Sometimes, doctors and patients disagree about end-of-life care. I know, because it happened with me.
Not long ago, a frail-looking elderly patient appeared at my cardiac health clinic with a file full of hospitalizations stemming from a heart attack years before. He’d had three coronary stents put in, had had heart bypass surgery and was unable to walk for more than a block due to chest pain. I saw that a previous doctor had written “DNR” — do not resuscitate — in his chart, so I asked him to confirm his wishes.
No, he said, to my surprise. He actually wanted to be a “full code” — meaning that chest compressions, shocks and intubation were to be used if necessary to keep him alive.
I was taken aback. Someone had presumably told him that he would probably not survive a cardiac arrest even with cardiopulmonary resuscitation. (Only 1 out of 7 patients older than 80 do; this man was close to 90.)
“I don’t want anyone giving up on me,” he said. No matter how much I explained that CPR would probably only cause him to suffer longer without adding to his life, he remained adamant. He left my office visit with a yellow “full code” indicator in his chart instead of the red “DNR” one.
When I walked home that night, I couldn’t help thinking how badly our conversation had gone. I had discussed end-of-life planning with many patients, and usually we’d been able to come to decisions that made sense both medically and to the patient. But not this time.
Maybe I hadn’t explained the facts well enough; maybe there was a language barrier; or maybe he just didn’t trust me.
Medicare recently put in place new rules that will allow doctors to be reimbursed for discussing end-of-life preferences with patients.
Originally derailed by the “death panel” accusations of 2010, the measure has been hailed as a major victory toward a better, more transparent system of end-of-life care. Patrick Conway, the chief medical officer for the Centers for Medicare and Medicaid Services, remarked that such advance-care planning discussions were important to promote “patient- and family-centered care.”
But sometimes these discussions are anything but patient-centered. That’s because what the doctor wants doesn’t always align with what the patient needs.
As a resident, I approach most end-of-life conversations with a narrow focus: Confirm a code status and get the name of an emergency contact person. “Do you want to be resuscitated if you lost your pulse?” “Do you want to have a breathing tube if you were unable to breathe on your own?” “Whom should we contact in case of an emergency?” I needed to document answers to those questions to finish my patient-chart note. With my pager ringing and admissions arriving, I usually didn’t have time for anything else.
The patients I speak to, however, want so much more out of their end-of-life conversations.
One of the most common questions I heard was “How long do I have?” Indeed, about half of patients desire some knowledge about prognosis when discussing the end of life. They also wanted to know whether their symptoms — pain and nausea, for example — would ever go away, and what options would allow them to be at home during their final days. One woman even asked whether someone could set up her deathbed along the same beach where she had grown up. I frequently can’t answer these questions.
Yet even these potentially frustrating conversations aren’t that common: While 8 in 10 people of all ages think it is important to talk to their doctor about their end-of-life wishes, fewer than 1 in 10 report actually having had these discussions. But there are two participants in those end-of-life conversations: patient and doctor. Unless each realizes what the other wants, both risk coming away from those conversations feeling uncomfortable or sensing that things had not gone well.
Before I saw my elderly heart patient for his next visit, I came across the website of the Conversation Project, a group dedicated to helping people discuss their wishes for end-of-life care. Led by health professionals, media, clergy and others, the Conversation Project has published a “Starter Kit” to help patients and health professionals prepare for end-of-life conversations. The guide first asks patients to fill in the blank: “What matters to me at the end of life is ______.” Subsequent steps are based on that answer.
More resources for advance-care planning exist. A nonprofit called ACP Decisions has created videos to help physicians explain emotionally charged end-of-life concepts such as CPR, hospice and feeding tubes. At my hospital, we have used simulated conversations with patient actors to help residents approach the end-of-life conversation.
