The Journalist, the Mom & the Decision

I have to read more by Charles Ornstein. Here’s a health journalist who “gets it” on many levels -- including the deeply personal.

In “How Mom’s Death Changed My Thinking About End-of-Life Care,” he recounts for ProPublica.org the ramifications of his family’s decision-making about his mother’s life support. 

A few insights and highlights:

• “In all my reporting, I'd never realized how little the costs to the broader health-care system matter to the family of a patient.”

• “You can know somebody's wishes and still be confused about the appropriate thing to do.”

• When a doctor says, “We have plenty of money in the U.S. health-care system to make sure that we're supporting families in coming to a decision that they can all feel good about. I feel very strongly about that,” he leaves Ornstein to question: “Plenty of money? How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren't known and cases where doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.”

Read the full story here.

Does Care Continue When Treatment Ends?

“Examined Lives: Withdrawing care in the ICU” is a powerful and highly recommended essay with valuable insight about the point at which it becomes clear to the medical care team that a patient is beyond therapeutic or curative efforts.

That it comes from an intensive care nurse makes it that much more valuable, as the ICU nurse is most closely connected to the patient in the bed, and perhaps understands better than anyone, even the physician, the patient’s status is in the transition from life to death.

And yet a word choice by the author, used in the headline and throughout the piece, somewhat undercuts the message for me: “withdrawing care.”

“Intensive care is the place where we hold back death after an acute illness or injury, largely by breathing for patients with machines and by stabilizing their vital signs with a host of powerful drugs,” the nurse and author, Kristen McConnell, writes. “Some patients do well and recover, others can’t, and sometimes a patient’s family realizes that his health won’t meaningfully improve, or that he would not want to live in his condition, and decides to withdraw care. The first time I saw this was haunting.”

But isn’t treatment what is being withdrawn in such a case? Isn’t care the reason such treatment is being withdrawn? Doesn't care continue until the patient is gone, and even afterwards? Isn’t it care that allows a person to die in relative peace? 

McConnell herself seems to get this, as she writes of a dying patient: “The doctor put in orders to withdraw care and discontinue the medications, but I wanted to wait until the tube was actually out before stopping those, because I didn’t want him to die while he still had a plastic tube taped to his face and snaking down his throat, pushing air into his lungs.”

In this case, a tube -- a treatment -- was withdrawn, while care continued. 

This may seem the niggling point of a copy editor, and yet maybe understanding the difference between treatment and care, and not using them interchangeably, is what has earned palliative care specialists such a good reputation in end-of-life medical practice.

When Care of the Dying Descends into Conflict

This post is adapted from the Community Ethics Committee’s newly released report, “Medical Futility: Strategies for Dispute Resolution when Expectations and Limits of Treatment Collide.” 

In December 2012, before the Supreme Court of Canada, the attorney for a patient’s family refuted a medical assessment of futility with these simple words:  “The treatment is 100 percent effective. It permits him to breathe.”

If only it were that simple. Once-terminal diseases have become treatable and even curable, and the human brain sometimes surprises doctors. And yet, we still die. We say we don’t want to die hooked up to tubes and monitors in a hospital bed, but increasingly we do, in a state that the surgeon and author Atul Gawande named “warehoused oblivion.” 

Sometimes dying can be a time of great clarity and meaning, especially when all parties involved acknowledge that the process is taking place and is not reversible. But acknowledgment requires acceptance of something we cannot know with absolute certainty. For some religious, this is like faith itself: belief in something unknowable. Death is certain; dying is unpredictable.

For the better part of two years, the Community Ethics Committee has conducted a study of “medical futility” in end-of-life care, a destructive, shape-shifting reality of the modern Intensive Care Unit. There are myriad varieties of medical futility, but the one most troubling sometimes descends into dispute that finds physicians saying aggressive therapies and life-sustaining measures will only do harm, and loved ones saying do everything. In the middle of this is a patient who typically can no longer speak, or even comprehend, and can seem to no longer feel except during the therapies in dispute.

Perhaps no one is more aware of this than the modern ICU staff, who increasingly are asked to provide technological life support and otherwise “do everything” to unconscious and irreversibly dying patients at the request of family members who hope sometimes for divine intervention, sometimes for a miracle more scientifically based. The key word is hope. And hope, as Gawande has said, is not a treatment plan.

The Community Ethics Committee wishes there could be a simple formula with a clear biological and spiritual threshold, beyond which therapy and life-sustaining technologies would be abandoned while suffering would be compassionately treated and the dying process allowed to proceed naturally to a peaceful end. Unfortunately, there is no such formula or threshold. There are only individual patients and their families and caregivers - mortals all. 

