Your end-of-life plans won’t work if you don’t talk about them

The headline seems obvious, right? But unfortunately, failing to tell your loved ones what type of care you would want if you suffer from an illness which will eventually lead to your death is all too common. The Boston Globe had an essay a few weeks ago, which was written by a young physician who had observed the results of a failure to communicate:

Mrs. M found herself at home, unable to breathe. Her husband called 911 and she was rushed by ambulance to the emergency room. As her shortness of breath worsened, all she could say was “help me.” The medical team immediately jumped into action ordering blood work and a chest X-ray, placing an IV line and administering antibiotics. Eventually, anesthesia was called to insert a breathing tube and Mrs. M was placed on a ventilator because she could not breathe adequately on her own. Unfortunately — and unbeknownst to anyone present — this was not the type of help she sought.

Mrs. M had spent the last few months under the care of a hospice nurse with whom she had developed a close relationship. On several occasions, she explained to this nurse that she had no desire to be placed on a ventilator again, as she had been so many times in the past. The next time her lung disease worsened, she wanted medicines to make her comfortable so that she would not feel the awful sensation of ‘air hunger’ that accompanied her severe shortness of breath. She knew that her lung disease was slowly killing her, and she hoped to spend her final days at home, comfortable and at peace, rather than in a hospital hooked up to a machine.


To ensure that her wishes would be met, Mrs. M designated her husband as her official “health care proxy” should she lose the ability to make her own decisions. In Massachusetts, this involves signing a document designating a spouse, family member, or friend to take responsibility for health care decisions if an individual is unable to do so. When we as doctors can no longer communicate directly with a patient because of their mental or physical illness, we seek the advice of the health care proxy so as to best honor our patient’s wishes.


While Mrs. M had outlined her desire for comfort-focused medical care to her nurse, she never broached this difficult subject with her husband. He was unaware that she never wanted a breathing tube or ventilator, or to be re-admitted to the hospital. Only later, after speaking with Mrs. M’s nurse, did he understand how much his wife had quietly suffered from her disease and why she hoped to pass naturally at home rather than in the midst of aggressive medical care.

You can’t blame the doctors for taking action if you do not communicate your wishes to your health care agent. I’ve had conversations with clients who wanted to name their children as their health care agents but were reticent to have candid discussions about the full extent of their medical problems or did not want to have a difficult conversation about death. At the same time, there are some adult children  who simply cannot stand the thought of having to talk to their parents about the parents’ eventual demise.

But at the same time, even when you communicate with your primary care providers (here, the hospice nurse), it doesn’t mean that those wishes will be passed on to other doctors and hospitals. There is a new tool in Massachusetts called MOLST (Medical Orders for Life-Sustaining Treatment) which promises to help. Unlike a health care proxy, which is a legal document, a MOLST is supposed to be entered into the medical record of a patient facing late-stage illness. The MOLST form contains specific information completed by the treating physician and patient concerning the patient’s desires for how end-of-life care should be managed under different scenarios. MOLST is being gradually rolled out, with the goal of widespread use throughout the state by early 2014.

This sounds like a good idea — as long as the paperwork actually follows the patient in either electronic or paper form. I’m not convinced that will happen if there is more than one hospital chain in the area like there is in the Boston area. I’ll be interested to see how MOLST pans out.

Progress on promotion of advanced planning

The American Bar Association’s Commission on Law on Aging reports that the Secretary of the US Department of Health and Human Services has sent a comprehensive report to Congress entitled “Advance Directives and Advance Care Planning.” The report, requested by Congress in 2006, focuses on (1) the best ways to promote the use of advance directives and advance care planning among competent adults as a way to specify their wishes about end-of-life care; and (2) addressing the needs of persons with disabilities with respect to advance directives.

The report thoroughly reviews the literature on “every aspect of advance care planning, analyses of key ethical and legal issues, and a discussion of opportunities to enhance the effectiveness of advance care planning and advance directives. The report is particularly timely as health care reform is in the public policy forefront, and several bills are pending on the Hill regarding advance care planning and improving care near the end of life.”

Charlie Sabatino, Esq., the head of the ABA’s Commission (and someone I feel privileged to know) has written a comprehensive analysis of the legal and public policy issues. I look forward to reading Charlie’s analysis.

Tax credit for advance directives?

Rep. McDermott (D-WA) has introduced HR 2705, which would provide a tax credit of 30% of qualified costs of legal work up to a maximum of $500 for preparation of advanced directives.

Given current pressures on federal revenues, I’m not holding my breath waiting for this measure to pass, and I question how much of an incentive this credit would give anyone to go see a lawyer. But anything that gets Congress to talk about end-of-life decision-making is a good thing.

Medicare may pay for advanced directive counseling by physicians

By a veto-proof majority, Congress has just passed an amendment to Patient Self-Determination Act of 1991 which would include counseling concerning advanced directives as part of the “initial preventive physical examination” (IPPE), a once-in-a-lifetime benefit given to all new Medicare beneficiaries under Part B. 42 U.S.C. 1395x(ww). In other words, physicians will get paid to raise the issues concerning the choices to be made where further efforts to cure disease in the course of the examination.

Sounds like a good idea… but as a practical matter, primary care physicians are economically pressured by both Medicare and private insurers to maximize the number of patients which they can see in the course of a day. Thanks to Ted Kennedy’s unexpected vote last week, the Senate passed legislation replacing the 10.6% pay cut for primary care physicians that went into effect on July 1 with a 0.5% raise through December 31, 2008. (Payments will rise by another 1.1% for calendar year 2009.) This raise is miniscule compared with the payments Medicare makes to specialists. New doctors are avoiding going into geriatrics and primary care because they can make more money in radiology or plastic surgery or other specialties with higher reimbursement rates.

I have to wonder whether, even though physicans will get paid something for counseling about the end-of-life issues, if those discussions will get short-shrift in some cases. Further, these discussions have to be held again and again, as the older patient’s attitudes about treatment and death frequently change as health deteriorates over time. I see no promise that physicians will get paid to raise these issues as the patients’ needs change.

Further, will Massachusetts physicians counsel patients about what can happen if the health care agent or a nursing home or hospital ignores those directives? Massachusetts is one of three states in the US where advanced directives –giving specific directions for care outside a health care proxy — are NOT legally binding. Some physicians may not be aware that there is a procedure to enforce the health care proxy in the Probate Court. These issues concerning patient rights are legal as well as medical — are the doctors going to be encouraging their patients to see their friendly local elder law attorneys? I think not.