Globe and Mail Urges Early EOL Conversation

“Hassan Rasouli is at the centre of an ethical debate about who decides to withdraw life support when medical treatment is deemed futile. But it would be far better if hospitals devised a policy to make sure these questions are raised, long before patients reach such a tragic predicament.”

Read more from today's Globe and Mail editorial here.

View a new CBC report here.

When CPR Doesn't Serve a Patient's Best Interests

“What tormented Ivan Ilych most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need keep quiet and undergo a treatment and then something very good would result.”

-- From “The Death of Ivan Ilych," by Leo Tolstoy

Tolstoy prescribed torment for Ivan Ilych in a time long before cardiopulmonary resuscitation and do-not-resuscitate orders. And yet, in “the deception, the lie, which for some reason they all accepted,” Tolstoy could have been writing about a contemporary debate in medicine.

“Something very good” seldom results from CPR on a dying patient. What results more typically is a desperate and pointless act of violence, the very opposite of the “good death” we so commonly wish for. 

The Community Ethics Committee studied the issue in its “Report on Withholding Non-Therapeutic CPR”, and the same questions are at the heart of a “viewpoint” in the March Journal of the American Medical Association, “Time to Revise the Approach to Determining Cardiopulmonary Resuscitation Status.” 

There is no question mark at the end of the headline. No, this is a statement of opinion -- that CPR should no longer the default option for dying patients -- from the authors, physicians Craig Blinderman of Columbia University Medical Center and Eric Krakauer of Massachusetts General Hospital, and social scientist/bioethicist Mildred Solomon, president-elect of the Hastings Center.

“Whenever there is a reasonable chance that the benefits of CPR might outweigh its harms, CPR should be the default option,” the authors write. “However, in imminently dying patients, a default status of full resuscitation is not justifiable. Not only is CPR in this situation likely to harm patients without compensatory benefit, the default framework likely influences patients and surrogates to request that full resuscitation is attempted even when the physician believes doing so may be inappropriate.”

When the patient’s surrogates disagree with the medical opinion, the decision whether to withhold CPR pits the value of autonomy against nonmaleficence, or “do no harm.” Is such a case, the authors argue, the patient’s best interests are to be protected from interventions that will provide no therapeutic benefit -- and the patient allowed to die. “While promotion of patient autonomy is a fundamental responsibility of physicians, protecting the patient from harm becomes increasingly important as the patient becomes more vulnerable,” they write. “Sometimes, it should be preeminent.”

How did we get to a place where physicians, against their best judgment, are made to inflict harm on a dying person? In a piece reacting to the JAMA story, Neurology Today provided a useful and concise history.

“When (CPR) was developed 50 years ago, its successes in saving the lives of previously healthy patients who suffered cardiac arrest led to it rapidly becoming standard emergency therapy that would always be performed in the event of cardiac arrest,” physician James L. Bernat writes. “Within a decade, however, it became clear that CPR was unsuccessful in nearly all patients dying of chronic diseases, and produced a futile, unnecessary, and violent final end to their lives. Accordingly, the DNR order was devised to prevent the requirement to attempt CPR in those futile circumstances for which it had been neither developed nor intended.”

By now, upon admission, most hospitals require physicians to record whether the patient is a candidate for CPR or is DNR. And CPR has become the “default” treatment.

“CPR is an ‘opt-out’ phenomenon unlike nearly all other therapies which are ‘opt-in,’” Bernat writes. “This difference has led to ambivalence and uncertainty about the role of the physician in writing DNR orders.”

It may be useful to compare the practice to another therapy -- surgery.

“Surgeons DO NOT offer to perform surgeries on patients which have a survival rate of less than 2 percent,” says Dr. Monica Williams-Murphy, an Alabama emergency physician and co-author of “It’s OK to Die.” “Yet, we offer Advanced Cardiac Life Support procedures to people who have these same projected outcomes. There is a big disconnect!”

According to the Community Ethics Committee report, the decision to withhold non-therapeutic CPR “must be made in the context of the patient’s overall goals of care, supported by physiological criteria, and only when the patient and their surrogate and/or family are informed of the rationale for that decision as soon as practicable.”

And if the family does not agree?

