An article this morning (Obamacare Will Question Your Sex Life) warns that Obamacare will require physicians to ask patients a wide variety of personal questions not relevant to the physician’s specialty or to the patient’s condition. The information will be stored in the patient’s electronic health record which will, in turn, become part of a giant national electronic database. Continue reading
Rene Henry Gracida, Bishop Emeritus of Corpus Christi, Texas, hosts a blog that is a treasure chest of religious, political and philosophical gems. You can read his brief biography (here), and a little about his World War II Army Air Corps service (here). The video of his 50th jubilee homily (link here) is inspiring.
HOWEVER, this post isn’t about Bishop Gracida. It is about two of his guest bloggers and their rousing debate a few weeks ago on the subject of hospice versus “palliative care.”
Father Angelo, a priest with over a decade of experience caring for dying patients, was somewhat critical of palliative care. Ralph Capone, MD, medical director of the palliative care consultation service for University of Pittsburgh Medical Center-McKeesport Hospital, shot back defending “authentic” palliative care as defined by the Center for Palliative Care (CAPC; pronounced “cap-see”). Dr. Capone suggested that patients and families just need to do a little homework to find the palliative care teams that honor sanctity of life as opposed to a quality-of-life ethic.
I have a few thoughts concerning Dr. Capone’s comments.
Patients live longer. Really?
Dr. Capone contends that patients live longer with palliative care as opposed to traditional medicine, and cites a study by Temel et al. to defend his argument. There are a few problems in citing that report. First, the study was limited to cancer patients; it says nothing about a multitude of other end-of-life scenarios and diseases. Second, the researchers studied only a relative handful of patients at one site; it is questionable whether that sample is representative of the entire country. Even if the sample was representative, patients who are flagged for palliative care generally have a multitude of comorbidities, and the variability of those individual patients makes it difficult to make categorical assumptions. Third, I can cite at least one other study that suggests just the opposite; that palliative care results in shorter life. (Brumley et al., 2007)
Euthanasia, stealth and otherwise.
With regard to euthanasia: Dr. Capone asserts that euthanasia is more likely in hospice than in palliative care outside of hospice, and he narrows the definition of euthanasia to what he calls “stealth euthanasia:” overdosing and terminal sedation (sedation while withholding nutrition and hydration). He and Julie Grimstad, writing in Ethics and Medics, attributed “stealth euthanasia” to Choice in Dying, Partnership for Caring, and the National Hospice and Palliative Care Organization. They quoted Ira Byock, Joanne Lynn and Timothy Quill as examples. What they fail to mention is the fact that those people and organizations were part of the small group that defined palliative care as it is known today. Partnership for Caring (founded by Byock) formed the core of the little Steering Committee that wrote palliative care’s Clinical Practice Guidelines. Most, if not all, of the 20-member Steering Committee were involved in Byock’s “Promoting Excellence” projects. The Steering Committee was funded by the Mayday Fund whose executive director, Fenella Rouse, was fresh from her role as director of the Society for the Right-to-Die. At least half of the members were dependent on funding from Soros’s Open Society Institute, and at least a quarter of the members were dependent on federal funding through the NIH.
However, Father Angelo wasn’t talking about terminal sedation. He was talking about palliative care teams pushing patients into decisions regarding life-saving treatment. Although the palliative care community (CAPC and the like) is always eager to defend the so-called “constitutional right” to refuse treatment, for some reason it is AWOL when it comes to cases such as that of Terri Schiavo.
Almost more than pain management and sedative use, the “right to refuse treatment” was a central tenet for those who drafted the Clinical Practice Guidelines over a decade ago. Shortly before Choice in Dying rebranded itself as Partnership for Caring, and became the administrative home for the Steering Committee, it announced the remarkable discovery of a “Constitutional right” to refuse treatment, which it pledged to uphold:
An individual has a constitutional right to request the withdrawal or withholding of medical treatment, even if this procedure will result in the person’s death. Honoring a person’s right to refuse medical treatment, especially at the end of life, is the most widely practiced and widely accepted right to die policy in our society. . . .The U.S. Supreme Court affirmed the constitutionality of honoring a refusal of treatment in the case of Nancy Cruzan in 1990.
Apparently there haven’t been enough takers on that “right to refuse treatment” idea. Patients and families keep requesting life-saving treatment, so the focus has shifted to convincing families to forgo treatment for their loved ones. The “right to refuse treatment” is slowly morphing into a responsibility and duty to refuse medical treatment.
