A Doctor's Honor, a Specialty's Slight

Interesting irony in the current issue of Boston Magazine: Eileen McNamara has written a strong essay criticizing the Archdiocese of Boston for its methods of opposition to the Dignity 2012 effort to get physician-assisted suicide on the state ballot. 

The piece opens with a recounting of the death by self-inflicted gunshot of PAS proponent and physician Marcia Angell’s terminally ill father more than a decade ago -- just one of many compelling stories that argue in the ballot measure’s favor. Massachusetts residents are sure to hear many more between now and Election Day.

The irony: The edition also features Boston Magazine’s annual accounting of Boston’s top doctors and their specialties. In each specialty, several physicians are held up for distinction. That is, in each specialty but one. In Hospice and Palliative Medicine, there is only one physician honored.

Entering a year that will sizzle with debate over respect for a person’s dignity and dying wishes and the morality and ethics of physicians involving themselves in ending lives, it’s telling, and a shame, that hospice and palliative physicians don’t carry more prestige. Because end-of-life care, and the complex and crucial communications involved, are what make it such an important a speciality.

All the same, congratulations to Vicki Jackson of Mass General for her somehow singular achievement.   

POLST & the season of giving

Months after his veto with recommendations for new language and bolstered patient rights, New Jersey Governor Chris Christie this week signed POLST legislation. http://bit.ly/w0zlPh

The POLST is a form meant to follow a patient through the health system with preferences for care. It stands for Physician Orders for Life-Sustaining Treatment, and gives voice to a patient whose thoughts are no longer accessible. And it seems to me a gift. In imagining an ideal for how to die well, many of us wish not to be a burden to family. The POLST, an advance directive with a broader reach (covering, for example, EMTs), is an effort to respect that wish.

I admire Christie and New Jersey legislators for making POLST state law. No one form can solve the emotional complexities of end-of-life decision-making. But this seems an important step, and a courageous one, given how difficult it is for Americans to discuss dying. 

A similar form known as a MOLST is being promoted for adoption in Massachusetts. At the same time, a separate effort is under way to place assisted suicide on the 2012 ballot in Massachusetts. MOLST proponents are concerned the heat surrounding the assisted suicide measure will compromise support. 

I hope that is not the case. Massachusetts would do well to follow New Jersey’s lead.

Equation Impossible: Cost + EOL Care

“All of us will at some point come to this pass; we will all need a place to die. It’s not easy to think about, but it is true. We can turn away from that hard fact, try to stall death, even bend it to our will for a little while in the I.C.U. Or we can face that most difficult of life’s trials and ask ourselves how to make it easier.”

-- Theresa Brown, oncology nurse and author of “Critical Care: A New Nurse Faces Death, Life and Everything in Between,” in her compelling piece on end-of-life care, priorities, and what we're willing to pay for, at http://nyti.ms/tRtdeg

Why Aren’t Doctors Better at Predicting?

“Studies show that even though doctors tend to be optimistic, their personal observations are necessary for the most accurate prognosis. So we have to overcome our hesitation in giving bad news — and patients and their families need to be willing to hear what we’re saying.”

-- Manoj Jain, infectious-disease specialist in Memphis and an adjunct assistant professor at Emory University in Atlanta, writing in the Washington Post.

http://wapo.st/syZPmC

"When we foresee death"

“You’re always struggling against expectations. Something else can always be done; there’s always another test and another treatment. So it’s important to let people know when we foresee death. When I see patients who I think are at risk of dying, I say to the family and patient, ‘You could die during this hospital admission. Is that something you’ve been thinking about?’ Then you can go forward and ask, ‘What have you been thinking, and what are your expectations?’ When you plant the seed that death may be the outcome, people have more acceptance. They can initially be very shocked: ‘My goodness, I never knew he was that sick.’ They need time to come to terms with it. So you give them more time, rather than tell them in the I.C.U. that it’s time to turn off the ventilator. If you support them and attend to their needs, most patients and families are very accepting.”

-- Dr. Stephen Workman, an internist at the Queen Elizabeth II Health Sciences Center in Halifax, Nova Scotia, in the NY Times New Old Age blog. 

See: http://newoldage.blogs.nytimes.com/2011/12/14/plain-speaking-at-the-end-of-life/

Checklist for End of Life Care

It is a statement of fact, repeated in study after study -- errors in end-of-life care continue to be made. Such is the timeless truth of the statement that it almost goes without saying. As long as attempts are made to save lives, errors will continue, and attempts to eliminate them will continue. It would be naive to think that at some point errors will cease, but the worst error would be to stop trying.

Also clear, in study after study, is that poor communication is behind many of the errors. As the Community Ethics Committee proceeds in its study of intractable disputes in end-of-life care, we have wondered whether a checklist might not be helpful in making sure the basics are covered.

And so I was excited to discover that such a checklist exists, and is from some of Canada’s leading experts in end-of-life dispute resolution. The checklist is published in the current edition of Healthcare Quarterly (http://www.longwoods.com/content/22652) with the article “Checklist to Meet Ethical and Legal Obligations to Critically Ill Patients at the End of Life.”

The authors are bioethicists Robert W. Sibbald and Paula Chidwick, attorney Mark Handelman, and physician Andrew B. Cooper. All have interest and expertise in Ontario’s Consent and Capacity Board, which I’ve come to believe is the best model available for resolving the most intractable disputes. (More on the CCB in a later blog.)

