Wednesday, March 30, 2011


The hospice and palliative medicine blog Pallimed reports (and celebrates) that the Joint Commission in Fall 2011 will begin recognizing hospitals with exceptional palliative care programs. (

The Joint Commission accredits more than 17,000 health care organizations in the U.S., and many states require the accreditation in licensing and Medicare reimbursement.

“This is really important for many reasons,” writes Dr. Christian Sinclair, hospice and palliative care physician and blogger based in Kansas City. “Many hospitals may claim to have palliative care teams, but the members of the team, internal support and integration into hospital culture can vary widely as many who have worked with palliative care programs have seen.”

Indeed, though palliative care’s impact is increasing as public understanding grows and hospice fears subside, the practice remains ghettoized in many systems.

“I do like the (Joint Commission’s) emphasis on the whole hospital program and not just the team,” Sinclair writes. “This may set some higher standards than all teams will be able to accomplish, but then I think that makes all of us strive to do better. ... The suits in the C-Suite might find a new interest in what your program is doing and hopefully (fingers crossed) you might get the resources and staffing to achieve it!”

His optimism notwithstanding, Sinclair took not of this irony: the new cert program’s home is in Disease-Specific Programs. “Palliative care is about people,” Sinclair writes. “I guess we have to keep on educating.”

Tuesday, March 29, 2011


Adult siblings and a physician who could not agree on the end-of-life care of Samuel Golubchuk are somewhat in alignment now, nearly three years after the man’s death, over the perceived shortcomings of a provincial response to their dispute.

A working group’s recommendation that the Canadian province of Manitoba legally empower a panel to settle disputes between patients, their families and doctors was rejected. Other recommendations were accepted, especially the call for public education, improved doctor-family communication, and promotion of advance directives. (To read the reports:

The Golubchuk case underscores the complexity of resolving end-of-life disputes, pitting a doctor and hospital’s professional ethics against an individual’s religious beliefs. At its core are questions of autonomy, nonmaleficence and ultimately the sanctity of life. The toxic role of economics seemed not relevant to this case, and yet media coverage within the pro-life community has portrayed the hospital’s wish to withdraw mechanical life support as a choice for the bottom line over life itself. Such are the depths to which the dialogue can degenerate in such a case. Under a court order to continue life support, Dr. Anand Kumar instead resigned from Grace Hospital, and Golubchuk’s care, which he called “immoral” and "tantamount to torture."

According to CBC News, Kumar supported creation of a review board with legal authority. In this, he agreed with Golubchuk’s daughter, Miriam Geller, who told CBC News that doctors still have the final say in dispute with patients and families. A review panel to decide disputes would have been a better solution, she said.

In rejecting the proposed review panel, Manitoba has opted not to follow the lead of Ontario, where a Consent and Capacity Board has been established -- and only recently, in a case with some similarities, ruled for the family at least in part because physicians had not taken the family’s religious beliefs into account.

The Consent and Capacity Board, which notably doesn’t include physicians, gives Ontario a way to resolve such cases more expeditiously than a court, where patients tend not to survive till trial. Golubchuk, in fact, died while on life support before that dispute reached trial.

Ontario law requires that a patient’s beliefs, values and wishes for care be taken into account in determining the patient’s best interests. I found nothing in the report indicating Manitoba will follow suit (though perhaps this will come through the recommended education and communication). The Golubchuks’ Orthodox Jewish beliefs were central to the dispute, and I’d hoped to see the report address this. Indeed, in my own survey of online media coverage of Golubchuk, I noted many references to the family’s religious opposition to hastening death, but none to the Jewish prohibition against prolonging dying. I’d hoped to see a specific recommendation that in such cases, pastoral support be brought in to improve understanding in both sides of the dispute.

The report and recommendations are thoughtful and worth reading for anyone interested in the complicated terrain of end-of-life decision-making. The review of literature and case studies was extensive. And stopping short of empowering a review panel, in response to those few cases that become stuck in dispute, may prove wise.

And yet, according to the CBC, the College of Physicians and Surgeons of Manitoba has drafted rules for its doctors that say no patient can demand life-sustaining treatment. That’s one more indication this problem isn’t soon going away, in Manitoba or elsewhere.

"Look at the one-year period that in our case, the Golubchuk case, was between the time initial filing was made and the time they scheduled the court case. It was one year for a dying patient," Dr. Kumar told CBC News. “My own personal feeling is that a Consent and Capacity Board similar to Ontario or similar to what's down in Texas is a very good, very open process."

Monday, March 28, 2011

Innovative palliative care offers hope to families of seriously ill children - The Boston Globe

Palliative care for children does not require parents to stop treatment that could halt or slow the progression of their child's disease. A new approach allows in home hospice care for children that includes palliative care while children are still undergoing treatment. The Pediatric Advanced Care Team at Children's Hospital in Boston helps families balance the blessings and burdens of treatment while pursing both treatment and comfort care. For more information in Masachusetts, go to or call 800-962-2973. For palliative care nationally, go to or call 800-658-8898.
Below is a link to a video about this innovative approach.

