News & Views into Assisted Dying

Notes, quotes and insights compiled while reading online about efforts to legalize physician-assisted suicide in the United Kingdom, and trying to understand why, under the Death With Dignity law headed for the ballot in Massachusetts, “The death certificate would list the underlying terminal disease as the cause of death.” The official cause of death wouldn’t be the fatal dose? I find that perplexing.

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There’s a blog in the UK named for the former Archbishop of Canterbury, Thomas Cranmer, who argued for Henry VIII’s divorce from Catherine of Aragon, a 16th century lobbying failure that left all sorts of wreckage at the intersection of church and state.

Cranmer died a martyr to the cause but has been resurrected at archbishop-cranmer.blogspot.com with witty, conservative commentary devoted to “examining religio-political agendas with politico-religious objectives” by a writer who goes by His Grace.

The blog is blunt, well-written, and no fan of the Commission on Assisted Dying: “you hand-pick a dozen people who think as you think on a matter, and then publish their findings as reasoned and independent intelligence.”

And, “It is hard to see how the requirement for two doctors to certify a person’s mental capacity will offer adequate protection against the feeling of being a burden on one’s family, especially when unscrupulous members of that family have a financial interest in the death.”

Or, “Where ‘assisted suicide’ is impossible for some disabled (simply because they are physically incapable of ‘pressing a button’), we will, as sure as night follows day, see the incremental introduction of state-sanctioned euthanasia, in order that a third party may legally kill the terminally ill or disabled. And from there, why not terminate those who are mentally disabled and incapable of assessing their own ‘quality of life’? Why should autonomy trump compassion?”

Perhaps the best aspect of the Cranmer blog is the dialogue on morality and end of life that it inspired, with perspectives bolstered by quotations from the likes of Buddha (“This Noble truth of suffering is to be understood.”), Flaubert (““The future is the worst thing about the present”), hospice pioneer Dame Cicely Saunders ("You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die"), and Chesterton ("In my own country, some are proposing what is called Euthanasia; at present only a proposal for killing those who are a nuisance to themselves; but soon to be applied progressively to those who are a nuisance to other people".)

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The Nursing Times reported on an effort by the Nursing and Midwifery Council to clarify with its members that, while the Commission on Assisted Dying is recommending a change in the law, assisted suicide remains illegal throughout the United Kingdom. The story inspired this anonymous comment: “Thank you NMC for reminding us that we are still not allowed to kill patients.”

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Both in the UK and Massachusetts, proposed laws allowing assisted suicide are kept quite narrow -- in particular, they are reserved for the terminally ill. But the exclusionary aspect of this carries unfortunate consequences, which perhaps provides insight into the subsequent pressure to broaden such a narrow law.

The Mirror tells the compelling story of Tony Nicklinson, a mentally competent man left paralyzed with “locked-in syndrome” after a stroke. He is not terminal. He does not now want to die. But he wants the option, and these new recommendations do not include him. 

Other strong essays in reaction to the Commission on Assisted Dying report, both pro and con, can be found here and here.

"The Right to Be Cared For"

The UK report from the Commission on Assisted Dying is out today and available for download.

I haven’t read the report yet, but found this commentary, putting the movement behind assisted dying into context of the larger social need to assist the vulnerable, to be particularly insightful. It’s from David Praill, chief executive of Help the Hospices:

"As the UK charity for hospice care, Help the Hospices wants to see a wider debate on assisted dying and we are pleased that the Commission has recognised the need for hospice and palliative care to be part of this debate.

"Assisted dying is one part of a wider issue that as a society we urgently need to tackle; how we care for vulnerable people – the dying, the frail and the sick.

"For hospices, the issue of assisted dying is not about the right to live or die. It is about the right to be cared for – the right to more care, better care and more appropriate care.

"Hospices play a vital role in supporting people at the end of life, caring for more than 360,000 people each year, including terminally ill people and their friends and families.

"As defined by the World Health Organization, hospice and palliative care ‘intends neither to hasten nor postpone death’ and this philosophy remains a cornerstone of hospice care in the UK.

