In our Bioethics On Call video conversation, Professor Kim Evanoski discusses topics in palliative care, training of care managers, use of advance directives, MOLST, and her work as Zelda Foster Palliative and End-of-Life Care Fellow at New York University. Additionally, Professor Evanoski discusses the upcoming Care Management Summit: Achieving Excellence conference on May 22-23, 2014 at Binghamton University, Binghamton, NY.

Kim Evanoski, MPA, LMSW, is Zelda Foster PELC Fellow at New York University and member of the Department of Social Work and Hartford Partnership Program in Aging Education at the College of Community and Public Affairs, Binghamton University.

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Medical Ethics, Living Wills, and End-of-Life Care

In our Bioethics On Call video conversation, Professor Wayne Shelton discusses medical ethics, end-of-life decision making, living wills, competency, and capacity. Dr. Shelton discusses the incorporation of ethics training in medical education and the use of ethics consultations in day-to-day interactions with patients, families, and medical staff. Medical ethicists at Albany Medical Center engage in 100 ethics consultation per year, providing incalculable benefits to patients and families at critical stages of care.

Wayne Shelton, Ph.D., is Professor of Medicine at Albany Medical College and Professor, Center for Biomedical Ethics, Education, and Research at Albany Medical Center.

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Your Health Care and the Affordable Care Act

Health Law Fails to Lower Prices for Rural Areas was the lead headline in the 10/24/13 New York Times. The article highlights the fact that in more than half of 2500 rural counties, health insurance plans are offered by only one or two carriers. The lack of competition has thus far failed to lower consumer costs.

But such an article diverts attention from the real issues. Yes, competition is severely limited in many regions across the U.S., particularly in the South. It will take time to redress the many inequities that persist from the pre–Affordable Care Act (ACA) era. Of course, the ACA rollout began only several weeks ago. Realistically, such a massive undertaking will be accompanied by numerous initial failures. The technical shortcomings, such as lack of ability to obtain coverage via the online systems, are still being hyped in every media outlet. But as the Nobel Prize–winning economist, Paul Krugman, observed in his 10/3/13 New York TimesOp-Ed column, Reform Turns Real, the glitches won’t matter in the long run.

Health care reform has been a very long time coming in the United States. Tremendously powerful special interests have been arrayed against such reform for decades. That we have any progress at all in this area is due to the vision and persistence of President Obama and his allies in the Cabinet and Congress. Enactment of the ACA is also due, in large part, to the efforts of President Clinton and his staff in the early 1990s. The ACA contains numerous policy errors and the act is extraordinarily complex. Compromises were effected on both sides of the aisle in order to obtain passage of the bill. Regardless, the ACA is law and will be of benefit to every American, not the least to those 50 million of us, predominantly women and children, who have been without health insurance coverage for many, many years.

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Bioethicist David Lemberg discusses how pharmaceutical marketing and lobbying costs impact your health care and the economy and what we can do about it.

Bibliography

Relman A, Angell M: America’s other drug problem. The New Republic, 12/16/2002, p 38

Big Pharma’s Stranglehold on Washington

Pharma Spending on Lobbyists

Drug Prices Jump Again While Other Costs Decline

DTC Advertising and Its History with the FDA

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Bioethics On Call #2 – The Right to Health Care

In today’s edition of Bioethics On Call, bioethicist David Lemberg discusses the right to health care, locating such a right in the U.S. Constitution’s Bill of Rights.

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Introducing Bioethics On Call, a new audio blog focusing on health care policy, end-of-life decision making, health disparities, social justice, and biomedical ethics. In today’s edition, bioethicist David Lemberg discusses health care delivery in the United States and the need for the Affordable Care Act.

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The Need for a Living Will

Before the early 1960s, there was no particular need for a living will or advance directive. Back then, if a person’s heart stopped, that was it. Cardiac arrest rapidly led to death. But in 1960, a method of “closed-chest cardiac massage” was described in an article in the Journal of the American Medical Association.1 The article reported on 14 patients who survived cardiac arrest via application of the new technique. The innovative procedure was refined over the next few years and became known by the term with which we’re familiar, cardiopulmonary resuscitation (CPR). Guidelines for the use of CPR were developed and continue to be updated.2

CPR provided the possibility of a return from death under certain circumstances. The primary concern with CPR, of course, is the amount of time that the person’s brain has been deprived of oxygen. MedlinePlus, a service of the U.S. National Library of Medicine and the National Institutes of Health, states that permanent brain damage begins after 4 minutes without oxygen and death may occur as soon as 4 to 6 minutes later.3 Problematically, fewer than 50% of persons in cardiac arrest receive CPR from bystanders, and emergency responders have no accurate means of determining how long it has been since the victim’s heart stopped beating. As a result, many of those who survive CPR have some degree of brain damage, often serious or severe. Given a choice, at least some of these persons might have desired not to be resuscitated if the circumstances were not optimal.

