Physicians must offer informed consent before every planned procedure. We accept this as an ethical absolute: if we neglect informed consent then we violate a basic value of our profession. Why? Because as a profession, and as a society, we believe patients should know the benefits, risks, and alternatives so they can make informed decisions.

In American medicine we violate this central principle hundreds of times, every day, when we provide heroic care to elderly people without obtaining informed consent in advance. We rationalize it as “emergency intervention” even though we should expect death, and discuss heroic end-of-life care  in advance. Most elderly Americans have not obtained the information they need to make meaningful decisions about their medical care in the face of a serious illness. The tragic result: many elderly patients receive futile and painful care that they would decline if given the opportunity in advance. To the human catastrophe of prolonged dying, we add the tremendous financial cost, and we have a social problem of epic proportions. And sadly, no one seems to have the courage or will to face this tsunami of suffering and waste.

Public misinformation about these matters is impossible to exaggerate. Because Americans get their medical information through television, they are grossly misinformed about end-of-life care. For example, a medical journal showed that 83% of people over age 70 believed they had at least a 50% chance of surviving resuscitation in the hospital(1). The truth is 5-10% (2,3) with a 40% chance of a significant stroke (4). So the public has a complete misunderstanding of the benefits of a common procedure that many will face, and they are not given the facts to make an informed decision. I believe many people would decline a heroic measure, like CPR, if they had the facts and were granted the opportunity to decide.

People with dementia are often mistreated and receive care most would decline. In the face of advanced dementia (lacking short-term memory, incontinent, needing help feeding), most Americans would prefer comfort care without heroic measures, and particularly without further hospitalizations. Unfortunately, only 7.1% of patients with severe dementia, who live in a nursing home, have orders to avoid hospitalization (5). Therefore, 93% are transported to hospitals for life-prolonging care in the face of advanced dementia. Here’s the tragedy: patients did not get the opportunity to decline the care in advance and most families don’t know they have the choice of less care. Our system is in shambles: we provide heroic, expensive care to people who would decline it. This happens hundreds, if not thousands of times every day.

People need to know the facts before they face a serious illness. These matters must become a matter of public discourse and common understanding. Individuals and policy makers could make a substantial difference through measures such as:
• The most obvious place to begin is with those who have advanced dementia. They suffer needlessly with repeated hospitalizations that only prolong their suffering. Family members that serve as decision makers need to know the options for their loved ones, including comfort care and allowing a natural death without further hospitalization. Medicare should require education of all decision makers in this situation.
• Individuals must take responsibility to plan in advance and become informed about end-of-life issues. Every person needs advance directives including a living will, health care power of attorney, and a declaration of code status if applicable (discuss with physician).
• Families need to discuss these matters. Many elderly patients try to address these issues with their children who shut them down with responses like, “You’re not going to die. We don’t need to talk about that.” Children who avoid this conversation will come to regret it when a serious illness precludes a meaningful dialogue about their parent’s wishes.
• Governmental agencies have made progress in raising awareness on critical and common medical issues such as hypertension, diabetes, and cholesterol abnormalities. A similar commitment to education could make a profound impact on closing the gap between patients’ misunderstandings about end-of-life care and the facts.
• Medicare should adequately reimburse physicians for educational conversations about patient preferences. Today, primary care physicians are under paid for the difficult and time-consuming work of educating patients and family members regarding these issues. The result is obvious: most people have not discussed these matters with their physician. As our population ages and the ratio of patients to primary care physicians continues to rise, this problem will swell.
• We should form teams of health care professionals (physicians, nurses, psychologists, chaplains) to inform every person admitted to a hospital or nursing home about end-of-life issues. This team could provide the facts needed to make informed decisions and help patients complete needed documents. The teams could be funded by Medicare and Medicaid to prevent conflict of interest in medical institutions.

We must start now to stem the tide of suffering and wasteful spending. Close to 30% of Medicare expenditures occur in the last year of life, with about half that in the last two months. In 2009, that represents $70 billion in the last two months of life. The heartbreaker: most of that money is spent on care that patients would decline if we would give them the opportunity to make an informed decision.
Jeff Gordon, MD

A Death Prolonged: A slim novel by Dr. Gordon that engages these crucial end-of-life issues

References:
1. Diem, Susan J. “Cardiopulmonary Resuscitation on Television — Miracles and Misinformation.” New Engl J Med, June 13, 1996; 334(24):1578-1582.
2. Brindley, Peter. “Predictors of Survival Following In-Hospital Adult Cardiopulmonary Resuscitation,” Can Med Ass J. August 20, 2002,Vol. 4, p. 167.
3. Peberdy, Maria Ann. “Survival from In-Hospital Cardiac Arrest During Nights and Weekends,” JAMA. 2008, Vol. 299, No. 7, pp.785-792.
4. Danciu, S. “A Predictive Model For Survival After In-Hospital Cardiopulmonary Arrest,” Resuscitation. 2004, Vol. 62, No. 1, pp. 35-42.
5. Mitchell, Susan L. “Decisions to Forgo Hospitalization in Advanced Dementia: A Nationwide Study.” JAGS, 2007; 55:432-438.

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