What It Feels Like to Die

Science is just beginning to understand the experience of life’s end.

By Jennie Dear

“Do you want to know what will happen as your body starts shutting down?”

My mother and I sat across from the hospice nurse in my parents’ Colorado home. It was 2005, and my mother had reached the end of treatments for metastatic breast cancer. A month or two earlier, she’d been able to take the dog for daily walks in the mountains and travel to Australia with my father. Now, she was weak, exhausted from the disease and chemotherapy and pain medication.

My mother had been the one to decide, with her doctor’s blessing, to stop pursuing the dwindling chemo options, and she had been the one to ask her doctor to call hospice. Still,  we weren’t prepared for the nurse’s question. My mother and I exchanged glances, a little shocked. But what we felt most was a sense of relief.

During six-and-a-half years of treatment, although my mother saw two general practitioners, six oncologists, a cardiologist, several radiation technicians, nurses at two chemotherapy facilities, and surgeons at three different clinics—not once, to my knowledge, had anyone talked to her about what would happen as she died.

There’s good reason. “Roughly from the last two weeks until the last breath, somewhere in that interval, people become too sick, or too drowsy, or too unconscious, to tell us what they’re experiencing,” says Margaret Campbell, a professor of nursing at Wayne State University who has worked in palliative care for decades. The way death is talked about tends to be based on what family, friends, and medical professionals see, rather than accounts of what dying actually feels like.

James Hallenbeck, a palliative-care specialist at Stanford University, often compares dying to black holes. “We can see the effect of black holes, but it is extremely difficult, if not impossible, to look inside them. They exert an increasingly strong gravitational pull the closer one gets to them. As one passes the ‘event horizon,’ apparently the laws of physics begin to change.”

What does dying feel like? Despite a growing body of research about death, the actual, physical experience of dying—the last few days or moments—remains shrouded in mystery. Medicine is just beginning to peek beyond the horizon.

* * *

Until about 100 years ago, almost all dying happened quickly. But modern medicine has radically changed how long the end of life can be stretched. Now, Americans who have access to medical care often die gradually, of lingering diseases like most terminal cancers or complications from diabetes or dementia, rather than quickly from, say, a farm accident or the flu. According to the Centers for Disease Control’s most recent figures, Americans are most likely to die of heart disease, cancer, or chronic pulmonary lung disease.


For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life—a phase known as “active dying.” During this time, Hallenbeck writes in Palliative Care Perspectives, his guide to palliative care for physicians, people tend to lose their senses and desires in a certain order. “First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.”

Whether dying is physically painful, or how painful it is, appears to vary. “There are some kinds of conditions where pain is inevitable,” Campbell says. “There are some patients that just get really, really old and just fade away, and there’s no distress.” Having a disease associated with pain doesn’t mean you’ll necessarily endure a difficult death, either. Most people dying of cancer need pain medication to keep them comfortable, Campbell notes—and the medicine usually works. “If they’re getting a good, comprehensive pain regimen, they can die peacefully,” she says.

When people become too weak to cough or swallow, some start to make a noise in the backs of their throats. The sound can be deeply disturbing, as if the patient is suffering. But that’s not what it feels like to the person dying, as far as doctors can tell. In fact, medical researchers believe that the phenomenon—which is commonly called a death rattleprobably doesn’t hurt.

Ultimately, because most people lose awareness or consciousness in their last few hours or days, it’s hard to know for certain how much patients are suffering. “We generally believe that if your brain is really in a comatose kind of situation, or you’re not really responsive, that your perception—how you feel about things—may also be significantly decreased,” says David Hui, an oncologist and palliative-care specialist who researches the signs of approaching death.  “You may or may not even be aware of what’s happening.”

* * *

A week or two after we spoke to the nurse, my mother sank into a state where she was rarely conscious. When she was awake, it was only the most basic part of her that was there: the part that told her legs to move to get her to the bathroom, the automated steps in brushing her teeth and then wiping the sink afterward. Her mind turned away from her children and husband for the first time.

I wanted to know what she was thinking about. I wanted to know where her mind was. Being at the bedside of an unresponsive dying person can feel like trying to find out whether someone is home by looking through thick-curtained windows. Is the person sleeping, dreaming, experiencing something supernatural? Is her mind gone?