But what do we as a society tell our physicians and nurses, the religious and non-religious alike, who are devoted to curing and caring for fellow humans, having committed themselves to doing no harm? How do we empower them to use their best judgment and to do the right thing? The determination to continue or stop treatment requires human judgment, flawed and error-prone as it is. Truly knowing the difference between hastening death and prolonging dying is impossible. And yet to whatever degree we can know this, it is important. It is vital in that word’s purest sense. Perhaps the best we can do is to treat each case individually and compassionately with a deep respect for a human life that transcends the denial of death.

In those cases when medical futility results in intractable dispute, these were areas of special concern to the CEC: the compromised integrity and burnout of the care team, nurses in particular; the importance of protecting the vulnerable, of allowing for disagreement, and putting the patient first; and making certain there is someone with an empowered voice among the care team who is considering the “whole” patient, and not just symptoms and vital statistics.

Among its recommendations, the CEC would like to see more medical institutions to develop strong palliative care, and not to wait until a patient is near death to make use of it. Care of patients at the end of life is immeasurably enhanced by the involvement of medical personnel trained in palliative care – both in their particular skill in conducting constructive dialogue with patients and families about end-of-life issues and in their expertise in pain management and in developing effective end-of-life care plans.

Palliative is a relatively new specialty in medicine but has proven especially capable of knowing the “whole” patient, compassionately and respectfully treating suffering, and ultimately allowing for the “good death” many of us say we want. But too often palliative care is systemically marginalized, and put off till “all hope is lost.” Palliative care needs to be brought into the mainstream of medical practice.

And even though palliative care is increasingly available in mid-size to large hospitals nationally, it is significantly less likely to be available at the public and other hospitals where 47 million Americans who are either uninsured or geographically isolated get their medical care. (See http://www.capc.org/)

Advance directives are an imperfect means of giving voice to patients’ wishes and values when they can no longer speak for themselves, but they are an important tool for physicians in serving the best interests of patients who often arrive as strangers in need, especially in the emergency room setting. The MOLST system deserves full backing in Massachusetts. It is the CEC’s belief and experience that the more individuals and society discuss complex end-of-life questions, the less often disputes over medical decisions will arise.

Finally, when in those few but wrenching cases where decision-making over care of the dying results in intractable conflict, there must be a means for society to resolve the dispute fairly, compassionately and expeditiously. In Massachusetts, the CEC believes the most promising means of making this happen would be as a new and uniquely crafted component of the state’s external review process for determining “medical necessity.” Such a dispute resolution process is needed not only for the sake of the medical care teams and for the families, but it is especially needed in serving the best interests of the patient.

To read the CEC’s full report, "Medical Futility: Strategies for Dispute Resolution when Expectations and Limits of Treatment Collide," go here.

Expert Ideas Without Implementation

Care of Americans in their finals months is getting significant and promising attention. 

On January 29 and 30, a summit of national leaders meet in Washington, D.C., as the Coalition to Transform Advanced Care. Less than a month later, the newly formed Committee on Transforming End-of-Life Care, meets in Washington for the first time.

What might be accomplished? And how soon?

The answer may be in Massachusetts, but it’s an answer in progress. 

“I am truly baffled,” Dr. Lachlan Forrow, director of ethics and palliative care programs at Beth Israel Deaconess Medical Center, told the Boston Globe. “We are making practical recommendations for everyone to be taken care of in the way he or she would want to be.”

Forrow chaired an expert panel that studied end-of-life care and recommended ways for the state to improve treatment of the dying. They produced an impressive document. It is now two years old. To date, what guidance it provided largely has gone the way of the Institute of Medicine’s forerunner to the new Committee on Transforming End-of-Life Care.

That committee produced the 1997 report “Approaching Death: Improving Care at the End of Life.” 

The Committee on Transforming End-of-Life Care begins with awareness both of that earlier committee’s good work and how it was largely ignored.“These issues are not new,” the IOM website notes 16 years later. “While the 1997 IOM Report made important and wide sweeping recommendations, progress in implementing them has been slow.”

Forrow’s interview was part of a Boston Globe story about dying in Massachusetts. “Precious final days for many Massachusetts residents are still not spent the way they would have chosen -- at home with loved ones -- but in a hospital,” reporter Kay Lazar wrote. 

The story offers a good analysis of why valuable information doesn’t get through to patients and their families (in part because dying is a difficult subject for some to discuss and others to hear), and presents ideas for improving that communication, including the use of video.