Consensus building — or bullying?
Dr. Capone leaves readers with the impression that Father Angelo’s experience – seeing families pushed into palliative care and limits on life-saving treatment – is a rare or isolated experience. Not only is it not rare, it is planned and it is widespread. A 2011 Journal of Palliative Medicine article provides solid evidence. A decade after he helped draft the Clinical Practice Guidelines, Andrew Billings, MD, conducted an extensive literature review to prove that “family meetings in end-of-life care, especially when conducted prophylactically or proactively, have been shown to be effective procedures for improving family and staff satisfaction and even reducing resource utilization.” [My emphasis. And my comment: Good for the staff; what about the patient?]
Among other things, the article makes two interesting points: before there can be consensus among family members, there must be consensus about goals among palliative care team members; and for palliative care, often the ultimate goal really is “less treatment.” Billings provides a helpful table summarizing key points from a dozen articles indicating that interventional palliative care and ethics consultations resulted in less life-sustaining treatments, “reduced use of life-sustaining treatments in nonsurvivors,” “reduced resource utilization after DNR,” “reduced ICU length-of-stay after comfort care,” and less “nonbeneficial resource use.”
Keep an eye on subjective qualifiers such as “nonbeneficial” and “appropriate” (as in “appropriate treatment”). Dig deeper into those qualifiers and you’ll find judgments on quality of life. Triggers for palliative care consultations, such as those found at the CAPC website (here), and in an article by Meier and Weissman, include quality of life indicators such as declining ADLs (activities of daily living), feeding-tube placement in cognitively disabled people, and even “multiple hospitalizations.” Palliative care is recommended in all of these scenarios. But palliative care has multiple, morphing definitions. It is end-of-life care; it is not end-of-life care; it is curative treatment and it is not curative treatment; it is symptom management; it is consensus and conflict resolution; it is not prolonging death; it is not prolonging life; it is psychological counseling; it is sending the patient home for a comfortable, well-planned death. Which of the many palliative care definitions will be applied to the disabled or chronically ill patient with multiple complications and “multiple hospitalizations”?
This isn’t the 1980s, and this isn’t the medicine it once was.
Without a doubt there are many excellent, dedicated, pro-life palliative care doctors and nurses at the bedsides of patients all across the country. However, these good doctors and nurses simply have no idea the extent to which “palliative” – as they once knew it — has been changed on a grand national scale.
So when Dr. Capone suggests that patients should seek out a life-affirming palliative care program, you have to ask whether this is a realistic solution. First, you had better hope that you like the CAPC brand of palliative care, because 60% of hospitals with 50+ beds are using palliative care that is affiliated with CAPC. Moreover, as Father Angelo remarked, if you are extremely ill – sick enough to be in a hospital – you are hardly in a position to do a survey of alternative treatment centers. I’ll add that many times there is no alternative at all, as indicated by a CAPC report that one out of six hospitals in the U.S is a sole community provider – meaning that the nearest alternate hospital is over 35 miles away. On top of that, 37% of those “sole providers” use palliative care, which means if you are in one of those hospitals, you’re stuck with what you are given.
The medical landscape has changed dramatically since the 1980s when palliative care was synonymous with hospice, when “the right to refuse treatment” was a greater concern than being discharged from the hospital too early, and when the government wasn’t openly discussing national health care rationing schemes to fix the shortage problems caused by its endless centralized planning, redistribution, and the toxic effects of meddling with payment methods. In such a context, one is well-advised to be skeptical of a referral to palliative care.
Here’s a bit of irony.
The Obama administration called for comments prior to launching the third phase of its plan to push everyone into electronic health records (EHRs). The AMA and other medical societies responded with requests to postpone implementation. CHIME (College of Healthcare Information Management Executives) warned:
We strongly caution policy makers not to expect that health professionals will be willing and able to capture significant amounts of structured data—unreasonable expectations in this regard are not only likely to compromise patient care (by unduly interfering with physician-patient interactions) but also lead to an anti-EHR response by the physician community.
It was a different story when it came to comments from the hospice and palliative care associations. They rather liked the course the administration is taking. In fact, they recommended that electronic records should collect even more data about patients and their families than was contained in the original plan.
Yes, these are the same hospice and palliative care professionals who are always moaning about the “technological imperative.”