So at my next meeting with my patient, rather than beginning the discussion around his code status, I asked what mattered most to him. Over the next five minutes, he explained how his great-granddaughter in Ethiopia had just been born. The family was flying to America next month, presumably to see my patient for the last time. Even if it meant receiving compressions or shocks, he wanted to make sure he was alive to see that baby. He remained a full code until our next visit, which was two months later, after his family had left. At this point, he decided to revert to DNR. We are discussing hospice care now.
I no longer think that my first discussion with that patient was a failure. But it opened my eyes to how little I’d been listening. End-of-life discussions are opportunities to learn more, to start a conversation that we as doctors have been missing out on for quite a while. Once we listen enough to learn, maybe those “goals of care” discussions will start focusing on the goals of the patient, not the doctor.
Tom was only forty when he arrived at Hospice Buffalo with end-stage AIDS. Unlike most of my patients, he was not surrounded by loved ones. Not a soul came to visit, ever. He was rather stoic, so I wondered if the absence of visitors was his choice rather than an indicator of his loneliness. Maybe that was his way of refusing to give death an audience.
I was puzzled but, wanting to respect his privacy, did not inquire. Tom’s emaciated body showed traces of once-chiseled muscles. He had kept fit and was still quite young, which gave me hope. In light of his age and physical conditioning, I thought that his body would be more likely to respond positively to life-prolonging treatment. Not long after he was admitted, I went to the nurse’s station and decreed, “I think we can buy Tom some time. IV antibiotics and fluids should do it.”
The charge nurse, Nancy, had been at Hospice Buffalo for much longer than I had. She knew her job, and everyone looked up to her. She was also not one to mince words. Still, her response took me by surprise: “Too late. He’s dying.”
I said, “Oh really?”
She replied, “Yep. He’s been dreaming about his dead mother.” I chuckled awkwardly—equal parts disbelief and defensiveness. “I don’t remember that class from medical school,” I said.
Nancy did not miss a beat. “Son, you must have missed a lot of classes.”
I was a thirty-year-old cardiology fellow finishing my specialty training while working weekends at Hospice Buffalo to pay the bills. Nancy was an exceptional veteran nurse who had limited patience for young, idealistic doctors. She did what she always did when someone was out of their depth—she rolled her eyes.
I went about my business, mentally running through all the ways modern medicine could give Tom another few weeks or even months. He was riddled with infection, so we administered antibiotics. Because he was also severely dehydrated, I asked for a saline drip. I did all I could do as a doctor to prolong his life, but within forty-eight hours, Tom was dead.
Nancy had been right in her estimation of where he was on the downward slope. But how could she have known? Was it just pessimism, the numbing effect of having watched so many people die? Was she truly using a patient’s dream as a predictor of life-span? Nancy had worked in hospice for more than two decades. She was tuned in to aspects of dying I knew nothing about: its subjective dimensions. How patients experienced illness, particularly dying, had mostly been ignored throughout my training as a doctor.
Like many physicians, I’d never considered that there might be more to death than an enemy to be fought. I knew about blind intervention—doing everything possible to keep people conscious and breathing—but had little regard for the way any given individual might wish to die, or for the unavoidable truth that ultimately death is inevitable. Because it had not been part of my medical education, I failed to see how the subjective experience of dying could be relevant to my role as a doctor.
It was ultimately the remarkable incidence of pre-death dreams and visions among my dying patients that made me realize how significant a phenomenon this was, both at a clinical and a human level. As a hospice doctor, I have been at the bedsides of thousands of patients who, in the face of death, speak of love, meaning, and grace. They reveal that there is often hope beyond cure as they transition from a focus on treatment to notions of personal meaning. As illness advances, grace and grit collide and bring new insight to those dying and their loved ones, insight that is often paradoxically life-affirming. This experience includes pre-death dreams and visions that are manifestations of this time of integration and coming into oneself. These are powerful and stirring experiences that occur in the last days or hours of life and that constitute moments of genuine insight and vivid re-centering for patients. They often mark a clear transition from distress to acceptance, a sense of tranquility and wholeness for the dying. Patients consistently describe them as “more real than real,” and they are each as unique as the individual having them.
