Volume 5 September 15, 2009 Patient Advocacy, not “Death Panels”


The twisted, cynical label of “death panels” being used against the proposed Health Care Reform bill (HR 3200) is apparently based on a single item in its 1000+ pages that proposes to reimburse physicians, through Medicare, for any time spent counseling their patients about end-of-life-decisions. Since the offering of such counseling has been mandated since 1990 by the Federal Patient Self-Determination Act (emphasis added), it hardly seems like a radical idea. That 1990 legislation explicitly recognized the patient’s right to refuse treatment and mandated hospitals to inform the patient about that right and to urge patients to create an Advance Directive, i.e. designate a Health Care Proxy in Massachusetts.

At Cape Cod Hospital an aid to such counseling has been available since 1988. We call them Ethics Consults. At the request of a patient, family member, any member of the health care team, or, actually, anyone involved with the patient, three members of the CCH Ethics Committee will review an inpatient’s medical record, interview participants, and meet with patient (or Health Care Proxy), family members, and the health care team to identify and discuss treatment options that are creating a dilemma. Many, but not all, of these Ethics Consults over the years have been concerned with end-of-life decisions.  Why? Because the diagnostic and treatment options for patients have become so numerous, so complex, so powerful, and, yet, can be so potentially harmful to the patient, that the “best choice for the paitent” is not always so clear.

The focus of any Ethics Consult is what is “best for the patient” and “what would the patient want” (remember, Patient Self-Determination Act of 1990). The Ethics Consult produces a recommendation(s) to the patient’s attending physician that represents the consensus of that meeting or a list of ethically correct options if there is no consensus. Nine out of ten times a consensus is reached. The Ethics Committee takes no votes and can take no clinical action. The intentions of the Ethics Consult are to facilitate the patient-health care team dialogue and to help all discern what is “best for the patient”.

Why then has the erroneous label of “death panels” struck such a responsive cord, at least in the media? (Many political conservatives opposing health care reform have already derided the term.) I think it is because everyone fears that “someone else” might make an end-of-life-decision for them, either the government, an insurance company, or an even an accountant in a back room somewhere. When a neurosurgeon who has just been diagnosed with a brain tumor decides not to undergo chemotherapy, radiation, or surgical treatment because “I have been giving my patients those choices for decades, and they are not REAL choices”, we sympathize and respect that decision, though we may disagree. Likewise, when the man newly diagnosed with lung cancer refuses treatment because he has just lived through a myriad of complications of his wife’s treatment for breast cancer, and then watched her die, we are not threatened. These two demonstrated “self-determination”; they were their own advocates.

But if a patient can not communicate due to illness and has not designated a Health Care Proxy, differing perceptions by family members and health care team members can lead to unresolved conflict over what are the “best choices” for the patient’s “end-of-life” care. Ninety-five per cent of hospitals reviewed by the Joint Commission of Hospital Accreditation in 2000 offered ethics consultations. The average number of consults performed per hospital per year was only 3. One of the reasons that this is so low is poor acceptance by physicians. Many physicians polled in 2004 considered such meetings as “too time consuming”, were concerned about the possible “displacement of their authority”, and wished to avoid an activity in which they had little competence or training. However, of those physicians who did make use of an ethics consultation, 72% learned something beneficial from it, and 86% would participate in one again.

When the Ethics Consult arranges a meeting to discuss treatment choices and seek a consensus, often the only professional in the room NOT being paid for his or her time is the patient’s physician. . The nurses (who probably know the patient’s current quality of life best by spending 8 hours a day with the patient), care managers, respiratory therapist, renal dialysis nurse, chaplain, etc. are all on salary. The Ethics Committee members volunteer their time. The AMA, which supports this Health Care Reform Bill HR 3200, said as part of their ethical standards review in 2004 that physicians should be paid for participating in clinical ethics consults.

This single proposal to reimburse physicians for time spent helping patients, families, and other health care team members deal with very difficult questions about the end-of-life seems such a small step in the face of so many hurdles. No matter how small the reimbursement, and we all know it will be small, it will be an acknowledgment of the value of the patient-physician dialogue about end-of-life choices. It may help to keep the discussion where it should be; local, personal, and centered on an individual patient.  It is a small step toward more effective patient advocacy…and not what “stupid” says it is.

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