Expert Ideas Without Implementation

Care of Americans in their finals months is getting significant and promising attention. 

On January 29 and 30, a summit of national leaders meet in Washington, D.C., as the Coalition to Transform Advanced Care. Less than a month later, the newly formed Committee on Transforming End-of-Life Care, meets in Washington for the first time.

What might be accomplished? And how soon?

The answer may be in Massachusetts, but it’s an answer in progress. 

“I am truly baffled,” Dr. Lachlan Forrow, director of ethics and palliative care programs at Beth Israel Deaconess Medical Center, told the Boston Globe. “We are making practical recommendations for everyone to be taken care of in the way he or she would want to be.”

Forrow chaired an expert panel that studied end-of-life care and recommended ways for the state to improve treatment of the dying. They produced an impressive document. It is now two years old. To date, what guidance it provided largely has gone the way of the Institute of Medicine’s forerunner to the new Committee on Transforming End-of-Life Care.

That committee produced the 1997 report “Approaching Death: Improving Care at the End of Life.” 

The Committee on Transforming End-of-Life Care begins with awareness both of that earlier committee’s good work and how it was largely ignored.“These issues are not new,” the IOM website notes 16 years later. “While the 1997 IOM Report made important and wide sweeping recommendations, progress in implementing them has been slow.”

Forrow’s interview was part of a Boston Globe story about dying in Massachusetts. “Precious final days for many Massachusetts residents are still not spent the way they would have chosen -- at home with loved ones -- but in a hospital,” reporter Kay Lazar wrote. 

The story offers a good analysis of why valuable information doesn’t get through to patients and their families (in part because dying is a difficult subject for some to discuss and others to hear), and presents ideas for improving that communication, including the use of video.

Recommendations in the report by Forrow’s expert panel deserve to be acted upon, including communication training for caregivers, and accountability for such training with the state.

Just as “Romneycare” in Massachusetts inspired “Obamacare” nationally, perhaps the Massachusetts expert panel can serve as a model for the experts gathering in Washington, DC over the next month.

Including, one would hope, implementation.

Transforming Care & Communication

Jennifer Mack and Thomas Smith give me hope. I like that in a physician.

That they pull it off in a piece with this in its title --  "Reasons Why Physicians Do Not Have Discussions About Poor Prognosis" --  might be a medical miracle.

Mack and Smith give me hope that oncologists can be as adept with good communication as they are at titrating chemo, and that maybe we're ready for a national conversation about how we die.

Conveniently enough, such a conversation begins with the Committee on Transforming End-of-Life Care when its members meet Feb. 20-21 in Washington, DC.  This Institute of Medicine committee is a follow-up to one that produced the 1997 report Approaching Death: Improving Care at the End of Life.

Mack is an oncologist at the Dana-Farber Cancer Institute. Smith is director of palliative care at Johns Hopkins. In the Journal of Clinical Oncology from August 2012, the authors attempt to debunk excuses for not having hard conversations.

To  "it will make people depressed," the authors say: "Incorrect. In fact, giving patients honest information may allow them and their caregivers to cope with illness better."

They proceed to address perhaps understandable but defeating physician thinking that:

• "involvement in hospice or palliative care will reduce survival"
• "we do not really know a patient's prognosis"
• "talking about prognosis is not culturally appropriate"
• "we do not like to have these discussions and they are hard on us"
• and why confronting these "excuses" matters  (in short, because it's in the patient's best interest)

The one that resonated with me was their answer to  "it will take away hope." 

"Incorrect," say Mack and Smith. "In fact, evidence suggests that hope is maintained even with truthful discussions that teach the patient there is no chance of cure. ... Hope was increased or at least preserved when parents of pediatric (cancer) patients were given prognostic information, even if the news was bad."

The Community Ethics Committee, the group behind this blog, is completing a report to the Harvard Ethics Leadership Group on the intractable disputes in end-of-life care that sometimes emerge between caregivers and patients/families when further curative or therapeutic treatment is seen as futile.