These end-of-life experiences are centered on personal histories, self-understanding, concrete relationships, and singular events. They are made of images and vignettes that emanate from each person’s life experiences rather than from abstract preoccupations with the great beyond. They are about a walk in the woods relived alongside a loving parent, car rides or fishing trips taken with close family members, or seemingly insignificant details such as the texture or color of a loved one’s dress, the feel of a horse’s velvety muzzle, or the rustling sound of a cottonwood’s shimmering leaves in the backyard of a childhood home. Long-lost loved ones come back to reassure; past wounds are healed; loose ends are tied; lifelong conflicts are revisited; forgiveness is achieved.
Doctors owe it to their patients to incorporate this awareness into our practice. End-of-life experiences ought to be recognized as evidence of the life-affirming and inspiring resilience of the human spirit that drives them. They are proof of humanity’s built-in, natural, and profoundly spiritual capacity for self-sustenance and self-healing, grace and hope. They help restore meaning at end of life and assist in reclaiming dying as a process in which patients have a say. They also benefit those left behind, the bereaved, who get relief from seeing their loved ones die with a sense of peace and closure.
This subjective experience of dying is also a powerful reminder that beauty and love in human existence often manifest themselves when we least expect it. The patients who summon up comforting processes at life’s end are beset by symptoms of a failing body over which they have limited control. They are at their most frail and vulnerable, existing within suffering states of aching bones and hunger for air. Catheters, IVs, and pills may now be part of their every day, sometimes literally functioning as extensions of their bodies under the daily medical management that is their new and irreversible lot. They may experience various degrees of cognitive, psychological, and spiritual dissonance. Yet even as the inexorable march of time is taking its toll on their bodies and minds, many also have pre-death dreams and visions in the context of which they display remarkable awareness and mental sharpness.
Herein truly lies the paradox of dying: patients are often emotionally and spiritually alive, even enlightened, despite a precipitous physical deterioration. The physical and psychological toll of dying may be undeniable, but it is also what makes the emotional and spiritual changes brought about by end-of-life experiences border on the miraculous. Doing justice to end-of-life experiences means accounting for this paradox, one in which death and dying transcend physical decline and sadness to include spiritual awakening, beauty, and grace. Or, as the title character in the acclaimed Tuesdays with Morrie puts it, “Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die.” This is also true of the dying process, which often functions as a summing up, culmination, and capstone, an opportunity to recognize and celebrate our humanity in all its complexity and dignity rather than just as an ending.
As Americans continue to age, hospices are exploring new ways to bring peace and calm to the often slow and painful process of end-of-life care. According to the CDC, in 2015, an estimated 1.4 million individuals on Medicare were patients in a hospice setting.
Quadrupling in size in the last twenty years, hospices are investing in creating a patient-centric approach that dismantles beliefs that hospices are cold, and unfeeling institutions. From massage to aromatherapy, some hospices are offering new additions to their programs including music and integrating family into meaningful experiences. While many hospices are focused on offering a thoughtful quality of care, many end-of-life-care specialists are also advocating for marijuana.
MorseLife recently unveiled a 2019 study focused on advances in hospice care and found changing attitudes on medical marijuana. They cited that, “87% of Americans support the use of medical marijuana as a treatment option for terminally ill patients, with nearly three in five Americans (58%) expressing strong support.”
“Marijuana is used in the hospice care setting to ease spiritual and existential suffering, with some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, as well as the loss of function that accompanies it. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.”
Stuck in political limbo
While some hospice programs are embracing medical cannabis, some are facing uncertainty about whether or not to allow medical marijuana, even when it’s legal inside their particular state. With an ever-expanding list of states that allow marijuana both medically and recreationally, hospices are taking an evidence-based, risk-management-forward approach to ensure they comply legally and ethically.
