Tag: Advance Directives

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Deficiencies In End-Of-Life Care Extend Across Ethnicities

By Barbara Feder Ostrov

What kind of care do you want at the end of your life?

elderlyStanford University researchers put that question to members of three major ethnic groups in the San Francisco Bay area and found little variation in their responses.

“There is a common humanity – people want to live as long as they have good quality of life. When it is their time, they want to be consulted so they die in a way that they are respected, and they don’t want their families burdened,” said the study’s lead author, Dr. V.J. Periyakoil, director of the Stanford Palliative Care Education and Training Program and associate director of palliative care services at the VA Palo Alto Health Care Center.

Regardless of ethnicity, however, the researchers found that access to high-quality end-of-life care is often hampered by lack of financial means, poor communication with health providers, cultural mores and family conflicts. The study, involving more than 300 white, Asian and African-American seniors, was published Nov. 18 in the Journal of Palliative Medicine.

Periyakoil, whose earlier research focused on how doctors discuss end-of-life care with patients from different cultures, said physicians often believe that talking about end-of-life care with patients of certain ethnic groups is taboo and that patients and their families are reluctant to have these sensitive conversations. The new study, though small and limited in geographic scope, suggests otherwise. The participants may have been more affluent and better-educated than their counterparts nationwide, given the region’s demographics, Periyakoil noted.indian elder

The researchers interviewed 315 people over 50 at senior centers in Fremont, Palo Alto, San Francisco, San Jose and Walnut Creek. The group included 38 African-Americans, 160 Asian-Americans and 117 Caucasians. Interviews, conducted in English, Burmese, Hindi, Mandarin, Tagalog and Vietnamese, examined participants’ attitudes toward end-of-life care and whether they had experienced barriers to getting quality end-of-life care for relatives or others in their community.

Researchers are still collecting data on Latino participants and plan to publish a separate study on their views, Periyakoil said.

While all of the participants in the study said they valued high-quality end-of-life care, about 60 percent said they had experienced barriers to getting it, most notably financial difficulties and a lack of adequate health insurance. Medicare typically covers only short-term nursing home care and offers hospice benefits to patients whose doctors certify they have six months or less to live and who are willing forgo treatment intended to cure their terminal illness.

white eldersThere were no statistically significant differences among ethnic groups in reporting barriers to care. But participants with less education were more likely to report that their biggest barrier to care was financial. Patients with more education were more likely to cite doctor behaviors that hampered end-of-life communication. And women were more likely than men to cite barriers to care overall, perhaps because they were more likely to be direct caregivers and have more experience with end-of-life needs.

Regardless of ethnicity, patients felt that “doctors were just too busy to initiate [end-of-life] conversations, reluctant to listen to their concerns and questions about EOL decision making, and often gave vague responses, making it difficult for the patient to comprehend their choices and make informed decisions,” the researchers wrote.

An estimated 2.6 million Americans die every year, but how the American health care system handles their last days is problematic across ethnic groups, according to “Dying in America,” a landmark report released in 2014 by the Institute of Medicine. Too many people end up having aggressive treatment that is ineffective and expensive and doesn’t contribute to the patient’s quality of life, the report found. Other research examiningracial gaps in attitudes toward hospice care and other studies has found differences among ethnic and religious groups in how they approach end-of-life decisions.

But people want to talk about it regardless of background, says Dr. Steven Pantilat, a University of California, San Francisco professor of medicine and director of UCSF’s palliative care program, who was not involved in the study.

“What this study tells us is that all of our patients want us to have these conversations,” Pantilat said. “They’re waiting for their doctors to bring it up, to not be rushed, to communicate sensitively.”Asian Senior

A new federal policy may make those conversations easier – and more routine. Starting in January, Medicare will reimburse physicians for discussing end-of-life care. That policy infamously – and incorrectly – was derided as promoting “death panels” during the debate over the Affordable Care Act and a version of it was dropped from the legislation. The counseling will cover what kind of medical care patients want to receive as they approach their last days.

Periyakoil urges patients of all backgrounds to prepare for these conversations, and new planning tools are available in different languages to help. Among them is the Stanford Letter Project, which helps patients write a letter to their doctors about the end-of-life care they do and don’t want in languages including English, Spanish, Mandarin, Vietnamese, Hindi, Urdu, Tagalog and Russian.

In one redacted letter provided by Periyakoil, a woman named Patricia writes: “I do not want my longevity to be more important than my comfort.”

Pantilat advises the doctors he trains that they don’t need deep knowledge of the beliefs of every religion and culture they might encounter, because every patient, of whatever ethnicity, has different goals.

“If we come in with true curiosity, respect and openness, we can learn a lot about how to take care of someone in a sensitive way,” he said. We need to ask: “What do I need to know about your culture and your family to take good care of you?”

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WHAT’S THE BEST WAY TO DIE?

Given hypothetical, anything-goes permission to choose from a creepy, unlimited vending machine of endings, what would you select? Should you have the right to choose?

contemplating death

 

BY ROBYN K. COGGINS

After a particularly gruesome news story — ISIS beheadings, a multicar pileup, a family burnt in their beds during a house fire — I usually get to wondering whether that particular tragic end would be the worst way to go. The surprise, the pain, the fear of impending darkness.

But lately, I’ve been thinking that it’s the opposite question that begs to be asked: what’s the best way to die? Given hypothetical, anything-goes permission to choose from a creepy, unlimited vending machine of endings, what would you select?

