Saturday, December 31, 2011
Friday, December 23, 2011
Thursday, December 22, 2011
Tuesday, December 20, 2011
Sunday, December 18, 2011
Saturday, December 17, 2011
- “What is your understanding of your condition?”
- “What worries you about your situation?”
- “How do you make decisions in your family?”
- “What is important to you right now when making decisions?”
- If the patient is not capable, document this before proceeding to step 2.
- See hierarchy of decision-makers (from Ontario’s Health Care Consent Act).
- Document decision-maker(s)
- “Is there a living will?”
- “Do you know your role?” (e.g., to act on prior expressed wishes or best interests)
- “ Do you know what the patient would have wanted in this situation and what was important to this person?” (share beliefs or stories)
- Document what you learn.
- “ 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.”
- “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.”
- “ [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 …”
- “When a treatment is no longer indicated, we will let you know that we are no longer providing it.”
- “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.”
- “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).”
- Document that you have explained the role of CCB. Give the family time to ask questions.
Wednesday, December 14, 2011
Monday, December 12, 2011
"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."
Friday, December 9, 2011
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.”
Thursday, December 8, 2011
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.
Wednesday, December 7, 2011
Doctors die, but not like everybody else.
They know what’s possible and what’s not.
Or what’s probable.
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:
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.
Tuesday, December 6, 2011
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.
Monday, December 5, 2011
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
Saturday, November 19, 2011
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.)
Wednesday, November 16, 2011
“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:
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.
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?
Thursday, November 10, 2011
Monday, November 7, 2011
Tuesday, November 1, 2011
Wednesday, October 26, 2011
Thursday, October 20, 2011
Monday, October 10, 2011
Most such end-of-life scenarios that descend into intractable dispute stem from disagreement over the medical judgement of futility -- but not all do. There are cases of “reverse futility,” which really aren’t about the denial of futile care at all. In these cases, medical staff somehow transcend patient or family opposition and proceed with therapy.
Futility cases typically end in the patient’s death, with court proceedings abandoned. But two cases this summer both were resolved in court, one after the death of the patient, the other in which the patient survived. Both involved, not futility, but therapies delivered against stated wishes. And both claimed malpractice.
In Jones v. Ruston Louisiana Hospital, daughters of a man who died more than two months after a major cardiac event sued the hospital for ignoring a do-not-resuscitate order. A lower court ruled that unwanted resuscitation was not medical malpractice, and did not meet a requirement for medical review. An appeals court agreed.
In DeGeronimo v. Fuchs, a New York woman in her mid-thirties sued for having received an allogenic blood transfusion against her wishes and Jehovah’s Witness faith. The woman had gone out of her way to find a doctor to see her pregnancy through and respect her faith-based wishes, but complications following childbirth included surgery and life-threatening blood loss. For reasons related to the pregnancy, none of her own blood had been collected.
The court said it was clear that the transfusion had saved the woman’s life, that her husband had signed off on the life-saving measure, and that the woman herself had nodded consent “in extremis,” though she had no memory of this afterward.
The court found “no precedent for finding medical malpractice when a blood transfusion was the proximate cause of saving a life ... There is no cause of action for ‘wrongful life’ in the state of New York.” Instead of malpractice, the court said, the plaintiff should have sued for battery.
On the legal scholar and medical futility expert Thaddeus Pope’s blog, where I learned of these cases, a commenter said: “In the Jehovah's Witness ruling, what stood out to me was the issue of capacity and the ethics of ‘re-consenting’ a patient and surrogate in extremis. ... Is a policy of required reconsideration for Jehovah’s Witness patients in life-threatening situations fair to them? If it is, then more thought should be given to the timing of these conversations. Having been involved in similar situations to this case, it is very easy to believe that both the physician's account and the plaintiff's non-recollection of the conversation were honest.”
I’d be interested to learn about other instances of “reverse futility.”
Monday, October 3, 2011
Then my daughter was born a month early and they called her premature, which was absurd to me. I was in my forties and a father for the first time, so to consider her early made no sense on my watch.
