Until Louisa’s accident, you could almost always find her working in her garden, pulling weeds, deadheading old blossoms, coaxing tomato vines up their stakes. Well into her 80s, she still made a full midday meal every Sunday for her family and an ever-shifting gaggle of neighbors, grandchildren, and friends — basically anyone who showed up hungry.
As vigorous as Louisa was, when she stumbled and fell earlier this fall, it changed everything. Landing awkwardly on the hard ground, her skull hit a paving stone, causing bleeding inside her brain that led to immediate unconsciousness. After Louisa was rushed to the local hospital, she underwent emergency surgery, but it yielded no improvement. Still unresponsive, she was transferred to a quaternary academic medical center for further evaluation and treatment. But there was nothing more to be done.
As her garden hibernated beneath piles of dead leaves and bits of snow, no one could believe this had happened — or imagine life without Louisa. The 180-degree pivot from healthy and upright to comatose left them breathless.
Family members encircled the hospital bed where she lay: broken bones set, minimal brain activity, a machine breathing for her. I asked them whether Louisa had an advance directive or a living will. Their silent stares were my answer.
It’s not an unusual situation, and they weren’t alone in saying no. In Virginia, where I live and work, nearly 5 million adults don’t have advance directives, including many of the patients I care for at the University of Virginia Medical Center. Nationally, a whopping two-thirds of Americans lack them. But this holiday season, it’s my hope to start to change those odds.
Advance directives are formal declarations of your last wishes, should the unthinkable — a fall, stroke, car accident, aneurysm, heart attack, or other incapacitating event — befall you. They explicitly lay out the extent to which you want lifesaving measures (breathing and feeding tubes, resuscitation if your heart stops, and the like) when other remedies won’t improve your odds of survival; or when, as with Louisa, there isn’t anything more than can be done and you will likely face your remaining days in an unconscious, possibly vegetative state.
In my practice as a palliative care nurse practitioner, in my classes teaching nursing and medical students, and even when I share meals with friends, I often work advance directives into the conversation. Some people twist in their seats, fumbling through their answers, while others are curious and upfront about what they do and don’t know. Still, I press.
I keep a stack of “Five Wishes” worksheets — a simple pen and paper guide to creating an official advance directive — in my office, car, briefcase, even in the guest rooms of my home (Harvard Health Publications, AARP, and others also offer them). And if I don’t have the paper copies on hand, a quick email later and my friend, colleague, student, patient, or family member has what’s needed to get started.
Advance directives get a lot of bad press for being macabre. But I urge you to think of them as love letters to the people you adore. In these documents, you define your last wishes, set parameters for care, and help those who will be caring for you make decisions based on what you want and, just as important, what you don’t want, when curative treatments are off the table.
These love letters safeguard those thrust into the difficult position of making medical decisions for you — some about life and death — so they don’t have to be guided only by well-meaning strangers like me, as Louisa’s family and countless others have had to do.
Advance directives are easy. They don’t take long to complete. Anyone can create them.
As families gather for the holidays, fretting about food, finances, gift giving, politics, and more, I urge them to ask everyone around the holiday table — middle-aged, old, young at heart, and everywhere in between — the following questions. (They’re the same ones I ask my patients who find themselves at various stages in the trajectory of life-limiting illnesses, bringing into razor-sharp focus what matters in the time they have left.)
What would you want done for you if the unthinkable happened — like a catastrophic fall or a major stroke — and treatment options are limited?
Would you want every medical intervention, or only some?
Do you want to die in a hospital or, if it’s possible, at home?
Are there things undone you wish to tend to, people you want to see, and things you want to say?
Are there things you fear, wonder, or wish for?
Essentially, what really matters to you?
When death is imminent, perhaps a matter of days or weeks, patients I’ve had the privilege of caring for often want to leave the hospital and spend their final days in a favorite chair, with a favorite pet, satisfied by favorite meals in the comfort of their own home. Others wish to express their love and gratitude for those around them, imparting last thoughts with purpose, dignity, and humanity. Some want to connect with a loved one with whom they’ve sparred.
To do any of this, they need to declare their intent.
