Where Should the Doctor Draw the Line?

Last night I joined a colleague in a conversation with medical students about medical futility, the relatively infrequent but damaging dispute between a patient or surrogate decision maker demanding treatment and a physician who believes it holds little or no therapeutic promise. 

This morning I read online a Wall Street Journal piece on the apparently growing practice among pediatricians of firing families that refuse vaccinations.

In the first case, the patient is demanding therapy against the physician’s best judgement. In the latter, the patient is refusing treatment against the physician’s best judgement.

Clearly, “the customer is always right” doesn’t apply to medical practice. But in a system that treasures patient autonomy, when is it appropriate for a physician either to deny an available treatment, or insist on one? When must a physician do so? 

Medical Research in the Rearview Mirror

What medical research being performed today -- and considered acceptable and ethical by contemporary standards -- will not fare so well in the opinion of future generations? 

This is the provocative question posed by the journal Nature in Hypocritical Oaths: History judges some research as unethical, despite approval at the time. 

The Nature essay comes in response to the revelation of tests conducted without consent on more than 5,000 Guatemalans, at least 1,300 of them infected with sexually transmitted diseases, as part of a U.S. Public Health Service research project from 1946-48.

At least 83 people died, and many others were gravely harmed by treatment so obviously barbaric by today’s standards. Victims included prisoners, soldiers, the mentally ill and commercial sex workers. 

Though the Guatemalan research was conducted at roughly the same time as the Nuremberg Trials --  which revealed research atrocities of Nazi Germany -- it did not come to light until 2010, revealed by the Obama administration (NOTE: correction in Comments) with a formal apology to the Central American country. 

The horrid story has led to recommendation of new rules to protect volunteers in human-subject experiments, and the Obama administration has allocated funds to fight sexually transmitted diseases in Guatemala.

In a recent editorial, the Washington Post called the apology from the U.S. government insufficient and recommended that compensation should be paid to victims or their survivors. “It should not take a lawsuit to prompt the government to do the right thing,” the Post editorial said.

The CEC’s report for the Presidential Commission on Bioethical Issues, Advocacy for Research Participants, can be read here. 

Palliative Care Anyone?

Two bits and pieces converge - suggestions to make palliative care primary - when cancer is diagnosed and in place of current hospice programs.

ASCO suggests that in treating some cancers, palliative care should be made available immediately upon diagnosis.

In the same month, former hospice director Hunter Groninger, MD (now at NIH in the Pain and Palliative Care Service) suggests that home-based palliative care may be an alternative approach to the current Medicare-funded limited hospice benefit . He writes:

"A more radical approach might replace the hospice benefit with home-based palliative care, similar to the model studied by Richard Brumley and colleagues and described in the July 2007 Journal of the American Geriatrics Society. Patients with advanced congestive heart failure, cancer, or COPD were given symptom-focused interdisciplinary supportive care at home that was similar to home hospice care, but with important differences. Under the program, patients could participate if their expected life expectancy was less than twelve months, rather than six; they could continue receiving disease-modifying therapies; and the palliative care physician actively coordinated care among all of the doctors involved, to help diminish fragmented care. The results? This home-based palliative care intervention greatly reduced the costs of care, prevented hospitalizations and emergency department visits, and improved patients’ satisfaction."

Our current approach to end-of-life care is stymied by the lack of prognostic certainly -- we just don't know when someone is going to die and we don't provide palliative care services throughout an illness because no one knows if it's really the "last illness" or just one more illness along an excruciating long road to that last illness.

The current suggestions (providing palliative care immediately upon a cancer diagnosis and in place of the time-limited hospice benefit) are progressive, creative, and deserve a closer look

Life & Death: A Perfect Storm in 2012

I recently read about a Seattle hospital's merger into a company that followed the moral teachings of the Roman Catholic church in its policies, most notably with regard to life’s beginning and ending.

Along with Oregon, Washington is one of two states in the country where voters have sanctioned the legalization of physician-assisted suicide for the terminally ill, a sanction that couldn't be honored in a Catholic-run hospital. But can a hospital refuse treatment voters have approved?