“The CEC concluded that withholding non-therapeutic CPR is supportable even when a patient and/or family disagrees with the health care team about the patient’s overall goals of care and demands CPR. That being said, the members of the Committee felt strongly that the withholding of non-therapeutic CPR can only be supported when policies and practices are in place to ensure that patients’ and their families’ interests are protected.”

But how to convince a public swayed by heroic CPR success stories from TV drama that, for a dying patient, CPR is more likely to ensure a bad death than a prolonged life?

“There are interesting data showing that the more informed the public is about exactly what CPR entails, the more likely they are to agree to a DNR order,” Bernat writes. “One study showed a dramatic decline in requests for CPR among elderly residents of a retirement community once they had simply viewed a video of an actual CPR.”

ER Doc's Book: "It's OK to Die"

It’s probably not a great marketing strategy to devote a book to a subject nobody wants to talk or hear about. But maybe the importance of the story might transcend the reluctance to engage. I hope that’s the case with “It’s OK to Die.”

Alabama Emergency Physician Monica Williams-Murphy and her husband and co-author, Kristian Murphy, clearly believe in the importance of their subject, and I’m impressed with their dedication and their vision. It deserves to find an audience with physicians and the general public alike. 

“From a strictly scientific-materialist perspective, we are the first generation of any species to keep our weakest, oldest, and actively-dying members alive by artificial means for extended periods of time,” Dr. Murphy writes. “It is estimated that 25 billion dollars a year is spent on people who ‘live’ on ventilators.”

When a person can no longer speak or comprehend, loved ones face decisions they’re hard-pressed to understand, let alone make wisely and compassionately. A dying patient’s best interests regularly fall victim to the quandary. “It’s OK to Die” is a user’s guide to end-of-life decision-making, told compellingly and accessibly while underscoring the importance for families of not putting off these conversations. “It’s OK to Die” shares real scenarios as it walks readers toward making smart choices for themselves, and putting those choices in writing. 

“We have reached an historical era in which most modern American have become strangers to death,” the authors write. “Except for the elderly themselves, the rest of us are one or two generations removed from experiencing death as part of life.”

Even someone as clear and purposeful as Dr. Murphy waited nearly too long. She didn’t have the conversation with her own beloved grandmother until the latter was in the process of dying. The conversation between the two of them, and with Dr. Murphy and her extended family, is moving and revealing of the importance of such a dialogue to both the living and the dying.

Dr. Murphy and her husband also write of making choices without knowing their loved one’s wishes -- and living with the regrets of decisions made in fear.

“Loving someone does not obligate you to use every medical intervention available to prolong his life,” Dr. Murphy writes. “In fact, deeply caring for someone can mean that you should help to make him comfortable -- and let him go.”

“It’s OK to Die” is a straightforward look at the normal dying process. It is for doctors who struggle to tell the patient, You’re dying, and for patients and families who don’t want to hear it. 

As an Emergency physician -- not a palliative care or hospice doctor -- Dr. Murphy offers a unique insight into end-of-life care. Emergency physicians invariably are tasked with making urgent decisions with very little information -- and quite possibly no history whatsoever with a patient. In such circumstances, regrettable decisions are made -- seldom with the result of a “good death.”

“So, let me ask you,” Dr. Murphy writes. “Why would a 90-year-old woman with bedsores, who cannot feed herself, who can’t walk, and is chronically confused, be transferred to my emergency department for me to save her life, if she should suddenly become even more ill? For the record, this happens all the time.”

Kristian Murphy and his wife are children, grandchildren, and parents. In their own lives, they’ve experienced good and bad decision-making at end of life. Their insights are personal, and their recommendations hold promise for our dysfunctional healthcare system.

Dr. Murphy is a strong proponent of good palliative care, advance directives (especially the systemically accessible POLST or, in Massachusetts, MOLST forms), and the Personal Self-Assessment Scale, a tool for physicians to help patients “(make) medical decisions in advance based on objective markets of quality of life.”

Quality of life is such a loaded phrase, and the meaning or perception changes greatly depending who uses it. So ideally, answering questions about quality of life are best left to the individual patient. 

And yet, patient choice can itself result in harm both to patient or the care team. So perhaps another appropriate market for this book is state politicians, especially the legislators and governors in Idaho and Oklahoma who put the force of law behind provision of bad end-of-life care.

