Study finds unwanted care near death

West Palm Beach, Fla. — Americans suffer needless discomfort and undergo unwanted and costly care as they die, in part because of a medical system ruled by “perverse incentives” for aggressive care and not enough conversation about what people want, according to a report released Wednesday.

palliativecareAlthough people repeatedly stress a desire to die at home, free from pain, the opposite often happens, the Institute of Medicine found in its “Dying in America” report. Most people do not document their wishes on end-of-life care and even those who do face a medical system poorly suited to give them the death they want, the authors found.

The result is breathing and feeding tubes, powerful drugs and other treatment that often fails to extend life and can make the final days more unpleasant. The report blamed a fee-for-service medical system in which “perverse incentives” exist for doctors and hospitals to choose the most aggressive care, inadequate training for those caring for the dying, and physicians who default to lifesaving treatment because they worry about liability.

Recommendations of the institute, a private nonprofit arm of the National Academy of Sciences, often make their way into U.S. laws and federal agency policies.

“It’s not an intentional thing. It’s a systemic problem,” said David Walker, the former U.S. comptroller general, who co-chaired the committee of 21 experts that issued the 500-page report.Palliative-Care

Advance directives including living wills have been unpopular and ineffective, the report says. It urges repeated conversations about patients’ wishes beginning far earlier than many would think — perhaps as teenagers — and continuing the talks throughout life.

“The fee-for-service model, the lack of coordination between medical and social services, the challenges that individuals face in finding a provider who’s willing and knowledgeable to speak with them about death and dying all conspire against them coming up with the right individual plan,” said Philip Pizzo, a doctor who was co-chair with Walker.

Pizzo wrote: “Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background. It is our hope that this report will lead to improvements in end-of-life care and the experience of dying for all.”

Palliative care praised

The report praised programs in palliative care, which focuses on treating pain, minimizing side effects, coordinating care among doctors and ensuring that concerns of patients and their families are addressed. This type of care has expanded rapidly in the past several decades and is now found in a majority of U.S. hospitals, but the report says many physicians have no training in it.

Palliative-Care2“This report is relevant to persons who are seriously ill, their parents, children, extended families which essentially means every American,” said VJ Periyakoil, director of Palliative Care Education and Training at Stanford University’s School of Medicine, who was not involved in the report.

In many ways, the report is a repudiation of the controversy created by the term “death panel” in response to President Barack Obama’s health care law. The claim centered on the government saving money by deciding who would live and who would die. The controversial proposal never found its way into the law, the 2010 Affordable Care Act.

In fact, the report says the very type of end-of-life care Americans say they want would shrink medical bills and reduce the governmental burden.

“They will have a higher quality of life, and it’s very likely to be less expensive,” said Rep. Earl Blumenauer (D-Ore.), a frequent voice on end-of-life issues who reviewed the report. “But the main key here is that we should be giving people what they want.”

Blumenauer has sponsored a bill to allow Medicare to pay doctors for having end-of-life conversations with patients. That is the very idea that set off the “death panel” fury, which generated the most widespread and high-profile conversations on end-of-life care in the United States since the case of Terri Schiavo, a brain-damaged Florida woman who became the center of a protracted court fight over having her feeding tube removed.

Complete Article HERE!

End-of-life care: balancing money, time and quality of life

During elementary school, we bought a hamster, Nibbles. At two years old, she developed swelling in her abdomen. Most hamsters only live a year or two, so Nibbles had reached a ripe old age. Instead of letting her expire and watch the inevitable circle of life continue, my family took her to the vet to get her stomach drained. The procedures, costs and time spent were irrelevant because she died shortly after. While this may seem like a trivial story about a young boy unwilling to part with his first pet, there are broader lessons for our spending on end-of-life health care. I’m not comparing the value of a hamster life to a human one, but the basic principles and approaches to care are similar.circle-of-life

According to a 2013 article from the Medicare News Group, the Center for Medicare and Medicaid Services reported that 25 percent of the 2010 annual Medicare spending went towards the 5 percent of Medicare beneficiaries that died that year. There are two staggering points embedded in this fact. First, a quarter of the budget went towards 5 percent of the beneficiaries, and second is that Medicare spent $131 billion ($524 billion annual budget) in 2010 on people that never saw 2011.