Recommendations in the report by Forrow’s expert panel deserve to be acted upon, including communication training for caregivers, and accountability for such training with the state.

Just as “Romneycare” in Massachusetts inspired “Obamacare” nationally, perhaps the Massachusetts expert panel can serve as a model for the experts gathering in Washington, DC over the next month.

Including, one would hope, implementation.

Transforming Care & Communication

Jennifer Mack and Thomas Smith give me hope. I like that in a physician.

That they pull it off in a piece with this in its title --  "Reasons Why Physicians Do Not Have Discussions About Poor Prognosis" --  might be a medical miracle.

Mack and Smith give me hope that oncologists can be as adept with good communication as they are at titrating chemo, and that maybe we're ready for a national conversation about how we die.

Conveniently enough, such a conversation begins with the Committee on Transforming End-of-Life Care when its members meet Feb. 20-21 in Washington, DC.  This Institute of Medicine committee is a follow-up to one that produced the 1997 report Approaching Death: Improving Care at the End of Life.

Mack is an oncologist at the Dana-Farber Cancer Institute. Smith is director of palliative care at Johns Hopkins. In the Journal of Clinical Oncology from August 2012, the authors attempt to debunk excuses for not having hard conversations.

To  "it will make people depressed," the authors say: "Incorrect. In fact, giving patients honest information may allow them and their caregivers to cope with illness better."

They proceed to address perhaps understandable but defeating physician thinking that:

• "involvement in hospice or palliative care will reduce survival"
• "we do not really know a patient's prognosis"
• "talking about prognosis is not culturally appropriate"
• "we do not like to have these discussions and they are hard on us"
• and why confronting these "excuses" matters  (in short, because it's in the patient's best interest)

The one that resonated with me was their answer to  "it will take away hope." 

"Incorrect," say Mack and Smith. "In fact, evidence suggests that hope is maintained even with truthful discussions that teach the patient there is no chance of cure. ... Hope was increased or at least preserved when parents of pediatric (cancer) patients were given prognostic information, even if the news was bad."

The Community Ethics Committee, the group behind this blog, is completing a report to the Harvard Ethics Leadership Group on the intractable disputes in end-of-life care that sometimes emerge between caregivers and patients/families when further curative or therapeutic treatment is seen as futile.

Distrust and loss of hope are central to such disputes, especially amid differing cultural and religious values. At such a time, communication skills are crucial.

Maybe what Mack and Smith are on to here is the idea that, even with bad news, not talking about it only makes it worse. And maybe what transforming end-of-life care requires is open and ongoing dialogue -- especially the difficult subjects. 

I know from experience that some physicians are amazing communicators -- great listeners, empathic carers, tolerant of my need for multiple explanations, and able to respect values that are not their own. Not all physicians have these skills. For them, a team approach to care, with nurses, ethicists and chaplains trained and empowered, is maybe the only way to ensure good communication and care for all patients.

Through the end of January, the Committee on Transforming End-of-Life care is taking feedback in preparation for its first meeting. One suggestion I've seen is from Dr. Christian Sinclair, who says the committee lacks geographic diversity and hospice and non-academic palliative representation. See pallimed.org

What are your priorities for transforming end-of-life care?

Teaching Empathy to Medical Students

Understanding Barriers to Palliative

This won’t be news to any Intensive Care physician. But as I try to better grasp what often segregates the palliative care speciality from patients who would benefit, a review at the online resource PulmCCM.org (“all the best in pulmonary & critical care”) was illuminating.

The PulmCCM.org piece is titled “Burnout syndrome among critical care healthcare workers.” It reviews a report in journal Chest, April 2012 edition, titled “How to bill for palliative care in the ICU ... legally.” 

Even the latter headline told me something I didn’t know: that bringing palliative into the ICU can require an artful dance. In fact, it’s one in a series of artful dances, some emotional, some financial, some medical.

“To an intensivist,” PulmCCM.org writes, “providing palliative care often means having multiple time-consuming and emotionally challenging interactions with families struggling to cope with the impending loss of their loved one. The emotional content of these interactions can be strongly positive, negative, or somewhere in between, but frequently it’s an intense and draining experience, possibly contributing to burnout among ICU physicians. So at least you should get paid for it, right?”

Burnout, whether among physicians or nurses in the ICU, is of special interest to me now as the the Community Ethics Committee nears completion of a study of the intractable disputes that arise when continued medical treatment is considered futile by the care team. Burnout and the stressors behind it, at least in part, are what made the CEC feel an obligation to study the issue.