No one needs to wait until death is near to understand or crystallize their last wishes. There’s no time like the present — and no time like the holidays, when family and friends gather — to ask those you love, as well as yourself, about what they want the end of their life to look like, no matter whether that day seems far away or if it might be closer.
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.”
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.
A study from doctors a OHSU and the Dana-Farber Cancer Institute found that the number of people in Oregonian who fill out forms with end-of-life wishes has increased.
Each evening, Tina Castanares sits with her 97-year-old mother and reviews the next day. Castanares tells her mother who will wake her up in the morning and help her get ready for the day. Then her mother recites what she wants and doesn’t want paramedics to do in case she has a heart attack during the night.
Castanares knows that might sound morbid, but the ritual keeps her mother’s mind sharp and comforts her to know that her mother’s end-of-life wishes will be considered in an emergency.
That’s why her mother filled out a Physician Order for Life-Sustaining Treatment form, commonly called POLST. A recent study says that nearly half of all Oregonians who have died since the form was created had one filled out and the percentage of people doing so has only grown. The state leads the country how many people have a POLST form.
About 31 percent of people who died from 2010 to 2011 had a POLST on file with the state’s registry. A group of Oregon Health & Science University researchers, along with one from Harvard’s Dana-Farber Cancer Institute, found that number had jumped to 45 percent between 2015 and 2016.
In that same time frame, the number of deaths in Oregon by natural causes increased nearly 13 percent while the number of forms filled out by nearly 66 percent. Researchers say that indicates the popularity of the form has grown independent of the size of the population who would need it.
Oregon has led the country in palliative care in several ways. One of the most high-profile is Oregon’s Death with Dignity law, passed by voters in 1994 and enacted in 1997, years before other states started to adopt similar physician-assisted suicide laws.
But POLST is possibly the most impactful. The Center for Ethics in Health Care at Oregon Health & Science University put together a group of health care providers from the state to create the document, which allows anyone to say what kind of life-saving measures they want or don’t want in an emergency.
Every state now has some form of a POLST form. Oregon also has the most robust registry that any doctor or emergency worker can access in seconds.
Paramedics in Oregon are allowed to start CPR or other resuscitation techniques on a person in a medical crisis at their own discretion. But the chance of it working can be as low as 3 percent for people who are permanent residents of a nursing home. So many frail and older people fill out a POLST form that refuses those resuscitations measures.
Castanares’ mother is one of them. When an ambulance came twice, both times for non-life-threatening injuries, emergency crews were able to immediately look up her POLST form and see that she doesn’t want to be evaluated for anything beyond the injury. She has also made it clear she doesn’t want a breathing tube or other interventions other than those that would make her comfortable and able to be at home before she dies.
“She just really wants a natural death and really feels the POLST protects that,” Castanares said.
OHSU Center for Ethics in Health Care Director Dr. Susan Tolle said that many people who fill out a POLST form do it for the same reasons. However, the number of people who want extensive medical care in emergency situations has increased, according to the study.
About 13 percent of people who had a POLST form filled out when they died in 2015 to 2016 requested every life-saving measure, whereas only 8 percent did in 2010 to 2011.
And sometimes those desires change over time. Many people fill out more than one POLST over the course of their life, Tolle said, as their diagnosis changes or they experience new ailments.
“This is like any other medical order: if the wishes and the values and the context change, the orders need to change so that the plan of care is clearly guided as someone moves from one care setting to another,” Tolle said.
Tolle was also surprised to find that many people fill it out earlier in life.
The older an Oregonian is, the more likely they are to have a POLST form on file with the state. For people 95 and older, nearly 60 percent have a form — an increase of 83 percent over the last five years. But even people in their 60s and 70s have filled out the forms at a growing rate.
More than 31 percent more people between 65 and 74 had a POLST on file when they died than in 2010.
That could change how doctors talk to patients about POLST forms. Many people who are frail or have weak immune systems die suddenly from pneumonia or complications relating to disease. Tolle also said that people with memory or dementia conditions have started to fill out forms years before they expect to die.
Doctors tend to recommend POLST forms for people who are within months or a year of death. But Tolle said that might be excluding people who want to state their needs early and often.