“While excellent communication is desirable for any end-of-life conversation, healthcare professionals must first and foremost meet their basic ethical and legal obligations to critically ill  patients,” the authors write. “The use of a checklist for managing these obligations in end-of-life scenarios offers several benefits. The checklist we propose can minimize common mistakes and errors when engaging in end-of-life care by ensuring that care is patient centred, process oriented and values driven. Use of the checklist ensures that the team takes direction from the correct (surrogate decision maker); that the SDM consents in accordance with the legislative standards; that decision-making is patient centred by adhering to prior expressed wishes, beliefs and values of the patient; and that there is respect for the professional integrity of physicians proposing treatment plans. Finally, the checklist can reduce uncertainty regarding what constitutes an end-of-life conversation, and it provides clear steps for managing conversations at the end of life.”

The authors say following the checklist will minimize common errors at the end of life, ensure patient-centered decision-making by respecting wishes and values, respect professional integrity and clinical judgment, ensure that the medical team meets ethical and legal obligations to patients, and clarify what constitutes an end-of-life conversation. 

Though some of this language is specific to Ontario and its established law and process, the checklist has much to inform communication elsewhere. Here is the checklist for meeting ethical and legal obligations at the end of life. 

Ask the capable patient about wishes and beliefs: 

1. “What is your understanding of your condition?” 
2. “What worries you about your situation?” 
3. “How do you make decisions in your family?”
4. “What is important to you right now when making decisions?”  
5. If the patient is not capable, document this before proceeding to step 2. 

Identify the legally correct SDM: 

1. See hierarchy of decision-makers (from Ontario’s Health Care Consent Act). 
2. Document decision-maker(s) 

Ask questions of the SDM: 

1. “Is there a living will?” 
2. “Do you know your role?” (e.g., to act on prior expressed wishes or best interests)
3. “ Do you know what the patient would have wanted in this situation and what was important to this person?” (share beliefs or stories)
4. Document what you learn.  

If there is no prior applicable wish, inform the SDM about “best interests”:

1. “ If there are no prior expressed wishes, we then have to consider what is in the best interests of the patient – this means we can propose treatments that will change or improve the condition of the patient for the better, while taking into account this individual’s goals, values and beliefs.” 

Propose an indicated treatment plan:

1. “We are going to do what will benefit your loved one, and we will continue the treatments that are indicated and in [his/ her] best interests.”
2. OR 
3. “ [Patient’s name] is really sick. We will provide treatment that improves or changes [his/her] condition for the better, so that leaves us with the following options: palliative care, comfort care …”
4. “When a treatment is no longer indicated, we will let you know that we are no longer providing it.”

If NO consent is obtained, state the following: 

1. “It is a challenge when we cannot reach agreement; however, we have a resource that can help us, called the Consent and Capacity Board. It is a neutral third party that will come into the hospital and listen to both sides of the story. The board will then decide what is in the best interests of the patient.”
2. “The patient would be appointed a lawyer, and the physician may have a lawyer as well. You personally are entitled to have one also (refer to www.ccboard.on.ca).” 
3. Document that you have explained the role of CCB. Give the family time to ask questions. 

Movies, Media & EOL

I finally saw “The Descendants” last night, and was moved and impressed by a very human look at the emotional complexity of letting go. And with all due respect for George Clooney, the star of the film was the dying woman’s advance directive. What a different story it would have been without it.

Too bad a document can’t be nominated for best actor in a supporting role.

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A patient is in his final hours of life, the supervisor says, but care continues, and the patient survives. What does that outcome say about the value of the care, in an era when it’s become almost cliche to say we spend too much on the dying?

Peter Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan-Kettering Cancer Center in New York, turns the question of cost in end-of-life care on its head in an essay in the NY Times today. http://nyti.ms/tVLw8P

He writes: “How could it be that we were prudent with health care dollars because he lived, but would have been described as wasteful had he died? Doctors in an emergency room cannot know which will occur. They do not have divining rods that direct them to patients they can save and away from those they can’t. Rather, caring for the sick means caring for people who may die.”

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LA Times columnist Steve Lopez confronts the prospect of tube-feeding his father -- or, perhaps, choosing not to. He writes: “One doctor told me that our fragmented healthcare system has a built-in incentive to give my dad a feeding tube.The surgeon and hospital would get paid, the nursing home would benefit because Medicare would cover 100 more days and my family would be spared that cost. The only losers would be taxpayers, and maybe even my father, who has already been cut open, probed and filled with buckets of medication, only to become sicker, angrier and more depressed.”

See: http://www.latimes.com/health/la-me-1211-lopez-dad-20111211,0,7448973.column

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A New Yorker wrote to Judy Bachrach’s “Advice on Dying Well” column at obit-mag.com, telling of a close friend with a terminal, painful cancer. “She has told me she is planning to kill herself before the pain gets really intolerable, and she wants me to help her out in those last hours, get information, administer the drugs, and so on. ... Could I be prosecuted? I want to help a wonderful friend – an old girlfriend, really, whom I still love. But I don't want a prison sentence.”

Bachrach’s reply:

“I just relayed your question to Kathryn Tucker, the lawyer who successfully defended Oregon's groundbreaking Right to Die law before the Supreme Court -- and is now Director of Legal Affairs for compassionandchoices. She points out, however, that Oregon’s law is very narrowly defined. 