The financial dance is over Medicare reimbursement. Chest reported: “Split or shared service performed by a physician and a qualified nonphysician provider of the same group practice is not reportable as a critical care service; only cumulative critical care time provided by physicians within a group is reported as such.” 

“In other words,” PulmCCM.org added, “midlevels cannot bill for palliative care services,” and “the above goes for residents’ work, as well, at teaching hospitals, where attendings must also document care well enough for it to justify billings independent of the resident’s note.”

Really understanding the bureaucratic complexity of all that is above my pay grade, as are all the codes and details of legitimately billing for palliative services. But with palliative increasingly seen as a perhaps uniquely capable of serving a patient’s best interests and values, financial disincentives for its use seem especially short-sighted and thoughtless.

But Medicare policy on ICU billing isn’t the only barrier to broadening palliative’s reach. A commentary at cancernetwork.com (“home of the journal Oncology”) describes both benefits that oncologists are seeing in palliative care, and barriers to collaboration.

One barrier is “the lack of a ‘standardized’ palliative intervention,” according to the authors.

But palliative’s benefits to patients are well appreciated.

“It is well accepted that palliative interventions derive much of their success from a fundamentally patient-centered, rather than illness-centered, approach to care,” the authors write. “With a patient-centered focus, the physical, psychological, spiritual, and social needs of patients, as well as the needs of their caregivers, are addressed.”

This points to the benefits of a comprehensive, team approach, which leads to the next barrier: no surprise, it involves money.

“The lack of financial and educational resources often limits the ability to provide such a comprehensive team. ... (And yet) attempting to integrate palliative care into oncology care is still a worthwhile endeavor even when resources are limited.”

To make palliative and oncology more collaborative, the authors say, it is “critical” to develop an integrated outpatient model. “By utilizing the same clinic space and hours, the potential for timely communication among palliative and oncology providers is greatly enhanced. Feasibility of integration is further enabled by eliminating the need for a separate palliative clinic location and personnel. Furthermore, convenience for patients is increased by providing complementary services under one roof, optimally during the same visit.”

The authors cite another benefit of such a palliative-oncology collaborative -- its potential to lessen the burden on the care team.

Right to Die: "No authentic picture of public opinion"

The moral/ethical tug-of-war between autonomous choice and respect for human life is being vigorously and divisively engaged. That’s hardly breaking news. But aspects of the life-versus-choice debate are playing out loudly on multiple fronts.

In the United Kingdom, the Liverpool Care Pathway for the Dying Patient, a hospice-inspired strategy for appropriate medical care, is getting the “death panel” treatment, portrayed in some media as callously hastening patient deaths for economic and other reasons. In Canada, the Supreme Court will rule this spring on the authority of medical carers to decide when to remove a patient from life support. And in Rome, in words directed in part to legislators in Ireland, where a woman recently died from pregnancy complications after being denied an abortion at a Galway hospital, the pope has noted “with dismay that, in various countries, even those of Christian tradition, efforts are being made to introduce or expand legislation which decriminalises abortion.”

In the shadow of these evolving stories, and just two months removed from the narrow decision by Massachusetts voters not to make it legal for a physician to write a lethal prescription for a terminally ill patient, I came upon an instructive new study in the journal Palliative Medicine. The title: “Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.”

This study, led by Maggie Hendry and Diana Pasterfield of the North Wales Centre for Primary Care Research, is an impressive effort to get a sense of the range of values regarding assisted dying, in the form of physician-assisted suicide, euthanasia, or “accompanied suicide,” as practiced in Switzerland by Dignitas.

Some form of assisted dying is legally practiced in four European countries (The Netherlands, Belgium and Luxembourg, in addition to Switzerland), and three US states (Oregon, Washington and Montana).

Some proponents of legalizing physician-assisted suicide elsewhere in the United States anticipated Massachusetts as a bellwether, and the last-minute swing in support provided an interesting look at the pliability of attitudes. Polls just weeks before the November vote showed the measure supported by a significant majority. Was the reversal to a narrow defeat on Election Day indicative of how soft support or opposition can be on a question that puts life and choice into conflict?

The study of “right to die” attitudes found four themes in reasoning for and against: "concerns about poor quality of life,” “desire for a good quality of death,” “concerns about abuse if assisted dying were legalised,” and “importance of individual stance related to assisted dying.”