One of the biggest barriers to fixing our skyrocketing end-of-life spending is our society’s profound discomfort with death. At its root, it’s a cultural problem—young people don’t understand death. We learn from a young age to resist the concept of death, and parents propagate this by shielding their children from the inevitable. And yet, the reality is that one day everything dies. In Atul Gawande’s 2010 New Yorker article “Letting Go,” the author writes that “modern medicine is good at staving off death with aggressive interventions–and bad at knowing when to focus, instead, on improving the days that terminal patients have left.” When we have the tools to prolong life, it’s hard to resist the temptation. How can we expect patients and families to make decisions that fly in the face of their gut instincts–to extend the life of themselves or their loved one? How can we expect doctors to make decisions that go against their training? As Siddhartha Mukherjee wrote in his book, The Emperor of All Maladies: A Biography of Cancer, “In new and sanitized suburban towns, a young generation thus dreamed of cures – of a death-free, disease-free existence. Maybe we need to reevaluate our priorities. All too often these life-prolonging interventions sacrifice quality of life for the patient in the name of extending it.

EndOfLifeCareSOS024HIRESsmallOne way to incentivize different end-of-life treatment regimens involves changing how we pay for end-of-life care. In theory, we could limit spending by having payers deny coverage for aggressive procedures to people who are very old and very sick. However, that is clearly neither a legal option nor a moral one. Moreover, the onus of cost control does not fall on the payer. Instead, it should be the physician’s responsibility to steer patients to lower costs and more effective hospice and palliative care programs. Focus on the doctor-patient relationship—not the pharma-patient or hospital-patient relationship—has become paramount in the world of health care. It would be a waste not to use this connection for the best interests of the patient.

By some measures, it may seem like we’re already moving towards more utilization of hospice and palliative care. The CDC reported in 2011 that Medicare beneficiaries are dying at a later age—and less frequently in the hospital. Hospice-use at time of death for Medicare beneficiaries almost doubled between 2000 and 2009, from 21.6 percent to 42.2 percent. The transition to hospice is great because we know that an acute care hospital is the most expensive place to die. However, that’s not the whole story. The data in their report, published in the Journal of the American Medical Association, suggest that hospice care has largely become an “add-on” to acute care hospital stays, so there may be less effect on resource utilization than was previously imagined. In 2009, 40.3 percent of “late-hospice referrals” followed on the tails of an ICU stay, a measureable increase from 2000.

Another important consideration is length of hospice stay. Maximum cost-savings in hospices are achieved when patients stay at least seven weeks. However, the percentage of Medicare beneficiaries (who are also cancer patients) who stayed in hospice for less than or equal to three days increased from 7.6 percent to 12.7 percent from 2000-2009. Overall, the percentage of decedents with less than or equal to three day hospice stays increased from 4.6 percent to 7.6 percent. This change suggests that while more people may die in hospice, they don’t necessarily spend a lot of time there.hospice025

It is important to acknowledge the difficulty in addressing end-of-life care. After all, a major hurdle lies in identifying the last year of life. Unfortunately, the process for this determination starts after the patient dies. Researchers measure back 365 days to examine the care received in the last year of life. Physicians can give prognoses of “six months to live” or “two years to live,” but those are often incorrect. Regardless of how much data CMS collects on end-of-life spending, it remains hard to address the problem because there is no way to know that you’ve entered the last year until it’s over.

Unlike Colorado’s former governor Richard Lamm, I don’t believe that the elderly have a “duty to die and get out of the way.” I do believe that we as a society have two responsibilities: to ensure the most comfortable death possible for the elderly and their families, and to spend our health care dollars in ways that improve patient health. It just so happens that hospice and palliative care can achieve those complementary goals, whereas inpatient hospital stays tend to work in opposition of them both.

Coming back to our circle of life, I wonder how I would have reacted if the vet had told me Nibbles was dying and there was nothing I could do. I can’t imagine I would have reacted well. Reflecting on the experience over a decade later, I realize that we must first grapple with death as individuals and learn to take comfort in the inevitable. Only then can we collectively address end-of-life care to make it more efficient and more focused on providing comfort, rather than aggressive cures, as a patient approaches death.