If it helps, put yourself in that mindset that comes after a few glasses of wine with friends — your pal asks something dreamy, like where in the whole world you’d love to travel, or, if you could sleep with any celebrity, who would it be? Except this answer is even more personal.

There are lots of ways to look at the query. Would I want to know when I’m going to die, or be taken by surprise? (I mean, as surprising as such an inevitable event can be.) Would I want to be cognizant, so I can really experience dying as a process? Or might it be better to drowse my way through it?

Many surveys suggest that about three-quarters of Americans want to die at home, though the reality is that most Americans, upwards of 68 percent, will die in a hospital or other medicalized environment. Many also say they want to die in bed, but consider what that actually means: just lying there while your heart ticks away, your lungs heave to a stop. Lying around for too long also gets rather uncomfortable — as anyone who’s spent a lazy weekend in bed can tell you — and this raises a further question: should we expect comfort as we exit this life?

Sometimes I think getting sniped while walking down the street is the best way to go. Short, sweet, surprising; no worries, no time for pain. Sure, it’d be traumatic as hell for the people nearby, but who knows — your death might spark a social movement, a yearlong news story that launches media, legal, and criminal justice careers. What a death! It might mean something. Does that matter to you — that your death helps or otherwise changes other people’s lives? If there’s not a point to your death, you might wonder, was there a point to your life?

These are heavy questions — ahem, vital, ones — that don’t seem to come up very often.

I got curious about how other people would answer this question, so I started asking colleagues and friends for their ideal death scenarios (yes, I’m a blast at parties). I heard a wide variety of answers. Skydiving while high on heroin for the second time (because you want to have fun the first time, according to a colleague). Drowning, because he’d heard it was fairly peaceful once the panic clears. Storming a castle and felling enemies with a sword to save a woman, who he then has appreciative sex with, just as he’s taking his dying breaths. (That poor gal!) An ex-boyfriend of mine used to say that the first time he lost bowel control, he’d drive to the Grand Canyon and jump off.

My own non-serious answer is to be tickled to death, sheerly for the punniness of it.

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Anecdotally, young men were more fancy-free about their answers, while the older folks and women I spoke with gave more measured answers or sat quietly. Wait, what did you ask? I’d repeat the question. A pause. Hmm.

One old standby came up quite a lot: dying of old age in my bed, surrounded by family. The hospital nurses I asked had a twist on that trope: in bed, surrounded by family, and dying of kidney failure. Among nurses, there was consensus that this is the best way to go if you’re near death and in intensive care — you just fade out and pass, one ICU nurse told me. In the medical community, there’s debate about how calm death by kidney failure actually is, but really, who can you ask?

These answers are all interesting, but my nurse friend got me wondering about people who deal with death on the regular — what do they think about the best death? Do they think about it? Surely hospice workers, physicians, oncologists, “right-to-die” advocates, cancer-cell biologists, bioethicists, and the like have a special view on dying. What might their more-informed criteria be for my “best death” query?

I started with a concept that I think most can agree with — an ideal death should be painless.

***

Turns out, a painless death is a pretty American way to think about dying.

Jim Cleary, a physician in Madison, Wisconsin, specializes in palliative care, cancer-related pain relief, and discussing difficult diagnoses with patients. “Eighty percent of the world’s population lacks access to opioids,” he tells me. That includes morphine, fentanyl, oxycodone, and many of the other drugs used to soothe patients in the United States. Cleary is director of the World Health Organization’s pain and policy studies group, which is working to get these relief drugs to other nations to help those in need — burn and trauma victims, cancer patients, and women giving birth.

In his work with American cancer patients, he’s careful not to suggest that dying will be comfortable. “I can’t promise ‘pain-free,’” he says. What he can promise is that he’ll try his best to help patients end their lives as they wish. “Listen to your patients,” he tells his colleagues, “they have the answers.”

Cleary says you can lump the different ways we die into categories. The first is the sudden death. “That’s not going to be a reality for most of us,” he’s quick to point out. The other category is the long death, which is what most of us will likely experience. “The reality is death from cancer,” says Cleary, “where you actually know it’s going to happen, and you can say goodbye.”

According to the American Cancer Society, a man’s risk of dying from cancer is 1 in 4, and a woman’s 1 in 5. (It’s important to note that those numbers are just for dying from one of the many types of cancer, from bladder to brain, prostate to ovaries. The odds that a man will develop cancer are 1 in 2; for women, 1 in 3. Reality, indeed.) In long-death cases, most care does not extend life so much as extend the dying process, a fact noted by many end-of-life experts, from surgeon and author Atul Gawande to hospice patients.

Cleary thinks the idea of a “best” death or even a “good” death is a little misleading, as if it’s a competition or something one can fail at. He prefers the term “healthy dying,” which isn’t as oxymoronic as it sounds. To him, healthy dying means that death is “well-prepared for, it’s expected, and other people know about it.”

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“We as a society have to do much, much more on accepting death as a normal part of living,” he says. “So rather than even talking about what’s ‘the best way to die,’ how do we normalize dying?” In a country where funeral parlors handle our dead and corpses no longer rest for days in our own parlors at home, we’re rather removed from the whole ordeal.

Still, I press Dr. Cleary to answer the question at hand: How would he choose to die? “Would it be sudden death walking along a beach in Florida?” he ventures, then quickly reconsiders. “But if your family doesn’t know you’re dead — dad goes for a walk or run and doesn’t come back — is that good for them? It may be good for me, but it may not be good for them.”

***

In many American hospitals, you’ll find representatives from No One Dies Alone (NODA), a nonprofit volunteer organization formed in 2002 by a nurse named Sandra Clark. NODA’s founding principle is that no one is born alone, and no one should die alone, either.

