Saturday, December 22, 2012
On the date and in the hospital where I was born 58 years ago, my friend was allowed to die. It’s what he had said he would want, it’s what the doctors said was occurring, and it’s what his family courageously and compassionately allowed.
My friend didn’t want the catastrophic stroke that had left his brain so badly and inaccessibly damaged. He didn’t want to die and leave his two daughters fatherless. But in the event of a catastrophic event, he didn’t want to exist unable to think, speak, or care for himself. And this was known because he had told another friend and a brother, who were able to communicate his wish when he was unable to, and in so doing helped others in my friend’s family to allow his passing, and not prolong it indefinitely and artificially.
I followed this story from the East Coast as it evolved in Southern California, and so I don’t have any real sense of the truth of decision-making after my friend’s sudden collapse and emergent bleak prognosis.
The timing was striking, not for the simple coincidence of his dying on my birthday, but because my work with Community Voices in Medical Ethics had me following the case of Hassan Rasouli in Ontario, Canada.
Rasouli, 61, has been on life support since Fall 2010, and for much of that time he has been under the care of a medical team in dispute with his wife and adult children over whether to continue keeping him alive. (More here)
The medical team believes it should make the decision on whether to discontinue life support, even if the patient’s surrogates disagree, and is attempting to have a court establish that as legal fact.
The day after my friend died, lawyers for both the medical team and the Rasouli family made their case before the Canadian Supreme Court, which will rule in a case with potential legal ramifications from the UK to the US. Cases concerning end-of-life medical care rarely make it this far in a legal system, because the patient rarely survives till the court date.
Which is a point the Rasoulis’ lawyer underlined with the Supreme Court in disputing that care is futile. “The treatment is 100 per cent effective,” the lawyer said. “It permits him to breathe.”
Lawyers for the hospital made this point: “The purpose of critical care medicine, including life-support measures, is to support the patient long enough to allow recovery from a reversible illness. Where, as in Mr. Rasouli’s case, there is no reversible illness from which he can or will recover, life-support serves no medical purpose.”
So who decides? In determining my friend’s fate, religion played a role in allowing him to be removed from mechanical life support. He was Roman Catholic, and as such would have considered human life sacred. The Rasoulis, devout Shia Muslim, no doubt would agree with that. And yet one man was removed from life support, the other remains on it.
Community Voices, through its Community Ethics Committee, is just now concluding a lengthy study of medical futility, a phrase much simpler than all it is meant to imply. A determination of medical futility -- usually by the medical team, though sometimes by a terminal patient (who, for example, is ready to give up on chemo before the oncologist) -- usually results in agreement on revised goals of care. In the rare cases, though, there is not agreement. And then, who ought to decide?
This question is being asked all over the world, and is especially volatile now in the United Kingdom, where the hospice-inspired Liverpool Care Pathway for the Dying Patient is the focus of heavy scrutiny.
Given what I know of my friend’s death, what I’m learning about the Rasouli case and the controversy over the LCP, I found a blog written by Philip Berry to be illuminating. Berry is a writer and National Health Service consultant.
Berry wrote: “We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.”
Berry explores four questions in particular: Do doctors vary in their practice according to religiosity? Is such variety acceptable? If not, should doctors have to disclose their beliefs to patients? And, should doctors disclose their beliefs in public debate on end of life issues?
He cites a poll finding non-religious doctors “40 percent more likely to sedate than religious doctors” and religious doctors less likely to “discuss end-of-life treatment option with their patients.”
“Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised,” Berry writes. “Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation.”
Later, he adds: “If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy.”
Berry is a proponent of the LCP and more generally quality care for the dying. He is also an atheist, which doesn’t stop him either from noting that “Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity” or crediting the palliative movement’s role in making “the UK's reputation for the care of dying patients ... unsurpassed.”
As Community Voices tries to sort through questions of medical futility and possible ways to resolve the intractable disputes, our running joke is that our endeavor is itself an exercise in futility. But, of course, it’s not a joke, as I was reminded when my friend, as he had said he’d want, was allowed to die.
By Paul McLean at 11:53 AM
Friday, December 7, 2012
I think I’ll ban “pull the plug” from my usage, much as I did years ago, as a journalist, and learned from Strunk & White that people, in print, ought never to “pass away.” They die. Simple and sad as that. Sometimes they die after they are disconnected from a ventilator, feeding tube or other life-prolonging measure.
I’m thinking about this as I begin research into the Liverpool Care Pathway, an apparently effective means of allowing a dignified death while keeping a patient’s wishes and best interests in mind throughout end-of-life medical care -- but which has become quite controversial. Some UK media seem to have gotten aboard the “death panel” band wagon in a big way.
But the reason “pull the plug” is on my mind is that it’s the phrase someone on the West Coast used to describe to me what occurred earlier this week to a mutual friend. He’d been on life support for more than a week, after he suffered a stroke and collapsed in his home. That damage to his brain is irreversible and, despite the suddenness of this catastrophic event, his family has accepted that he would not wish to continue life mechanically prolonged in a vegetative state. He had said as much to another mutual friend on more than one occasion.
I’m sad for my friend and his extended family, and I admire them, and the friend who had the foresight to engage in the conversation about values. I know nothing of the dialogue that has taken place with doctors in making the decision to allow him to die, and perhaps the decision was easy to make, relatively speaking, and it was clear to all that there would be no recovery of any meaningful kind. And yet my friend is from a Catholic family, as am I, and agreeing to the removal of life-sustaining technologies and forced nutrition is no simple step.
When I learned of my friend’s fate, I had just read for the second time UK physician Max Pemberton’s recent piece in The Telegraph, “The Liverpool Care Pathway Leads Away From Pain.” There’s no telling how many times I’ll read it before I’m through. I want to know it by heart. It’s that good.