Here are some of the limitations: It is the patient -- and only the patient -- who has the right to self-administer medication that will shorten her life. Second: She must be within six months of dying. Third: the patient must make multiple requests for such medication, both orally and in writing. And fourth: She must live in Oregon. Your friend clearly does not meet these requirements.

How likely is it that should you help her die in the way your friend wishes, you will be prosecuted?  Tucker says, "The risk of prosecution is small, because there's a whole chain of events that has to be set in motion before someone is brought up on charges." But, she adds, "We have all seen zealous prosecutors who might prosecute. It is not unheard of. It's rare, but no one should be too confident, even when the risk is low."

Here's the good news. Pain these days is not an inevitable part of dying for most people. This is essential for your good friend -- and you -- to know, because it will make a world of difference to the decisions ahead of you. 

My advice? Scout around for a good hospice in your friend's community. Ask friends, doctors and nurses for a recommended facility.

Your friend may not even have to stay in a hospice. Hospice care is often administered in the home. Excellent pain medications -- morphine and especially methadone, for example -- can be prescribed, and are carefully tailored to suit the patient’s needs.

I am telling you all this because your friend has to know, odd as this may sound, that dying can be comfortable. Or at least not an excruciating experience.

And I am also telling you all this because yes, if you help someone end her life, whatever your motives, you just might be prosecuted. And how would that help either you or your friend?”

Physician, seat thyself?

"It was remarkable how a low-tech piece of equipment moved our team from the dry efficiency of updates and to-do lists to the fundamental process of caring for the patient."

See: http://www.geripal.org/2011/12/sit-down.html?spref=tw

Consensus on 1-Year-Old's Fate

Hiram Lawrence’s parents have agreed, and Children’s Hospital in Oakland, California, will remove the 1-year-old from life support this afternoon. Writes medical futility scholar Thaddeus Pope: “Apart from the media exposure here, this is how most end-of-life conflicts are resolved. With a little more time and more communication, consensus is usually reached.”

"My baby is still fighting"

A toddler, shot in the head, is in an induced coma. Agonized parents want life support at least until the child’s second birthday. “My baby is still fighting,” the mother says. The hospital is testing for brain activity. A pediatrician faces a second opinion with wrenching consequences. And a ethicist says there is no legal or ethical reason the hospital cannot disconnect life support if the child is declared dead. This is playing out now in Oakland, California.

See:

http://fxn.ws/v4Y3qM

and

http://bit.ly/vF49Kk

How Doctors Die

Doctors die, but not like everybody else.

They know what’s possible and what’s not.

Or what’s probable.

What's inevitable.

They know well what “do everything” means, so don’t tend to ask for it.

So says Ken Murray, MD, Clinical Assistant Professor of Family Medicine at University of Southern California.

Don’t miss his compelling and insightful blog:

http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/

Care Pair: Palliative + Primary

An effort is underway in Ireland to make palliative care a common component of primary care. Why? It is an acknowledgement of the specialty’s skill with patients in the process of dying, coupled with an awareness that more than 90 percent of the final year of life is spent at home -- so care is heavily reliant on primary care.

Now that the Irish Hospice Foundation has issued its report, “Primary Palliative Care in Ireland: Identifying improvements in primary care to support the care of those in their last year of life,” the next step is making it happen.

A 2010 survey on end-of-life care informs the report and found “a desire for enhanced communication skills for interacting with patients and families at end-of-life.” The survey also underscored the importance of developing “patient information transfer systems, improvement of out of hours services, and training in end-of-life care.”

Another welcome sign that palliative care is emerging from its ghetto of last resort.

http://irishhospicelibrary.wordpress.com/2011/12/01/primary-palliative-care-in-ireland-new-report-launched/

Assisted Suicide, Palliative Care & Twitter

I’m just now beginning to comprehend the language and usefulness of Twitter and the social network’s means of organizing feeds within the use of hash tags. So maybe this is nothing new. But in the past few weeks, #palliative and #hospice have opened my eyes to the widespread engagement, locally and internationally, of important questions about how we die -- and how patients in the process of dying are treated.

For example, a woman in western Canada is pursuing in court her “right” to an assisted suicide, a practice that could be headed for the 2012 ballot in Massachusetts and to which the Massachusetts Medical Society has reaffirmed its opposition. Meanwhile, the recognized benefits of palliative care are increasing its stature within medical practice at the very time the ranks of trained palliative nurses is shrinking.

All of which fed my interest in a tweet linking to the National Institute for Health and Clinical Excellence, or NICE, website. NICE provides guidance and standards on prevention and treatment in the United Kingdom.

NICE, which is developing clinical guidelines related to the use of strong opioids in palliative care, has posted draft recommendations and invited public comment into the new year.

Importantly, the draft report addresses public concern when the focus of treatment moves from disease to pain, as well as strategies for better communication between the care team and patient, and the side effect of addiction.

"The new draft guideline puts a strong emphasis on good communication between patient and healthcare professionals,” said Dr Fergus Macbeth, director of the Centre for Clinical Practice at NICE. “This is key to ensuring that any doubts or uncertainties are addressed, thereby enabling the patient to feel content in following what has been prescribed and therefore potentially improving their pain control and reducing any associated side effects.”

Notably, the draft guidelines include: “When offering a patient pain treatment with strong opioids, ask them about concerns such as: addiction, tolerance, side effects, fears that treatment implies the final stages of life. Offer patients access to frequent review of pain control and side effects and information on who to contact out of hours, particularly during initiation of treatment.”

