Writing for the New York Times, Daniela Lamas, a pulmonary and critical-care physician at Brigham and Women’s Hospital, explains how doctors and loved ones “navigate death” in cases where “it becomes clear that the life that we can offer is not one that would be acceptable to the patient.”
Making the decision to ‘transition to comfort’
Many people believe that ICU doctors can easily determine whether a patient is going to die, but that’s not always true. “Our medicines and machines extend the lives of patients who would otherwise have died,” Lamas notes.
When a patient is fully relying on these measures—and it has become clear that they are not actively dying but are not improving either—doctors and family members must figure out how to “navigate death when it is not imminent and unavoidable but is instead a decision.”
During Lamas’ medical training, death unfolded in one of two ways: either in a moment of crisis, with doctors rushing into the room, trying to save a patient’s life, or in a quiet room, with loved ones gathered for the patient’s final breaths.
However, Lamas contends that there is a third form of death “when it becomes clear that the life that we can offer is not one that would be acceptable to the patient,” she writes. According to Lamas, this kind of death is planned for, occurring only after the medicines and machines keeping the patient alive are withdrawn.
“It is a strange thing to plan a death, but I have come to understand that this is part of our work in the I.C.U.,” Lamas adds.
For instance, Lamas recently cared for a cancer patient who had been intubated after experiencing a flare-up of underlying lung disease. Before the patient was put to sleep, she instructed her son to “Give her a chance to get better, but if that failed, she did not want a tracheostomy tube for a longer-term connection to the ventilator or months at a rehabilitation hospital,” Lamas recalls. “Her cancer was progressing, and that was not the way she wanted to spend the last year of her life.”
Lamas told the patient’s family that they would continue intensive interventions for two weeks, in “a time-limited trial of critical care.” According to Lamas, if the patient was not breathing on her own after two weeks, she would never be able to breath without a tracheostomy tube and extended rehabilitation—a best-case scenario the patient had already deemed unacceptable.
The day before the time-limited trial was supposed to end, the patient’s son and daughter told Lamas that they wanted to take her off the machines that evening if she was not going to improve.
“There is something uncomfortable about these conversations, where it feels as though we are asking family members to plan the end of a life,” Lamas writes. “It begins with a moment in the family meeting, when we have made the decision to ‘transition to comfort,’ and family members ask me what comes next.” However, “What they are asking, really, is how their loved one will die,” Lamas notes.
The ‘principle of double effect’
After loved ones have made the decision to “transition to comfort,” Lamas explains the next steps. “I tell them that when they are ready — as anyone really can be for any of this — we will stop the medications and the tubes that are prolonging life,” she writes.
In addition, Lamas explains that the bedside nurse will administer other medications to ensure that the patient does not experience pain. “Sometimes they ask if this medication will hasten death, and I explain that it can, but that our primary goal is always to relieve discomfort,” she adds.
Doctors refer to this balance as the “principle of double effect.” According to Lamas, doctors “accept the risk of a negative consequence like hastening death, so long as our intended outcome is to help the patient by alleviating symptoms.”
Ultimately, the pain-relieving drugs doctors administer during this process do not cause a patient’s death. Instead, they ensure that patients are as comfortable as possible while dying from their underlying disease.
We gathered as a medical team in front of my patient’s room early one Saturday. She was one of the sickest patients in the intensive care unit. Her lungs were destroyed by cancer and a rare reaction to her chemotherapy, and her condition worsened each day, despite aggressive interventions. It was clear that there was nothing more that we could do. Except to keep her alive until Monday.
Struggling to come to terms with this reality, her family had begged us to continue our interventions through the weekend. So we would keep her intubated, deeply sedated and, we hoped, pain-free, performing the rituals of intensive care until the family was ready to say goodbye.
There is a largely unacknowledged moment in critical care when doctors and nurses shift from caring for the patients in front of us to caring for their loved ones. Often these two aims are not inconsistent: Even when family members like these are not ready to stop life-prolonging interventions or ask for a treatment that is unlikely to work, they are speaking on behalf of the patient. But increasingly I wonder if it is possible to go too far to accommodate family. When a patient is at the end of life, what is our responsibility to those who will be left behind?
On another recent shift, I received a call from a colleague at a different hospital. He was caring for a patient in his 60s with severe respiratory failure after a coronavirus infection. The patient’s family was desperate for him to be transferred to our hospital, a larger institution with greater resources. But intensive care unit beds were a scarce resource, and there was no clear medical reason for the transfer. His team had already done everything that we would do, and the simple act of transferring someone so sick could be catastrophic. I was the critical care doctor on call, charged with accepting transfer requests, and it would have been easy to say no. But then there was the matter of his family.