Complete Article HERE!

Quebec passes landmark end-of-life-care bill

Act respecting end-of-life care, Bill 52, allows terminally ill patients to choose death

veronique-hivon-dying-with-dignityTerminally ill patients in Quebec now have the right to choose to die.

The non-partisan Bill 52, also known as an act respecting end-of-life care, passed Thursday afternoon in a free vote at the National Assembly in Quebec City.

‘Dying with dignity means dying with the least amount of suffering,’— Véronique Hivon, PQ member of the National Assembly

The bill passed 94-22. There were no abstentions.

“Sometimes when you are suffering in pain, one hour can feel like one week.… The protection of the vulnerable is reflected in every aspect of this bill,” said Parti Québécois member of the National Assembly Véronique Hivon, who drafted the bill when she was minister of social services under the former PQ government.

Bill 52 allows for and outlines under which conditions terminally ill Quebecers can request to receive medical aid in dying.

gaetan-barette-veronique-hivon

Health Minister Gaétan Barrette, right, stood with members of the National Assembly from the three other parties (including Véronique Hivon, who drafted the bill) in late May to affirm the cross-partisan support for Bill 52. (CBC)

The main indicator for requesting medical aid in dying is “an incurable disease, an incurable illness, which is causing unbearable suffering.”

“For me, dying with dignity means dying with the least amount of suffering … and respecting who that person always was during his or her whole life,” Hivon said in the National Assembly before the vote took place.

Her speech was followed by applause and a standing ovation.

Liberal Christine St-Pierre was one of the 22 who voted against Bill 52.

“I don’t believe it’s right to give [anyone] the power to kill somebody,” St-Pierre said.

This legislation is the first of its kind in Canada. Its passage comes at a time when the right to die is being heavily debated in the rest of the country.

The Parti Québécois tabled the bill nearly a year ago after years of work from both the PQ and the Liberal government that came before it.

A committee on dying with dignity was assembled during Jean Charest’stenure as Quebec premier to study the issue and produce a report.

Its massive report, filed in March 2012, provided the foundation for Bill 52.​

However, Liberal Leader Philippe Couillard refused to play ball with the PQ when the party tried to force the bill into passage right before calling an election. Bill 52 died on the order paper as a result.

During the 2014 Quebec election campaign, Couillard promised to reintroduce the bill as it was drafted at the earliest possible moment during the new parliamentary session.

He also got the support from all four parties to reintroduce the bill at the stage it had died, instead of starting from square one.

It was reintroduced in late May by the new Liberal government.

Liberal Health Minister Gaétan Barrette made that announcementwhile standing side by side with MNAs from the three other parties.

“Between the four of us, we think the bill will pass strongly,” Barrette said at the time.

Complete Article HERE!

Aid In Dying, Part 2

“If you expect heroics from the people who attend you, even if it doesn’t include hastening your death, you’d be well advised to treat your attendants as heroes. Mutual respect and consideration, honor and compassion should be the hallmarks of your relationship with them.”

 

(We pick up our discussion where we left off last time. Part 1 is HERE.)

One of the most predictable questions I get when I present on the topic of aid in dying is; how do I go about finding someone who will be willing to help me? And I always answer the same way; the only way to know is by asking.

AidinDyingphoto_mediumI suggest that anyone looking for help with their end of life choices begin by interviewing those they love, to see who may have psychological, emotional, or moral reservations about assisting them in this fashion. I suggest that you never ask anyone to violate his/her ethical code regardless of how much you need help.

Once you find the person(s) you are looking for, I suggest that you check in with this person regularly to see if their level of commitment remains high, and excuse anyone who may have developed the least reservation about helping you as the time approaches. I suggest that you keep the number of people involved to the smallest number possible. One or two people at the most is my recommendation. Confidentiality and coordination of effort is essential and a large group make that virtually impossible.

At this point in the presentation I share two stories of very different death scenes to make my point. I was invited to consult on both occasions.