Thursday, March 24, 2011


I was glad to see the Boston’s Globe editorial endorsement for the “common-sense series of recommendations that all sides of the end-of-life debate can support” from Massachusetts health officials. I was inspired to improve my own understanding of

the end-of-life dialogue, and read online about the Quinlan and Cruzan cases, and the Patient Self-Determination Act of 1991. I won’t revisit those here, but was struck by two things:

In both Quinlan and Cruzan, the physicians and hospitals opposed removal of life support, and the parents had to fight in court to allow death to occur. This is a reversal of how such extreme cases are playing out today, and I’m not sure what that says.

The second is not a reversal, but more of the same. The PSDA of 1991 took an important step in encouraging the education of patients regarding advance directives, but notably left out one significant player -- the physician. Twenty years later, the physician’s role in this conversation remains too controversial to include in Medicare policy.

This seems to underscore the importance of Massachusetts’ effort to encourage the doctor-patient dialogue, and to increase the role played by palliative care specialists.

Here’s where to find the Globe editorial:

Tuesday, March 22, 2011


Princeton bioethicist Peter Singer offers his unique view into the recent rescue to St. Louis of 13-month-old Joseph Maraachli from an Ontario, Canada hospital, where the parents had lost their appeal for aggressive medical treatment. The combination of Singer’s perspective and reader response is quite powerful.


Monday, March 21, 2011


As the Community Ethics Committee undertakes to comprehend and sort through the brutally hard questions around medical futility, a story this past weekend in Toronto Star posed the quandary this way: “Who decides when critically ill patients should be left to die without medical intervention or given every chance to live? Doctors? Patients? Family?”

Twice in recent weeks, a board representing the Canadian province of Ontario has been asked to resolve what critical care doctors and families could not. One patient is a 13-month-old, the other an elderly man, but both are at the end of their lives. And both cases pit the Catholic faithful against medical judgement.

The Star writes: “A lack of legal and ethical clarity around the end-of-life question in Canada has made the decision-making process a perplexing minefield. There are no clear provincial, federal or medical protocols to break the deadlock when the wishes of patients and their families come into conflict with the medical judgment of physicians.’’

The Star told the story of Maria and Desmond Watson, a couple married 69 years. Desmond has spent more than a year at Oakville Trafalgar Memorial Hospital, where the dispute between doctors and Maria over whether to continue aggressive care to keep him alive was decided on Monday in Maria’s favor by the Consent and Capacity Board.

The CCP is a provincial board certain to set off “death panel” alarms for those given to such demonization of humans making hard decisions. According to a provincial website, it consists of psychiatrists, lawyers and members of the general public, and is charged with hearing and resolving health-care disputes largely over consent and decision-making. The CPB only recently denied an appeal by the parents of Joseph Maraachli to force a London, Ontario hospital to perform a tracheotomy on their 13-month-old son, so that he could die at home. “Baby Joseph,” a cause celebre for the pro-life movement, this week was transported by private plane to St. Louis, where a Catholic hospital is expected to perform the tracheotomy.

The organization Priests for Life sponsored the child’s transfer. Rev. Frank Pavone said Joseph "needs to be in a hospital that cherishes life over the bottom line.” Priests for Life will ask supporters to fund this, and such is the dramatic portrayal of Joseph’s rescue on its website that you’d think it was the Raid on Entebbe.

Cost was never mentioned in the hearings regarding Desmond Watson’s fate. And yet the Star reported that Maria “has a stack of bills from the hospital for $700 a day. They began coming in September after she refused to have him discharged to a long-term care facility she says was unequipped to handle his needs. At that daily rate for care, Desmond’s 14-month stay at Oakville Trafalgar rings in at about $300,000 so far. She’s ignoring the bills.”

Maria wonders, “What am I going to do?”

On so many levels, that truly is the question.

According to the Star, Ontario law requires that an incapable patient’s values and beliefs and previous wishes for care be considered in determining their best interests. But during the hearing, Watson’s medical team admitted never having even inquired about Desmond’s values or beliefs. Monday’s ruling for the surrogate is perhaps attributable to this profound oversight. “By any objective medical standard, Mr. Watson should be allowed to pass,” the family’s lawyer, Mark Handelman, said. “Except that’s not how we make decision in this province. We factor in a person’s values and beliefs. That did not happen in this case.”

Both the Maraachlis and Watsons are devout Catholics, but a case could be made that their doctors’ recommendations against a tracheotomy and to discontinue aggressive treatment align well with church teaching.

According to Catholic Catechism: “Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such it should be encouraged.”

And: “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of "over-zealous" treatment. Here one does not will to cause death; one's inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.”

This teaching seems to fit within Judaism’s dual prohibition against hastening death and prolonging dying.

On Monday, palliative care physician Brian Berger told the Star that his hospital, York Central, encourages an early palliative care consultation with patients. “Having borne witness to thousands of deaths, it takes a lot of love to want someone here forever but more love to know when to let go. Letting go is the ultimate form of love, and if you are a religious family you must know that he or she will go to a better place.”

“It is an uphill battle dealing with families who have unrealistic expectations of their loved one’s prognosis and return to a normal life,” Peter Huggonson, an intensive care nurse at Toronto General Hospital, told the Star. Huggonson said he has “seen veteran bedside nurses almost in tears because they believe they have reduced themselves to the level of a torturer.”