For many dying people, “the brain does the same thing that the body does in that it starts to sacrifice areas which are less critical to survival,” says David Hovda, director of the UCLA Brain Injury Research Center. He compares the breakdown to what happens in aging: People tend to lose their abilities for complex or executive planning, learning motor skills—and, in what turns out to be a very important function, inhibition.


“As the brain begins to change and start to die, different parts become excited, and one of the parts that becomes excited is the visual system,” Hovda explains. “And so that’s where people begin to see light.”

Recent research points to evidence that the sharpening of the senses some people report also seems to match what we know about the brain’s response to dying. Jimo Borjigin, a neuroscientist at the University of Michigan, first became intrigued by this subject when she noticed something strange in the brains of animals in another experiment: Just before the animals died, neurochemicals in the brain suddenly surged. While scientists had known that brain neurons continued to fire after a person died, this was different. The neurons were secreting new chemicals, and in large amounts.

“A lot of cardiac-arrest survivors describe that during their unconscious period, they have this amazing experience in their brain,” she says. “They see lights and then they describe the experience as ‘realer than real.’” She realized the sudden release of neurochemicals might help to explain this feeling.

Borjigin and her research team tried an experiment. They anesthetized eight rats, and then stopped their hearts. “Suddenly, all the different regions of the brain became synchronized,” she says. The rats’ brains showed higher power in different frequency waves, and also what is known as coherence—the electrical activity from different parts of the brain working together.

“If you’re focusing attention, doing something, trying to figure out a word or trying to remember a face—when you’re doing high-level cognitive activity, these features go up,” Borjigin says. “These are well-used parameters in studying human consciousness in awake humans.  So, we thought, if you’re alert or aroused, similar parameters should also go up in the dying brain. In fact, that was the case.”

* * *

In her last couple of weeks, when my mother’s mind seemed to be floating off somewhere else most of the time, she would sometimes lift her arms into the air, plucking at invisible objects with her fingers. Once, I captured her hands in mine and asked what she’d been doing. “Putting things away,” she answered, smiling dreamily.

This half-dreaming, half-waking state is common in dying people. In fact, researchers led by Christopher Kerr at a hospice center outside Buffalo, New York, conducted a study of dying people’s dreams. Most of the patients interviewed, 88 percent, had at least one dream or vision. And those dreams usually felt different to them from normal dreams. For one thing, the dreams seemed clearer, more real. The “patients’ pre-death dreams were frequently so intense that the dream carried into wakefulness and the dying often experienced them as waking reality,” the researchers write in the Journal of Palliative Medicine.

Seventy-two percent of the patients dreamed about reuniting with people who had already died. Fifty-nine percent said they dreamed about getting ready to travel somewhere. Twenty-eight percent dreamed about meaningful experiences in the past. (Patients were interviewed every day, so the same people often reported dreams about multiple subjects.)

For most of the patients, the dreams were comforting and positive. The researchers say the dreams often helped decrease the fear of death. “The predominant quality of pre-death dreams/visions was a sense of personal meaning, which frequently carried emotional significance for the patient,” they report.

In patients’ final hours, after they’ve stopped eating and drinking, after they’ve lost their vision, “most dying people then close their eyes and appear to be asleep,” says Hallenbeck, the Stanford palliative-care specialist. “From this point on … we can only infer what is actually happening. My impression is that this is not a coma, a state of unconsciousness, as many families and clinicians think, but something like a dream state.”

The exact moment at which this happens—when a person enters a dream state, or even when a person starts dying—is hard to pinpoint.

That was true in my mother’s case. In the early hours one morning after it snowed, I was keeping watch with two of my mother’s friends in her library, the room where we’d moved her to accommodate a hospital bed. She seemed peaceful, and in the dim light of the morning, we stood at different points around the bed, listening to her raspy breathing.

She made no dramatic moves or indications that she was about to leave us. She didn’t open her eyes or sit up suddenly. She took a last, slightly louder breath, and died.

“It’s like a storm coming in,” Hallenbeck says. “The waves started coming up. But you can never say, well, when did the waves start coming up? … The waves get higher and higher, and eventually, they carry the person out to sea.”

Complete Article HERE!