Palliative care (i.e., the National Coalition for Hospice and Palliative Care (NCHPC)) submitted comments in January. You can read the letter here. (See also comments blogged by Joanne Lynn.) NCHPC recommended that electronic health records collect data for research; compel patients to make decisions on future treatments; and automatically flag patients who are candidates for symptom treatment in lieu of more expensive and unnecessary aggressive curative treatments.
In one section, NCHPC suggests that the controversial POLST form might be used as a model to collect data, to coax “health systems who are not so forward-thinking.” They write (emphasis is theirs):
Goals of care can and should be captured as structured data so that future measures can be developed related to goals of care that will not require laborious chart abstraction … To help imagine what this might look like, we cite the below example from an eMOLST1 form. MOLST forms [a version of POLST] are only appropriate for those very ill individuals with very poor prognoses, but [below is] illustrative of what is possible for goals of care generally. Indeed, forward-thinking health systems are … developing EHRs that can record goals of care. The meaningful use program should include objectives for health systems who are not so forward-thinking in leveraging EHRs in this way.
Generally speaking, advance care planning aids work in a two-step process. Start by assessing the patient’s “values and beliefs” – i.e., how wretched is your quality of life now; how wretched will it be? Are you now, or will you ever be, a burden to loved ones? (multiple choice, the better to pigeon-hole patients):
The next step is to set goals. NCHPC’s sample:
So it appears that organized palliative care is in favor of the Technological Imperative when it aids and abets the Quality-of-Life Imperative.
Here is my question: How often will we be subjected to these types of questions, and from whom?
A quick note on the people who signed the NCHPC letter speaking on behalf of the world of palliative care: Three of the four signatories are Timothy Quill, Diane Meier, and Sean Morrison. “Tim” Quill (as he is known by his friends in the palliative care world) is infamous for helping a patient to commit suicide, and then writing about it. Meier, Quill and Morrison later co-authored a controversial study of (illegal) physician-assisted suicide practices. Shortly thereafter Meier had second thoughts about advocating the legalization of physician-assisted suicide. Coaxing patients out of life-saving treatment on the basis of the quality of life imperative might be another matter.
Poor people “over the age of 60 who are living with one of 9 life-limiting conditions” are being subjected to an ongoing experiment in care transitions in the Akron, Ohio, region.
Medicaring.org gave the project a very favorable review just a few months ago. The study is called the “PEACE Trial (Promoting Effective Advanced Care for Elders), a project involving Summa Health, the Area Agency on Aging (AAA), University of Akron, Kent State University, and the Northeastern Ohio Universities of College of Medicine and Pharmacy.
It’s all very scientific. As Medicaring.org explains:
The randomized controlled pilot study features a geri-palliative care case management intervention for Ohio consumers who are participants in the state’s long-term care Medicaid waiver program, PASSPORT. Frequently, these elders have not documented their advance care preferences, and so arrive in the hospital, where family members are left to make critical decisions for which they are unprepared.
In other words, a social worker or nurse from the Area Agency on Aging will follow the patient home, and later to the physician’s office, to coach the patient on how to take medications and, more importantly, to coach the patient on “appropriate” care and end-of-life decisions:
The PEACE Trial [focuses] on health coaching and patient activation for self management, while promoting advance care planning discussions with primary care providers.
. . . Care managers make two home visits, for example, centered on symptom assessment and advance care planning. They review findings with an interdisciplinary team, which makes appropriate recommendations for the patient and the primary care provider. The care manager next accompanies the consumer to one visit with the primary care provider to discuss advance care goals. Following this, the care manager and the palliative care nurse supervisor make an additional home visit to begin to implement the care plan.
Because Summa has a history of running the PEACE Trial and other case management projects, Medicare and Medicaid (CMS) announced last November that Akron would be awarded funding as a test site for the Center for Innovation’s CCTP project (see Care Transitions in Akron in this AOA presentation, beginning at slide 41.)
PEACE Trial is funded by the National Palliative Care Research Center (NPCRC) in New York City. NPCRC was established in 2005 with a $3 million grant from the Kornfeld Foundation to Sean Morrison, MD. Dr. Morrison was known to be sympathetic to physician-assisted suicide; several years earlier he had co-authored with Timothy Quill an article in New England Journal of Medicine that surveyed how physicians can and do assist suicides. The Kornfeld Foundation had funded a similar NEJM article in 1989. Kornfeld’s objective was clear. As they stated in their Form 990 for the IRS, their mission was to support “the right of the individual to choose the time and manner of his or her death, without undue interference by doctors, hospitals, courts, churches, families or society.”
