hereafter? Excuse me if it just seems a little too convenient to me.”
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Byock’s New Jersey roots, played through the betraying trace of an accent, are even more in evidence as he inveighs, not without flashes of humor, against dying badly and too soon. Working one of his first physician gigs after med school in a rural Montana emergency room for about 14 years, Byock created a clinical assessment tool that measured the quality of life for people who are suffering.
His prescriptions for the medical-industrial complex now include listening to patients, formulating care plans for disease and symptom treatments, helping them sleep, helping them move their bowels, addressing family needs and perhaps most importantly training doctors to do this early. So medical schools have to teach about caring for seriously ill or dying people up to and including the ethics of decision making, and should face financial penalties if they fail to do so. “Most med schools dedicate one month for pregnancy care even if the doctors in question won’t end up delivering babies,” Byock says. ”But 70 percent of physicians will be seeing sick or dying people.”
Byock talks about learning to listen, being sensitive to older patient needs — and then comes the needle-scratching-across-the record moment when he brings up psychedelics.
“I’m a child of the ’60s,” Byock laughs. “And there are legitimate medical uses of psychedelics when we’re talking about end-of-life wellbeing issues.” With an eye to easing pain and creating comfort, Byock turns to the early, legal uses of psychedelics as an adjunct to therapy, as well as the recent and well-publicized benefits of using psychedelics to mitigate PTSD.
Elizabeth Wong, a Northern California nurse and Byock fan who is training to be an end-of-life doula, points to controlled studies that show psychedelics having “lasting effects for up to six months on anxiety issues. It’s real science.” As legalization of medical and recreational marijuana has made clear, this is less of a traditional Democratic/Republican divide, says the committed progressive Byock, but more of which stakeholders win and which will lose.
Dr. Ira Byock, the doc from Jersey.
Losing? If the Dying Well’ers were to succeed, pharmaceutical companies and medical equip
ment manufacturers would take a hit. A contingent of pro-lifers under the aegis of the American Life League has blasted Byock’s work as “stealth euthanasia,” a charge Byock believes is risible. And winning? Nurses’ aides, nursing homes, hospices, long-term care facilities and pretty much anybody who expects to be dying.
“I think you’ll need more than a scorecard to get people to change their minds about this,” says senior care worker Josefine Nauckhoff. “Or at the very least America will have to take seriously those magical, mystical countries that have figured this out.”
Like? “Canada,” Byock says. “They’re taking this seriously,” with an emphasis on hospice centers, senior care facilities and addressing end-of-life issues as though they were both real and manageable.
Byock is pushing the U.S. to follow suit via his indefatigable advocacy in the wellness community, faith-based Catholic initiatives, books, conferences for reimagining the end of life and even the Death Over Dinner movement, where people bite the bullet, as well as biscuits, and talk seriously about death.
A movement is evident in the growing number of related books, death cafés, conferences, efforts at real legislative change and hospitals that are dealing on their own. In 2016, three-quarters of all U.S. hospitals had a palliative care team — focusing on improving quality of life for those with serious illnesses — up from one-quarter of hospitals in 2000, according to the Center to Advance Palliative Care.
“This is not just about avoiding suffering,” Byock said. “I’m in it for the joy. But, I mean, we’re all going to die. Best we do so the best ways we can.”
Byock and an ad hoc group of like-minded experts propose the following public policy planks to improve end-of-life care:
Raise training standards for physicians, nurses and allied clinicians in geriatrics, palliative care and related topics.
Establish minimum program standards for “palliative care” (disciplines, staffing, services, hours).
Require palliative care consultation before high-risk surgery or low-yield treatments for patients with advanced age or physiologic frailty.
Eliminate the requirement to forego disease treatments to receive hospice care for comfort, quality of life and family support.
Long-term care: Require adequate staffing of nurses and aides.
Long-term care: Require living wages and benefits for aide-level workers.
Annually revoke licenses of nursing homes in lowest 10 percent of quality and resident safety scores.
Award new licenses only to nursing homes qualifying as Greenhouse, Planetree or Beatitude-style models.