Early Palliative Care Improves Patients’ Quality of Life

Also increases chances of having end-of-life discussions, study shows

By Robert Preidt

The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.

Starting palliative care shortly after a person is diagnosed with incurable cancer helps patients cope and improves their quality of life, a new study shows.

It also leads to more discussions about patients’ end-of-life care preferences, the researchers added.

Palliative care, also called comfort care, is given to improve the quality of life for patients who have a life-threatening disease or terminal illness, such as cancer. The goal is not to cure the patient, but to manage the symptoms of the disease, according to the U.S. National Cancer Institute.

The new study included 350 people recently diagnosed with incurable lung or gastrointestinal cancer. They were randomly assigned to one of two care groups. One group received early palliative care integrated with cancer care. The other received cancer care alone.

The patients were evaluated at 12 and 24 weeks after diagnosis. At 24 weeks, the early palliative care patients were much more likely to report using active and engaged coping styles than the standard cancer care patients.

Early palliative care patients also had much higher quality of life and lower levels of depression at 24 weeks, but not at 12 weeks, the study found.

Thirty percent of early palliative care patients said they had discussed end-of-life care preferences. Just 14 percent of standard care patients had similar talks.

The study was presented recently at an American Society of Clinical Oncology (ASCO) meeting in San Francisco. Findings presented at meetings are generally viewed as preliminary until they’ve been published in a peer-reviewed journal.

“What we found was the patients who received early palliative care were more likely to use adaptive coping strategies — meaning they were more likely to take some action to make their lives better as well as to accept their diagnosis,” lead author Joseph Andrew Greer said in an ASCO news release.

“Palliative care is a key ingredient to improving a quality of life, which is important to both patients and their families,” said Greer. He’s clinical director of psychology and a research scientist at Massachusetts General Hospital.

ASCO spokesman Dr. Andrew Epstein said these findings help show the benefits of integrating palliative care into cancer care.

“A diagnosis of cancer is never easy for patients, so it is promising that we now have a strategy of early palliative care that can help patients cope while improving their quality of life,” Epstein said.

More information

The Center to Advance Palliative Care has more on palliative care.

Complete Article HERE!

The sobering thing doctors do when they die

By Carolyn Y. Johnson

The sobering thing doctors do when they die

In “How Doctors Die,” a powerful essay that went viral in 2011, a physician described how his colleagues meet the end: They go gently. At the end of life, they avoid the mistakes — the intensive, invasive, last-ditch, expensive and ultimately futile procedures that many Americans endure until their very last breath.

“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Ken Murray wrote.

A new study reveals a sobering truth: Doctors die just like the rest of us.

“We went into this with the hypothesis we were going to see very large differences,” said Stacy Fischer, a physician who specializes in geriatrics at the University of Colorado School of Medicine. “What we found was very little difference to no difference.”

The study in the Journal of the American Geriatrics Society examined 200,000 Medicare beneficiaries to bring some hard data to the question. They found that the majority of physicians and non-physicians were hospitalized in the last six months of life and that the small difference between the two groups was not statistically significant after adjusting for other variables. The groups also had the same likelihood of having at least one stay in the ICU during that period: 34.6 percent for doctors vs. 34.4 percent for non-doctors. In fact, doctors spent slightly more time in the ICU than non-doctors, the study found — not enough time to signify a clinical difference, but suggesting that, if anything, doctors may be using medicine more intensively.

In one regard, doctors seemed to die slightly better than non-doctors: 46.4 percent of doctors used hospice during their last six months compared with 43.2 percent of non-doctors. Doctors also spent nearly 2½ more days in hospice than non-doctors.

But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.

“Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases,” said Daniel Matlock of the University of Colorado School of Medicine.

This is striking because it is the opposite of what doctors say they’d prefer. Onesurvey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.

Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease’s progress, the surgery that was totally unnecessary and might even have sped up someone’s death. Doctors have seen that happen even more often.

“Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be,” Craig C. Earle wrote in the Journal of Clinical Oncology. “We, on the other hand, have shepherded many patients through this journey toward death.”

That’s why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.

But Matlock and Fischer think their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.

“These things that encourage low-value care at the end of life are big systems issues,” Matlock said. “And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train.”