On the last theme, the authors wrote, “Some felt that only God should decide time of death. Others believed such decisions are morally wrong and could be equated with murder or interpreted the desire to hasten death as a sign of moral weakness. Some people saw death as part of a natural process that should not be interfered with, whereas others argued assisted dying could be morally justified to relieve suffering.”

According to the study, “The heated exchange about legalisation or de-criminalisation shows no sign of diminishing. There is a dearth of high-quality, unbiased evidence about the collective views of people that such a change in law might affect, and no authentic picture of public opinion is available.”

The study underlines both the need for clear policy on assisted dying, and the challenge in achieving that. “Importantly," say the authors, "the dichotomy between the views of doctors and the general public needs to be urgently explored.”

Defining Palliative Care

Palliative care is not well understood, so perhaps this definition the World Health Organization has published will help. 

The WHO definition reads:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care:

• Provides relief from pain and other distressing symptoms.
• Affirms life and regards dying as a normal process.
• Intends neither to hasten or postpone death.
• Integrates the psychological and spiritual aspects of patient care.
• Offers a support system to help patients live as actively as possible until death.
• Offers a support system to help the family cope during the patients illness and in their own bereavement.
• Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated.
• Will enhance quality of life, and may also positively influence the course of illness.
• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
• Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family.

• The WHO site also features a definition specific to palliative for children.
• 
  

Knowing When (or Not) to Let Go

On the date and in the hospital where I was born 58 years ago, my friend was allowed to die. It’s what he had said he would want, it’s what the doctors said was occurring, and it’s what his family courageously and compassionately allowed.

My friend didn’t want the catastrophic stroke that had left his brain so badly and inaccessibly damaged. He didn’t want to die and leave his two daughters fatherless. But in the event of a catastrophic event, he didn’t want to exist unable to think, speak, or care for himself. And this was known because he had told another friend and a brother, who were able to communicate his wish when he was unable to, and in so doing helped others in my friend’s family to allow his passing, and not prolong it indefinitely and artificially.

I followed this story from the East Coast as it evolved in Southern California, and so I don’t have any real sense of the truth of decision-making after my friend’s sudden collapse and emergent bleak prognosis.

The timing was striking, not for the simple coincidence of his dying on my birthday, but because my work with Community Voices in Medical Ethics had me following the case of Hassan Rasouli in Ontario, Canada. 

Rasouli, 61, has been on life support since Fall 2010, and for much of that time he has been under the care of a medical team in dispute with his wife and adult children over whether to continue keeping him alive. (More here)

The medical team believes it should make the decision on whether to discontinue life support, even if the patient’s surrogates disagree, and is attempting to have a court establish that as legal fact. 

The day after my friend died, lawyers for both the medical team and the Rasouli family made their case before the Canadian Supreme Court, which will rule in a case with potential legal ramifications from the UK to the US. Cases concerning end-of-life medical care rarely make it this far in a legal system, because the patient rarely survives till the court date.

Which is a point the Rasoulis’ lawyer underlined with the Supreme Court in disputing that care is futile. “The treatment is 100 per cent effective,” the lawyer said. “It permits him to breathe.”

Lawyers for the hospital made this point: “The purpose of critical care medicine, including life-support measures, is to support the patient long enough to allow recovery from a reversible illness. Where, as in Mr. Rasouli’s case, there is no reversible illness from which he can or will recover, life-support serves no medical purpose.”

So who decides? In determining my friend’s fate, religion played a role in allowing him to be removed from mechanical life support. He was Roman Catholic, and as such would have considered human life sacred. The Rasoulis, devout Shia Muslim, no doubt would agree with that. And yet one man was removed from life support, the other remains on it. 

Community Voices, through its Community Ethics Committee, is just now concluding a lengthy study of medical futility, a phrase much simpler than all it is meant to imply. A determination of medical futility -- usually by the medical team, though sometimes by a terminal patient (who, for example, is ready to give up on chemo before the oncologist) -- usually results in agreement on revised goals of care. In the rare cases, though, there is not agreement. And then, who ought to decide?

This question is being asked all over the world, and is especially volatile now in the United Kingdom, where the hospice-inspired Liverpool Care Pathway for the Dying Patient is the focus of heavy scrutiny.

Given what I know of my friend’s death, what I’m learning about the Rasouli case and the controversy over the LCP, I found a blog written by Philip Berry to be illuminating. Berry is a writer and National Health Service consultant.

Berry wrote: “We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.”

Berry explores four questions in particular: Do doctors vary in their practice according to religiosity? Is such variety acceptable? If not, should doctors have to disclose their beliefs to patients? And, should doctors disclose their beliefs in public debate on end of life issues?