The Liverpool Care Pathway strikes me as the sort of thoughtful and bold approach to care at the end of life that is very much needed in the United States, especially for those for whom the dying process is prolonged and full of uncertainty.
It needs to be thoughtful because, well, it’s about care of the dying, who have a way of surprising us and not dying when we think they will, and whose own wishes for how they die, if known, can range from "do everything to keep me alive" to "if I'm a vegetable, let me go quickly." And it needs to be bold to overcome the “death-panel fear-mongers,” to borrow a phrase from a recent New York Times editorial. (A thoughtful and bold editorial, I might add.)
Such fear-mongering isn’t unique to the U.S. Indeed, Pemberton’s piece is in part rebuttal to coverage that has made the Pathway out to be more about economics than compassionate care, which, if true, would indeed be unfortunate. It does appear that in some cases, consent was not well informed (good communication shouldn’t be a speciality in medicine). Lawsuits have been filed, and an independent inquiry is under way. (More here)
The Pathway has in some UK media acquired the nickname “death pathway,” which is not meant as a compliment. But my sense is that the Liverpool Care Pathway has a lot more to do with compassionate care and dignity in death, and Pemberton makes this case well.
Also worth reading regarding the Pathway, and the key role nurses play in making it work, is a story in NursingTimes.net. The author, like Pemberton, writes of personal experience with the Pathway, and one notably helpful and compassionate palliative nurse in particular.
“Nurses grappling with life and death issues face incredible pressures; you go into this job to save lives, not to watch them fade away. One possible reason for the lack of communication with some families could well be a reluctance of some nurses and junior doctors to have those incredibly tough conversations with patients and families.”
I'm grateful that this does not seem to have been the case with my friend and those in the thankless position of speaking for him about how he'd wish to die.
By Paul McLean at 9:24 AM
Thursday, December 6, 2012
The Mayo Clinic has come up with these guidelines for engaging dialogue on end-of-life medical care:
Clear communication: Early and clear communication between health care providers and patients or their surrogates is the best way to avoid disagreement over whether medical care should continue. Recent studies show that more than 95 percent of such disputes are resolved through mediated meetings involving physicians and patients/surrogates.
Choose objective surrogates if patients cannot represent themselves: The surrogate's role is to stand in the shoes of the patient and suppress his or her own judgment in favor of what the patient would have done. However, it is important to acknowledge that medical surrogates often struggle to balance their wishes for the patient with the patient's own wishes. Studies have found that not only do many surrogates fail to accurately predict a patient's treatment wishes, but when asked to resolve disputes, they are more likely to show bias by overestimating the patient's desire for continued treatment.
Involve third parties when necessary: When health care providers and patients or their advocates cannot agree on end-of-life care, involving a third party becomes necessary. Beginning in 1992, the Joint Commission, the largest hospital accreditation organization in the United States, required hospitals to establish procedures for considering ethical issues. Hospital-based ethics committees have been the most common response to this requirement.
For more on Mayo work in this area, see http://www.mayoclinic.org/news2012-rst/7183.html
By Paul McLean at 10:33 AM
Monday, December 3, 2012
Interesting recent tweets discovered via hashtag:
1. Medical team of future will be more flexible, female, more team-based, more non-medically trained. (#futurehospital)
2. Does fear of litigation / defensive medicine drive rising demand for secondary care? How can this be addressed? (#futurehospital)
3. Forty percent of young physicians report that they would not go to medical school if given the choice again. (#meded)
4. Why Would Anyone Choose to Become a Doctor? Because they can have the great privilege of doing palliative and hpm. (#palliative, #hpm)
5. Drug reps should not be welcome ... and the doctors working there shouldn't be on industry payrolls. (#futurehospital)
6. Educating your patients: it's not just about a brochure; it's about initiating a dialogue (#meded)
7. Over a quarter of medical registrars are concerned their workload is unmanageable. (#futurehospital)
9. With hospice, people believe you're giving up instead of helping to transition or die w/ dignity (#hospice)
10. In my view issue of prognostication is a red herring. Will always be subjective. Issues of communication and education are vital (#LCP)
By Paul McLean at 12:04 PM
Saturday, December 1, 2012
Saturday’s New York Times story headlined “A Hospital War Reflects a Bind for U.S. Doctors” inspired interesting dialogue and commentary on Twitter. See the original story here. The story tells of how the national hospital efficiency trend is playing out in Boise, Idaho.
As the Times reported, “Boise’s experiences reflects a growing national trend toward consolidation.”
Here’s a glimpse of the reactions on Twitter:
On the Boise battle: 1. W/o transparency about quality, Big Med, under fee for service, produces more care & cost.
@Atul_Gawande Agree that transparency is key. How setting an example in Boston with real-time metrics, not 2- to 3-year old data?
2. To produce real teamwork for patients, we're switching to Accountable Care--i.e., lump sum payment--which makes Big Med necessary.
@Atul_Gawande And it doesn't matter if it is fee-for-service or global. Overall price levels rise when monopolies take charge.
3. There's a chicken-and-egg problem here, therefore. Change payment systems first and then bring in consolidation (#BIgMed)? Or vice versa?
@Atul_Gawande Focus on payment model is misplaced when monopolies exist, e.g., Partners gets higher global AND fee for service rates.
4. In the meantime, without real data about actual quality and cost--i.e., transparency--everyone's flying blind.
NYT article on hospital mergers; No mention what Catholic expansion means for patient services.
For a different perspective on the modern efficient hospital, see Dr. Victoria Sweet’s powerful book, “God’s Hotel” (blogged about here).
By Paul McLean at 3:55 PM