NODA volunteers work in groups of nine. Each carries a pager 24 hours a day during their assigned shifts, so that one of them is always available to attend a death. Usually, a nurse makes the phone call summoning NODA volunteers. The vast majority of people who NODA visits are comatose. But that makes no difference, the principle abides; comatose or not, it’s still important for someone — anyone — to be present.

Anne Gordon, NODA’s current program director, has helped hospitals around the country start the program in their facilities. She has a worldly perspective similar to Cleary’s, and different from the expectations that most Americans have on the topic of death.

“Dying is a process, not [just] the last breath,” says Gordon. If you’re a hospital patient in the process of dying, there’s a specific protocol to qualify for NODA services. You need to be actively dying — estimated to pass in the next day or so. (“Seasoned nurses can tell,” Gordon says, which is why they’re often the ones to page the NODA volunteers.) You must have reached a point where you will not receive any further interventions — that means comfort care only, with a required “do not resuscitate” order. And you must be without family or friends who can keep you company as you pass away.

Nobody? How does it happen that a person has nobody to visit when they die?

“Sometimes a person’s outlived everyone, or they’re estranged,” Gordon explains. Maybe they do have family, but for whatever reason, the loved ones needed to leave, or live far away, or just cannot bear to be present. Some of the patients are homeless and, just as in their healthier days, have no one to comfort them. Whatever the reason, NODA will be there.

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As Gordon sees it, death is an act of meaning, and the process — what she calls “the human family coming together” — is an act of intentionality and love. “I find the whole process to be so compelling,” she says. “It’s our shared experience — a key transition we all share.”

Gordon, a Baby Boomer, sees her work and the recent public interest in end-of-life issues as a byproduct of her generation aging — an extension of the consciousness-raising of the 1960s and “one of the good echoes” from that era, she quips. “As we get closer to death, we like to talk about these things.”

There are “death cafes,” informal coffee hours where friends and strangers get together, eat cake, and talk about dying. There are high-demand conferences where people share their personal experiences of loss and grief. There are bestselling books about coming to terms with your own mortality and how to prepare for death — spiritually, familially, and financially. Even Costco, the bulk-retail giant, sells coffins alongside its low-price tire changes and discount cruises. It’s mostly just static noise, though. Death is never fully discussed, only hinted at from the margins.

Gordon believes that now — with Baby Boomers entering retirement, many losing their parents, and many more coming to grips with their own mortality — is the moment to talk through these issues as a culture, to discuss the process of death in specific terms, beyond the anecdotal and platitudinal. “When death is a daily concept,” as it might be in Bhutan, she offers, “it’s not as terrifying. What matters is quality of life.”

When I ask Gordon how she’d like to die, she demurs. “I have no answer. I figure it’ll be what’s appropriate for me.”

***

Pamela Edgar is an end-of-life doula and drama therapist in Brooklyn, New York. Similar to how birth doulas help pregnant women bring new life to the world, end-of-life doulas help people on their way out.

Edgar grew up with a mom who worked in nursing homes, and young Pamela sometimes tagged along, visiting people at different stages in their lives, including the final ones. As she grew older, Edgar got especially interested in those last months: “What is the kind of relationship that you can have with someone when it might be one of their last new relationships? What can that be like?” she wondered.

Edgar has worked in nursing home dementia units and other late-life facilities for the past eight years. After working in a Veterans Administration hospital during an internship as a creative arts therapist, she requested to go to the hospice unit. (“Nobody ever asks to do that!” she remembers her supervisor replying.) For the past three years, she’s been an end-of-life counselor with Compassion & Choices. The organization is primarily known for advocating right-to-die legislation at the state level, but it also helps anybody seeking assistance to “plan for and achieve a good death.”

“As a drama therapist,” Edgar says softly, “I look a lot at roles that people play in their life, and one of the things that I really see — and this is a little bit related to a good way to die — I see that for a lot of us, a lot of our lives are spent doing. What can we do for other people, how we define ourselves by these roles that are really about what we can do, or what we have. And as people get older, of course, that role system gets smaller, and often people can’t do all the things they used to do. I think it’s really an interesting moment for people then: What is their identity, and who are they now?”

For many, dying becomes about control and autonomy, she says. “Here are the things I still can do and what I can still control are really important for some people.”

Others get spiritual. Edgar shares the example of a patient in his 70s who’d been diagnosed with ALS and lost the ability to do many of the things he loved. “He decided that he was ready, and he and his wife kind of describe it that ‘his spirit had outgrown his body.’ He was on hospice care and he chose to stop eating and drinking, and the wife had a lot of support, and hospice was really excellent and supportive of them. It was a very peaceful passing for him.”

Peaceful. Especially given the circumstances of a degenerative illness, “peaceful” seems like an indispensable criterion for the “best” death.

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Edgar has been particularly affected by seeing choice taken away from patients. Many of the people she worked with early in her career wanted to go home but, because of what she calls the country’s “medical model” of dying, never were able to. After helping hundreds of people with their deaths — filing wills, deciding on final treatments, aiding loved ones with the transition — she’s developed an idea of a good death that’s based on her background in psychology. You’ve heard it before: letting go.

“Ultimately, we are going into an unknown,” Edgar says. “Even when people think or have ideas about what’s next, truth is, we don’t have proof. So there is that sense of going into an unknown and do people feel ready — body, mind, and spirit? Are they really ready to go?”

Sometimes, Edgar says, the body and mind are ready, but the person isn’t emotionally there yet. Or vice versa — the person feels spiritually ready, but their body’s still holding on.