The patient arrived overnight, just as sick as we expected. His oxygen levels had dipped in the move and never recovered. Standing outside his room the next morning, his wife asked me if I thought the transfer had been a mistake.
Maybe it was. Not because his numbers were worse; that was inevitable, regardless of the transfer. But because I had made the choice to bring someone to our hospital in large part so that his family members would believe they had done absolutely everything. Of course, family request alone is not a sufficient reason for a hospital transfer. And though I suspected that we would have nothing more to offer in terms of medical interventions, that was not possible to know with absolute certainty when the other hospital called. But perhaps even more important, I did not want his family to wonder what might have been.
And so the transfer was an act of caring for him, too, to leave his family without regret. I do not believe that we went against his wishes, sacrificed his dignity or caused him pain. When he died a few days later, it was peaceful, with his family at the bedside.
But that’s not always the case. Not infrequently a family will demand that doctors perform chest compressions and shocks if someone’s heart stops, even though we are nearly certain it won’t help. I used to find myself infuriated by these conversations. On occasion I have used hospital policy to take the decision away from the family altogether. But maybe that is not the only response.
Some years ago, Dr. Robert Truog, a critical care doctor and ethicist at Harvard, published a provocative essay arguing that there may be a role for cardiopulmonary resuscitation if it is necessary for the family, even if it will not directly benefit the patient. He told the story of a chronically ill child with a dismal prognosis whose parents were unwilling to stop aggressive measures. During one hospital admission, the child’s heart stopped, and at the parents’ behest, the team moved forward with attempts at cardiopulmonary resuscitation. When the efforts ended and the child had died, the parents entered the room, surveyed the detritus of the cardiac arrest, the lines and the tubes, and surprised the medical team members by thanking them for doing everything. Dr. Truog wrote that even if it was futile from a medical perspective, what he had come to realize was that the procedure let the family members know that the doctors had tried. That was the way to give them a narrative they could live with.
I am still not sure what to make of this argument. We would not resuscitate patients against their stated wishes, regardless of what their loved ones want. But in these moments, we are so often making decisions for both the patients in front of us and the people who will carry their story forward. And so maybe resuscitation attempts can be for a family just as much as or even more than they are for a patient. Maybe in some cases, that is justification enough.
But at the same time, I worry that even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that are just that: a performance. I wonder, too, whether this very scenario means that doctors have failed. Perhaps if we were clearer communicators, no family members would choose for their loved ones to undergo intensive treatments that only postpone the inevitable.
That Saturday in the I.C.U. passed quietly for my cancer patient. But when I returned on Sunday, I learned that her blood pressure and oxygen levels had started to teeter when the nurses turned her, as they did every few hours to prevent bedsores. The daily activities of critical care were beginning to cause harm. We had planned to wait until Monday to readdress goals with the family, but was that the right choice? I hoped my patient was pain-free but could not guarantee it. And perhaps it was unkind to allow her family to spend another day hoping she might improve when we knew that to be impossible.
We called in her adult children and told them that their mother was dying. They cried and questioned, and I asked myself whether I should have waited, but they ultimately understood. If there was no way that doctors and nurses could make their mother better, then they would focus on her comfort. They gathered by the bedside. We waited for a chaplain. And late that night, in the last of our many rituals, a nurse disconnected my patient from the ventilator, ensuring she had enough medications so that she would not struggle. It was a final act of compassion, at once for the patient, her family and for us, too.
Health and social systems around the world are failing to give appropriate, compassionate care to people who are dying and their families. According to a new Lancet Commission, today’s current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have lead millions of people to suffer unnecessarily at the end of life.
The Commission calls for public attitudes to death and dying to be rebalanced, away from a narrow, medicalised approach towards a compassionate community model, where communities and families work with health and social care services to care for people dying.
Bringing together experts in health and social care, social science, economics, philosophy, political science, theology, community work, as well as patient and community activists, the Commission has analysed how societies around the world perceive death and care for people dying, providing recommendations to policy makers, governments, civil society, and health and social care systems.
“The COVID-19 pandemic has seen many people die the ultimate medicalised death, often alone but for masked staff in hospitals and intensive care units, unable to communicate with their families, except digitally”, says Dr. Libby Sallnow, palliative medicine consultant and honorary senior clinical lecturer at St Christopher’s Hospice and UCL (UK) and co-Chair of the Commission, “How people die has changed dramatically over the past 60 years, from a family event with occasional medical support, to a medical event with limited family support. A fundamental rethink is needed in how we care for the dying, our expectations around death, and the changes required in society to rebalance our relationship with death.”
