Anti-reformers claimed the bill encouraged gangs of government bureaucrats to roam community hospitals pulling plugs or turning off life-sustaining equipment.  The “death panel” accusation was tenuously tied to a tiny element in the legislation that proposed compensating  physicians for discussing end-of-life care with patients and their families.

Despite this misrepresentation, few conversations are more important. End-of-life care is a very personal, often emotionally difficult subject. Many patients, even those with a significant chance of dying soon, have never expressed their preferences to their physicians — or even their families. In the throes of a health emergency, when someone is breathless, confused, in tremendous pain, or unconscious, a thoughtful discussion of options is virtually precluded. We shouldn’t lose our chance to choose a kinder, gentler departure. It’s never too early to discuss end-of-life care.

As with contraception, birth, and menopause, women’s health activists can inform and empower ourselves about end-of-life care. We can use physicians and other health care providers as educators, facilitators, and advisors, rather than as directors of our dying days. This is another opportunity to learn, talk with trusted friends and family, and create your own plan that expresses your values and beliefs. It’s never too early to do this. Some of the most difficult situations that we’ve seen as providers occur when a young person has a devastating illness or injury and is unable to communicate his or her wishes. Often, no one, not even close friends and family, knows clearly what that individual would want. In this case, an advance directive is a tremendous gift to the circle of emotionally traumatized loved ones, and ensures the person’s beliefs are honored.

There are several documents to help navigate the questions and issues that arise in planning end-of-life care; three notable ones are Advance Directives, Five Wishes, and Physician Orders for Life Sustaining Treatment (POLST).

Advance Directives

This legal document allows you to indicate whether, and under what circumstances, you want certain medical interventions, such as cardiopulmonary resuscitation (CPR), intubation (using a machine to breathe for you), feeding tubes, etc. You can also designate a “health care agent,” who can make decisions if you can’t. This person must follow your directives even if their own choice would be different and/or if others disagree. The health care agent can be a relative or a friend, but it’s important to choose someone who can think clearly and follow your wishes when under stress. The agent may not be your physician or anyone who works in a medical office or hospital where you are, or could, be a patient, unless they are a relative or close friend who won’t be directly involved in your medical care.

Five Wishes

Sometimes called the “living will with a heart”, this document was developed by a man who worked closely with Mother Teresa for 12 years. He wanted to give patients and families a way to express directives about medical interventions, and the care they want (or don’t want) as they are dying, care of their body after death, preferences regarding memorial services (including not having one) and other important topics. The Five Wishes form is easy to read and understand and facilitates discussion and elaboration of the person’s values and philosophy, religious and/or spiritual beliefs, and what is most important in life and death. Choices are suggested that you may circle to include (or cross out to exclude), and you can make your own additions.

Physician Orders for Life Sustaining Treatment (POLST)

This relatively new document is designed to give people more control over their end-of-life care and, importantly, to create a legal directive that travels with the person through moves between residential and medical settings. POLST is primarily for those whose health is frail and have a fairly high risk of dying sometime over the next year.  Once the patient completes the POLST and it is signed by both physician and the patient, it becomes part of the person’s medical record. It has been designed to avoid the need to sort out medical directives in an emergency situation with little or no information.

For example, someone may become critically ill at home or in a nursing home, and is unable to give their directives. 911 is called and the patient is ambulanced to a hospital where, in absence of an Advance Directive, Five Wishes or a similar document, all interventions and tests are done immediately. It’s really sad when, hours or days later, directives are located that may mandate the opposite of the care that was given.

Once POLST is completed and signed by both patient and physician, other physicians and health care providers must legally follow its instructions.  The goal is to prevent unwanted or ineffective treatments, decrease patient and family suffering, and ensure the patient’s directives are honored.

Our Recommendation

Start by obtaining your state’s Advance Directive or one of the other documents. Laws on them vary by state; you can learn your state’s specifics from local physicians, clinics, or hospitals, or from the resources below. Arrange time with several trusted friends and/or relatives, talk about the various scenarios that the documents discuss, and complete yours! You can change your mind anytime for any reason; just modify your original document with clear notations, or complete a new one. Once completed, give copies to your health care agents, physicians, and local hospital. You may want to give a copy to a friend or relative as well.

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Charlea T. Massion, MD, is a practicing physician in Santa Cruz County specializing in hospice and palliative care. Charlea brought her passion for improving women’s health along with 40+ years of health care experience to the NWHN as a member of the board for 8 years. She also co-founded the American College of Women’s Health Physicians.

Adriane Fugh-Berman, MD, is a former NWHN Board Chair whose research presents a critical analysis of the marketing of prescription drugs. Adriane educates prescribers on pharmaceutical marketing practices as Director of the PharmedOUT program, and created the Health in the Public Interest program at Georgetown University School of Medicine where she trains a new generation of consumer advocates.

Read more from Charlea T. Massion and Adriane Fugh-Berman.

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The continued availability of external resources is outside of the NWHN’s control. If the link you are looking for is broken, contact us at nwhn@nwhn.org to request more current citation information.

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Resources

Download a free copy of your state’s most current Advance Directive at www.caringinfo.org

Five Wishes: Available in 25 languages from www.agingwithdignity.org or 1-888-594-7437. POLST: http://www.ohsu.edu/polst

Martensen, R, A Life Worth Living: A Doctor’s Reflections on Illness in a High-Tech Era, New York: Farrar, Straus and Giroux, 2008.

Charlea T. Massion, MD, is a family physician and co-founder of the American College of Women's Health Physicians; she teaches at Stanford University School of Medicine’s Center for Education in Family Medicine. Adriane Fugh-Berman, MD, is an associate professor in the Georgetown University Medical Center, a former chair of the NWHN, and director of Pharmedout.org, which educates prescribers about pharmaceutical  marketing techniques.