Changing attitudes are allowing for researchers to gain more insight and information regarding the role cannabis and CBD can both play in hospice and palliative care settings. Published in the Journal of Palliative Medicine, an October 2019 study focused on the responses of over 300 palliative care professionals from over 40 states on the use of medical cannabis. The study found “overwhelming support” for the use of medical cannabis in a hospice setting:
Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC (medical cannabis) is appropriate for hospice patients to have access to and use.
Citing barriers such as legal status, clinical safety, and societal influence, the study believes opportunities exist to better support hospice providers and patients with education, research and policies that elevate the use of medical cannabis.
With new patients entering hospice every day and both clinicians and doctors looking to supplement old pain medicines with newer more effective treatments, marijuana will remain a top topic for years to come.
Roger Kellison had Parkinson’s disease that was quickly progressing. He was a private man who eventually moved into his daughter’s house when he was unable to take care of himself.
“He had not come to our house to live,” Daniel Wallace, his son-in-law, told me. “He had come to our house to die. The last thing he wanted to do was die at a hospital.”
Roger Kellison was part of a striking trend: For the first time since the early part of the 20th century, more Americans are dying at home than in the hospital or a nursing home. This finding, included in a recent study by me and co-author Sarah Cross, is encouraging because the vast majority of Americans say they prefer to die at home. So this reflects that many more people are being able to achieve that goal.
But as more people die at home, it also means that much more responsibility falls on the shoulders of patients and their caregivers. Caregiver burden is a growing problem in America. As a doctor tending patients with heart failure, I am keenly aware of how hard managing care can be for both patients and family members.
Taking care of an ailing loved one can be exhausting physically and emotionally, and frequently caregivers lose sight of themselves. My study co-author used to work as a social worker and has seen many families struggle with managing a loved one at home. “Caregivers need to prioritize their own care,” she told me. “It isn’t selfish to take breaks, make time with friends, ask for help, look into respite options.”
After Kellison moved in with his daughter, he stayed mostly in the upstairs guest room, and for the last five months rarely, if ever, came downstairs. That physical separation was important for everyone.
“It was helpful that we delineated the house and our lives. We still went out and we still had people over,” Daniel Wallace said. “Sometimes he was part of that and sometimes he wasn’t.”
Making shared living space work is just one issue. If dying at home is important to someone, that person and their caregivers should think about — and prepare for in advance, if possible — other factors:
Perhaps most importantly, the person nearing the end needs to make clear that they want to die at home. Family, friends and medical teams need to know that. Physicians and nurses will frequently ask patients how they would like their end to be, particularly what types of intensive treatments they might or might not want. They rarely ask people where they would like to die, however.
Once at home, there are certain physical considerations worth noting: Many people have strong feelings about where in the house they would like to spend their last days — in a dark, quiet room, or looking out a window, or away from too much hubbub. Nearness to a bathroom is key. Sometimes, light remodeling, such as installing handrails in bathrooms or ramps, is helpful.
A person at the end of life will probably have feelings about who they want to spend time with — or who they don’t want — so it is important to discuss in advance who will provide caregiving, along with who might provide occasional backup for regular caregivers.
There are often community resources available as well, such as end-of-life doulas trained to care for the physical, emotional and spiritual needs of a dying person. Adaire Petrichor is one such doula. She said she “helps with rituals, ceremonies, legacy work and advice on nonmedical comfort care.”
Perhaps the most critical resource available for those wanting to die at home is hospice care. Hospice is covered by Medicare (and most other insurance) for patients with an expected life expectancy of less than six months. It is designed to help caregivers take care of a dying loved one at home with 24-hour call-in numbers to answer urgent questions, visits from hospice nurses, social workers and other staff. But home hospice does not provide full hands-on service, and caregivers still carry the bulk of the responsibility. While in many cases the care of the patient can be tougher than loved ones expect, most people find hospice guidance and support invaluable.
Wallace said hospice was key for taking care of his wife’s father after he moved in with them to die.