The Commission focuses primarily on the time from when a person is diagnosed with a life-limiting illness or injury, to their death and the bereavement affecting the lives of those left behind—it does not cover sudden or violent deaths, deaths of children, or deaths due to injustice.
Death and dying have become over-medicalised, hidden away and feared
Over the past 60 years, dying has moved from the family and community setting to become primarily the concern of health systems. In the UK for example, only one in five people who require end of life care are at home, while about half are in hospital (table 2).
Global life expectancy has risen steadily from 66.8 years in 2000 to 73.4 years in 2019. But, as people are living longer, they are living more of these additional years in poor health, with years lived with disability increasing from 8.6 years in 2000 to 10 years in 2019.
Prior to the 1950s, deaths were predominantly a result of acute disease or injury, with low involvement from doctors or technology. Today, the majority of deaths are from chronic disease, with a high level of involvement from doctors and technology. The idea that death can be defeated is further fuelled by advances in science and technology, which has also accelerated the over-reliance on medical interventions at the end of life.
And, as healthcare has moved centre stage, families and communities have been increasingly alienated. The language, knowledge, and confidence to support and manage dying have been slowly lost, further fuelling a dependence on health systems. Despite this, rather than being viewed as a professional responsibility for the doctor, and a right for all people and families who wish it, conversations about death and dying can be difficult and uncomfortable and too often happen in times of crisis. Often they don’t happen at all.
“We will all die. Death is not only or, even, always a medical event. Death is always a social, physical, psychological and spiritual event and when we understand it as such we more rightly value each participant in the drama,” adds Commission co-author, Mpho Tutu van Furth, priest, Amstelveen, Netherlands.
Worldwide, too many people are dying a bad death
While palliative care has gained attention as a specialty, over half of all deaths happen without palliative care or pain relief, and health and social inequalities persist in death.
Interventions often continue to the last days with minimal attention to suffering. Medical culture, fear of litigation, and financial incentives also contribute to overtreatment at the end of life, further fuelling institutional deaths and the sense that professionals must manage death.
Untreated suffering, vast inequalities, and aggressive medical treatments have come at a high cost. A disproportionate share of the total annual expenditure in high income countries goes towards treatment for those who die, suggesting that treatments at the end of life are being provided at a much higher threshold than for other treatments.
In high income countries, between 8% and 11.2% of annual health expenditure for the entire population is on the less than 1% who die that year (table 6). Care in the last month of life is costly and, in countries without universal health coverage, can be a cause of families falling into poverty.
“Dying is part of life, but has become invisible, and anxiety about death and dying appears to have increased. Our current systems have increased both undertreatment and overtreatment at the end of life, reduced dignity, increased suffering and enabled a poor use of resources. Healthcare services have become the custodians of death, and a fundamental rebalance in society is needed to re-imagine our relationship with death,” says Dr. Richard Smith, co-Chair of the Commission.
A fundamental change to society’s care for the dying is needed
The Commission sets out five principles of a new vision for death and dying:
1. The social determinants of death, dying and grieving must be tackled, to enable people to lead healthier lives and die more equitable deaths.
2. Dying must be understood to be a relational and spiritual process rather than simply a physiological event, meaning that relationships based on connection and compassion are prioritised and made central to the care and support of people dying or grieving.
3. Networks of care for people dying, caring, and grieving must include families, wider community members alongside professionals.
4. Conversations and stories about everyday death, dying, and grief must be encouraged to facilitate wider public conversations, debate, and actions.
5. Death must be recognised as having value. “Without death, every birth would be a tragedy.”
The Commission recognises that small changes are underway—from models of community action to discuss death, national policy changes to support bereavement, or hospitals working in partnership with families. While wholescale change will take time, the Commission points to the example of Kerala, India, where over the past three decades, death and dying have been reclaimed as a social concern and responsibility through a broad social movement comprised of tens of thousands of volunteers complemented by changes to political, legal, and health systems.
“Caring for the dying really involves infusing meaning into the time left. It is a time for achieving physical comfort; for coming to acceptance and making peace with oneself; for many hugs; for repairing broken bridges of relationships and for building new ones. It is a time for giving love and receiving love, with dignity. Respectful palliative care facilitates this. But it can be achieved only with broad-based community awareness and action to change the status quo,” says co-author Dr. M.R. Rajagopal, Pallium India, India.
To achieve the widespread changes needed, the Commission sets out key recommendations for policy makers, health and social care systems, civil society, and communities, which include:
Education on death, dying, and end of life care should be essential for people at the end of life, their families and health and social care professionals.