Distrust and loss of hope are central to such disputes, especially amid differing cultural and religious values. At such a time, communication skills are crucial.

Maybe what Mack and Smith are on to here is the idea that, even with bad news, not talking about it only makes it worse. And maybe what transforming end-of-life care requires is open and ongoing dialogue -- especially the difficult subjects. 

I know from experience that some physicians are amazing communicators -- great listeners, empathic carers, tolerant of my need for multiple explanations, and able to respect values that are not their own. Not all physicians have these skills. For them, a team approach to care, with nurses, ethicists and chaplains trained and empowered, is maybe the only way to ensure good communication and care for all patients.

Through the end of January, the Committee on Transforming End-of-Life care is taking feedback in preparation for its first meeting. One suggestion I've seen is from Dr. Christian Sinclair, who says the committee lacks geographic diversity and hospice and non-academic palliative representation. See pallimed.org

What are your priorities for transforming end-of-life care?

Teaching Empathy to Medical Students

Understanding Barriers to Palliative

This won’t be news to any Intensive Care physician. But as I try to better grasp what often segregates the palliative care speciality from patients who would benefit, a review at the online resource PulmCCM.org (“all the best in pulmonary & critical care”) was illuminating.

The PulmCCM.org piece is titled “Burnout syndrome among critical care healthcare workers.” It reviews a report in journal Chest, April 2012 edition, titled “How to bill for palliative care in the ICU ... legally.” 

Even the latter headline told me something I didn’t know: that bringing palliative into the ICU can require an artful dance. In fact, it’s one in a series of artful dances, some emotional, some financial, some medical.

“To an intensivist,” PulmCCM.org writes, “providing palliative care often means having multiple time-consuming and emotionally challenging interactions with families struggling to cope with the impending loss of their loved one. The emotional content of these interactions can be strongly positive, negative, or somewhere in between, but frequently it’s an intense and draining experience, possibly contributing to burnout among ICU physicians. So at least you should get paid for it, right?”

Burnout, whether among physicians or nurses in the ICU, is of special interest to me now as the the Community Ethics Committee nears completion of a study of the intractable disputes that arise when continued medical treatment is considered futile by the care team. Burnout and the stressors behind it, at least in part, are what made the CEC feel an obligation to study the issue.

The financial dance is over Medicare reimbursement. Chest reported: “Split or shared service performed by a physician and a qualified nonphysician provider of the same group practice is not reportable as a critical care service; only cumulative critical care time provided by physicians within a group is reported as such.” 

“In other words,” PulmCCM.org added, “midlevels cannot bill for palliative care services,” and “the above goes for residents’ work, as well, at teaching hospitals, where attendings must also document care well enough for it to justify billings independent of the resident’s note.”

Really understanding the bureaucratic complexity of all that is above my pay grade, as are all the codes and details of legitimately billing for palliative services. But with palliative increasingly seen as a perhaps uniquely capable of serving a patient’s best interests and values, financial disincentives for its use seem especially short-sighted and thoughtless.

But Medicare policy on ICU billing isn’t the only barrier to broadening palliative’s reach. A commentary at cancernetwork.com (“home of the journal Oncology”) describes both benefits that oncologists are seeing in palliative care, and barriers to collaboration.

One barrier is “the lack of a ‘standardized’ palliative intervention,” according to the authors.

But palliative’s benefits to patients are well appreciated.

“It is well accepted that palliative interventions derive much of their success from a fundamentally patient-centered, rather than illness-centered, approach to care,” the authors write. “With a patient-centered focus, the physical, psychological, spiritual, and social needs of patients, as well as the needs of their caregivers, are addressed.”

This points to the benefits of a comprehensive, team approach, which leads to the next barrier: no surprise, it involves money.

“The lack of financial and educational resources often limits the ability to provide such a comprehensive team. ... (And yet) attempting to integrate palliative care into oncology care is still a worthwhile endeavor even when resources are limited.”