Similarly, terminally ill patients or those suffering a catastrophic injury may require artificial hydration and artificial nutrition (ANH) to sustain life. But some persons, given a choice, might not choose such means of survival if they were able to state their preferences and desires. ANH might be viewed as unacceptably onerous. The quality of life obtained might be viewed as insufficient. These persons would prefer to permit natural processes to determine whether they live or die.

But if one has not enacted a formal living will, one’s medical treatment is determined by the medical standards of the community. Typically, any and all available life-saving measures will be utilized when needed, based on the presumption that saving a life is always better than the alternative. A living will is required in the event that one is not able to speak on one’s own behalf. With respect to medical treatment, a living will provides the opportunity for having one’s desires and preferences honored and implemented.

1Kouwenhoven WB, et al: Closed-chest cardiac massage. JAMA 173:1064-1067, 1960
2Field JM, et al: 2010 American Heart Association Guidelines for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care Science. Circulation 122:S640-S656, 2010
3MedlinePlus

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What Is a Living Will?

A living will or advance directive is a legal document by which one can specify his or her personal preferences and desires regarding health care decision-making in circumstances in which one is not able to speak on one’s own behalf. In other words, a living will provides a formal record of a person’s wishes in situations requiring medical decision-making, in the case in which that person, who previously had the cognitive capacity to make her preferences known, has lost such capacity, temporarily or permanently.

For example, a 55-year-old man suffers a stroke (cardiovascular accident; CVA) and loses consciousness. EMTs are called and the man is taken to the local hospital. The man (we’ll call him Joe) is able to breathe on his own, but requires life-saving support measures including delivery of fluids and nutrients (artificial hydration and nutrition). Joe never enacted a living will, and these measures are undertaken. After 72 hours Joe regains consciousness, but it is apparent that the CVA has caused severe brain damage. He is unable to understand what is said to him and he is unable to articulate recognizable words. Such a condition is known as global aphasia. He also has suffered a deterioration of skilled movements (apraxia) and is unable to feed himself. Thus, Joe requires full-time nursing care and may require such care for months or years. Although functional improvement is possible, the potential for improvement is typically unknown and the possibility exists that Joe will be permanently severely impaired in terms of cognitive function and the ability to perform activities of daily living.

Of course, these circumstances are very difficult to think about and speak about. Most of us have loved ones, family members or friends, who have suffered such an illness. Our critical question is what would Joe have wanted in the immediate aftermath of his stroke, had he been able to speak on his own behalf. Would Joe have desired live-saving measures to be used, regardless of the outcome? Would he have desired to continue living despite the long-term, possibly permanent, loss of his cognitive abilities? Many people would respond affirmatively, desiring that all life-saving measures be used to preserve life at any cost. Others would wish to decline such measures in medically life-threatening circumstances, being concerned about an unacceptably untoward outcome, based on their beliefs and values of what constitutes a happy life. For these people, a living will provides a formal, clear statement, of what medical services they would wish to have done to preserve life and what they would wish not to have done.

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Welcome to Living Will Advance Directive

Welcome to Living Will Advance Directive. Our mission is to provide information and materials to all persons intent on planning a more secure future. Our vision is that every person has the information he and she needs to put the best possible plan in place to protect themselves and their families against unexpected and severe medical circumstances in which one loses the capacity to make medical decisions on one’s own behalf.

We live in a world in which medical technology can, within certain limits, bring a dead body back to life. We see this all the time on television hospital dramas and police procedurals. Someone goes into cardiac arrest and stops breathing. “Code Blue” is called and hospital staff rushes in with a crash cart. Or EMTs arrive at a restaurant, public park, or accident site and begin CPR. In almost all cases (depending on the script) the victim miraculously regains consciousness and soon thereafter is healthy and well. We are led to believe that such remarkable outcomes are the norm in the real world. They most emphatically are not.

Many in the bioethics community question the assumption that CPR is generally beneficial and should be withheld only by exception. In fact, nearly 44% of survivors of in-hospital CPR have a significant decline in functional status.1 Further, approximately 15% of survivors of resuscitation attempts suffer substantial brain damage.2 Bringing a person back to life via CPR frequently results in many years of severe debility associated with a substandard or poor quality of life. Many of us would prefer not to survive under such conditions.

Stuff happens. No one can predict the future. We can, however, make reasonable plans to protect ourselves, our families, and our assets. Writing a living will is part of that planning. In the absence of such a document, emergency responders and medical professionals will take all available actions to resuscitate a person whose heart has stopped or to revive an unconscious person. There are many circumstances in which a person may not wish to have heroic measures performed to restore life or otherwise intervene in natural processes. But without specific instructions, one’s preferences and desires in end-of-life conditions will not be honored.

Beyond writing a living will, it is also critically important to express your preferences to family members and close friends. These may not be particularly pleasant conversations and they’re not conversations that most us of would readily initiate and undertake. But they are necessary if one’s desires and preferences are to be upheld when one is not able to speak on his or her own behalf.

1Burns JP, et al: Do-not-resuscitate order after 25 years. Crit Care Med 31(5):1543-1550, 2003
2Freeman JM, McDonnell K: Tough Decisions. Cases in Medical Ethics, 2nd ed. New York, Oxford University Press, 2001, p 7

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