There are definite limits to the study: It could not control for differences in education or income among people in the sample. Most of the doctors who died were white men.

But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing — it’s much harder to write a prescription.

Complete Article HERE!

End Stage: Talking About End-of-Life With Those With Cancer

A nonprofit is partnering with performance artists to stimulate end-of-life discussions.


Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’
Cancer cells

No one likes to think about dying, so we don’t. We avoid the “elephant in the room” and talk around the topic. But what happens when, because of some life-threatening circumstance, you are forced to confront the idea of death? At Cancer Support Community North Texas (CSCNT), we see this happen far too often. Emotions run high, making conversations about death and end-of-life care daunting and overwhelming, sometimes even resulting in decisions that would not have been made if there had been some advance conversation and planning.

So what if we don’t avoid that “elephant?” What if we address it head-on, maybe even laugh about it? Maybe embrace the fact that death, like birth, is part of the natural order of things, and that we’re all going to die someday? In the hope of making the important conversation about death a little less overwhelming, and a whole lot less intimidating, CSCNT has partnered with The Final Acts Project, a community-based health education initiative that serves as a catalyst to stimulate end-of-life discussions, planning and legacy building through theater, creative arts and the humanities.

The Final Acts Project, the brainchild of Deborah Kaercher, Ph.D., an expert in public health and grassroots startups, was created to humanize the end-of-life experience. The initiative uses the performing arts and theater to ease the stress and anxiety of planning for our final days. By using laugh-out-loud, single-act performances and “bucket list” parties, Kaercher’s group encourages us to have the tough conversations we would otherwise avoid.

One performance that we just hosted in Dallas was “The Dead Giveaway,” a one-woman, audience-focused conversation that confronted the character’s impending death from cancer as she gave away her possessions to audience members. The interactive quality of this performance — which Kaercher’s group performs across the country — engaged the audience on a very personal level, encouraging empathy and self-reflection. More importantly, the talk-back following the performance addressed questions from the audience about end-of-life planning and advanced directives.

What particularly interests CSCNT about this unique way of broaching a tough subject is that it not only opens doors to better communication between spouses, families and close friends, but it can also lead to better care from medical professionals, social workers and loved ones. That is, by being better prepared, by being up front about our wishes and expectations, we can help direct the care we receive from others.

Rooted in personal experiences as well as evidence-based findings, the statistics on end-of-life care speak volumes: According to data from the Dartmouth Atlas of Health Care, more than one in four Medicare beneficiaries experiences an intensive care unit (ICU) stay during the last month of life. A quarter of Medicare deaths occur in the hospital, even though, in American public opinion surveys, most say they’d prefer to die at home if they were terminally ill. Medicare beneficiaries also would almost always choose to die without mechanical ventilation or medications that would make them feel worse all the time, and yet that describes the dying process for many in our nation’s critical care units.

The good news is that the times are changing. Medicare is now encouraging people to have a greater say in their desired end-of-life care. In fact, they’re now reimbursing doctors for time spent with patients having these conversations. And, organizations like ours and The Final Acts Project are collaborating to encourage people to take more control by doing advance planning that makes talking to doctors and families about end-of-life wishes easier…on everyone.

CSCNT and other cancer support organizations are already well-poised to have these conversations, with existing comprehensive systems of support in place. Now, the goal is to make it feel OK to “talk death” sooner and more comfortably with the people closest to us. So, let’s do this! Lights, camera, action…!

Complete Article HERE!

“Dying with dignity” versus “doctor-assisted suicide:” ballot initiative sets off language battle

Coloradans will decide whether to allow doctors to write life-ending prescriptions for terminally ill people



In November Coloradans will decide whether to allow doctors to write life-ending prescriptions for terminally ill people who have less than six months to live and want to die on their own terms. Whether the initiative is called “doctor-assisted suicide,” “dying with dignity” or “medical aid in dying,” though, will depend on who is paying for the campaign ad.

The language behind the fight is becoming almost as impassioned as the years-long battle over “pro-choice” and “pro-life” that morphed into “abortion rights supporters” and “abortion rights opponents.”

People in favor of the initiative use the terms “dying with dignity” and “right to die” but named their Colorado ballot measure the more neutral “end-of-life options,” although the secretary of state’s office calls it the Medical Aid in Dying initiative. The campaign also uses “medical aid in dying,” which is what proponents predict doctors will call the procedure if it becomes legal in Colorado, as it is in five other states.

