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