For more on the draft guidelines, see: http://guidance.nice.org.uk/CG/Wave24/4.

New Name = More Palliative Care?

Studies have shown that palliative care can improve a patient’s quality of life, and sometimes even extend that life. But palliative care tends not to come up in the doctor-patient conversation until rather late in the process. So, if it can do some good, how can palliative care be brought into the conversation earlier?

How about changing the name?

The Oncologist has published a study from the Department of Palliative Care and Rehabilitation Medicine at the University of Texas M.D. Anderson Cancer Center showing that referrals came earlier and more frequently when palliative care was known instead as supportive care.

But is “supportive care” a clear enough term? Might “comfort care” be even better? Or is the meaning of “palliative care,” which covers a broad spectrum of pain management, so well known within medical practice that changing the name would cause confusion and do more harm than good?

Maybe palliative care, like hospice care, just needs to be better understood.

For more on the Anderson study, see: http://theoncologist.alphamedpress.org/content/16/1/105.short

MEANING OF TREATMENT, COST OF CARE

What is “treatment” in the legal sense?

Toronto attorney Charles B. Wagner’s blog has an insightful consideration of the term and the distinction between the wishes of the patient and those of a substitute decision-maker, as relates to the Rasouli case in Ontario, Canada. Find it at http://bit.ly/vKeyqT

In short, this is the case of a family successfully suing to stop doctors from removing a man, diagnosed in permanent vegetative state, from a ventilator. As Wagner notes, doctors argued they were inhumanely extending death, not life, and felt that “continuing unnecessary treatment diminishes the quality of life of the patient and exposes him to gratuitous discomfort and indignity.”

Though the Rasouli family are Shia Muslim, the case has particular ramifications for Jews, Wagner writes. “Do we want a stranger whose views on end of life issues may not be in accordance with halacha to be the decision maker?”

Another compelling aspect of this case is an especially hot button in end-of-life treatment: cost.

“Our health care system is in crisis,” Wagner writes. “Many say that it is underfunded and mismanaged. ... The hospital, separate and apart from the doctors, brought up the issue of limited resources. At the hearing, their lawyer argued that hospitals could be overwhelmed with individuals with no hope of recovery remaining on life support for extended periods of time and thereby deny those who can be helped access to scarce resources. This issue was not argued at the Court of Appeal, but it is an issue of importance. Is the lack of funding a driving issue in this debate?”

(Thanks to medicalfutility.blogspot.com for the tip to Wagner’s blog.)

UNDERTREATING PAIN

Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society: “Doctors think they are managing pain properly, but the results of the report suggest otherwise.”

http://bit.ly/rVFpXk

LANCET: VEGETATIVE MISDIAGNOSIS

“Despite rigorous clinical assessment, many patients in the vegetative state are misdiagnosed.”

This according to a Lancet cohort study of awareness in the vegetative state, which further reports: “The EEG method that we developed is cheap, portable, widely available, and objective. It could allow the widespread use of this bedside technique for the rediagnosis of patients who behaviourally seem to be entirely vegetative, but who might have residual cognitive function and conscious awareness.”

Read the NY Times report on the study here:

http://nyti.ms/t6V9Ne

CANADIAN PANEL ENDORSES PAS & VOLUNTARY EUTHANASIA

The five main points from the Royal Society of Canada Expert Panel’s report on End-of-Life Decision Making, released on Tuesday (see http://bit.ly/h13cGz):

• Canadians do not talk enough about the end of life. On a personal level, many of us do not plan for it, and as a nation we have failed to develop coherent policies or set sufficient standards for the end-of-life care delivered every day all across the country. We need to plan for end of life personally and as a society.
• Canada performs poorly in ensuring access to high quality palliative care. Governments should increase efforts to achieve goals for standards of palliative care established in multiple reports and commissions.
• Uncertainties about the legal status of withholding and withdrawal of potentially life-sustaining treatment without the consent of the individual should be resolved. The legal uncertainties about palliative sedation should be resolved and practice guidelines should be developed and implemented.
• Autonomy is a paramount value in Canadian public policy. Dignity is a value whose meaning is obscure and which can, and is, used on both sides of the assisted dying debate. The evidence from years of experience and research where euthanasia and/or assisted suicide are permitted does not support claims that decriminalization will result in vulnerable persons being subject to abuse or a slippery slope from voluntary to non-voluntary euthanasia.
• Assisted suicide and voluntary euthanasia should be legally permitted for competent individuals who make a free and informed decision that their life is no longer worth living. Canada should have a permissive yet carefully regulated and monitored system with respect to assisted death.

PALLIATIVE CARE TO THE RESCUE

NEWS REPORT: Doctors overwhelmingly support palliative care at end of life. http://bit.ly/uS23RH

SAME REPORT: Doctors say patients aren’t well informed.

READING BETWEEN THE LINES: If the patient isn’t well informed, what does this say about the doctor? And what is it about palliative care that is beyond the skills of other specialists?

+ + +

A joke in my household has gotten so old that even I, who stubbornly clings to anything vaguely humorous, am letting it go. Perhaps this will be the last telling.

The joke starts with an innocent question directed toward the kitchen: What time is it? There are two clocks there, one on the oven, the other on the microwave. If they weren’t reset after the timer’s last use, they simply read “END.”