He cites a poll finding non-religious doctors “40 percent more likely to sedate than religious doctors” and religious doctors less likely to “discuss end-of-life treatment option with their patients.”

“Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised,” Berry writes. “Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation.”

Later, he adds: “If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy.”

Berry is a proponent of the LCP and more generally quality care for the dying. He is also an atheist, which doesn’t stop him either from noting that “Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity” or crediting the palliative movement’s role in making “the UK's reputation for the care of dying patients ... unsurpassed.”

As Community Voices tries to sort through questions of medical futility and possible ways to resolve the intractable disputes, our running joke is that our endeavor is itself an exercise in futility. But, of course, it’s not a joke, as I was reminded when my friend, as he had said he’d want, was allowed to die.

Why I'm Pulling the Plug on "Pulling the Plug"

I think I’ll ban “pull the plug” from my usage, much as I did years ago, as a journalist, and learned from Strunk & White that people, in print, ought never to “pass away.” They die. Simple and sad as that. Sometimes they die after they are disconnected from a ventilator, feeding tube or other life-prolonging measure.

I’m thinking about this as I begin research into the Liverpool Care Pathway, an apparently effective means of allowing a dignified death while keeping a patient’s wishes and best interests in mind throughout end-of-life medical care -- but which has become quite controversial. Some UK media seem to have gotten aboard the “death panel” band wagon in a big way.

But the reason “pull the plug” is on my mind is that it’s the phrase someone on the West Coast used to describe to me what occurred earlier this week to a mutual friend. He’d been on life support for more than a week, after he suffered a stroke and collapsed in his home. That damage to his brain is irreversible and, despite the suddenness of this catastrophic event, his family has accepted that he would not wish to continue life mechanically prolonged in a vegetative state. He had said as much to another mutual friend on more than one occasion. 

I’m sad for my friend and his extended family, and I admire them, and the friend who had the foresight to engage in the conversation about values. I know nothing of the dialogue that has taken place with doctors in making the decision to allow him to die, and perhaps the decision was easy to make, relatively speaking, and it was clear to all that there would be no recovery of any meaningful kind. And yet my friend is from a Catholic family, as am I, and agreeing to the removal of life-sustaining technologies and forced nutrition is no simple step.

When I learned of my friend’s fate, I had just read for the second time UK physician Max Pemberton’s recent piece in The Telegraph, “The Liverpool Care Pathway Leads Away From Pain.” There’s no telling how many times I’ll read it before I’m through. I want to know it by heart. It’s that good.

The Liverpool Care Pathway strikes me as the sort of thoughtful and bold approach to care at the end of life that is very much needed in the United States, especially for those for whom the dying process is prolonged and full of uncertainty.

It needs to be thoughtful because, well, it’s about care of the dying, who have a way of surprising us and not dying when we think they will, and whose own wishes for how they die, if known, can range from "do everything to keep me alive" to "if I'm a vegetable, let me go quickly." And it needs to be bold to overcome the “death-panel fear-mongers,” to borrow a phrase from a recent New York Times editorial. (A thoughtful and bold editorial, I might add.)

Such fear-mongering isn’t unique to the U.S. Indeed, Pemberton’s piece is in part rebuttal to coverage that has made the Pathway out to be more about economics than compassionate care, which, if true, would indeed be unfortunate. It does appear that in some cases, consent was not well informed (good communication shouldn’t be a speciality in medicine). Lawsuits have been filed, and an independent inquiry is under way. (More here)

The Pathway has in some UK media acquired the nickname “death pathway,” which is not meant as a compliment. But my sense is that the Liverpool Care Pathway has a lot more to do with compassionate care and dignity in death, and Pemberton makes this case well.

Also worth reading regarding the Pathway, and the key role nurses play in making it work, is a story in NursingTimes.net. The author, like Pemberton, writes of personal experience with the Pathway, and one notably helpful and compassionate palliative nurse in particular. 

“The LCP is not the problem, but its implementation, in some cases, is. Those cases are entirely unacceptable and should face the full fury of the media and patients when they happen,” writes health journalist Shaun Lintern.

“Nurses grappling with life and death issues face incredible pressures; you go into this job to save lives, not to watch them fade away. One possible reason for the lack of communication with some families could well be a reluctance of some nurses and junior doctors to have those incredibly tough conversations with patients and families.”

I'm grateful that this does not seem to have been the case with my friend and those in the thankless position of speaking for him about how he'd wish to die.