To make palliative and oncology more collaborative, the authors say, it is “critical” to develop an integrated outpatient model. “By utilizing the same clinic space and hours, the potential for timely communication among palliative and oncology providers is greatly enhanced. Feasibility of integration is further enabled by eliminating the need for a separate palliative clinic location and personnel. Furthermore, convenience for patients is increased by providing complementary services under one roof, optimally during the same visit.”

The authors cite another benefit of such a palliative-oncology collaborative -- its potential to lessen the burden on the care team.

Right to Die: "No authentic picture of public opinion"

The moral/ethical tug-of-war between autonomous choice and respect for human life is being vigorously and divisively engaged. That’s hardly breaking news. But aspects of the life-versus-choice debate are playing out loudly on multiple fronts.

In the United Kingdom, the Liverpool Care Pathway for the Dying Patient, a hospice-inspired strategy for appropriate medical care, is getting the “death panel” treatment, portrayed in some media as callously hastening patient deaths for economic and other reasons. In Canada, the Supreme Court will rule this spring on the authority of medical carers to decide when to remove a patient from life support. And in Rome, in words directed in part to legislators in Ireland, where a woman recently died from pregnancy complications after being denied an abortion at a Galway hospital, the pope has noted “with dismay that, in various countries, even those of Christian tradition, efforts are being made to introduce or expand legislation which decriminalises abortion.”

In the shadow of these evolving stories, and just two months removed from the narrow decision by Massachusetts voters not to make it legal for a physician to write a lethal prescription for a terminally ill patient, I came upon an instructive new study in the journal Palliative Medicine. The title: “Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.”

This study, led by Maggie Hendry and Diana Pasterfield of the North Wales Centre for Primary Care Research, is an impressive effort to get a sense of the range of values regarding assisted dying, in the form of physician-assisted suicide, euthanasia, or “accompanied suicide,” as practiced in Switzerland by Dignitas.

Some form of assisted dying is legally practiced in four European countries (The Netherlands, Belgium and Luxembourg, in addition to Switzerland), and three US states (Oregon, Washington and Montana).

Some proponents of legalizing physician-assisted suicide elsewhere in the United States anticipated Massachusetts as a bellwether, and the last-minute swing in support provided an interesting look at the pliability of attitudes. Polls just weeks before the November vote showed the measure supported by a significant majority. Was the reversal to a narrow defeat on Election Day indicative of how soft support or opposition can be on a question that puts life and choice into conflict?

The study of “right to die” attitudes found four themes in reasoning for and against: "concerns about poor quality of life,” “desire for a good quality of death,” “concerns about abuse if assisted dying were legalised,” and “importance of individual stance related to assisted dying.”

On the last theme, the authors wrote, “Some felt that only God should decide time of death. Others believed such decisions are morally wrong and could be equated with murder or interpreted the desire to hasten death as a sign of moral weakness. Some people saw death as part of a natural process that should not be interfered with, whereas others argued assisted dying could be morally justified to relieve suffering.”

According to the study, “The heated exchange about legalisation or de-criminalisation shows no sign of diminishing. There is a dearth of high-quality, unbiased evidence about the collective views of people that such a change in law might affect, and no authentic picture of public opinion is available.”

The study underlines both the need for clear policy on assisted dying, and the challenge in achieving that. “Importantly," say the authors, "the dichotomy between the views of doctors and the general public needs to be urgently explored.”

Defining Palliative Care

Palliative care is not well understood, so perhaps this definition the World Health Organization has published will help. 

The WHO definition reads:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care:

• Provides relief from pain and other distressing symptoms.
• Affirms life and regards dying as a normal process.
• Intends neither to hasten or postpone death.
• Integrates the psychological and spiritual aspects of patient care.
• Offers a support system to help patients live as actively as possible until death.
• Offers a support system to help the family cope during the patients illness and in their own bereavement.
• Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated.
• Will enhance quality of life, and may also positively influence the course of illness.
• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
• Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family.

• The WHO site also features a definition specific to palliative for children.
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