And so the answer to What time is it? has become, It’s the end of time. When this is the answer, It’s the end of time invariably is followed by Hasta la vista, sometimes Finish what you’re doing, honey, or my personal favorite, Off we go, then, in a pitched, faux British accent.

Alas, the joke has run its course. Certainly my wife and daughter feel that way. So I’m ready to let go.

I’m thinking about letting go and the clock running out while reading a story on Marketwatch.com that says doctors overwhelmingly support palliative care, want it to become a higher priority for patients who need or want it, but are put off by the “giving up” baggage carried by palliative care.

According to the survey, “Two-thirds of the physicians who have discussed palliative care with their patients say the patients are not well-informed about their options, and about a quarter say they're reluctant to recommend palliative care because their patients may believe they're not doing everything possible to extend their lives.”

There’s no question that some humans lack, or even resist, reasonable understanding, especially in a health crisis. (Just google “death panel.”) But what percentage of those physicians with “not well informed” patients would question their own ability to inform well. How many are good listeners who know the patient as well as they know the disease? How many would be described by a patient, or surrogate, as “not well informed.”

For some, palliative care carries the stigma of giving up. And yet studies show palliative care improves a patient’s quality of life, sometimes with the added benefit of more time.

So why is palliative care stigmatized, to the detriment of patients who would benefit and caregivers otherwise out of good options? Maybe it’s because it often is misunderstood as an end-of-life specialty, and not the broad spectrum of comfort care that it is. And because patients and surrogates want the problem to go away, not merely become more tolerable.

Palliative care isn’t exclusive to the end of life, but in a medical world better at understanding the parts than the whole, palliative care is often considered only when other, more specialized options have failed. That it is seen to exist in the handoff from doctor to undertaker is as wrong as it is sad.

Palliative care physicians consider the whole patient, the whole person, not simply the troubled parts. Communication is part of the practice. In modern medicine, they’re kind of old school.

Palliative care can help with the “not well informed” problem, especially when it enters the conversation early. Maybe we need a national Take a Palliative Care Physician on Rounds Day. Palliative care physicians are good at talking and, especially, listening. And isn’t that how one becomes “well informed”?

So, anyone got the time?

DOCTORS, DOCTRINE & DYING WISHES

How effective are advance directives in ensuring a dying patient’s wishes are heard? Not effective enough, according to Compassion & Choices.

Current cases in Kentucky and California both cast a light on the limits, potential and real, of advance directives, and the challenges inherent in trying to enforce them.

In California, a Physician Order for Life-Sustaining Treatment, or POLST, not only was ignored by a physician, according to a lawsuit, but the hospital’s culture encouraged that it be ignored. 

And in Kentucky, fear of such an order being ignored is driving opposition to the merger of three hospitals into a system beholden to Catholic doctrinal decision-making, especially as relates to reproductive issues and honoring of advance directives.

In an editorial, the Courier-Journal of Louisville wrote: “The issue is whether a public hospital, operated by a public university and charged with care of the indigent population of this region (funded by tens of millions of public dollars) should have legal medical policies restricted by the rules of any religious group.”

A notable presence in both cases is Compassion & Choices, which has a mission of increasing the legal range of end-of-life care and choices. The national organization, formerly the Hemlock Society, is opposing similar church/hospital merger scenarios in the state of Washington. (In Massachusetts, Death With Dignity, not to be confused with Compassion & Choices, is at odds with the Archdiocese of Boston over the possible 2012 ballot measure on legalizing physician-assisted suicide.)

On its blog, Compassion & Choices vowed to “urge all parties to fully review the proposed merger and approve it only if the parties involved will preserve continued access to vital healthcare services, including care at the end of life.”

In California, the family of Emily DeArmond seeks monetary damages and an order forcing policy changes at Kaiser Permanente to ensure respect for patients’ treatment instructions.

DeArmond died at age 18 after a battle with cancer that began when she was four. In her final days, her parents completed a POLST, which California law requires a physician to follow pending review. (See the full complaint and POLST at http://thaddeuspope.com/images/DeArmond_OCSC_11-03-11_complaint_.pdf)

I’m curious to know the ER physician’s reasoning for intubating Emily against the family’s  wishes as stated on the POLST; what can ensure that advance directives follow a patient through the care system; and why the parents rushed her to an ER, given her condition and their wishes. Isn’t that a mixed message from family to doctor?

And, I wonder, if advance directives can be ignored, for doctrinal or other reasons, are they even useful? The Rev. Leith Anderson, president of the National Association of Evangelicals, answers this convincingly and eloquently.

“For the family, that there are processes in place is wonderfully helpful,” Rev. Anderson says in a Oct. 21 segment on PBS’ Religion & Ethics Newsweekly, “because often children and spouses, they’re frightened, they don’t want to make a mistake, they don’t want to give up too soon, they don’t want to hold on too long, and if it’s been discussed, and especially if it’s been documented in writing, that is really a gift to family.”

The full PBS story, and interview with Rev. Anderson, is available here: http://to.pbs.org/sPHF4Y

Palliative Care on YouTube

There are many videos at this website, but kudos for this one, the first that I've seen. I'll be back for more:

http://www.getpalliativecare.org/videos/palliative-care-faq

Magic, Medicine & Steve Jobs

“I’m haunted by a story I heard once about a biotech industry lobbyist who went to see a congressman and was told, ‘You guys don’t do innovation. The iPad. That’s innovative.’ As a society, it seems to me, we say that a lot. We value the magic box built out of many more basic innovations much more than what came before – and as a result, we overlook the work that is actually foundational.” 