If they’ll listen to any voice of reason, maybe it’s that of an Alabama ER doctor, who just might stand a chance of convincing people there’s not a death panel lurking behind every end-of-life conversation. (In one vignette, Dr. Murphy treats a dying man whose wife insists that “hospice kills you.”) 

The subject may be one that nobody wants to talk about, but the book is one everyone with a pulse should read, while they can.  

A Dignified End, or a Suicide?

I’ve surprised friends recently with the news that, at the same time they vote for president in November, they’ll also be asked to decide whether Massachusetts should adopt the Death With Dignity Initiative, and make it legal for physicians in the state to prescribe a lethal dose of medicine to terminally ill patients who have asked for it.

Their surprised reaction has in turn surprised me. I would have thought the initiative would be well known by now. Perhaps this is another indication that voters don’t really engage the issues or candidates till much closer to Election Day.

But perhaps it’s also an indication of what is unique about the Community Ethics Committee -- that we discuss and consider important questions that many people don’t even want to think about, especially as relates to medical care at the end of life.

Soon enough, all Massachusetts voters will need to think about the initiative, and how they decide will no doubt be reflected in what they choose to call it: Death With Dignity or Physician Assisted Suicide. Proponents of the initiative say using such an emotionally charged and judgmental term as suicide is misleading and does a disservice to the terminally ill patients who will benefit from the practice. Opponents say suicide is the clearest way to describe ending one’s life, and to do otherwise is euphemistic.

Massachusetts is hardly the first to engage these questions. Political efforts are underway to legalize euthanasia in Quebec and British Columbia. DWD/PAS is now legal in both Oregon and Washington state, by decision of voters.

As the Community Ethics Committee has studied and discussed DWD/PAS, and I’ve tried to sort out for myself whether Massachusetts would be wise to legalize it, two resources have risen to the top in helping me to decide. Each is fairly lopsided in its viewpoint. But each is also very well informed, with varied voices speaking directly to the essential questions.

“How to Die in Oregon.” a Sundance award-winning 2011 documentary film, clearly portrays the need for such a law, as perceived by DWD/PAS proponents. It is hard to watch but very real, compelling, and makes a convincing case for the compassion behind this movement. (Available here, but copies also are available within the Minuteman Library Network)

Less clear is whether that compassion is sufficient to overcome the harm feared by opponents when society gives physicians the moral, ethical and legal sanction to participate in killing. 

That side of the argument is well represented on the CBC Radio program “The Enright Files,” which devoted an hour to the subject. In it, host Michael Enright revisits conversations he has had with Balfour Mount, described as the founder and creator of term palliative care. Those conversations are followed by a panel of doctors, nurses, ethicists and advocates discussing what is meant by a good death and the right to die.

By the time Massachusetts voters really engage the subject, there is bound to be a lot of heat and not so much light from the two sides. Voters might do no better than these two resources for shedding light and making sense of the debate.

And those who take the time to watch and listen to both may be struck, as I was, by the similarity between two central characters: Cody Curtis, a patient who benefitted from Oregon’s DWD/PAS law, and Balfour Mount, who might question whether benefit is the right word. Each is extremely thoughtful and compassionate.

And listening to them requires patience. Each speaks at times in sentences and phrases interrupted by the gasps for breath that cancer causes without regard for what side you’re on.

Start the Conversation Now

One recent evening in the Martin Luther King Jr. Room at Brookline High School, a cardiologist was in the middle of a presentation on “Communication and Care at the End of Life,” when he was asked when a family ought to begin discussing the challenging subject.

“In high school,” he said. “Before college.”

There was laughter in a room filled mostly with senior citizens. The cardiologist smiled, too. But it wasn’t a joke.

In fact, he said, high school students are of an age to comprehend the inevitability of death, and waiting till they’ve left for college is to miss an opportunity that may not come again.

Few hearing the advice were of an age likely to have children in high school. Grandchildren, perhaps. And so for them, the advice for when to begin the conversation would be: Now.

“These discussions take time,” said Dr. Wilfred Mamuya, of the Lown Cardiovascular Center, “and multiple meetings. It has to percolate. And if the person is not ready, they’re not ready. You just have to bring it up and bring it up and bring it up again.”