Jeffery was dying of AIDS. He and Alex, his lover of nearly twenty years, were preparing for his imminent death. Jeffery had a fear that he was beginning to slide into dementia, which was his worst nightmare. He wanted to short-circuit this final indignity and wanted to know if I would help them plan a strategy for proactively ending his life. I told them that I would be happy to offer them whatever information I had.street drugs

On this first visit with them I tried to assess the situation; to get a feel for the level of commitment that each person was bringing to this endeavor. There was no doubt about it, Jeffery was actively dying, his doctor confirmed the dementia diagnosis, and so time was of the essence.

I asked, “Have you guys done your homework?”

“If you mean, have we squirreled away enough medications to do the trick, the answer is no. We never gave this eventuality a thought until recently and now there’s not enough time to do that.”

“Will your doctor assist you with a prescription for a lethal dose of, let’s say, a barbiturate?”

“Doubt it. We’ve never talked to her about this. I don’t even know where she stands on the issue.”

“Well, then, how were you going to make this happen?”

“We were thinking about using street drugs, you know, coke and heroin. I also have some oral morphine left over from a friend who died last year.”

the_end_life_by_liquifiedsoul-d3fuz2nThat’s it? That’s your plan? What if you mess up on the dosage or something else goes wrong? I’ve seen it happen. You could be in worse shape than you are now and still be alive. Do you have a Plan B?”

Jeffery responded; “Alex and I talked about it some and Alex promised that he wouldn’t let me suffer.”

“But what does that mean? Alex, do you know what it is you are promising?”

The three of us talked for hours about their half-baked scheme. I tried to get them to see how implausible their plan was and how serious the consequences would be if there was a miscalculation. They would have none of it. Their love for each other and Alex’s blind commitment to Jeffery to preserve him from any more suffering was all there was to know. Alex would be as resourceful as necessary, even if it meant he had to suffocate Jeffery in the end.

Ten days later I was invited to their home again. I didn’t realize it at first, but earlier that day they had set their plan in motion. Alex had scored some cocaine, freebased it, and watched as Jeffery shot up. Both of these guys had had a long history with intravenous drug use so all of this was familiar territory. Unfortunately, Jeffery’s history with drug use complicated matters considerably. He had built up a tolerance to the drug and even though he was nothing more than skin and bones, the dose was not lethal. This is the situation as I found it. Jeffery was comatose and appeared near death, and Alex was at his wit’s end.

“He’s been like that for hours. I thought for sure he’d be dead by now. I think we’ve screwed up. What am I gonna do now?”

“I’m afraid I can’t advise you. I can only help you weigh your options.”

As I saw it, Alex had two options. He could call the paramedics and have them try to revive Jeffery with all the trauma that would involve, or he could honor the commitment he made to Jeffery and complete the plan they rehearsed.

Then there was Earl and his wife Christina. Earl was in the final stages of lung cancer. He was a hard, difficult man, plagued angerby many personal demons. Even when he was well, people used to say that he was an acquired taste, and if you ask me, that was being generous. The sicker he got, the more difficult he became. He alienated just about everyone – his sons, his friends, even the people from hospice. No one could tolerate his fury. In the end there was only Christina.

Some weeks before he died, Earl demanded that Christina call me over for a visit. I wasn’t inclined to accept the summons because I hated to see how he treated her, but Christina sounded so defeated on the phone that I relented and made plans to stop by the following day. Nothing had changed in the eight months since my last visit. Despite being a mere shadow of his former self, Earl was as abusive as ever. How had Christina been able to stand it all this time, I wondered.

“I want to die! I want this to be over now. I can’t get decent care. All these fuckin’ doctors and nurses make me sick. They don’t know what they’re doing.”

“He doesn’t mean that, Richard,” Christina interjected. “He gets good care.”

“Pipe down! I’m doing the talking. What do you know about it anyway? She don’t know nothin’ about what it’s like for me. Listen, Richard, I want to die. I want to end it right now, but I need help. I’m sick of this.”

“What kind of help do you need?” I asked.

“I read Final Exit, you know. I know how to do it. I got all these pills I can take.” Earl pointed to the cache of pill bottles in the nightstand drawer. “But I don’t want any slip-ups. I need someone to help me with the plastic bag at the right time, and she won’t help me.” He nodded in the direction of his long-suffering wife.

keep-calm-and-do-your-homework-100It was true. Christina absolutely refused to help. When I asked her why, she could only sheepishly shrug her shoulders. There was clearly much more to this than what was on the surface.