-- Matthew Herper, Forbes science and medicine writer.

Herper’s full story, an exceptional an insightful read:

http://www.forbes.com/sites/matthewherper/2011/10/31/why-steve-jobs-magic-doesnt-work-in-medicine/2/

ADVOCATE: A FRIEND IN NEED

Advice for choosing an advocate, from Judy Bachrach’s column today at obit-mag.com (http://bit.ly/rAmLCg):

“Whomever you decide on: Make sure a) you inform that person of your decision when you make it; b) don't be upset if that person declines to be your Power of Attorney (a lot of people can't take that kind of responsibility); and c) be positive this person will respect your wishes in the event of an illness or medical emergency.

   

“In other words, should worse come to worst and you don't want intubation, resuscitation or other medical intervention to prolong your existence -- be certain whomever you pick is in agreement with your wishes. Also, make sure that in the event your competency diminishes and you are unable to articulate your wishes, a copy of your living will is in the hands of that friend. 

“Doctors and hospitals have a way of ignoring advocates, but the one thing that gets to them (often) is an executed legal document.”

Bachrach’s preference for an advocate: a close friend.

DECISION-MAKING IN AN ALTERNATE UNIVERSE

Sometimes I feel guilty for over-relying on Thaddeus Pope’s blog. But as the Community Ethics Committee delves deeper into the difficult subject of intractable disputes in end-of-life care, there is nothing quite like Pope’s blog as a road map (www.medicalfutility.blogspot.com).

This week, he led me to a Washington State news report of the conflict arising from Catholic hospital ownership and Death With Dignity law. That is worth a look: http://bit.ly/qPnR8u

He also drew my attention to The Onion’s darkly funny report of a PVS patient running for president. Only 36 hours after watching a debate in which one Republican candidate passionately championed life and bemoaned what he sees as the social marginalization of religious faith, and another candidate decried the “anchor babies” of immigrants, I had to remind myself the Onion story wasn’t real. It, too, is worth a look: http://onion.com/nZ40W1

But Pope also made me aware of a story that is very real, closer to home, and with much to inform the CEC’s futility study: the ruling in Bonanno v. Blue Cross and Blue Shield of Massachusetts, Inc. et al.

In a ruling dated October 14, 2011, Judge Denise J. Casper of U.S. District Court in Massachusetts granted summary judgement to Blue Cross et al., which were sued by Julia Bonanno claiming she was wrongly denied reimbursement for care of her late husband, a former Raytheon employee. A PDF of the case is available here: http://bit.ly/pYdJHr

Lawsuits over end-of-life care typically are abandoned after the death of the patient, so this ruling provides a rare, clear and revealing legal look into a medical futility case, especially the role of an insurer and the place money holds in the equation.

The ruling doesn’t provide any sense of the relationship and communication between the patient’s wife and doctors, and perhaps that is because it was not the doctors or hospitals that were sued. And yet, the judge ruled for Blue Cross because its decision was seen as consistent with diagnosis and prognosis, and therefore was neither arbitrary nor capricious.

Under the Raytheon health plan in question, employees were entitled to "medically necessary" services, with Blue Cross authorized to judge that necessity. Medically necessary services are described as diagnostic or therapeutic efforts "essential to improve [the participant's] net health outcome ... (and to be furnished) in the least intensive type of medical care setting required." These services also needed to be “as cost effective as any established alternatives." 

Notably, medically necessary services were not  "furnished solely for [a participant's] convenience,” for “the convenience of [a participant's] family or health care provider,” or to increase or enhance “environmental or personal comfort." 

Raytheon employees were not covered for “custodial care,” defined as care “given primarily by medically-trained personnel for a member who shows no significant improvement response despite extended or repeated treatment; or care that is given for a condition that is not likely to improve.”

One of the challenges in the CEC’s futility study is to better understand the patient/family perspective. In each case, it’s a deeply personal and painful story; telling it to a committee of strangers is not an inviting prospect.

We recently heard the story of an infant’s slow and torturous death, and got a sense of the alternate universe and “new normal” a family is thrown into. In retrospect, different decisions, aided by clear communication from doctors, might have made a difference in a legacy that remains painful for the parent years after the fact. But retrospect is always too late to be of use.

Finally, Pope also provided this brief update: “Several weeks ago, I blogged about the case of Jesus Cornelio. His wife had alleged that doctors at Banner Good Samaritan Hospital in Phoenix told her that after an aneurysm damaged her husband's brain he would never wake up.  She said that they presented only two choices: (a) have Jesus deported to Mexico, or (b) withdraw life support. Ultimately, neither of the courses of action was pursued. Jesus has since improved and is now being discharged.”

Definitional Futility

One of the first things the Community Ethics Committee agreed on about medical futility is that the term itself is unhelpful. It’s cold, clinical and one-sided, and has a clarity problem, too. 

Most such end-of-life scenarios that descend into intractable dispute stem from disagreement over the medical judgement of futility -- but not all do. There are cases of “reverse futility,” which really aren’t about the denial of futile care at all. In these cases, medical staff somehow transcend patient or family opposition and proceed with therapy.

Futility cases typically end in the patient’s death, with court proceedings abandoned. But two cases this summer both were resolved in court, one after the death of the patient, the other in which the patient survived. Both involved, not futility, but therapies delivered against stated wishes. And both claimed malpractice.