Opponents of the proposed law — including many for religious reasons and others who fear it would target people with disabilities — call it “physician-assisted suicide.”

The loaded words on both sides are a case study in the power of language, and how rhetoric — or the art of public persuasion — can shape political debate.

“To communicate and attach ourselves to language is a very natural thing for a human to do, to the point that people will come to blows over ‘physician-assisted suicide’ or ‘dying with dignity,’” said Dr. Christina Foust, chair of the communication studies department at the University of Denver.

“When I think of the word suicide, I think of the words that sound just like it — homicide, infanticide. It has such a negative connotation,” she said. On the other side, “dying with dignity” connotes the ability to choose one’s own death, which is an affront to somebody who “might rest that power in God or a higher power.”

Coloradans probably will get tired of both terms by the election, after they are bombarded with TV and radio ads. But Foust and Dr. Jeff Motter, who teaches political rhetoric at the University of Colorado at Boulder, find it fascinating.

A similar linguistics battle exists over greenhouse gases: Is it “global warming” or “climate change”? There is the intense division over the #blacklivesmatter versus #alllivesmatter, a matter of a single word. And for more proof that language is powerful, consider that the words “date rape” and “spousal rape” weren’t part of the lexicon until the 1970s or 1980s, and their mere existence effected change, Foust said.

Motter, who recently moved to Colorado from North Carolina, has picked up on the way the cannabis industry is “very careful to always use the term cannabis and not pot or marijuana.”

“They are trying to reinvent the story, and the story of cannabis is the story of medical, clothing, the fiber of it, and it’s not about the recreation of it,” he said.

In Colorado’s latest social debate, “death with dignity” and “doctor-assisted suicide” tell two “very different stories,” Motter said. “Is it a story of human compassion or a story of murder?”

“Medical aid in dying” is a more neutral term because it sounds clinical, like most of the vocabulary used in medicine, Faust said. Motter agreed but questioned whether the word “aid” is innocuous because it implies “it’s not just optional; aid is essential.”

Opponents of the measure say the campaign is attempting to “sanitize” the act, in which a doctor writes a prescription for secobarbital that is later self-administered.

“If I was on their side, I’d want to sanitize it too,” said John Stonestreet, who is with the Chuck Colson Center for Christian Worldview. “It’s a hard thing to swallow. But some things are hard to swallow because they should be hard to swallow.”

“Dying with dignity” is a “euphemism for killing elderly and terminally ill patients by giving them a cocktail of toxic drugs,” Stonestreet wrote on his blog. He told The Denver Post “medical aid in dying” doesn’t convey the reality of what’s at stake. The phrase makes it sound as if doctors are only making their patient comfortable as they die, not providing the prescription that ends their life, he said. “A doctor should never do anything to cause death or harm,” Stonestreet said.

But proponents of the measure said “suicide” is a pejorative, shame-inducing word that implies someone has a mental illness and is choosing to die. “People who use medical aid in dying are victims of a terminal illness,” said Barbara Coombs Lee, president of the national Compassion & Choices organization and a board member for the Colorado end-of-life options campaign.

She compared the “choice” that terminally ill patients have to the one made by people who jumped out of buildings on Sept. 11, 2001, to avoid burning to death.

The political movement initially used the term “dying with dignity” in the late 1980s and 1990s, and was successful in passing a law by the same name in Oregon. “We knew the term was biased in our favor — it was our term,” Coombs Lee said.

The term “medical aid in dying” arose because the medical community needed language to distinguish the new practice from the crime of aiding and abetting a suicide — coercing someone to jump from a building or persuading them to overdose. “Those are heinous crimes,” she said. “They should be clearly disassociated from a legitimate and authorized medical practice. Doctors stab people with knives, and we call it surgery. They inject people with poisonous toxins and we call it chemotherapy.”

The ballot measure says two physicians must agree that a person — who must be at least 18 years old — is terminally ill and has six months or less to live and is mentally competent. It also requires that the person self-administer the secobarbital, which historically has been used in low doses as a sleeping aid.

