I recently had the privilege of meeting Dan Morhaim, a physician and member of the Maryland House of Delegates. Dan told me about a book he wrote on advanced directives, or “living wills,” which enable people to exercise control over their care should they become incapacitated. Patient control is important in all aspects of medical care and is a key focus of ACS CAN’s advocacy agenda. For example, ACS CAN is working in support of policies that expand patient access to palliative care, a specialized form of medical care in which doctors, nurses and other specialists work as a team with the patient and his or her family to address pain, stress and other symptoms of treatment, and to determine the best course of care.
Palliative care gives patients a voice in determining the direction of their care at any age and any stage of a serious illness, including diagnosis, treatment and survivorship. It’s about getting well and restoring independent living. I thought Dan’s knowledge of advanced directives was pertinent to the broader discussion of palliative care because ultimately, and unfortunately, some cancer patients do not get well. So, I invited him to contribute to this blog. I hope you find his perspective useful.
Americans like the freedom to make their own decisions, whether it’s what kind of food to eat, car to drive, or school to attend. Yet in one crucial area, even though we have the legal right to make our own decisions, most of us omit doing so. That area is the choice of care at the end of life.
The realities of twenty-first-century medicine mean that about 80 percent of us will die from long-term conditions like cancer, degenerative illness, or Alzheimer’s disease. As the end approaches, decisions will be made about how aggressively to treat, whether side effects of a given treatment outweigh potential benefits, and if it’s appropriate to allow natural death to occur.
These are deeply personal decisions, informed by the values of a lifetime, and they often arise when we may be too incapacitated to speak for ourselves. In these situations, who should make the determination? Doctors? Insurance companies? Government? Hospital ethics committees? Religious institutions?
As both a practicing physician and state lawmaker, I believe it is the right of every patient to make that choice for themselves. And when the patient is unable to express their wishes, the only way to ensure that right is through the completion of an advance directive (also called a “living will”).
An advance directive not only specifies the patient’s wishes for treatment in various situations, it also appoints a health care agent with medical power of attorney to make decisions in the event of incapacity. This is especially important for cancer patients, who make complex medical decisions at every turn of the disease.
Research shows that while the vast majority of Americans say they want to make these decisions for themselves, less than a third have actually taken the time to complete an advance directive.
The forms themselves are simple, straightforward, and legal in every state. For most people it’s not the paperwork that presents the obstacle, but rather the contemplation of death and dying that precedes it.
The end of life is a difficult topic, with ethical, spiritual, emotional, and pragmatic considerations. Opening such a discussion with one’s family or friends may be challenging, but it can become an opportunity to share important ideas about life that don’t otherwise come up.
That’s why I wrote The Better End: Surviving (and Dying) on Your Own Terms in Today’s Modern Medical World endorsed by Maya Angelou, Dr. Ben Carson and others. Through real life stories and practical information, The Better End provides a tool kit for thinking about choices and making them legally binding. My goal is that completing advance directives will become as routine as renewing your driver’s license or filing a tax return.
If you’ve already completed an advance directive, review it to be sure it’s up-to-date. If you haven’t completed one, now is the time. Ask your family, friends, neighbors, and colleagues to do the same. This is one aspect of health care reform that depends entirely on individual action. Let’s do this together.
Dan Morhaim, M.D. is board-certified in Internal Medicine and Emergency Medicine, Maryland state legislator now Deputy Majority Leader in the House of Delegates, and faculty at the Johns Hopkins School of Public Health. This diverse background gives him a unique perspective on health care issues.