"Instead, hospice care seeks to improve people’s quality of life before they die by providing care that is personal and tailored to the needs of the individual and their friends and family.

"Through hospice care, people’s fears are addressed and they are helped to live comfortably and with dignity. The power of hospice care to improve people’s experience of living with a terminal illness should not be underestimated.

"It is vital that people facing terminal and life-limiting illnesses are aware of and able to access the tailored care and support that hospices provide to people with a wide range of needs, conditions and ages.

"Hospice care is available to people in a variety of settings – at home, in care homes and outpatient clinics as well as hospice inpatient wards. However, there are still too many people who could benefit from such care but are not receiving it. It is estimated that there are 92,000 people with unmet palliative care needs each year (Palliative Care Funding Review, 2011) – some of which could be met by hospices.

"If hospices are to continue to develop and improve their services so that everyone with a life-limiting or terminal illness has access to dignified, personal and appropriate care at the end of life, it is vital that the role and contribution of hospices is supported. Help the Hospices is working with its member hospices to help achieve that wherever possible."


The BBC's take

When Nurses Are Asked to Hasten Death

With debate building in Massachusetts over Dignity 2012, the ballot effort to legalize assisted suicide, I’m increasingly interested in how the movement to endorse medical assistance in hastening death is playing out elsewhere.

Twitter yesterday drew my attention to a commentary, “The Royal College of Nursing guidance on responding to a request to hasten death,” in the December 2011 edition of the International Journal of Palliative Nursing.

In Summer 2009, the Royal College of Nursing in the UK adopted a neutral position on assisted suicide, which is illegal in the UK. All things considered, it was a bold move, as a few months later the UK Director of Public Prosecutions stated that likelihood of prosecution for assisted suicide increases for health care professionals. 

This past fall, the RCN published related guidelines for when a patient asks for assistance in hastening death, and now nurse Sarah Riches has written an insightful critique of the guidelines.

In most literature I’ve seen related to the end-of-life conversation, the nurse’s role is misleadingly marginalized and any “important” conversation is between doctor and patient. In the 2010 PBS Frontline documentary “Facing Death,” the nursing role was negligible. But while this might be a reflection of literature and media, it’s hardly a reflection of the reality of care.

As Riches and the RCN guidelines both note, nurses and nursing assistants spend the most time with patients, and the most time in conversation with them. Compared with physicians, the nurse-patient relationship suffers less from of a power imbalance, and an empowered patient seems more likely to state true wishes. So communicating about end-of-life issues can be as important as any other nursing skill.

In her commentary, Riches, the nursing director at St. Giles Hospice in Whittington, England, cites strong public support for the right of terminal patient to choose assisted death, and a preference for euthanasia over PAS. And yet, as the RCN guidelines note prominently, euthanasia and assisted suicide are illegal throughout the UK (which is how UK doctors want them to stay: http://pmj.sagepub.com/content/26/1/23.abstract.)

Riches faults the RCN guidelines for focusing on assisted dying rather than placing that conversation within the crucial and broader discussion of end-of-life issues -- where the need for communication skills is great. 

Within that criticism can be found, perhaps, the root of a significant problem in specialized care in the US -- where discussing dying with patients is something of a dying art. Surgeons don’t like to discuss end of life care, according to the Annals of Surgery; oncologists also tend to stress the positive. Meanwhile, reimbursement for end-of-life conversations is somehow controversial, and palliative care (the specialty known for its communication skills) is often a last resort.

With the MOLST advance directive and assisted suicide the subjects of broad public debate in Massachusetts, UK nurse Riches’ point is a timely one: Terminal patients deserve a more skilled discussion of end of life issues, with how to address assisted suicide just one aspect of it. 

The RCN guidelines are a useful resource for a difficult conversation: 

http://www.rcn.org.uk/newsevents/news/article/uk/rcn_launches_guidance_on_assisted_suicide

Riches’ commentary:

http://bit.ly/rG9DyN

Euthanasia: The Terminal Cancer Patient's View

Interesting conclusion from a Swedish study of dying cancer patients’ opinions regarding euthanasia: “Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.”

http://pmj.sagepub.com/content/26/1/34.abstract

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?

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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/