“My personal answer for the best way to die is being ready, like being physically, emotionally, spiritually ready to go.”

Before we end our conversation, she stresses a point to me: “Life and death are not opposites,” she says. “We haven’t figured out how to stop either. They’re partners.”

***

In the autumn of 2014, the story of Brittany Maynard incited conversations on this topic in average American living rooms. Maynard, a 29-year-old newlywed, was diagnosed with an incurable brain cancer that gave her seizures, double vision, headaches, and other terrible symptoms that inevitably would intensify until her almost surely agonizing death.

As she looked at that future, Maynard decided that she wanted to end her life on her own terms with the help of legal medication. Unfortunately, she lived in California, which didn’t allow doctors to write life-ending prescriptions. So Maynard, her husband, and her mother packed up and moved to Oregon, where the right to die is legally recognized.

Through the ordeal, Maynard partnered with Compassion & Choices to spread the word about her journey for a good death. Her story appeared on the cover of People magazine, was featured on CNN, the Meredith Vieira Show, in USA Today, in the op-ed pages of the New York Times — you name it. Such a young woman facing such a terrible fate: it’s compelling, even wrenching, and hard to turn away from.

Disregard your personal beliefs on the morality of this situation for a moment, and think about what you would do in the face of an agonizing terminal diagnosis. Would you seek medical care until the very last breath, demanding chemo from your deathbed? Or would you prefer to go without, letting the disease take its natural course? Which path do you fear the most?

After Brittany Maynard

David Grube is an Oregon family doctor who, in his own words, has “delivered babies and sung at people’s funerals.” He wants to die “feeling perfectly well, and just not wake up.” Over his 35-year career, he has prescribed life-ending drugs to about 30 patients (though “aid in dying,” as it’s often called, only became legal in Oregon — and for the first in time the United States — in 1994). He did not prescribe Maynard’s medication, but he did talk to me about the process of aiding in a patient’s death.

Grube, who is the medical director for Compassion & Choices, says that though many people ask for the drugs, few end up using them. The prescriptions require a psychological evaluation, sign-off from two different physicians, and a 15-day waiting period before they’re available. The fatal dose will be a barbiturate like pentobarbital, a sedative that’s also used in animal euthanasia — it’s the same drug as the “sleeping pill” that killed Marilyn Monroe, Grube notes — or secobarbital, a bitter anesthetic and sleep aid. Someone like Brittany Maynard would likely stir the drug into a glass of juice, drink it, then await its effects.

In her final message to the public, Maynard wrote, “The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type. … Goodbye world. Spread good energy. Pay it forward!” Her husband, Dan Diaz, said that as she took the medication, “The mood in the house was very peaceful, very loving.” Within five minutes, she fell asleep. Then she died.

Grube says that’s usually how it goes with these cases: within an hour or two, the person stops breathing and experiences “a peaceful, simple death.” On the rare occasion when the patient takes the medication with a glass of milk or with a large dose of anticonstipation medication (vanity doesn’t automatically disappear with terminal illness), they will sometimes wake up. But when taken as prescribed, most people who choose to end their life this way will, like Maynard, pass with tranquility. It is, in a word, peaceful.

Another term for Maynard’s act is “physician-assisted suicide,” but Grube rejects that concept wholeheartedly. “They don’t want to die!” he says. “‘Suicide’ is such a harmful word … and words are scalpels; they can be healing, kind, or destructive.” Some of Grube’s allies prefer the term “physician-assisted dying,” while others talk about the “right to die.” Compassion & Choices has settled on its own values-based language to discuss cases like Brittany Maynard: “death with dignity.” Partly due to Maynard’s activism, the California legislature and Governor Jerry Brown passed the “End of Life Option Act” this October, just before the one-year anniversary of her death.

Grube says most people who ask for these prescriptions are educated, motivated, and confident. What they want, he explains, is to determine the timing of their imminent death.

Control. When a disease is controlling your body and mind, when you’ve lost pleasure in the things you once loved, when you’re in pain, when you’re suffering and you fear burdening those around you, when there’s nothing more to do but wait for death, having the power to take — or not take — life-ending drugs can be a supreme comfort. But it’s a fine line of morality.

As a philosopher and bioethicist at Vanderbilt University, John Lachs considers these situations all the time. His mother, Magda, lived to 103, but given her ever-increasing collection of age-related illnesses, he wrote in Contemporary Debates in Bioethics, “living longer seemed to her utterly pointless: the pain, the indignity and the growing communicative isolation overshadowed her native optimism and the joy she had always taken in being alive. She decided that she had had enough and she was ready to die.”

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Magda stockpiled prescriptions, ready to overdose on them, but lost them in a move, according to her son. She tried to die by abstaining from food and drink, but, as Lachs put it, “there was enough love of life left in her to make this a regimen she could not sustain.”

Is it okay to help someone else die? Lachs argues that “doctors should help us through every stage of life,” including the final one. Furthermore, exercising freedom — in this case, the freedom of choice to end one’s life — is not the same as following moral rules. “We have the right to terminate our lives even if it is wrong to do so,” Lachs says — with an important caveat. “Healthy young adults who propose to kill themselves cannot demand aid from others. … The situation is altogether different with suicide that is justifiable.”

To Lachs, context is of the utmost importance. “We don’t want people to choose death over life,” he tells me. But when the end is near anyway, and the person is suffering, what’s the argument against it?