“Hospice was a way to bring a quality of life that he didn’t have before, because he couldn’t take care of himself and we couldn’t take care of him without hospice,” Wallace said. “If you need a wheelchair, they have that. If you need Haldol [an antipsychotic drug to treat end-stage delirium and agitation], morphine, they have it, and you can have it the next day.”
While the vast majority of hospice services are delivered at home, hospice care can also be provided in nursing facilities for dying patients who require more intensive medical care or don’t have other social supports.
Hospice is the primary reason more Americans are able to die at home today. Yet, only half of Americans who die receive hospice help. One reason may be that some people don’t ask for it because they think it is sending a depressing message to their ailing loved one or admitting what they may not want to acknowledge — that the person is in their last days.
“The obvious misconception is that it’s a death sentence,” Wallace said. But “it really is a quality-of-life sentence.”
Outside remote regions, most areas have multiple hospice agencies from which to choose.
Agencies can differ in how often nurses visit, what they might offer in crises and what equipment they provide, including hospital bed, oxygen tanks, wheelchairs. It is worth having a discussion about the support they’ll provide and other options before committing to a particular hospice provider.
With advances in public health, medicine and longevity, people now live longer with disabilities. Death is not just the terminal event in our mortal lives, but the final word of a story that can often take years to unfold.
Intermixed with periods of relative stability can be moments of terror as someone hits their final days. Physicians and other health-care providers need to prepare patients and families for these health shocks, such as worsening breathing for a patient with heart or lung disease or a pain crisis for someone with cancer.
Calling 911 when an end-of-life crisis hits initiates a cascade that can often lead to the hospital. This might be necessary if a patient has symptoms that caregivers at home feel unable to manage. For that reason, Cross said, “I recommend not making promises to a loved one such as ‘I promise I’ll always take care of you at home.’ When it becomes too much to manage at home, I’ve seen many caregivers racked with guilt for having ‘broken a promise.’ ”
Some endings can take a much more erratic course, common for those with heart or lung disease. This might be one reason our study showed that patients with cancer are more likely to be able to die at home than those with heart or lung disease.
One morning, a year after his father-in-law had moved in, Wallace went upstairs to check on him and unexpectedly found he had died.
“He did not present himself as dying when it happened,” he said. “We weren’t on death watch or anything like that.”
Some caregivers I have talked to feel uncomfortable with the idea of their loved one dying at home. Even though death has occurred at home for eons, the 20th century interrupted that historical legacy, and for many, it is a novel concept.
But for many, fulfilling a loved one’s wish to die at home provides a fitting and natural end to the story of that person’s life.
When I asked Wallace whether he viewed his house differently after his father-in-law died in it, he said: “It deepens my experience of being alive, to be in a house where someone has died. It’s a remarkable thing.”
Mary was dying. As her children gathered at her bedside, she began to cradle a nonexistent baby. She cooed and cuddled it in her arms, showing a happiness that was at odds with her physical suffering. Her children turned to the doctor, concerned that their mother was hallucinating. But he encouraged them to let her act out a scene that only made sense to her.
Later, they learned that Mary had delivered a stillborn baby years before she had her other children. What had seemed like a bizarre hallucination actually seemed to help address a trauma she had held inside for years. She died peacefully soon after.
Christopher Kerr, the hospice doctor who witnessed Mary’s actions, credits her with helping change his view on death.
Kerr has interviewed thousands of dying patients about their visions and dreams, which often include dead family members or pets or which recreate past scenes from which patients extract meaning or healing. Patients describe seeing dead family members in the room, feeling a comforting presence nearby, or tying up unfinished emotional business relating to past slights and traumas.
The book is a challenge to doctors, whom Kerr encourages to honor and listen to the dying.
“We need to bring doctors back to the bedside, to their roots as comforters of the dying rather than as mere technicians trying to extend life at all costs,” he writes.
But it beckons to readers, too, encouraging them to open up to how dying patients make meaning of their own lives. By listening to patients, says Kerr, “dying becomes less about death than about life’s resilience.”