In Jones v. Ruston Louisiana Hospital, daughters of a man who died more than two months after a major cardiac event sued the hospital for ignoring a do-not-resuscitate order. A lower court ruled that unwanted resuscitation was not medical malpractice, and did not meet a requirement for medical review. An appeals court agreed.

In DeGeronimo v. Fuchs, a New York woman in her mid-thirties sued for having received an allogenic blood transfusion against her wishes and Jehovah’s Witness faith. The woman had gone out of her way to find a doctor to see her pregnancy through and respect her faith-based wishes, but complications following childbirth included surgery and life-threatening blood loss. For reasons related to the pregnancy, none of her own blood had been collected.

The court said it was clear that the transfusion had saved the woman’s life, that her husband had signed off on the life-saving measure, and that the woman herself had nodded consent “in extremis,” though she had no memory of this afterward.

The court found “no precedent for finding medical malpractice when a blood transfusion was the proximate cause of saving a life ... There is no cause of action for ‘wrongful life’ in the state of New York.” Instead of malpractice, the court said, the plaintiff should have sued for battery.

On the legal scholar and medical futility expert Thaddeus Pope’s blog, where I learned of these cases, a commenter said: “In the Jehovah's Witness ruling, what stood out to me was the issue of capacity and the ethics of ‘re-consenting’ a patient and surrogate in extremis. ... Is a policy of required reconsideration for Jehovah’s Witness patients in life-threatening situations fair to them? If it is, then more thought should be given to the timing of these conversations. Having been involved in similar situations to this case, it is very easy to believe that both the physician's account and the plaintiff's non-recollection of the conversation were honest.”

I’d be interested to learn about other instances of “reverse futility.”

Lancet, Futility & Prematurity

I’m not sure what to make of the word premature. It was simply creepy during late-night viewings of Ray Milland in “Premature Burial.” Monty Python made it funny with the “not quite dead yet” scene in “The Holy Grail.”

Then my daughter was born a month early and they called her premature, which was absurd to me. I was in my forties and a father for the first time, so to consider her early made no sense on my watch.

Recently, premature threw me another curve. I’ve been reading and rereading a lengthy Lancet Oncology Commission report, as background for the Community Ethics Committee’s study of medical futility.

The Lancet study (Delivering Affordable Care in High-Income Countries, September/October 2011) shines light on aspects of end-of-life care that can derail honest dialogue -- notably cost (economic and otherwise) and rationing. This is the stuff of “death panel” paranoia. But delivering health care that society and individuals can afford is so urgent that any honest assessment must take them into account.

Not all medically futile cases that descend into intractable dispute between doctor and patient/family can be traced to a moral gap between science and religious belief, but many can. Which is why this phrase in the Lancet report caught my eye: “the worldwide cost of cancer due to premature death.”

Simply agreeing on a definition of “premature death” might itself be futile. Is it simply life that ends earlier than expected from other than natural causes? Premature death has meaning in a medical sense, but what is its meaning in a religious sense? And do the definitions share any connective tissue whatsoever?

In attempting to understand medical futility, I studied (mostly through newspaper and online reporting) the case of Samuel Golubchuk, an elderly man in Winnipeg, Manitoba, who had suffered serious brain damage and whose condition was diagnosed as irreversible. Lacking therapeutic or curative options, and questioning the continuance of more than comfort care, ICU doctors wanted him removed from life support.

Golubchuk was beyond speaking for himself, but his adult children argued that to discontinue life support would go against the man’s lifelong religious beliefs as an Orthodox Jew -- specifically, the teaching against hastening death. But in that tragic case, which over time resulted in half the physicians on a small ICU staff resigning rather than continue treatment they considered to be torture, it seems never to have come up that Judaism also teaches against prolonging the dying process.

Many religious believe time of death “is written” -- that God knows when death will occur, and humans shouldn’t interfere. If that is true, how can anyone know when medical life support is appropriate, or when it merely prolongs dying?

Cases such as Golubchuk’s are relatively rare, but they are enormously harmful to families and caregivers in dispute -- not to mention the unresponsive patient made to endure the “care.” The disputes tend to be resolved only by the patient’s death, as was the case with Golubchuk.

It pained Golubchuk’s attending ICU physician that the family’s religion-based demand to continue life-saving efforts seemed to have no regard for prognosis. The physician’s options became to “do harm,” or to resign.

There is nothing premature about the Lancet Oncology report’s main point: that the cost of cancer care is unsustainable. It would seem modern success at cure and care is making us more selective with both.

More on the Lancet report will follow.

WEIGHING FUTILITY AND AUTONOMY

In an intractable dispute over care at the end of life, should respect for autonomy dictate how to proceed?

Clearly, as the Community Ethics Committee studies medical futility, one thing we’ll need to consider carefully is the value placed on patient autonomy.

I find this passage from Atul Gawande’s book “Complications” insightful:

“Where many ethicists go wrong is in promoting patient autonomy as a kind of ultimate value in medicine rather than recognizing it is one value among others. Schneider found that what patients want most from doctors isn’t autonomy per se; it’s competence and kindness. Now, kindness will often involve respecting patients’ autonomy, assuring that they have control over vital decisions. But it may also mean taking on burdensome decisions when patients don’t want to make them, or guiding patients in the right direction when they do. Even when patients do want to make their own decisions, there are times when the compassionate thing to do is to press hard: to steer them to accept an operation or treatment that they fear, or forgo one that they’d pinned their hopes on. Many ethicists find this line of reasoning disturbing, and medicine will continue to struggle with how patients and doctors ought to make decisions. But, as the field grows ever more complex and technological, the real task isn’t to banish paternalism; the real task is to preserve kindness.”