  1. The philosopher has developed a set of five standards for the ideal death:
  2. It must be after a person has exhausted his purpose; there’s got to be nothing more for him to truly do.
  3. Corresponding to the loss of purpose is a lessening of energy — mental and physical.
  4. The person’s affairs should be in order — paperwork, wills, goodbyes, all of it.
  5. The person should feel he’s leaving something good behind — “I didn’t live for naught.”
  6. The death should be quick and painless.

Lachs has seen and heard of people who are near death but linger on. “It’s so much better when the other conditions are met and they just pass on,” Lachs says. “Ideally, life is such that it gives you a chance to get ready for death.

“Nobody has ever survived life. The bet is going to be lost. All of life is uncertain. We think it’s not, and contingency is the name of the game. But ultimately, we’re going to have to come to terms with the end of it.”

Magda, Lachs’ mother, finally did pass in the “subterfuge” way that hospice workers sometimes quietly administer: a nurse offered a morphine solution that depressed Magda’s lung function and finally accelerated her death.

What’s the best way to die? It’s a question that Lachs has spent time considering. His favorite answer comes from a medical colleague of his, but it’s an old yarn: being shot to death at 90 years old by an irate husband while biking away from sleeping with the gun-toting man’s wife.

Barring that, Lachs says, he’d like to die having met his own criteria — quickly, of a heart attack.

***

One of the last people I posed my question to was Doris Benbrook, director of research in gynecologic oncology at the University of Oklahoma. Her specialty is much different from the health care staff I’d spoken to previously — she studies cancer on the cellular level, particularly apoptosis, or programmed cell death. Does the microscopic level of dying give us any other ways to think about the best way to go?

In its most basic sense, a cancer cell over-multiplies and begins causing bodily trouble. “At the organ and tissue level, it eats away at vital organs. It grows, duplicates, divides.” That clogs up organs, cascades into other systems, and makes its body croak. How utterly unfair of something so tiny. Some cancers you barely feel, like the notoriously silent ovarian cancer, while others, like bone cancer, cause immense, deep pain.

Benbrook’s work with apoptosis aims to switch off that growth, to figure out how to flip the cell’s existing kill-switch so it can’t wreak such havoc. Years from now, she hopes, doctors could even use this mechanism as a cancer-prevention method.

Interestingly enough, CPR and other familiar cardiovascular attempts to keep people alive take the opposite tack: “They want to prevent cell death,” Benbrook notes. So there are many different ways to think about what the end of a cell means for the end of the human. But cells die constantly, and a few cells dying here and there don’t kill a person. Even though our cells die with us, she stressed that the microscopic level isn’t the right place to look when considering dying.

Her personal answer to the best way to die, however, was my favorite, if only for its imagery.

“I would like to die by freezing to death,” she says. “Because from what I understand of the process, it’s that you eventually just go numb and don’t feel anything. I have experienced extreme pain. I don’t ever want to do it again. I would like to go peacefully.”

Interesting. But it’s where she’d like to freeze to death that moved me.

“I would think that if I were to just sit on an iceberg floating up in the Arctic Ocean, that it would be a peaceful death. I could look up at the stars, I could think about life, and it could be a good experience.”

The frozen night air blowing over your body. The dead quiet of nature interrupted only by laps of the ocean and the occasional fish flopping out of the water. The icy sensation of your tears freezing as you look up at the Great Bear constellation for the last time. That really doesn’t seem like such a bad way to go.

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But Benbrook and I come quickly back to land. “Of course I would like to have my family surrounding me, and the chances that I’m going to go sit up on an iceberg in the Arctic Ocean to die — that is not likely.” She laughs. “I’d probably be laying in a bed surrounded by loved ones. My goal would be to go peacefully.” Back to the beginning.

***

So I turn to you, brave and patient reader: from the absurd to the probable, how would you like to die? Allow yourself to think about it, in as far as you’re ready to do so. Do you want a breathing tube snaked down your throat if it becomes necessary? Do you want to be fed if you can’t do it yourself? Would you mind dying in a hospital? You can even get down to ambient details — do you want punk music blasting, a warm room, someone rubbing your swollen feet?

Whatever you wish, however deeply you’re willing to think about it, the key is to share your ideas about a good death. Talk to your family, write down what you want, and keep it somewhere they know about. Ask people about it at parties. As anyone who’s made a “pull the plug” decision can tell you, any guidance you leave will be helpful if you can’t speak for yourself on your last day.

This is your last possible decision, after all — better make it a good one.

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The strange landscape of living and dying in the United States

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What Really Matters at the End of Life?

The extraordinary pain of many people around you is unaddressed, and the scale of that unmet need would shock you if you saw it. Compartments of privacy separate you from the experience of your neighbors and even your own families. I understand that you have been unaware as well as hopeful that our medical system will either fix the problems or, at least, soothe the pain. It does neither consistently. The grappling of human beings to make sense out of the fact that they die has only been hiding in plain sight for a short time, and our society is awakening. That is both good news and a difficult truth.

Don was a “damn good” bookkeeper, he told me at our first palliative care visit in his home, and an amazing father according to his daughter. Don wished he hadn’t smoked the way he had, but 438,000 cigarettes later, he had widespread lung cancer. Taking a shot with palliative chemotherapy, neither of us had much confidence it would deliver value.

It’s a fair estimate that 107 billion people have been born in about 140,000 years of human history … the mothers and fathers of us all. Our modern medical system is less than 100 years old. Through technology and deepening understanding of our biology, lifespans are extended and the quality of life for most of us currently living is enhanced … for a while.