“We didn’t really think carefully enough or fully understand the special needs of those at the most advanced age and frailty, and especially those with cognitive impairment,” Tolle said.
Before his mother, Dee Dee, died from emphysema in 2009, Larry Sernovitz spent a lot of time at her bedside, keeping her company. Toward the last few days of Dee Dee’s life, she wasn’t very responsive, so her son didn’t expect to connect with her meaningfully anymore. During one of the final visits, Dee Dee had mostly rested, and the two hadn’t interacted much. So Larry was surprised to get a phone call from his mom the next day.
“She sang, ‘I just called to say I love you,’” says Sernovitz, a rabbi in Cherry Hill, N.J. “I don’t know if I fully realized the power of that moment. She bounced back. She was singing to me over the phone. Within the next day, she was gone.”
Dee Dee had sung to Sernovitz often while he was growing up, but her melodic phone call toward the end of her life was an unexpected surprise.
“I said, ‘Thank you so much. I love you, too,’” Sernovitz says. “I didn’t fully realize what was happening: She was beginning to say goodbye. She just wanted to let me know, even though I didn’t realize it at the time, that no matter where she goes, she’ll always love me.”
At the end of life, many people choose to tie up loose ends, to make sure nothing critically important is left unsaid to the people who matter to them most. They may feel it will help them die peacefully, knowing that no loved ones will have any doubts about their feelings.
“Those are opportunities for people to take stock and say, ‘I want to be more intentional about how I want to relate to people in my life,’” says Dr. Jessica Zitter, author of Extreme Measures: Finding a Better Path to the End of Life and an attending physician in critical-care and palliative care medicine at Highland Hospital in Oakland, Calif. “Death should really be seen as the last opportunity that you have to make amends and clean things up before you’re in the next world, wherever that might be.”
A New Dynamic
The end-of-life period can spark honest, soul-baring conversations that let people grow together emotionally while reminiscing, apologizing, forgiving, thanking or recognizing the efforts of their most cherished relatives and friends. Such talks can be especially meaningful if they’re initiated by someone who doesn’t usually talk about his or her feelings.
“These conversations are refreshing and calming to the souls of all who engage,” says Hattie Bryant, author of I’ll Have It My Way: Taking Control of End-of-Life Decisions. “If the dying person says words that the loved ones around are not used to hearing, it can open up a new and deeper path.”
Recognize the Moment
Sometimes palliative care physicians will help their patients with life-threatening conditions facilitate these conversations, steering them in directions that can bridge differences, highlight commonalities and allow people to grow closer. It’s ideal to have these conversations during the final weeks or months of life rather than waiting until the last possible moment.
“We always think we are going to have more time than we do,” says Zitter, who appeared in the Academy Award-nominated short documentary Extremis, about end-of-life decisions and conversations. “I see so many patients who get caught off-guard by those final days, to the point where something happens, they deteriorate; they can’t speak anymore; they aren’t alert. You don’t want to wait until those final days because it may be too late by then.”
The Start of an End-of-Life Discussion
When someone at the end of life opens up about his or her feelings, it can initiate an emotional conversation, with everyone sharing perspectives to gain a greater understanding of each other’s feelings. And if one person says “I love you,” the other person may return the sentiment, which brings greater depth to the relationship. The further the talks go, the greater the intimacy of the relationship may increase.
“I’ve seen it go any number of ways,” Zitter says. “A dialogue. One-sided. Over the phone — for people who aren’t going to have the chance to see each other again.”
Staying on Topic
Some terminally-ill patients want to have emotional conversations but can’t get the words out because their relatives cut them off.
“A lot of people say, ‘Every time I want to talk to my kids, they put their fingers in their ears and say, You’re not going to die’,” Zitter says. “When someone is coming to you with that feeling, you want to open up and listen and support, not deny the sentiments that are bringing them to you.”
It takes a certain amount of bravery to initiate these conversations. Not everyone is able to bare a soul this way — especially if someone is in denial about his or her diagnosis or prognosis. So honor your loved one by listening.
“The problem is: So many in America today don’t have these discussions, as they are too busy thinking they are going to be cured,” Bryant says. “Our goal should be not to die fighting a disease but to die loving people.”