Martha Kay Nelson has had a long career in hospice work. Rather than choosing hospice work, she believes hospice work chose her. Her training was at Harvard Divinity School. She did a yearlong internship as a hospice chaplain during her graduate work. The year after she graduated, she managed to combine her career as a chaplain with her work in hospice. She is in her mid-forties, with short hair and hazel eyes. Her warm, open face, earnest manner, and easy smile help me understand why she is so good at her work. We sit together in her office at Mission Hospice & Home Care in San Mateo, California.
DIANE: How do you feel about California’s “right to die” law?
MARTHA: Well, I have many feelings, and they could vary depending on the day or the hour. It depends on whom I’m talking to, and what her or his experience is. My overall sense about the law is that people have a right to make their own health-care decisions, whether it’s at the end of life or at any time up to that point. I know people have a hard time having these conversations, particularly early on, before they’re even sick. And then they get sick and it’s crisis time, and those decisions have to be made quickly. The End of Life Option Act to me is part of a spectrum of all those decisions and conversations that come at the end. It’s a new end point on that spectrum.
D: You’ve been in a leadership position here at Mission Hospice, not only learning, but teaching. Tell me what have been the elements of transmitting this information to others.
M: It’s been an interesting learning curve. I think even seasoned hospice professionals have had to adjust to a new option for patients, stepping into that terrain. The elements that have been important in teaching staff members, working with health-care partners, have been to get folks to acknowledge at the outset that this is a challenging topic, this is new terrain, there are profound implications, and not to shy away from it.
Some folks here at Mission Hospice didn’t want to participate, but the majority did, to have their questions answered or share some of their thoughts, their concerns. We’ve done this regularly enough that people felt they could talk freely about the End of Life Option Act. We didn’t want it to be whispered about awkwardly in the corner, that this law is coming and our patients are going to have the right to choose the option. As an agency, we’re not advocates for the law, we’re advocates for our patients, and we won’t abandon them. Having said that, any of our employees, if they’re not comfortable, don’t have to participate. They can opt out if they need to, and they would be fully supported.
D: What kinds of questions did you get from staff? What kinds of issues did they raise?
M: At the outset, a lot of general questions about details of the law, how it works, how are we supposed to communicate with our colleagues around it, what can we say to the patient and what can’t we, those kinds of things. Questions arose about accessibility to the law. If I have patients who are saying they just want to end it all, and they’re saying this a lot, but they’re not specifically asking about the law, then can I bring it up with them or not? We have a policy here at Mission Hospice that we let the patient lead. If a patient is inquiring about his or her options, then we will be there.
That’s one kind of question. Other clinicians have asked about folks who haven’t had the chance to be educated about medical aid in dying, or don’t have access to resources where they might have learned about it. What if it’s something they’d like to avail themselves of ? There’s kind of a social justice question there. There are also questions arising from specific cases. Every case is different.
D: Can you give me an idea of how many patients have actually come forward and asked you about the right to die?
M: We’ve been tracking some of these numbers, and to date, we’ve served around forty-five people since California’s law went into effect, which was a lot more than we anticipated. When back in 2016 we set out to draft our policy and prepare ourselves, we thought maybe we’d have four or five people in the first year. We had twenty-one. And about that same number inquired about the law, but never went all the way through the process. Either they actually died before they had a chance to use the law, or they changed their minds. I would imagine that it was split evenly.
D: Tell me about the process. So a patient comes to you and asks about the process, the law. How do you respond?
M: My initial response as a chaplain would be one of curiosity. I’d be interested in learning more about their thoughts and why they’re asking. It’s a big thing to ask about. Sometimes people are afraid to even inquire. They’re afraid of being shamed or judged. So I’d want to let that person know that I’m glad they’re asking. And then we’d have a conversation, whatever they would wish to say at that time. Next, I would contact the doctor and the rest of my interdisciplinary team members and would let them know the topic had been broached. Then a doctor would probably go and make a direct visit, which would be considered the first formal request, if the decision was made to pursue that course.