And yet, when we actually begin to complete our lives we do so without the simple things we need. For nearly all of human history, dying was no surprise as it occurred in close proximity to our living. In our modern system, we have hidden it away in hospitals, nursing homes and behind the closed doors of neighbors we don’t really know very well. The structures of coping were family and community, supported by the best efforts of those possessing certain skills directed at soothing the process without any illusions about changing the outcome. With such support, people died well, in peace, and with context. While our modern medical system brings enormous value to us while we navigate the beginning and the middle of our lives, it is an open secret that people have never suffered as badly as they do now as they complete their lives.

His weight continued to peel off, and even one cycle of chemotherapy was a “nightmare.” He accepted hospice without a lot of fanfare. With a long and short acting opiate, and a whiff of lorazepam at bedtime, his pain and breathlessness were well controlled despite increasing oxygen requirements. He got to work on “closing the books” and his daughter moved in.

A dynamic conversation about care for people with serious illness and those approaching death is exploding nearly everywhere in our society. From outside my field of palliative medicine, there is the work of Ellen Goodman and the Conversation Project, the intimate chronicles of Oliver Sacks last days in the New York Times, and the Institute of Medicine’s sentinel report on “Dying in America.” Atul Gawande with his bestseller, Being Mortal, offers his own awakening to the terrible truth of how our system of medicine fails to deliver the care needed and perpetuates the flimsy idea that we can fix anything.

From within the health care system, decades of effort from the likes of physician/author Ira Byock and trailblazing physician/ leader Diane Meier, as well as thousands of dedicated and inspired professionals, are bearing fruit to bring Palliative Care to central relevancy in discussions of health care delivery and reform. Baby Boomers like myself are being confronted with the truth of aging, the limits of technology, and the waste of a system that is doing exactly what it is designed to do. In his recent TED talk, BJ Miller put it simply, “Health care was designed with diseases at its center, not people. Which is to say that it is badly designed.”

As the weeks unfolded, Don’s world got smaller as he spent more time with the TV off instead of on. When I asked him about his process, he shrugged. He admitted that he was feeling physically better than he had now that the chemotherapy was cleared out, and that he was more relaxed with his daughter in the other room and hospice available anytime. “They are great, and a big relief.”

A millennial voice was also recently heard. That of Brittany Maynard, the 29-year-old Californian woman who relocated to Oregon to complete her life on her own terms with a legal and lethal prescription. In the last few weeks of her life, she pulled back the curtains and shared the experience of a modern death with a society that has had the habit of averting its gaze from such common experiences. With this act of empowerment and resolve, she has electrified the social discourse around self-determination and dignity, spurring California’s End of Life Option legislation. The bill was signed into law recently by a circumspect Governor Jerry Brown, and the landscape of self-determination was transformed.

His daughter thought he was too weak to make his way across the house to the cabinet where the medicines were kept. She had thought this thought because of hints and sideways remarks about “pointlessness.” Don would never be described as “patient,” she told me. In the dark and quiet of the night, he got up and did make what must have been an epic and lonely journey. He got all the pills, returned to his recliner, and removed his high flow oxygen before swallowing dozens of tablets. Alone.

For the last fifteen years, I have been a specialist in the field of palliative care and hospice. I have accompanied thousands of people and their families in the face of severe illness and a system of care that often fails to even avoid making their experience worse. I am a beginner. There have always been so many more people than there are teams of palliative care and hospice professionals to care for them, and this will be the case for decades. Even with the best palliative care and hospice support, we observe profound suffering, and we are often powerless to offer anything more than being there.  That’s usually enough. But sometimes, it’s not even close.

As I move into a future where folks like Don and his daughter don’t have to be alone as they contemplate and choose their own path, my own sense of humility and respect for the people that seek my care continues to grow. When it comes right down to it, I trust people to know the path forward for themselves and I am honored that they allow me to accompany them.

This is a remarkable moment for our society for reasons far beyond any legislation. We are awakening to the truth of things. We are beginning to realize that the measure of us may have something to do with how we care for each other in our most difficult moments and how we address the deepest challenges faced by our society and our planet.

Perhaps, if we can begin to live life as if we won’t live forever, we can create a better world to live in and to die from.

Complete Article HERE!

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Before I Die: Why everyone’s talking

By 

Christine Corti knows how hard it can be to talk openly about death and dying. The 39-year-old graphic designer for Samaritan Healthcare & Hospice spends her work day surrounded by the discussion.

Her own mother scolds her when Corti says someone has “died.” Her parents are more conservative than she is, more private, more dignified, she explained.

Christine Corti
Christine Corti leads a discussion about end-of-life wishes and care with Samaritan Hospice employees.

“They didn’t grow up in the social media world where people are talking about what they ate,” said Corti, who also handles Samaritan’s social media. “You didn’t have intimate conversations about a lot of topics, including being sick and dying.”

But the discussion is more important now than ever.

Last year, Samaritan launched headlong into a project intended to break down those unspoken conversation barriers. It devised a campaign asking people to talk about their end-of-life care, using community events and games as conversation starters.

The work grew out of Samaritan’s own experience, as employees shepherded families making critical medical decisions for their loved ones, explained Joanne Rosen, who leads Samaritan’s initiative.

“Those decisions are heart-wrenching,” Rosen said. “We really believe that the best time to start having those conversations is early on. We suggest while we’re all healthy, not just when somebody is diagnosed.”

The need is clear.

According to a “Health Matters” poll conducted by the New Jersey Health Care Quality Institute and the Monmouth University Polling Institute, more than 54 percent of New Jersey residents have no legal documents expressing their wishes for end-of-life care. Another 38 percent have never talked about advanced care planning.

