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/