We really encourage the other team members to make sure they keep talking to one another—the social worker, the nurse, the spiritual counselor, home health aides, and volunteers who might also be involved. Through a team effort, we would need to have clarity on how much privacy the patient would want. Patients have the right under the law to not tell anyone but the doctors they’re working with, not even family members. Our experience has been that that’s not often the case. Usually there is communication with family.
D: Who makes the initial judgment that the patient has six months or less to live?
M: The attending physician on the case. And if the patient inquires about the law, and his or her doctor says, “I’m not comfortable being involved with this,” that’s one way we might get involved. Or it might be a hospice patient already on our service.
D: I saw in your waiting room a brochure for Death Cafes. Can you tell me about them?
M: The Death Cafe movement started several years ago in England. It’s basically having a conversation over coffee and cakes in a public venue. Anyone is welcome to attend, and the purpose is open-ended. The goal is to talk about death in any way you wish. There does need to be a facilitator, someone who is able to establish ground rules in etiquette so folks aren’t talking over one another. Folks that host them tend to have some level of experience in end-of- life care, in thanatology, but anyone can sign up. I’ve led a couple of them.
D: How successful do you think Death Cafes are as teaching tools, as comforting elements in the whole discussion of death?
M: I think Death Cafes are successful in meeting the needs of folks who already want to talk about death. If you show up at a Death Cafe, there’s something in you that is already ready to speak and to hear what other people are thinking. It can serve as a cross-pollination of ideas and thoughts, and normalization. The cafes meet a kind of thirst that we have in our culture to speak about these things openly and not be afraid. How you get people to Death Cafes is another question. I’ve had some people say they’re offended by that name, or they don’t want to attend a Death Cafe because it sounds morbid.
D: What is the best way to reach people? How do we get the conversation started even before we’re sick?
M: There’s no one best way. It’s about being creative and really getting to know your community. In my family, I’ve been lucky in that we’ve always talked about death openly. I have ongoing conversations now with my father. He’s about to turn eighty-three, and I really value the kinds of discussions and ruminations we have.
It’s wonderful. We’ve started kind of reflecting theologically, talking about, wondering together, what happens after we die. To be able to have that in a father-daughter kind of way. I’m well aware of what a precious opportunity it is to hear his thoughts. As he comes into the “lean and slippered pantaloon” time of his life, as he might say—some of his last chapters— I feel really blessed that he’s willing to discuss it openly.
D: How do you open that discussion for the general public?
M: I think it takes courage and a conscious decision to ask a question of someone in a moment when you feel there’s an opportunity. Someone speaking about her or his health, some decline, or illness, grief, and you ask, “How would you like things to be?” And perhaps even being a bit persistent if you get an initial brush-off, which often happens, but trying again, and saying, “ Really, I would like to know.”
I also think reaching children is important. I think that in our death-denying culture, children are really shielded from all things involved with death. Things happen at the funeral parlor, no longer at home, and we try to protect children in all kinds of ways. But if you don’t allow children who want to be involved in a loved one’s illness or death, I think you’re doing them a disservice. You’re keeping them from something that is integral to life for all of us. The earlier you can start to have those experiences and wonder about them and ask the questions, the more skills you will have as you age to meet them openly.
D: Have you decided what you want for yourself at the end?
M: I have no idea. I do know that I would like to have the right and the option to choose. I understand that even just knowing that the option is available can bring a lot of comfort to people. I haven’t faced a terminal illness that might cause me great physical pain or suffering, or mental or spiritual suffering. There’s one area that gives me pause, which is when folks choose medical aid in dying because they’re used to being in control in their lives. They might not have physical or mental or spiritual suffering, but they want to have personal agency. I think they entirely have the right to do that. But I also believe we’re in a culture that distorts the degree to which we think we’re in control. So on a soul level, on a much deeper level, I wonder, Are we messing with something there? How is it that we’re making such a profound decision from a place of a distorted need for control? And then I think, Well, what do I know about their journey and what they need? Maybe this is the one time they’ve ever made a strong, solid decision for themselves, and who am I to say what it is they need to learn?