But people should make that conversation part of their routine health care, even when in their 20s, said Dr. Stephen Goldfine, Samaritan’s medical director.

“If you start having these conversations, it normalizes the conversation,” Goldfine said. Starting in 2016, physicians will be reimbursed for having that conversation with patients, which Goldfine called “a big step forward.”

Often, medical care is provided without knowing what the patients’ desires are, he explained. Decisions are often made when patients aren’t able to make them. That could mean a person’s life is extended through aggressive interventions, such as long periods spent on breathing machines, against their wishes.

“Just because we can do something, should we do it?” Goldfine asked. “For physicians, as we have more and more interventions, it becomes harder for us.”

Everyone needs to define his or her own quality of life, he explained. A self-defined “talker,” Goldfine said if he can no longer have a rational conversation with his loved ones, he doesn’t want aggressive care to extend his life — “I just want to be kept comfortable.”

Getting young people to talk about death isn’t as hard as one might think. That same “Health Matters” poll found 73 percent of respondents said they are comfortable with the idea of aging and death, and start thinking about it as early as age 30.

In some circles, it’s even earlier.

For the past nine years, Samaritan has helped Moorestown Friends School offer a semester-long course on hospice care. And though the class delves into difficult territory, it’s become a popular elective, explained Priscilla Taylor-Williams, a teacher who leads the religion department at the school.

“I think in some ways, it’s kind of a relief to be able to ask the real questions, and share some concerns,” Taylor-Williams said. “I think it helps that all of the adults who talk to them are comfortable. That’s the huge piece right there. … We are not afraid of this conversation.”

And it’s not like teens haven’t encountered death in their own lives. Indeed, the course was launched after the deaths of a teacher and a student. After taking the course, some students have used what they learned in their own families, Taylor-Williams said.

“I know kids talk about it,” Taylor-Williams said. “Most teens I know have lost someone by the time they’re in these high school years, or they’re watching someone go through some pretty serious illness in their families. I think it’s helpful to have a way to talk about it.”

Corti, the Samaritan graphic designer, thinks younger people are more open to a discussion about end-of-life care. She suggests making it a part of casual conversation, when out to dinner or in a car ride.

“Just put little droplets of those thoughts out there,” Corti said. “It just might help open that conversation for the next time.”

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A nurse with fatal breast cancer says end-of-life discussions saved her life

Amy Berman says discussions with her doctors have been very valuable.

 

By Amy Berman

To: Centers for Medicare & Medicaid Services:

News reports say you will soon make a final decision about paying doctors and other providers who talk to their patients about end-of-life planning, I have a fatal form of breast cancer, and I’d like to tell you how such conversations have allowed me to survive, and live well, in the five years since my diagnosis.

I am a nurse, a nationally recognized expert in care of the aged and senior program officer at the John A. Hartford Foundation, which is devoted to improving the care of older people in the United States. Yet my perspective is not simply professional. For, you see, I live with Stage 4 (end-stage) inflammatory breast cancer. And while this metastatic cancer will one day kill me, the advanced-care planning conversations I have had with my health-care team have been lifesaving since my diagnosis.

I use the word “lifesaving” advisedly because that is what these conversations are truly about. When done well, they can shape care in ways that give people with serious illness a chance at getting the best life possible.

This kind of conversation initially helped my care team understand what was important to me and helped clarify my goals of care. Faced with an incurable disease and a prognosis where only 11 to 20 percent survive to five years and there is no statistic for 10-year survival because it so rarely happens, I came to understand that my priority was to seek a “Niagara Falls trajectory” — to feel as well as possible for as long as possible, until I quickly go over the precipice. Quality of life is more important to me than quantity of days, if they are miserable days.

Following a discussion with my oncologist (a conversation that would be reimbursed if you in fact move ahead and change your rules), we initially decided on a palliative regime to slow the cancer’s spread with the least amount of burdensome side effects. We would not impose the most difficult curative treatments on an incurable disease.

This treatment has included a pill I take each evening to hold back the hormones that fuel my cancer, coupled with a monthly infusion to keep my bones strong. I don’t take most difficult treatments, the typical noxious cocktail of two chemotherapy drugs that 90 percent of people with inflammatory breast cancer receive, coupled with surgery to remove my breast, followed by weeks of radiation and more debilitating chemotherapy.

When I suggested a second opinion after I was diagnosed, my oncologist blessed it. Sadly, when I sat down with this esteemed expert, he didn’t ask about my goals or wishes. Instead, he suggested an aggressive, hail-Mary treatment regime — including rounds of chemotherapy, a mastectomy and radiation — that would have compromised the quality of my remaining life without any real benefit. There was no conversation. He was expert in everything but what really mattered to me. I thanked him for his time, and left.

[How I decided to live a good life with the time I have left.]

I am pleased to report that the subsequent nearly five years have rewarded my decision to seek palliative rather than more aggressive treatment. The cancer has spread a bit farther from my spine and into a couple of my ribs. But because my treatment focuses on helping me live well and feel well, I haven’t been in the hospital. I feel great. My pain has been minimal so far — with one exception.

Six months ago, the cancer spread to a new spot, my fourth and fifth ribs. It was painful. The standard treatment is 10 to 20 doses of radiation to get rid of the pain. My palliative care provider, an expert in fostering discussions about goals of care, said that a recent recommendation of the Choosing Wisely Campaign, which promotes patient-physician conversations about unnecessary medical tests and procedures, suggested that I could get rid of the pain with a single, larger dose of radiation. It worked like a charm. I felt better, avoided the terrible side effects of repeated radiation, got immediate relief and avoided paying for all the unnecessary doses of radiation.

