Taken from the January/February 2015 issue of the Women's Health Activist Newsletter.
As described in renowned cartoonist Roz Chast’s graphic memoire about her aging parents, Can’t We Talk About Something More Pleasant?, discussing death can be daunting.1 In one sequence Roz asks, “So, do you guys ever think about…THINGS?” Her parents retort, “What kinds of THINGS?” They all then carefully tango around any mention of her parents’ eventual demise. Everyone is both relieved and despondent that, once again, they’ve avoided discussing “THINGS.”
Americans are getting better at having these conversations. Yet, the Institute of Medicine’s report, Dying in America, recommends that end of life (EOL) care be significantly reshaped to lessen people’s suffering, honor their preferences, and decrease the tremendous financial burden of how we do “THINGS” in the United States.2
A related concept is “death with dignity,” or the right to die. This issue recently came to prominence through Brittney Maynard, a 29-year-old Californian diagnosed with an aggressive brain cancer. Unable to access “physician aid in dying” in her home state, she moved to Oregon to legally access this compassionate EOL option. Her articulate description of her plight put her on the front cover of People Magazine, a sure sign that an idea’s entered the mainstream.3 Five states have death with dignity laws (MT, NM, OR, VT and WA), and eight states had legislation pending at press time (CA, CT, MA, MT, NJ, NM, NY, VT).4
While it’s obvious that someone with aggressive cancer needs to discuss their EOL philosophy with their loved ones, it is important for all of us to think through our personal EOL preferences and discuss them with our family and close friends. As physicians, we’ve seen very difficult situations arise when a previously healthy person has a sudden, devastating illness or injury and their dazed friends and family have to make complex medical and EOL decisions based on guesswork.5
Your EOL wishes are best expressed through three legal documents: an Advance Directive (AD), The Five Wishes, and the Physician Orders for Life Sustaining Treatment (POLST).
Advance Directives vary from state to state, but all allow you to designate a medical decision-maker to ensure that your instructions are honored. Your medical decision-maker cannot be your physician or anyone else who is directly involved in your health care. It is critical to pick someone who will express your wishes rather their own, especially in life or death situations. An AD can also indicate whether you want to continue life support if you have little or no chance of a meaningful recovery — please note that “meaningful recovery” varies from person to person, so you need to tell your medical decision-maker what it means to you!
Advance Directives generally don’t outline nuanced decisions, however. A more “user-friendly” document is The Five Wishes, now legal in 42 states and available in 26 languages.6 Sometimes called “the living will with a heart,” The Five Wishes was developed to give patients and their families a simple way to describe the care they want (or don’t want) when dying, what they want to happen to their body after death, plans for their memorial service, and other issues. It guides families through difficult conversations about the “THINGS” Roz Chast and her parents assiduously avoided.
The POLST form is legal or in pending legislation in 46 states.7 This one-page form is completed by an individual (or their medical decision-maker) and their physician, and indicates whether the person wants cardio-pulmonary resuscitation, artificial nutrition, and the intensity of treatment desired (full, limited, or comfort-care). Once signed by a patient and his/her physician, the POLST legally binds all physicians who encounter that patient to follow its directives. For example, if a person has to go to an Emergency Room (ER), the physicians must follow the POLST rather than defaulting to the standard “everyone gets everything” ER protocol. Anyone can have a POLST, but it’s usually created for someone at high risk of dying in the next 1-2 years.
Our recommendation: Start by completing The Five Wishes (or your state’s Advance Directive), and arrange time with your trusted friends and/or relatives to talk about various scenarios and describe your EOL philosophy. Give copies of The Five Wishes to your medical decision-maker, physicians, and local hospital. You may also want to give a copy to a friend or relative. If you’re at-risk of dying in the next year or two, also complete a POLST. You can change your mind about your EOL philosophy at any time and for any reason — you just need to update your documents with clear notations if you do. This entire process, however difficult, can help you and your loved ones feel a whole lot better about “THINGS!”
Charlea T. Massion, MD, is a NWHN Board member, family physician and specialist in hospice and palliative care medicine. She is the Chief Medical Director of Hospice of Santa Cruz County and also teaches physicians about work-life balance and career development.
Adriane Fugh-Berman, MD, is an associate professor in the Georgetown University Medical Center, a former chair of the NWHN, and director of PharmedOut, which educates prescribers about pharmaceutical marketing techniques.
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1. Chast R, Can’t We Talk About Something More Pleasant?: A Memoir, New York: Bloomsbury, Publishing, 2014.
2. Institute of Medicine (IOM) Committee on Approaching Death, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, Washington, DC: IOM, 2014. Available online at: http://www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx
3. Weisensee Egan N, “Terminally Ill 29-Year-Old Woman: Why I’m Choosing to Die on My Own Terms,” People, October 6, 2014; also see Bernstein N, “Fighting to Honor a Father’s Last Wish: To Die at Home,” New York Times, September 25, 2014. Available online at: http://www.nytimes.com/2014/09/26/nyregion/family-fights-health-care-system-for-simple-request-to-die-at-home.html?_r=0
4. Compassion and Choices, In Your State, available online at: https://www.compassionandchoices.org.
5. In the Netherlands, death with dignity has a well-established pathway. For a discussion about this and other EOL issues, see this public television panel on You Tube featuring Dr. Massion: https://www.youtube.com/watch?v=oG1Af7sJo6Y.
6. The Five Wishes is available from Aging With Dignity: http://www.agingwithdignity.org/five-wishes.php.
7. The POLST form is available from the National POLST Office: http://www.polst.org