D: But isn’t pain, intractable pain and suffering, and the inability to care for oneself, a sufficient reason to respect someone’s decision in terms of his or her final say?
M: Absolutely. I think clinicians have more trouble when they can’t observe visible intractable pain, when they can’t see physical or emotional suffering. It’s harder for clinicians to get their heads and hearts around that. Why is someone making this choice? And so I do a lot of counseling with staff about that, exploring how to meet the needs of the person when we don’t see them suffering, at least not on the surface. And we have to remind ourselves, clinicians need to express those feelings and concerns, so that when they’re dealing with patients directly, they can be respectful and meet them on their own terms.
When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.
Today, she struggles to remember multiplication tables.
Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis.
“It was absolutely devastating,” said Saran, 64. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in a community before I was unable to care for myself.”
So Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”
And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years.
In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document created by the group End of Life Choices New York that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.
“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”
But when Saran submitted the document to Kendal at Ithaca, the New York continuing care retirement community where she has spent more than $500,000 to secure her future, officials there said they could not honor her wishes.
In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.
There’s no provision, the letter said, for “decisions to refuse food and water.”
It’s a cruel quandary for Saran and other Americans who have turned to a crop of dementia directives created in recent years. Even when people document their choices ― while they still have the ability to do so ― there’s no guarantee those instructions will be honored, said Dr. Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.
“It is, in my opinion, a false sense of security,” Terman said.
That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and the Veterans Affairs Boston Healthcare System.
“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he added, “it’s not going to happen.”
One key question is whether patients with dementia ― or those who fear the disease ― can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.
It’s a controversial form of what’s known as VSED ― voluntarily stopping eating and drinking ― a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.
Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va.
He’s the lead author of a recent white paper advising facilities not to honor dementia directives. Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.
“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.
The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.
One version, published in 2018 by Dr. Barak Gaster, a professor of medicine at the University of Washington, has been downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.
“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”
Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he added.
As the U.S. population ages, more people ― and their families ― are grappling with dementia. By 2050, nearly 14 million Americans aged 65 and older may be diagnosed with Alzheimer’s disease.
“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.
Saran is on the crest of that wave. Divorced, with no close family, she turned to Kendal ― with its 236 independent units and 84-bed health center ― as her final home. During her four years there, she has noticed some decline in her mental clarity.
“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.
Still, she is able to manage her affairs. She cooks her own food and cares for her three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.
In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.
“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.
She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it wasn’t worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.
When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.
“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”
She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health care proxy documents and a power of attorney.
“I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”
Laurie Mante, Kendal’s executive director, declined to comment on Saran’s situation, even when Saran authorized her to do so.
“We recognize the great complexity in balancing our residents’ wishes with what is required of us,” Mante wrote in an email. “We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”
Saran said no one from Kendal has reached out to discuss an “alternative path.”
Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.
Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.
The debate, Gaster said, boils down to whether assisted feeding is “basic support” or “a medical intervention that can be declined in advance.”
“There’s still a very wide perspective of viewpoints on that,” he said.
Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help.
The controversy centers on the definition of those terms.
Wright says late-stage dementia patients who show any interest in food ― a flick of the eyes, grunting or gestures, opening the mouth ― should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”
It’s always going to be “somewhat of a guess,” Wright acknowledged, about whether hand-feeding someone is help ― or force.
“I’ve not seen any guidelines that can faithfully give good, unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”
The new crop of dementia directives was inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and British Columbia, courts ruled that food and water were basic care that could not be withdrawn.
But so far, there’s been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.
Pope said he has heard of many people who move out ― or their families move them out ― of long-term care facilities to avoid assisted feeding in the last stages of dementia.
Saran has considered that, too.
“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she’s already made. “I think about that every day.”
But then what? Hospice might be a solution, but only if there’s room when she needs it, she said.
Saran said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed.
“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”