Nearly 10 years after his mother’s death, Sernovitz is still awed by the meaningful conversation he had with his mom when she sang about her feelings.
“It was such a powerful moment,” Sernovitz says. “We have to really pay attention to what people say because we never know what messages they’re trying to send us.”
While expanding and protecting health care was the number-one issue for voters on Nov. 6, what has gone unreported is that elected officials can now safely run on the issue of expanding and protecting end-of-life care options. For decades, lawmakers feared that sponsoring medical aid-in-dying bills that would allow terminally ill adults to have the option to peacefully end their suffering would harm their chances of getting re-elected. This year’s elections proved those concerns false.
Nearly all of the lead sponsors of bills in 28 states to authorize medical aid in dying in 2017 and 2018 who ran for re-election won (13 out of 14 state senators and 49 out of 53 state representatives). Voters also elected or re-elected at least five governors who publicly supported medical aid in dying: David Ige in Hawaii, Gavin Newsom in California, J.B. Pritzker in Illinois, Gretchen Whitmer in Michigan and Michelle Lujan Grisham in New Mexico. (Grisham’s opponent, Steve Peace, vehemently opposed medical aid in dying.)
In addition, Congressman Keith Rothfus of Pennsylvania, a sponsor of a failed resolution to overturn Washington, D.C.’s Death with Dignity Act and another House resolution condemning medical aid-in-dying laws nationwide that garnered only 13 co-sponsors, was defeated for re-election.
None of this should be particularly surprising. A majority of voters embraced this issue long before many elected officials and political candidates did — since 1996, according to Gallup’s annual polling; its 2017 poll shows that 73 percent of Americans support medical aid in dying, including 81 percent of Democrats and Democratic-leaning independents and 67 percent of Republicans and Republican-leading independents. In short, medical aid in dying is a rare bipartisan/nonpartisan issue. Five GOP legislators are among sponsors or co-sponsors of bills allowing medical aid in dying.
This unusually strong, wide-ranging support explains why 29-year-old Brittany Maynard, who moved from California to Oregon in 2014 to access its medical aid-in-dying law, was able to capture the attention of the American public. Three weeks after her YouTube video went viral, generating international news coverage, a YouGov poll showed that 38 percent of American adults — 93 million people — had heard her story.
Inspired, in part, by Maynard’s advocacy, since 2015 California, Colorado, the District of Columbia and Hawaii have enacted medical aid-in-dying laws. Today, D.C. and seven states accounting for nearly one out of five Americans have the option of medical aid in dying.
This movement is picking up major momentum, particularly among the millions of baby boomers who have watched their parents die in needless suffering because they did not have the option of medical aid in dying.
In addition, we know that these laws improve care by prompting conversations between doctors and patients about all end-of-life options, including hospice and palliative care. Oregon’s 1994 Death with Dignity Act has helped spur the state to lead the nation in hospice enrollment.
This helps explain why a 2016 Medscape survey of physicians showed doctors supporting medical aid in dying by nearly a 2-to-1 margin, 57 percent to 29 percent, up from 46 percent support in 2010. Just last month, the American Academy of Family Physicians dropped its opposition to medical aid in dying and adopted a position of “engaged neutrality,” noting that “family physicians are well-positioned to … engage in creating change in the best interest of [their] patients.” Medical societies in D.C. and nine states have adopted similar positions, and the New York State Academy of Family Physicians has endorsed allowing medical aid in dying.
Perhaps the most important benefit of medical aid in dying is that it is transforming end-of-life care in the same way childbirth care was transformed decades ago. As more states implement medical aid-in-dying laws, more and more patients have a voice in how they live the final chapter of their lives and how they die. Just as obstetricians and gynecologists now ask women for their input about who they want in the birthing room and whether they want to receive medication, doctors in states where medical aid in dying is authorized now are engaging in similar conversations with terminally ill patients.
In time, we will live in a world where health care providers fully inform their terminally ill patients about the benefits and burdens of all available forms of treatment and where deciding to end suffering and allow for a peaceful death will be a widely accepted medical option. The sooner we get there, the better.