A similar hospital merger in Louisville was stopped by Kentucky Governor Steve Beshear in late December over concerns that included restrictions in reproductive services. "In my opinion,” the governor said, “the risks to the public outweigh the potential benefits."

According to USA Today, in Troy, NY, a maternity ward was created, free from Catholic restrictions and separately licensed, on the second floor of a secular hospital taken over by a Catholic system. And to ease concerns about affiliating with a Catholic system, Swedish Medical Center in Seattle agreed to fund a Planned Parenthood office next door. 

“In the past few years, proposed mergers between Catholic and secular hospitals in Louisville, Ky., and Sierra Vista, Ariz., have collapsed in part because of concerns about the church's bans on abortions, in-vitro fertilizations and sterilizations,” USA Today reported recently.

San Francisco-based Catholic Healthcare West, its growth prospects compromised, is ending its Catholic affiliation and changing its name -- to Dignity Health, not to be confused with Dignity 2012, the organization promoting physician-assisted suicide in Massachusetts.

I recalled these scenarios this week as I read about the staunchly Catholic GOP candidate Rick Santorum’s primary night sweep; criticisms by Santorum, House Speaker (and Catholic) John Boehner and others of President Obama’s controversial new contraceptive policy; and the state Supreme Court declaring unconstitutional Georgia’s ban on advertising assisted suicide. (The practice of assisting in suicide isn’t actually illegal in the state, only the advertising of it.)

Throw in California's newly overturned Proposition 8, and the separation of church and state is becoming a perforated line at best, or perhaps a rift.

In the Georgia ruling, the court suggested the state could formally legalize assisted suicide, and perhaps that is what Georgia legislators will do (NOTE: See correction in attached Comments). Meanwhile, in Massachusetts (39 percent Catholic in 2008), the question of legalizing physician-assisted suicide will be put to the voters in November.

Life, death, faith and choice are in for a profound going-over this election year. 

Georgia Court Rules for Suicide Proponents

What comes next, now that the Georgia Supreme Court unanimously has sided with suicide proponents who said their free speech rights were violated by a state law criminalizing assisting in suicide?

Four members of the Final Exit Network will not stand trial on charges that they assisted in the death of a 58-year-old cancer patient. The Supreme Court's ruled that Georgia law violates free speech clauses of the U.S. and state constitutions. 

And yet Georgia doesn’t actually forbid assisted suicide, but since 1994 has banned publicly advertising it, apparently in response to concerns that the state might become known as an assisted-suicide destination. As such, Georgia law seems something of a don’t ask, don’t tell for assisted suicide.

The suicide at issue did not involve a physician’s prescription, but a tank of helium and an “exit hood.” The court said lawmakers could have banned all assisted suicides without restricting speech, or banned offers to assist in suicide that were followed by the act. 

"The State has failed to provide any explanation or evidence as to why public advertisement or offer to assist in an otherwise legal activity is sufficiently problematic to justify an intrusion on protected speech rights," the ruling said.

Physician-assisted suicide, which will be on the ballot in Massachusetts in November, already has voter approval and is practiced in Oregon and Washington, while the Montana Supreme Court has deemed it acceptable medical treatment. In Hawaii, a legislative effort to legalize the practice stalled last year, and the state attorney general recently said a physician assisting in a suicide “could be charged under Hawaii's manslaughter statute." 

Will Georgia lawmakers now specifically address the legality of assisted suicide? And does the Georgia ruling have any ramifications for Massachusetts? 

Read more: http://www.foxnews.com/us/2012/02/06/ga-court-overturns-assisted-suicide-restrictions-1677804893/#ixzz1ldSzck00

Care & Collaboration

I’ve got a bias. Whether I’m trying to understand disputes over medical futility or distinguish palliative sedation for the dying from assisted suicide, I’m drawn to the nurse’s perspective. No one works more closely with the patient’s best interests.

My bias is rooted in heavy reliance on nurses during my daughter’s life-threatening illness. My daughter was cured, I emerged relatively sane, and while physicians accomplished what was impossible in my own childhood, it was nurses who responded at the push of a button, won our confidence and trust, and held our hands on the long walk into the new normal: Brooke, Suzanne, Michael, Phaedra, the other Brooke. It’s a long list.