The divisive language has left news organizations considering what is the most objective term to describe the procedure. KUSA-Channel 9 recently informed viewers the station will call it “assisted suicide,” going by the Oxford definition of “the action of killing oneself intentionally.” Others, including The Denver Post, use “medical aid in dying,” noting that the word suicide carries meaning beyond the dictionary definition.

“Language does matter,” Motter said. “Both sides want their frame, and that’s because both sides are creating their story.”

Complete Article HERE!

First step to improving palliative care: change its name

There is a cloud of darkness, misunderstanding, and stigma that surrounds the name palliative care.

The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.
The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.


Somewhere, packed inside a box of childhood memories, is a photo of 3-year-old me. Dressed in child-sized scrubs, beaming, as I grasp my uncle’s hard earned medical degree (my name delicately taped over his). With the right amount of hard work and good fortune, I am two years into medical school and on the brink of my clinical rotations at the University of Toronto Mississauga Academy of Medicine.

I am truly amazed at all the incredible advances that have been made in medicine. People with cancer live longer, women are less likely to die in labour, and robotic surgery is no longer science fiction. Friends and family often ask what the most surprising part of medical training is. They often ask what it’s like to be in an ICU or an OR for the first time, and I always thought that would be the biggest deal for me. But it’s not. What I have been most shocked about is our failure to provide people with a dignified ending of their life.

The public has been galvanized around a conversation about the legalization of medically assisted dying, an incredibly important issue. It’s our system’s formal acceptance of a person’s right to die. It’s a step forward – one that I would argue is necessary, but not sufficient, to make dying with dignity the rule, as opposed to the exception. Alone, it applies to a small group within the population of terminally ill patients, and of those, not all will elect to utilize the service. We have renovated the roof of a building with a shaky foundation. That foundation is palliative care – a type of care all patients with terminal and chronic illness should be receiving. The key to helping our patients die with dignity is improving the palliative care we provide.

The World Health Organization defines palliative care as an approach that improves the quality of life of patients, and their families, when faced with the challenges of life-threatening illness. It strives for early identification, assessment, and treatment of pain and other problems – whether physical, psychological, social, or spiritual. Interestingly and notably, it makes no mention of restriction to the final days of life, yet that is what it has come to be associated with. This critical field of medicine has also become synonymous with a lack of timely access to services, delayed referrals by health-care professionals, and limited resources at local levels.

We are doing a disservice to our patients and their families – and I would argue that much of that disservice can be linked to the cloud of darkness, misunderstanding, and stigma that surrounds the name palliative care itself. Perhaps it is my naivety as a student, but I can’t help but feel that it’s time for a change. Palliative care is broken. The goal is to support people as they approach one of the most challenging times they will ever face – emotionally, intellectually, and financially. The goal is to support – so why not call it supportive care?

Some major centres have even played with this idea. The MD Anderson Cancer Center in Texas, a global leader in oncology and palliative care, surveyed physicians to ask if they thought a name change to supportive care could impact referrals. Overall, physicians preferred the name supportive care, and expressed they were more likely to refer patients to a service with that name.

These were not the only interesting results – physicians also found that the term “palliative” more frequently causes distress and hopelessness in patients and families. They then trialed the name change at their own palliative – whoops, supportive – care centre, and actually saw an increase in referrals over a nine-month period. The research and sample size are small, but what does exist suggests that a name change could have a real impact on perceptions, and more importantly, patient access to palliative care.

Our country is on a journey of realization around what it is to live a good life and to have control over one’s destiny. That conversation is happening in many different worlds, and medically assisted dying is one of them. What needs to happen next, as difficult and overwhelming as it may seem, is trying to tackle that shaky foundation. Until we do that, we are failing our patients at their most vulnerable – we are failing to give them a good death. I believe that timely and quality palliative care is a right, not a privilege; it ought to be the rule, and not the exception. So let’s support our patients.

Complete Article HERE!

We doctors see death all around us, but we don’t like to think about our own

By Daniel Marchalik

I bought Paul Kalanithi’s memoir, “When Breath Becomes Air,” the day it came out and set it down on my kitchen table unopened. Several of my best friends from medical school did likewise. We had read Kalanithi’s recent articles and knew the story of the Stanford neurosurgery chief resident diagnosed with metastatic lung cancer — a diagnosis that 22 months later would prove to be terminal.