Earl then turned his attention to me. “You got to help me. You’re the only one left.”

“Earl, I won’t and can’t. It’s not that your request is out of line. It’s because I’m a stranger here. In all the years that we’ve known each other, you’ve never once invited even the most casual of friendships to form between us. You’ve always kept me out. You can’t ask me to overlook that now. You’re asking me to participate in one of the most intimate experiences two people can have in life and, I’m afraid, there just isn’t any foundation for that here. I’m sorry.”

“You’re a fuckin’ coward, just like everybody else. So you can just get the hell out and leave me alone. Damn you all!”

I hated to leave Christina alone with him, but I did as he demanded. Christina showed me to the door.

“Why won’t you help him?” I asked, when she and I were alone. “It would be the end of your misery.”

“That’s exactly why I won’t. After all these years, I couldn’t be sure whether helping him die would be an act of compassion, which would end his suffering, or an act of violence, which would end mine.”

These two scenarios provide a blueprint of what not to do if you are seriously considering having someone assist you to die. If you expect heroics from the people who attend you, even if it doesn’t include hastening your death, you’d be well advised to treat your attendants as heroes. Mutual respect and consideration, honor and compassion should be the hallmarks of your relationship with them.

You also have to have a well-thought out plan. And a “Plan B.” There’s no substitute for meticulous attention to detail. Who, what, when, where, and how. Do your homework!

A ‘Code Death’ for Dying Patients

By JESSICA NUTIK ZITTER, M.D.

Sadly, but with conviction, I recently removed breathing tubes from three patients in intensive care.

As an I.C.U. doctor, I am trained to save lives. Yet the reality is that some of my patients are beyond saving. And while I can use the tricks of my trade to keep their bodies going, many will never return to a quality of life that they, or anyone else, would be willing to accept.

Code DeathI was trained to use highly sophisticated tools to rescue those even beyond the brink of death. But I was never trained how to unhook these tools. I never learned how to help my patients die. I committed the protocols of lifesaving to memory and get recertified every two years to handle a Code Blue, which alerts us to the need for immediate resuscitation. Yet a Code Blue is rarely successful. Very few patients ever leave the hospital afterward. Those that do rarely wake up again.

It has become clear to me in my years on this job that we need a Code Death.

Until the early 20th century, death was as natural a part of life as birth. It was expected, accepted and filled with ritual. No surprises, no denial, no panic. When its time came, the steps unfolded in a familiar pattern, everyone playing his part. The patients were kept clean and as comfortable as possible until they drew their last breath.

But in this age of technological wizardry, doctors have been taught that they must do everything possible to stave off death. We refuse to wait passively for a last breath, and instead pump air into dying bodies in our own ritual of life-prolongation. Like a midwife slapping life into a newborn baby, doctors now try to punch death out of a dying patient. There is neither acknowledgement of nor preparation for this vital existential moment, which arrives, often unexpected, always unaccepted, in a flurry of panicked activity and distress.

We physicians need to relearn the ancient art of dying. When planned for, death can be a peaceful, even transcendent experience. Just as a midwife devises a birth plan with her patient, one that prepares for the best and accommodates the worst, so we doctors must learn at least something about midwifing death.

For the modern doctor immersed in a culture of default lifesaving, there are two key elements to this skill. The first is acknowledgment that it is time to shift the course of care. The second is primarily technical.

For my three patients on breathing machines, I told their families the sad truth: their loved one had begun to die. There was the usual disbelief. “Can’t you do a surgery to fix it?” they asked. “Haven’t you seen a case like this where there was a miracle?”

I explained that at this point, the brains of their loved ones were so damaged that they would most likely never talk again, never eat again, never again hug or even recognize their families. I described how, if we continued breathing for them, they would almost definitely be dependent on others to wash, bathe and feed them, how their bodies would develop infection after infection, succumbing eventually while still on life support.

I have yet to meet a family that would choose this existence for their loved one. And so, in each case, the decision was made to take out the tubes.

Now comes the technical part. For each of the three dying patients, I prepped my team for a Code Death. I assigned the resident to manage the airway, and the intern to administer whatever medications might be needed to treat shortness of breath. The medical student collected chairs and Kleenex for the family.