Now, in trying to comprehend medical futility for a Community Ethics Committee study, it breaks my heart to think of a nurse devoted to a patient’s best interests but trapped delivering harmful care to a dying patient on life support who may feel nothing except the agony of a dressing change on deteriorating skin. I’m unclear on what the CEC might say to help the situation, but I’m glad we’re trying.

I’ve also discovered that it’s much easier to say, “Stop putting off the end-of-life conversation,” than to understand the forces that put it off. That Americans don’t want to acknowledge mortality is part of the problem, as is a physician’s aversion to admitting defeat. but acknowledging the inevitable before the end is near is crucial to good medical care, isn’t it? So bringing palliative specialists into the dialogue long before curative or therapeutic options are spent makes a lot of sense.

After spending days reading and writing about Amanda Trujillo, the Phoenix nurse fired for somehow overstepping bounds in advocating for a dying patient, I’m now studying a transcript of the roundtable discussion “Palliative Care in the ICU”  in the Journal of Palliative Medicine. There’s much useful information in it, especially with regard to a more collaborative approach to medicine that would increase the influence of palliative care from the ER to the ICU.

The roundtable was organized by the IPAL Project, an initiative from the Center to Advance Palliative Care. IPAL stresses the importance of a unified team using ICU palliative care quality indicators and ensuring that the spiritual, emotional and communication needs of patients are addressed.

The roundtable was a remarkable gathering of leading palliative care lights, including Kathleen Puntillo, an RN and Doctor of Nursing Science in the Department of Physiological Nursing at UC San Francisco. She spoke insightfully about the nurse's role and responsibilities in palliative care, and about the cost of marginalizing palliative care to the dying process. 

“We still oftentimes maintain this very narrow focus that sees palliative care only as end-of-life care, and if the patient is not deemed to be at the end of life, then it is not time to call in palliative care services,” Puntillo said. “This narrow focus prevents patients and their families from getting the different types of palliative care that are available.

“I think there are great challenges in ICUs and for ICU patients if we are not at the point where we are saying this patient is imminently dying. We have this tension, if you will, between the patient's physiological instability and the need for symptom management. Indeed, many patients in ICUs suffer from many symptoms such as fatigue, thirst, anxiety, and pain, so they have a need for symptom assessment and management. But again, this need for interventions or thoughts of interventions for symptoms often gets waylaid by the concern that we are going to make patients physiologically unstable.”

A devotion to rescue leaves little space for considering or discussing other scenarios.

“In many surgical ICUs, depending on the specialty, the focus is on rescue.” said critical care surgeon Anne C. Mosenthal of New Jersey Medical School. “There is less willingness to acknowledge some patients may die, and that palliative care is necessary. ”

How, then, to make palliative part of the fabric of care, and not a last resort waiting for the “real” care to be exhausted? 

“Some of the ICU clinicians are very proud and protective of the work they are doing in the ICU and the challenge of having a consultative service come in can be quite difficult,” said licensed clinical social worker Colleen M. Mulkerin of Hartford Hospital. “Trying to support and integrate some of the palliative care concepts and practices into what the critical care teams are doing can be so valuable. With a little bit of support and education, we as palliative care specialists are able to improve the ability of the ICU team to do family meetings, to involve families on rounds, and develop better ways to integrate patients' values and preferences for care.”

A collaborative approach, in other words.

“Effective quality improvement requires an interdisciplinary team effort,” said Dr. J. Randall Curtis of Harborview Medical Center/University of Washington. “The team needs good interdisciplinary communication and collaboration. These teams require multiple disciplines working together as opposed to professions working in silos. Our health care system historically has been very hierarchical in its design, and one of the lessons of these quality improvement efforts is that we need to find ways to empower everybody on the team to address issues and problems that they see arising regardless of their discipline or profession.”

I’ve captured only some of the roundtable highlights here, and not all participants. The full transcript is not to be missed by anyone interested in improving EOL care.