Let’s be clear: the PEACE Trial is not about physician-assisted suicide. It is not about barbiturate overdosing or gas inhaling in the manner of Timothy Quill or Jack Kevorkian. The PEACE Trial is all about coaching people on making end-of-life decisions.
Co-investigator for the PEACE Trial is Steven “Skip” Radwany. MD. Dr. Radwany is a professor of medicine at Northeastern Ohio Universities Colleges of Medicine and Pharmacy, and medical director for Summa Health System’s Palliative Care and Hospice Services.
Dr. Radwany gained credentials with the death with dignity crowd in 2003 when he called for the withdrawal of nutrition and hydration from Gerald Carpenter, an elderly man who had suffered a stroke in a nursing home.
The death-with-dignity viewpoint on the story is related in a book by assisted-suicide advocate Alan Meisel (here). The news stories concerning the Carpenter case are no longer available online, so we have posted online here the full text, showing the URLs for where the stories were posted eight years ago
Carpenter could open his eyes and move his arms and legs, but he could not eat. A nurse at the nursing home said that Carpenter had said he would want life-sustaining treatment. Carpenter’s son hadn’t visited the father in so many months that it was difficult for the nursing home to locate him. When he was finally contacted, he wanted his father’s feeding tube removed. Dr. Radwany agreed.
Dr. Radwany decided that Mr. Carpenter would not improve, and was therefore “terminal” and should not have hydration and nourishment:
Radwany said it was in Carpenter’s “best interest to discontinue all invasive, life-sustaining measures….”
“It is the consensus among the physicians that he will not improve from this state,” Radwany testified. “He is terminal.”
Bottom line: It’s all about the coaching.
In order to reduce hospitalizations within a community, participants in the care transitions demonstration projects generally use one of a handful of “intervention” programs. A few of those interventions appear on a useful diagram that is posted at the Administration on Aging website (see illustration at right). Though the slide was part of a presentation on “Interact” — just one of the interventions — it presents a good summary of some of the others. POLST is one of those interventions.
CFMC — the National Care Transitions QIO Support Center — is promoting POLST. One of the tools they offer on their website is a flyer for POLST that was created by the QIO for Pennsylvania, Quality Insights of Pennsylvania. Quality Insights is actually a program out of the West Virginia Medical Institute. West Virginia was one of the first states to actively promote POLST, so it is not surprising that Quality Insights is promoting POLST.
While some of the care transitions interventions focus on pressuring patients and families to be responsible for proper medication, symptom identification, doctors’ appointments and so forth, a number of the interventions focus on end-of-life decisions, DNRs, and advance care planning. This is particularly true of interventions involving patients in nursing homes who are frail and might request another trip to the emergency room.
For example, the tool from Interact on “Tips for Starting and Conducting the Conversation” suggests framing the issue of CPR in the negative context:
“Sometimes when peoples’ hearts stop, doctors and nurses try to delay
the dying process … Have you considered whether you would want this or not?”
The rest of the discussion contains carefully chosen “facts” to discourage life-saving measures; facts such as:
The possibility of surviving CPR in a nursing home is very low, and CPR
often results in broken ribs and the need for a respirator (“breathing machine”) in
an intensive care unit.
The Interact tool also discusses “Artificial Hydration/Nutrition” and the supposed dangers of feeding tubes.
These are but a few examples of POLST and end-of-life discussions prompted by the “care transitions” project.
Erik Fromme, MD, is a hospitalist at Oregon Health & Science University who specializes in palliative medicine and is frequent co-author with POLST’s developers. In early 2011 he articulated how POLST and palliative medicine would take a role in “care transitions.” In an article titled “Transitions in End-of-Life Care: the Oregon Trail,” Fromme remarked that “transitions” is a malleable term; useful because it can take on a variety of meanings suitable to meet a number of objectives:
Transitions is a broad term that can refer to moving from one care setting to the next, changing goals of care, changing both care setting and goals (as happens with the transition to hospice care), or even death.
Strong palliative care teams, statewide outreach and education, and programs like POLST allow hospitals and healthcare systems to support patients, families, and clinicians in the inner work of letting go.
Not all of the care transitions interventions focus on “letting go,” but coaching patients and families in end-of-life decisions is a key feature in many contexts.