(The Schneider reference is to Carl Schneider, professor of law and medicine at University of Michigan and author of “The Practice of Autonomy.”)

LOOMING COLLISION OF COST AND CARE

BBC News this morning told a compelling story about Lancet Oncology’s report on the “train crash” ahead over health care costs.

Says the report’s lead author, Dr. Richard Sullivan: "We're on an unaffordable trajectory. We either need to manage and reduce the costs or the cost will increase and then inequality rises between rich and poor."

In particular, the Lancet report criticizes care considered medically futile -- in particular, pricey chemo for no medical benefit among the imminently dying.

According to the BBC: “The report says solutions fall into two categories: reducing the cost of services or reducing the number of people using them.”

See http://www.bbc.co.uk/news/health-15032862

Thou Shalt Do No Harm

The morning email from Obit-Mag.com drew me into “A Faster Darkness,” the story of an elderly parent’s sudden onset of dementia and long, wrenching death. It was a time of irrational conspiracy theories, heavy sedation and the disappearance of all but the physical being the father once was.

The author is Robert Roper, a Johns Hopkins writing instructor, and I found myself thinking of Roper as a survivor before his father actually died, because in many ways he already was gone. But he wasn’t dead, and wanted to be, his son believes. His father would have wanted Roper to get a gun and end his misery. Roper could almost hear his father asking for that very thing, or so he writes. (http://bit.ly/oAJhw3)

Roper’s piece is yet another compelling look into a subject -- life, and how it ends -- around which our culture struggles to find common ground or meaningful vocabulary. Meanwhile those to whom we turn to care for the dying are viewed with distrust by families who find themselves, often quite suddenly, in the impossible position of speaking for someone who no longer can speak for himself.

We like to think of ourselves as quite highly evolved, and yet we can be abysmal communicators, especially in matters of mortality, faith and reason.

The lead story in the Metro section of Monday’s Boston Globe concerned the Boston Cardinal’s sermon imploring Catholic lawyers to put their weight behind opposition to a movement to legalize physician-assisted suicide in Massachusetts.

“We are called upon to defend the gospel of life with courage and resolve,” Cardinal Sean P. O’Malley said. Agree or not, there is rare and welcome clarity in the statement.

Before Death With Dignity can become a question on the 2012 ballot in Massachusetts, proponents need nearly 70,000 signatures of valid registered voters. Proponents want to make it legal for physicians to prescribe a lethal dose of prescription drugs to the terminally ill.

One fear of legally empowering physicians to assist in a suicide is that it “would be difficult or impossible to control, and would pose serious societal risks.” It might surprise you that this slippery slope argument comes not from a religious denomination, but from the American Medical Association. The AMA calls physician-assisted suicide “fundamentally incompatible with the physician’s role as healer.”

There is helpful clarity in that statement, too. Can a physician kill as well as heal? Is doing both too much to ask?

Dr. Marcia Angell, former editor of New England Journal of Medicine, is a longtime proponent of physician-assisted suicide. She told CommonHealth at WBUR.org: “For the patient, this is not a choice between life and death; it’s a choice of how to die -- slowly, or sooner but more peacefully.” (http://bit.ly/p1FYOg)

To disagree with that seems heartless. And yet to agree that this is not about choosing between life and death seems a victory of compassion over reason, because the practice clearly expedites death. For the best of reasons, perhaps, but the practice still expedites death.

The Community Ethics Committee, of which I’m a member, is studying disputes over futile treatment of the terminally ill, a particularly harsh example of society’s difficulty accepting mortality as it plays out most often in hospital intensive care units. Typically in cases of medical futility, a patient is determined by the care team to be in the process of dying, but the family wishes aggressive treatment to continue.

Distrust and bad communication are hallmarks of such disputes. Families are seen as irrational, doctors as heartless. In the middle are nurses, delivering treatments they deem harmful upon defenseless, dying patients.

Last spring, the CEC completed a serious attempt to clarify the line between caring and killing. The CEC’s report, “Palliative Sedation – Continuous Deep Sedation until Death as Comfort Care,” was submitted to the Harvard Ethics Leadership Group.

“Both euthanasia, where the physician is the agent administering a lethal substance, and physician-assisted suicide, where the patient is the agent administering a lethal substance, have as their chief end the death of the patient,” the CEC said in its report. “The primary goal in either circumstance is not to relieve intractable pain but, rather, it is to end life. The CEC felt strongly that the primary goal of Palliative Sedation is to relieve intractable pain and, as a result, it falls into an ethically supportable and potentially advisable treatment option.”

Physician-assisted suicide, even for the most compassionate of reasons, involves the healer in expediting death. It was important to the CEC, in finding ethical justification for palliative sedation, to ensure to the degree possible that patients died from the progression of their disease and not from the sedation.

The CEC supported the use of palliative sedation while deliberately distancing ourselves from endorsing physician-assisted suicide. The terminally ill in intractable pain should have access to relief - a medical treatment option to relieve their pain but not cause their death. To us, it was the difference between caring and killing.