I assigned myself the families. Like a Lamaze coach, I explained what death would look like, preparing them for any possible twist or turn of physiology, any potential movements or sounds from the patient, so that there would be no surprises.

Families were asked to wait outside the room while we prepared to remove the breathing tubes. The nurses cleaned the patients’ faces with warm, wet cloths, removing the I.C.U. soot of the previous days. The patients’ hair was smoothed back, their gowns tucked beneath the sheets, and catheters stowed neatly out of sight.

Then, the respiratory therapist cut the ties that secured the breathing tube around the patients’ neck. As soon as the tubes were removed and airways suctioned, families were invited back into the room. The chairs had been pulled up next to the bed for them and we fell back into an inconspicuous outer circle to provide whatever medical support might be needed.

I stood in the back of the room, using hand motions and quietly mouthing one-word instructions to my team as the scene unfolded — another shot of morphine when breathing worsened, a quick insertion of the suction catheter to clear secretions. We worked like the well-oiled machine of any Code Blue team.

Of those three Code Death patients, one died in the I.C.U. within an hour of the breathing tube’s removal. Another lived for several more days in the hospital, symptoms under watch and carefully managed. The third went home on hospice care and died there peacefully the next week, surrounded by family and friends.

I would argue that a well-run Code Death is no less important than a Code Blue. It should become a protocol, aggressive and efficient. We need to teach it, practice it, and certify doctors every two years for it. Because helping patients die takes as much technique and expertise as saving lives.

Complete Article HERE!

Aid In Dying, Part 1

“I asked my audience to keep that in mind that it’s this social dimension of the dying process that gives us the best context for understanding this delicate issue. I suggested that if we kept our discussion as open-ended as possible we wouldn’t be tempted to reduce the whole affair to the single issue of assisted suicide, because that does nothing but polarize the debate.”

There was a wonderful front-page article in the February 2, 2014 edition of the New York Times titled: ‘Aid in Dying’ Movement Takes Hold in Some States. The most astonishing about the article was that, not too long ago, this sort of even-handed presentation in “the paper of record” would have been unthinkable. I’m so glad this is changing. Because, despite where you stand on the issue, no one benefits from tamping down the discussion.AidinDyingphoto_medium

I talk about assisted dying frequently. Despite being the hot button issue it is, there’s a remarkable amount of common ground amongst the varying positions if one looks for it.

I was conducting a workshop on this very topic recently and before I could really get started, a man stood up and declared: “I need to say upfront that I am diametrically opposed to assisted suicide of any kind, including physician assistance. There’s just too much room for abuse. I can’t help but think about how things would be if we started eliminating the people we think are no longer productive. You could be sure that old and disabled people would be the first to get the ax. I’m afraid the tide of this culture’s prejudice against age and infirmity would overwhelm them. It is such a slippery slope that I don’t think we ought to venture out onto it.”

Not five minutes into the workshop and I already knew it was gonna be a bumpy ride. I asked the fellow for his indulgence and asked him to allow me to continue.

death midwifeI began by saying: “It’s my experience that very few people prefer to die alone. Most dying people express a desire to have company in their dying days. And given the option, most everyone would prefer the company of friends and family to that of strangers. Very few of us have the personal strength to walk this unfamiliar territory alone. We’re social beings, after all, and there’s nothing about dying that changes that.”

I asked my audience to keep in mind that it’s this social dimension of the dying process that gives us the best context for understanding this delicate issue. I suggested that if we kept our discussion as open-ended as possible we wouldn’t be tempted to reduce the whole affair to the single issue of assisted suicide, because that does nothing but polarize the debate.

I turned to address the man who stood up at the beginning of the workshop. “I thought it curious, sir, that you took the time to assert that you are opposed to assisted suicide of any kind, including physician assisted suicide. Is that all you thought we were going talk about?”

“Well, yes, that’s exactly what I thought. Isn’t that what assisted dying means?”

