Posts Tagged ‘Robert Wood Johnson Foundation’

Will Your End-of-Life Health Care Wishes Be Honored?

JUNE 23, 1996 VOLUME 3, NUMBER 52

While advance medical directives are increasingly common, disturbing studies suggest that they are too frequently ignored. The recent SUPPORT study, funded by the Robert Wood Johnson Foundation and reported on in Elder Law Issues last December 11, illustrates the problem. It found that doctors are likely to follow the written wishes of patients only about half the time.

While the conclusions of that study may be unnecessarily pessimistic, patients have legitimate concerns about how to maximize the likelihood their wishes will be carried out. A few suggestions for patients:

  • Execute both a living will and a health care power of attorney. The former sets out what health care choices you want, the latter permits someone to advocate on your behalf, sign releases and discuss issues with your medical treatment team.
  • Select your health care agent carefully. Rather than naming all your children (honest, they won’t be offended if you select one), or the one closest geographically (the daughter who lives in town may or may not be the best equipped to argue with doctors and health care administrators), choose the most articulate and like-minded candidate. While geographical proximity is a plus, assertive and well-informed advocacy is more important.
  • Discuss the issues with your family. No matter how well you have written your directives, they are worthless if your children do not believe you really meant them. Make it clear that you are not asking that they “put you to sleep” but that you are demanding the right to die with dignity.
  • Discuss the issues with your physician. If she has not heard your views from you, she is more likely to question whether your agent truly speaks for you.
  • Be specific. The more detail you put into your living will, and the more you customize its language, the more likely your wishes will be followed.
  • Consider pain management issues (thorough pain management may hasten death in some cases, and if pain control is important you should say so) and organ donation (advance directives may actually make organ harvesting more difficult).

Medicare HMOs Provide Less Home Care

Medicare participants who choose to enroll in HMOs receive fewer home health care visits than fee-for-service Medicare recipients. That is the conclusion of research completed at the behest of the Health Care Financing Administration and the Agency for Health Care Policy and Research.

The study examined 1,260 Medicare patients nationwide, and compared both health improvement and costs for those participants. Researchers tried to determine whether those studied benefited from home health care by determining whether they were better able to perform basic activities of daily living (ADLs) such as eating and bathing.

According to the researchers, 56.5% of the fee-for-service beneficiaries had improved ADLs as a result of home health care. Among HMO participants, 43.4% showed similar improvement. While HMO-provided home health care may have been less expensive to the Medicare system, the study demonstrated that the savings may have come partially at the expense of better outcomes for patients.

Medicare recipients (whether enrolled in HMOs or in traditional fee-for-service plans) are entitled to home health care benefits in some circumstances. Such services may include skilled nursing care, physical, speech and occupational therapy, and other services.

Patient’s Treatment Wishes Usually Ignored, Study Says


A disturbing new study calls into question the very basis for patient’s advance directives. According to researchers, doctors are likely to honor patients’ about treatment options only in about half of all cases.

The $28 million study, funded by the Robert Wood Johnson Foundation and published in the Journal of the American Medical Association, also found that efforts to increase doctors’ understanding of individual patients’ wishes had no positive effect on the problem. While the study did not directly address living wills or durable powers of attorney for health care, the results call into question the value of such directives in the real world.

Researchers interviewed hospital patients at six medical centers around the country to find out whether they would want to be resuscitated in the event of cardiopulmonary arrest. Nearly a third declined CPR, but fully 80% of doctors either misunderstood or ignored their patients’ wishes. The result for half of the patients; although they refused CPR, their hospital records indicated that they were to receive such treatment in the event of an attack.

Even in those cases where doctors correctly understood their patients’ wishes, the delay in securing “no code” orders in medical charts was unreasonably long. The average length of time between the request for a “no code” order and its insertion in medical records varied by facility, but the most prompt hospital averaged 22 days; the least prompt took, on average, 73 days before charting the patient’s wishes.

Perhaps the most disturbing element of the study emerged during its second phase. Researchers utilized specially trained nurses to document the patients’ wishes and estimate their prognoses for doctors (using specially designed computer software). The result of this expensive intervention: no improvement in the rate of compliance with patients’ wishes.

At the same time the study reviewed the circumstances of death for those patients who died in the facilities. Half were found to have died in moderate to severe pain and half were receiving mechanical ventilation for at least eight days at the end of life. Neither result changed after the intervention of the specially trained nurses.

The same JAMA issue included a number of commentaries on these striking study results. Observers suggested that the entire medical system is constructed to promote disregard for patients’ wishes not to be treated. One commentator noted that doctors usually have a financial incentive to treat patients aggressively. Another observed that the best course for patients and their families is to aggressively insist on their preferences.

While the study did not assess the value of advance directives, one conclusion seems inescapable. While doctors may ignore the wishes expressed in a living will, naming an agent for health care decision-making should help produce compliance with patients’ instructions. But no one should assume that doctors will determine and follow patients’ wishes in most cases.

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