Recently, premature threw me another curve. I’ve been reading and rereading a lengthy Lancet Oncology Commission report, as background for the Community Ethics Committee’s study of medical futility.
The Lancet study (Delivering Affordable Care in High-Income Countries, September/October 2011) shines light on aspects of end-of-life care that can derail honest dialogue -- notably cost (economic and otherwise) and rationing. This is the stuff of “death panel” paranoia. But delivering health care that society and individuals can afford is so urgent that any honest assessment must take them into account.
Not all medically futile cases that descend into intractable dispute between doctor and patient/family can be traced to a moral gap between science and religious belief, but many can. Which is why this phrase in the Lancet report caught my eye: “the worldwide cost of cancer due to premature death.”
Simply agreeing on a definition of “premature death” might itself be futile. Is it simply life that ends earlier than expected from other than natural causes? Premature death has meaning in a medical sense, but what is its meaning in a religious sense? And do the definitions share any connective tissue whatsoever?
In attempting to understand medical futility, I studied (mostly through newspaper and online reporting) the case of Samuel Golubchuk, an elderly man in Winnipeg, Manitoba, who had suffered serious brain damage and whose condition was diagnosed as irreversible. Lacking therapeutic or curative options, and questioning the continuance of more than comfort care, ICU doctors wanted him removed from life support.
Golubchuk was beyond speaking for himself, but his adult children argued that to discontinue life support would go against the man’s lifelong religious beliefs as an Orthodox Jew -- specifically, the teaching against hastening death. But in that tragic case, which over time resulted in half the physicians on a small ICU staff resigning rather than continue treatment they considered to be torture, it seems never to have come up that Judaism also teaches against prolonging the dying process.
Many religious believe time of death “is written” -- that God knows when death will occur, and humans shouldn’t interfere. If that is true, how can anyone know when medical life support is appropriate, or when it merely prolongs dying?
Cases such as Golubchuk’s are relatively rare, but they are enormously harmful to families and caregivers in dispute -- not to mention the unresponsive patient made to endure the “care.” The disputes tend to be resolved only by the patient’s death, as was the case with Golubchuk.
It pained Golubchuk’s attending ICU physician that the family’s religion-based demand to continue life-saving efforts seemed to have no regard for prognosis. The physician’s options became to “do harm,” or to resign.
There is nothing premature about the Lancet Oncology report’s main point: that the cost of cancer care is unsustainable. It would seem modern success at cure and care is making us more selective with both.
More on the Lancet report will follow.
Wednesday, September 28, 2011
Clearly, as the Community Ethics Committee studies medical futility, one thing we’ll need to consider carefully is the value placed on patient autonomy.
I find this passage from Atul Gawande’s book “Complications” insightful:
“Where many ethicists go wrong is in promoting patient autonomy as a kind of ultimate value in medicine rather than recognizing it is one value among others. Schneider found that what patients want most from doctors isn’t autonomy per se; it’s competence and kindness. Now, kindness will often involve respecting patients’ autonomy, assuring that they have control over vital decisions. But it may also mean taking on burdensome decisions when patients don’t want to make them, or guiding patients in the right direction when they do. Even when patients do want to make their own decisions, there are times when the compassionate thing to do is to press hard: to steer them to accept an operation or treatment that they fear, or forgo one that they’d pinned their hopes on. Many ethicists find this line of reasoning disturbing, and medicine will continue to struggle with how patients and doctors ought to make decisions. But, as the field grows ever more complex and technological, the real task isn’t to banish paternalism; the real task is to preserve kindness.”
(The Schneider reference is to Carl Schneider, professor of law and medicine at University of Michigan and author of “The Practice of Autonomy.”)
Tuesday, September 27, 2011
Says the report’s lead author, Dr. Richard Sullivan: "We're on an unaffordable trajectory. We either need to manage and reduce the costs or the cost will increase and then inequality rises between rich and poor."
In particular, the Lancet report criticizes care considered medically futile -- in particular, pricey chemo for no medical benefit among the imminently dying.
According to the BBC: “The report says solutions fall into two categories: reducing the cost of services or reducing the number of people using them.”