Increasing access to pain relief at the end of life must be a global priority, and the management of suffering should sit alongside the extension of life as a research and health care priority.
Conversations and stories about everyday death, dying, and grief must be encouraged.
Networks of care must lead support for people dying, caring, and grieving.
Patients and their families should be provided with clear information about the uncertainties as well as the potential benefits, risks, and harms of interventions in potentially life-limiting illness to enable more informed decisions.
Governments should create and promote policies to support informal carers and paid compassionate or bereavement leave in all countries.
Researchers conducted an international survey to determine what constitutes good end-of-life care and which countries are the best at providing it.
They scored 81 countries, most of which earned a grade of “C” or below for their palliative care. The United Kingdom ranked first. The U.S. ranked 43rd.
Higher income, universal health coverage, and wide availability of opioids for pain relief were generally associated with better scores.
Death is an inevitable part of life — a mysterious climax that all humans face, evoking wonder and trepidation. That’s why dependable end-of-life care is so vital. While only some of us break bones, develop cancer, or catch an infectious disease, we all die eventually. To depart with dignity in relative comfort shouldn’t be a rare privilege.
Regretfully, new research published in the Journal of Pain and Symptom Management shows that many countries do not offer their citizens a good death.
Eric Finkelstein — a professor of health services at the Duke-NUS Medical School, Singapore, and the Executive Director of the Lien Centre for Palliative Care — led an international team of researchers to conduct a sweeping analysis of countries’ end-of-life (palliative) care. Finkelstein and his colleagues first set out to characterize quality end-of-life care, reviewing 309 scientific articles to determine the factors involved. A few that they identified included:
The places where health care providers treated patients were clean, safe, and comfortable.
Health care providers controlled pain and discomfort to patient’s desired levels.
Health care providers provided appropriate levels and quality of life extending treatments.
Costs were not a barrier to a patient getting appropriate care.
The researchers settled on 13 factors in total. They then surveyed 1,250 family caregivers across five different countries who had recently looked after a now-deceased loved one to ascertain the relative importance of each indicator. Here’s how the factors ranked:
Finally, the researchers sought out hundreds of experts from 161 countries to rank their respective country’s end-of-life care based on these weighted factors, asking them to “strongly disagree, disagree, neither agree nor disagree, agree, or strongly agree” with whether their country’s healthcare system generally met each palliative need. To be eligible, experts had to be “either 1) a representative of the national in-country hospice-palliative care association or similar national professional association with an established leadership role, 2) a health care provider (physician, nurse) involved in provision of palliative care, or 3) a government employee or academic with knowledge of palliative care in the country.”
At least two experts were required to respond from a specific country for the researchers to consider the nation’s score valid. In all, 81 countries comprising 81% of the world’s population ended up being ranked.
The United Kingdom earned the highest score in the study, followed closely by Ireland, Taiwan, Australia, South Korea, and Costa Rica. These were the only countries to earn an “A” grade, scoring 90 or above. Ukraine, Argentina, South Africa, and Lebanon were a few of the 21 countries to merit an “F” grade, scoring 60 or below.
Finkelstein found the results disheartening.
“Many individuals in both the developed and developing world die very badly – not at their place of choice, without dignity, or compassion, with a limited understanding about their illness, after spending down much of their savings, and often with regret about their course of treatment,” he said in a statement.
Higher income, universal health coverage, and wide availability of opioids for pain relief were generally associated with better scores.
Of note, the United States earned a “C”, ranking 43rd of the 81 countries with a middling score of 71.5. Commenting on why the U.S. ranked so poorly, especially compared to other high-income countries, Finkelstein said that Americans often spend tons of money on excessive, often futile treatments and surgeries aiming to extend life at the dusk of one’s existence — sometimes just for weeks or months — rather than focusing on ensuring quality of life at the end.
A key drawback of the study is that each country’s ranking was determined by an average of only two experts. While the researchers made clear that these experts are quite knowledgeable and respected, it seems hardly fair to rate an entire country’s end-of-life care system based on the opinions of just two individuals, each of whom is undoubtedly biased by their own experiences.
The experts were also asked for their thoughts on what facilitates good end of-life-care in a country. Collectively, they suggested that investment from the national government, patient-centered, integrative care, and universal healthcare with free access to palliative care services contributed greatly.
Some people with advanced heart failure live for a long time, while others don’t. That uncertain timeline poses challenges for doctors, their patients and families dealing with end-of-life care.