I estimate I’ve saved about a million dollars by avoiding care I do not want, which includes the cost of chemotherapy, radiation, surgery to remove the breast, at least one hospitalization for that care, and the follow-up care to the surgery. Chemotherapy alone would have cost upward of $500,000. Insurance would have covered much of this, but not all.

Meanwhile, I continue to work full time and have redoubled my efforts to improve the health-care system for older people. And I live a good life with serious illness. I have climbed the Great Wall of China, ridden a camel in the Jordanian desert and water-skied to the Statue of Liberty, and I continue to enjoy time with my family and friends.

So my original advance-care planning discussion has been lifesaving. It has also saved the health-care system a great deal of money.

All people deserve care that meets their emotional and financial needs. Unfortunately, health-care providers, including those paid by Medicare, have not had the incentives, time or training to sit down with people facing a life-threatening illness and discuss what’s important to us as our health deteriorates, things such as where we want to die (I want to be at home), what’s most important (control my pain) and what treatments we want to avoid (I don’t want to be on life support and don’t want to be resuscitated). As a result, our system provides a lot of expensive crisis care as people reach the end of life — care that people, if asked and engaged, might say they never wanted.

[Medicare has a rule that prevents people in hospice care from getting reimbursement for further treatment]

This does not have to happen. High-quality advance-care planning discussions help people like me understand their options and make their wishes known. They can identify a surrogate to make decisions when they are unable to, and they can document their preferences in their medical records. These discussions — which should be ongoing, not just one-time — can revisit decisions in the face of new challenges, and over time they can guide providers to deliver the care that patients and their families want.

The benefits of a rule from Medicare covering such conversations are clear: better health, better care and, in many cases, lower costs. Most important, these conversations will be lifesaving, enabling those of us with serious illness to live the way we want to, fully and deeply for as long as possible.

Thank you for your consideration.

Complete Article HERE!

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As Alzheimer’s Symptoms Worsen, Hard Conversations About How To Die

By Rebecca Hersher

Six years after he was diagnosed with early onset Alzheimer's disease, Greg O'Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.
Six years after he was diagnosed with early onset Alzheimer’s disease, Greg O’Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.

In this installment of NPR’s series Inside Alzheimer’s, we hear from Greg O’Brien about his decision to forgo treatment for another life-threatening illness. A longtime journalist in Cape Cod, Mass., O’Brien was diagnosed with early onset Alzheimer’s disease in 2009.

These days, Greg O’Brien is thinking differently about the future. It’s been six years since his Alzheimer’s diagnosis, and he’s shared with NPR listeners a lot about his fight to maintain what’s left of his memory. He’s shared his struggles with losing independence, and with helping his close-knit family deal with his illness.

What O’Brien hasn’t wanted to talk about until now is the diagnosis he got two weeks before he and his family learned he had Alzheimer’s disease: O’Brien also has stage 3 prostate cancer. Now, as his Alzheimer’s symptoms worsen, the cancer is increasingly on his mind.

“I just don’t know how much longer I can keep putting up this fight,” he says.

This summer, Greg and his wife, Mary Catherine O’Brien, have started talking about how he wants to spend the final years of his life — and what Greg calls his “exit strategy.”

He hopes the cancer will kill him before the Alzheimer’s disease completely robs him of his identity.

Recently Greg sat down with his close friend and primary care physician, Dr. Barry Conant, and with Mary Catherine, to talk about that decision and about Greg’s prognosis.

Interview Highlights

Dr. Barry Conant on the ethics of not treating Greg’s prostate cancer

I think honestly, in a perverse kind of a way, it gives you solace.

Maybe it will shorten the period in your life which you find right now to be something you want to avoid, and so far you’re only talking about neglect of a potentially terminal condition.

If you decided to be more proactive, that’s where the discussion becomes more interesting. Some people would say I’m violating 001my Hippocratic oath by discussing that, but I think — I don’t feel uncomfortable having that discussion. And, while you still have the ability to reason, it wouldn’t be a bad discussion to have with your family.

Conant — who, like O’Brien, has cancer — consoles Greg that his family will be OK

Nobody is indispensable — nobody. And if you or I were to immediately vanish from the Earth, our families would do fine. They have family support. They have friends’ support. They’re in a nice community. It’s a terrible sense of loss that they’ll have, but they will do fine. And if they’re honest with themselves, they’d realize that they’re going to do fine.

Greg and Mary Catherine discuss Greg’s prognosis

Mary Catherine: Going through Alzheimer’s, it’s not the plan.

Greg: Where do we go from here?

Mary Catherine: That I don’t know. …

Greg: It’s getting so frustrating for me. I mean I care, obviously, deeply about you and the kids. I could see 3 or 4 more years of this, but I can’t keep the fight up at this level. We talked about that the other night. How did you feel about that?

Mary Catherine: Wow … (chokes up). I don’t want to talk about it.

Greg: Can you see it coming?

Mary Catherine: Yeah, I can. Fast.

Greg: Are you OK with me not treating the prostate cancer?

Mary Catherine: Only because you’re OK with it. You need that exit strategy, and the exit strategy with Alzheimer’s is horrible. Well, they’re both horrible.

Greg: You know I’ve been there with my grandfather and mother, and don’t want to take my family and friends to that place.

Mary Catherine: Right. I know. I understand.

Greg: Do you still love me, dear?

Mary Catherine: Yes, I do, dear.

Greg: I love you, too.

Complete Article HERE!