Monday, September 19, 2011
The author is Robert Roper, a Johns Hopkins writing instructor, and I found myself thinking of Roper as a survivor before his father actually died, because in many ways he already was gone. But he wasn’t dead, and wanted to be, his son believes. His father would have wanted Roper to get a gun and end his misery. Roper could almost hear his father asking for that very thing, or so he writes. (http://bit.ly/oAJhw3)
Roper’s piece is yet another compelling look into a subject -- life, and how it ends -- around which our culture struggles to find common ground or meaningful vocabulary. Meanwhile those to whom we turn to care for the dying are viewed with distrust by families who find themselves, often quite suddenly, in the impossible position of speaking for someone who no longer can speak for himself.
We like to think of ourselves as quite highly evolved, and yet we can be abysmal communicators, especially in matters of mortality, faith and reason.
The lead story in the Metro section of Monday’s Boston Globe concerned the Boston Cardinal’s sermon imploring Catholic lawyers to put their weight behind opposition to a movement to legalize physician-assisted suicide in Massachusetts.
“We are called upon to defend the gospel of life with courage and resolve,” Cardinal Sean P. O’Malley said. Agree or not, there is rare and welcome clarity in the statement.
Before Death With Dignity can become a question on the 2012 ballot in Massachusetts, proponents need nearly 70,000 signatures of valid registered voters. Proponents want to make it legal for physicians to prescribe a lethal dose of prescription drugs to the terminally ill.
One fear of legally empowering physicians to assist in a suicide is that it “would be difficult or impossible to control, and would pose serious societal risks.” It might surprise you that this slippery slope argument comes not from a religious denomination, but from the American Medical Association. The AMA calls physician-assisted suicide “fundamentally incompatible with the physician’s role as healer.”
There is helpful clarity in that statement, too. Can a physician kill as well as heal? Is doing both too much to ask?
Dr. Marcia Angell, former editor of New England Journal of Medicine, is a longtime proponent of physician-assisted suicide. She told CommonHealth at WBUR.org: “For the patient, this is not a choice between life and death; it’s a choice of how to die -- slowly, or sooner but more peacefully.” (http://bit.ly/p1FYOg)
To disagree with that seems heartless. And yet to agree that this is not about choosing between life and death seems a victory of compassion over reason, because the practice clearly expedites death. For the best of reasons, perhaps, but the practice still expedites death.
The Community Ethics Committee, of which I’m a member, is studying disputes over futile treatment of the terminally ill, a particularly harsh example of society’s difficulty accepting mortality as it plays out most often in hospital intensive care units. Typically in cases of medical futility, a patient is determined by the care team to be in the process of dying, but the family wishes aggressive treatment to continue.
Distrust and bad communication are hallmarks of such disputes. Families are seen as irrational, doctors as heartless. In the middle are nurses, delivering treatments they deem harmful upon defenseless, dying patients.
Last spring, the CEC completed a serious attempt to clarify the line between caring and killing. The CEC’s report, “Palliative Sedation – Continuous Deep Sedation until Death as Comfort Care,” was submitted to the Harvard Ethics Leadership Group.
“Both euthanasia, where the physician is the agent administering a lethal substance, and physician-assisted suicide, where the patient is the agent administering a lethal substance, have as their chief end the death of the patient,” the CEC said in its report. “The primary goal in either circumstance is not to relieve intractable pain but, rather, it is to end life. The CEC felt strongly that the primary goal of Palliative Sedation is to relieve intractable pain and, as a result, it falls into an ethically supportable and potentially advisable treatment option.”
Physician-assisted suicide, even for the most compassionate of reasons, involves the healer in expediting death. It was important to the CEC, in finding ethical justification for palliative sedation, to ensure to the degree possible that patients died from the progression of their disease and not from the sedation.
The CEC supported the use of palliative sedation while deliberately distancing ourselves from endorsing physician-assisted suicide. The terminally ill in intractable pain should have access to relief - a medical treatment option to relieve their pain but not cause their death. To us, it was the difference between caring and killing.