“We’ve had quality indicators for cancer for many years, which have been used to make sure that end-of-life patients get high-quality care,” said Dr. Rebecca Hutchinson, a hospice and palliative medicine specialist at Maine Medical Center in Portland. “With heart failure, we don’t have those indicators.”
That discrepancy motivated Hutchinson and five colleagues to conduct in-depth interviews with 23 cardiologists and primary care physicians across Maine about treating people with advanced heart failure.
The study, published Monday in the Journal of the American Heart Association, found “prognostic uncertainty” of advanced heart failure complicates how doctors care for patients for several reasons.
“Heart failure is marked by frequent exacerbations where patients can get pretty sick and then recover back to baseline or pretty close back to baseline,” said Hutchinson, who led the study. “At some point, one of those exacerbations usually marks the beginning of end of life, but it’s not always easy to tell. Are you in one that’s close to end of life or are you in one where there’s going to be a recovery?”
That, she said, forces doctors to balance the desire to prolong life against the possibility that more treatment will do no good and cause unnecessary suffering. The uncertainty often makes it harder for patients to recognize the reality of their disease, and harder for doctors to discuss the situation with them, the study found.
“Doctors told us that patients with heart failure frequently don’t realize that this is a terminal disease,” she said. “That makes it harder to have the end-of-life conversations early to make sure we’re giving them care that’s consistent with their values.”
According to American Heart Association statistics, an estimated 6.2 million U.S. adults have heart failure, where the heart cannot pump enough blood to meet the body’s needs. About one-tenth of those are classified as advanced heart failure, where usual treatment is not effective but the remaining life span is hard to predict.
The study also examined differences in urban and rural areas, where patients may have less access to medical specialists and quality in-home care.
“That’s good and bad,” Hutchinson said. “Patients in rural areas tend to have less aggressive (unnecessary) interventions at the end of life, but it’s bad in that they may not have access to life-prolonging therapies.”
Hutchinson said the findings emphasize the need for better methods to calculate a patient’s prognosis and determine a patient’s values so that end-of-life care matches what the patient wants. Regardless, she said, palliative care—medical help to relieve the symptoms and stress of a serious illness—should be part of the plan.
“Palliative care really shouldn’t be tied to a prognosis,” Hutchinson said. “A lot of people associate palliative care with end-of-life care and hospice, but it’s really not.”
That point alone makes the study worthwhile, said Dr. Diane Meier, director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.
While people choosing hospice must agree to relinquish insurance coverage for life-prolonging treatment, she said, “palliative care has no such restrictions. You can get it whether or not your disease can be cured, whether you’re going to live with it for 20 years or whether it’s progressive. Eligibility for palliative care is based on need—symptom distress, family exhaustion, uncertainty about what to expect—and not on prognosis.”
Meier, who was not involved with the new study, said changing the mindset is particularly important for heart patients, who may have years to live but face issues such as depression, anxiety and social withdrawal. She said all of that can be helped by palliative care, which research shows can improve quality of life and symptom control in people with heart failure.
“The important take-home message is we offer both life-prolonging treatment and palliative treatments meant to improve quality of life and day-to-day functioning—at the same time,” she said. “We need to replace our either/or mindset with a both/and model.”
Patients with treatment-limiting Physician Orders for Life-Sustaining Treatment (POLST) are less likely to be admitted to the intensive care unit (ICU) but may not always receive treatment that is consistent with their wishes, according to a study published online Feb. 16 in the Journal of the American Medical Association to coincide with the Society of Critical Care Medicine annual Critical Care Congress, held from Feb. 16 to 19 in Orlando, Florida.
Robert Y. Lee, M.D., from the Cambia Palliative Care Center of Excellence at the University of Washington in Seattle, and colleagues investigated the association between POLST orders for medical interventions and ICU admission for patients receiving end-of-life care. The retrospective cohort study included patients with chronic illness who had POLSTs, died between 2010 and 2017, and were hospitalized within the last six months of life.
The researchers found that of 1,818 decedents, 401 (22 percent) had POLST orders requesting comfort measures only, 761 (42 percent) requested limited additional interventions, and 656 (36 percent) requested full treatment. Patients with comfort-only and limited intervention orders were less likely to be admitted to the ICU; however, 38 percent of patients with comfort-only and limited intervention orders received POLST-discordant care. Patients with cancer were less likely to receive POLST-discordant care, while patients admitted for traumatic injury were more likely to receive POLST-discordant care.
“Lee et al have provided important new information about the relationship between POLSTs and overtreatment of patients at the end of life,” write the authors of an accompanying editorial. “These insights will assist clinicians in developing strategies to help ensure that patients hospitalized near the end of life receive only those treatments that are both desired and beneficial.”
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.