But instead of jumping in, for several weeks we shared email exchanges about what we could expect to find, afraid to confront the actual words on the page. We were all at the end of our residency training (several of us, including me, in surgery), and reading the book, we knew, would make real a fear that no scientific articles and patient stories could: that terrible and unexpected things happen to doctors, too.

I had never really thought about the way physicians die, even though I was seeing so much death around me. But in hospitals, death can feel routine. We encounter it in intensive care units, on the floors and in the trauma bays; we see it happen to elderly patients with dementia, to newborns and to healthy teenagers. And yet I cannot think of any colleague who does not consistently draw a hard line of separation between what happens to “them” — the patients — and what can happen to “us.” There is an otherness to the bizarre accidents and the exceedingly rare cancers: In hospitals filled with unlikely catastrophes, the statistics are always on our side.

We trust in the double standard: one recommendation for our patients, a different one for ourselves. We routinely counsel patients on their end-of-life care, and we inquire about living wills before surgery. But in asking around, I learned that none of my fellow residents have living wills, designated proxies or advance directives. I don’t have them either, nor have I had a real discussion about what I would want done if the worst-case scenario occurred.

“None of my fellow residents have living wills, designated proxies or advance directives,” writes Daniel Marchalik.
“None of my fellow residents have living wills, designated proxies or advance directives,” writes Daniel Marchalik.

I did end up having a conversation with my best friend, an oncology fellow. “You would know what I would want,” I said to him rather nonchalantly, expecting this to be the end of the conversation. “Of course,” he said, “so do you. We’ve always been on the same page.” We easily agreed that neither of us would want prolonged breathing or feeding tubes, or holes made in our windpipe, or ending up stuck in a coma. Unless, of course, that coma was reversible.

“What percent chance of reversibility?” he asked. I didn’t have an answer — “I guess 5?” My best friend, it turned out, would draw the line at 2 percent, but not if there’s significant brain damage involved. How much brain damage is significant? As we considered our end-of-life preferences, it became clear that neither of us knew what the other would want because we had never actually thought through our own stances.

Physicians, like most people, do not want to discuss the implications of their own mortality. We forgo difficult conversations, assuming that our wishes would somehow be innately known by our friends and families. Haven’t we always been told that all doctors want the same thing? Indeed, a 2014 survey confirmed that an overwhelming majority of physicians — almost 90 percent — would choose no resuscitation. Most doctors also report wanting to die at home rather than in a hospital.

Perhaps it is these general assumptions that make physicians not feel the need to explicitly discuss and outline their end-of-life preferences. In a survey of almost 1,000 physicians whose mean age was 68, almost 90 percent thought that their family members were aware of their wishes for end-of-life care. Almost half of those surveyed did not think their doctor was aware of their end-of-life choices, with 59 percent of those participants having no intention of discussing these wishes with their doctor in the next year.

But we know that conversations about proxies and advance directives should happen long before they need to be utilized.

A 2016 study found that physicians were as likely to be hospitalized in the last six months of life as were non-physicians. On average, they also spent more days in intensive care units at the end of life and were as likely as others to die in a hospital.

So why are doctors dying in hospitals and in intensive care units instead of at home, when we know that their wishes tend to align with avoiding extreme measures at the end of life? My best guess is that physicians and non-physicians alike are skilled at believing that bad things happen only to others. Repeatedly witnessing tragedy does nothing to temper this human tendency.

At the same time, questions about the end of life are never easy even if we try to pretend that they are, and dealing in absolutes and generalities is seldom helpful. We see patients spending years on life support or clinging to hopeless cancer treatments and agree that we would never want that road for ourselves. Most of the time, however, the issues are markedly less clear. Often, the calculus shifts as life itself changes, as the needs of significant others and children become factored into the equation.

For that reason, living wills or designated proxies cannot exist in isolation. Instead, these questions must begin with a lot of self-reflection and difficult conversations with our loved ones. But none of that can happen until we come to terms with the unsettling reality of our own mortality. Not reflecting on or discussing it, like not picking up a book, does not change our reality: that illness and death are often unpredictable, and that this is as true for us doctors as it is for our patients.

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