“Not the way I understand it.” I said. “It’s true, acting to hasten death in the final stages of a terminal illness falls under the general heading of assisted dying, but I don’t think it defines the concept. In fact, I believe that reducing the concept of assisted dying to a single issue would be a mistake for two reasons. First and foremost, it discounts all the other more common modes of assistance regularly being given to dying people across the board. And second, this more extraordinary form of assistance is relatively uncommon. So you can see why I’m so adamant about keeping the discussion inclusive and open ended. It just wouldn’t be balanced otherwise. I believe that the issue of proactive dying can become sensationalized, distorted, and even freakish if this option is not presented as an integral part of the entire spectrum of end of life care.”assisted_dying

I think a good metaphor for what I was talking about is the midwife. Like a birth midwife, a death midwife assists and attends in a myriad of ways. A midwife is the one who is most present and available to the dying person, the one who listens, comforts, and consoles. But a midwife may also bring an array of other basic skills, like expertise in the care of the body such as bathing, waste control, adjusting the person’s position in bed, changing bedclothes, mopping the person’s brow, or keeping the person’s eyes and mouth lubricated. A midwife may also be proficient in holistic pain management and comfort care such as massage, breath work, visualization, aromatherapy, relaxation, and meditation.

A midwife may take responsibility for maintaining a tranquil and pleasing dying environment. Often this means arranging the person’s home or room, not only in terms of the practical considerations, but also in terms of the aesthetic as well. This may include arranging flowers and art, reading aloud or playing music softly. A death midwife, like a birth midwife takes the lead role in the caring for and comforting the one who is dying. Without this kind of compassionate presence, few people would have the opportunity to achieve a good death.

Another guy spoke up: “That’s all fine and good, but I was hoping that we were going to talk about, you know, the more proactive aspects of assisted dying. I mean, I know I’m gonna want help in bringing my life to a close when the time comes and no amount of breathing exercises and adjusting pillows is gonna cut it. Am I making myself clear?”

“I understand what you are saying. You want some practical advice on how to end your life if the need arises.” I responded. “I can assure you that we well get to that. I just wanted to make sure that we all appreciate the context of our discussion.”

physician aid in dyingAn elder woman in the first row raised her hand. “I’m glad that you’re taking the time to help us frame the debate in this way because I’m confused. I have the same reservations as the first gentleman who spoke, but now I’m not sure my concerns are warranted. Maybe I need more time to figure out what it is we’re talking about when you say, ‘proactive dying.’ Is it euthanasia, assisted suicide, self-deliverance, what? And why so many different terms?”

“You make a very good point, ma’am. Unfortunately, there is no agreement, even among experts, about a common vocabulary for this debate. And thus the public discourse often generates a whole lot more heat than light. And the topic of proactive dying will continue to be a hot-button issue until we can come to a consensus about the parameters of the debate, and that seems like a long way off.”

I went on to say that I have trouble with most all the terms commonly used in the debate. I consider euthanasia is much too technical. Curious enough, at one time this word meant an easy, good death. Now, unfortunately, it is defined as mercy killing, a classic example of how language can be corrupted.

I also try to avoid using the term “assisted suicide” when I talk about someone hastening his or her death in the final stages of a terminal illness. The word suicide is inappropriate in this instance, because suicide usually denotes a desperate cry for help, which is rarely if ever the case for those facing the imminent end of life.falling leaf

Finally, I don’t much like the term self-deliverance either. It’s just one of those vague, contemporary euphemisms that does nothing to clear the air. In fact, when polled, most people haven’t a clue what self-deliverance means. I prefer the simpler, more straightforward terms ‘proactive dying’ or ‘aid in dying.’

Another woman spoke up: “I’m having a hard time with this too. I mean, it’s all so confusing and there are so many subtleties to consider. I guess I’d have to say that I’m not particularly comfortable with the notion of assisted suicide or, as you call it, aid in dying. But I wonder if I’d feel differently if I were in unbearable pain. And taking someone off life support; isn’t that technically assisted dying? Where do we draw the line between what is acceptable and what isn’t? And who is going to make that determination?”

I responded: “The simple answer is that doctors and lawyers are generally the ones who make the call. That is unless individuals are granted the right to choose. But even then, medical and legal concerns can and do trump a person’s wishes.”

(We will take up this topic again next time. I’ll discuss how best to approach one’s physician about aid in dying among other things.)