Why be so persistent with a conversation that nobody seems to want to have? Because so many people who say they want a “good death” and to die at home, die instead hooked up to ventilators and feeding tubes in an ICU, while families and physicians sort out best interests and difficult choices for a person who can no longer speak for him or herself.

In the speech, a presentation of the Brookline Community Aging Network, Dr. Mamuya told of the “communication triad: patient, family, and caregivers” central to the end-of-life conversation. (You can read Dr. Mamuya’s recent column on end-of-life care here.) 

Although a few in attendance were under the age of 60, and there were one or two couples, mostly the listeners consisted of elderly women. And a significant piece of the triad was missing: the family members who will face the hard decisions, perhaps without a real sense of what their parent would have wanted.

Dr. Mamuya spoke of the problems inherent in a family’s earnest desire to “do everything” to prolong a life, when “doing everything” so often runs counter to the goal of a “good death.” He discussed advance directives, and specifically the Five Wishes, and the importance of putting such wishes into writing, and updating them every five years.

I left the presentation much as I’d arrived, concerned that physicians, as a rule, aren’t especially adept at the end-of-life conversation, and that the likes of Dr. Mamuya are exceptions to the rule.

But I also left more convinced that while the conversation with a physician is important, the place to really improve the likelihood of a “good death” is in ongoing conversation among family.

Starting in high school. Or, if it’s too late for that, starting now.

Is God Welcome on Rounds?

In coming to know values and best interests, physicians need to have a sense of a patient’s religious faith. Indeed, not knowing can complicate care decisions. But is there benefit to a patient knowing a physician’s religious beliefs? Or is such knowledge unhelpful and even burdensome?

The Chicago Tribune sheds light on the questions with an insightful look at the Program on Medicine and Religion at the University of Chicago.

Richard Sloan, professor of behavioral medicine at Columbia University and author of "Blind Faith: The Unholy Alliance of Religion and Medicine," says “there’s too much at risk” to bring the physician’s religion into the relationship with the patient. "No matter how smart patients are, they're still subordinate in a relationship with a physician," Sloan says.

And yet for some physicians, religious faith can’t help but inform care provided. “What's not straightforward is how you help people maintain happiness when they're hit with a devastating illness," says Dr. Alex Lickerman, a practicing Buddhist and physician at the University of Chicago. "It's more real and more satisfying as I've continued in my Buddhist practice. My interest in really helping people not just with their physical symptoms has really expanded. My desire has redefined itself."

When Resuscitation Is Obligatory

From Thaddeus Pope’s blog: 

"Dr. Monica Williams-Murphy vividly recalls performing emergency chest compressions on a 100-year-old nursing home patient with advanced dementia.  Lacking a Do Not Resuscitate order, Williams-Murphy was obligated to do all she could to try to save a woman that she knew was beyond saving. 'I wasn't going to bring her back to something better.' That experience got the Huntsville, Alabama Hospital emergency department physician thinking about why frail elderly people often get the 'full-court medical press' at the end, rather than being allowed to slip away peacefully. The result is 'It's OK to Die,' a new self-published book that she hopes spurs readers to have those difficult but important conversations about end-of-life decisions."

data from Switzerland and Oregon, and Quebec's proposed legislation

Data now released from Switzerland on numbers of assisted suicides (supplementing the earlier mention below):  http://www.swissinfo.ch/eng/swiss_news/First_data_on_assisted_suicide_published.html?cid=32370072

From Oregon, statistics are available for 2011:   http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year14.pdf   and criticism from opponents: http://www.bioedge.org/index.php/bioethics/bioethics_article/10000 .

In Quebec, the question shifts from DWD/PAS to assisting death as part of end-of-life palliative care
http://www.theglobeandmail.com/news/national/quebec-report-calls-for-euthanasia-legislation/article2377993/
CEC members have discussed many times the impact of use of language and terminology; the headlines might have sensationalized the topic by claiming "Quebec report calls for euthanasia legislation".   Euthanasia is often seen as death caused by others; DWD/PAS supporters would point out that the patient is initiating the action.  It is a difficult enough topic without bringing in loaded words, but the quotes do include euthanasia as the term used in the discussions.   Interestingly, local supporters of PAS (Living with Dignity) don't support the change in approach.