Advance Care Planning Affects the Smallest and Biggest Decisions
Terminally ill woman attributes her peace to advance care planningJanuary 3, 2013
This article originally appeared in the Huffington Post on November 14, 2012.
By Mary F. Mulcahy
Jane has voted in every election since she was 18. Now 33, she's disappointed that she missed heading to the polls for the first time last week. But Jane has a lot of things to be disappointed about. She knows she is going to die soon. She knows that she will not survive long enough to see the benefits or consequences of her vote. So in the company of less than 60 percent of age-eligible voters in America who exercise their right, why did Jane want to cast her ballot? She votes to fulfill her civic duty. She votes because she believes her vote makes a difference. She votes to impact her daughter's life. She votes to maintain some normalcy in her own life.
Jane was diagnosed with liver cancer at the age of 31 -- a rare occurrence in someone so young and with no underlying disease. She had surgery, but her cancer returned. Since then, she has undergone other operations and has pursued standard and experimental therapies. She has exhausted every medical option available, and now Jane has changed her focus toward creating memories and a secure life for her 1-year-old daughter.
When her cancer returned, Jane and I had a difficult discussion about her future through the process of advance care planning. We identified personal goals and values that defined her own acceptable quality of life. We identified the characteristics and features that define her self-worth. Jane is a single mother, a teacher, a daughter, a sister, a member of her community.
As a single mother, Jane recognized that her daughter's well-being was to be the focus of what life she has left. Certainly, she dreams of watching her daughter grow up, attending her graduation, and seeing her grow into an independent woman. Despite Jane's own young age, she is able to realize that death is inevitable, and she has taken steps to control what she can.
Jane has appointed her health care power of attorney to speak on her behalf and make decisions if she is unable. She has provided her advance directives, outlining the extent of medical therapy she would want when her health deteriorates. Most importantly, she has discussed these goals and values with her family, and in doing so, she has relieved them of any burden or guilt that so often accompany end of life decisions.
Having completed these steps, Jane can now focus her time and energy on creating a legacy for her daughter. As her health declines, Jane's role within her family and community will change. She will no longer be able to serve as the caregiver; instead, she will need one herself. She will mourn the loss that this transition entails.
To Jane, going to the polls Nov. 6 was an important contribution to her community, an example for her daughter, and an affirmation of her personal value. When she awoke at 3 a.m. on Election Day with severe abdominal pain, she came to the emergency room and was admitted to the hospital. She is sad about the loss of her last opportunity to vote, but she is focusing her thoughts on planning for the upcoming holidays.
Why is Jane able to grasp the inevitability of her death and cope so productively? She is not particularly spiritual, nor has she ever suffered loss in her own family. She attributes her peace to ongoing conversations and exploration of her personal values -- her advance care planning.
A recent study from the Dana Farber Cancer Institute in the Annals of Internal Medicine demonstrates that while most patients with advanced cancer in this specialty center have had end-of-life discussions, they tend to occur during acute hospital care, with providers other than their primary oncologist, and late in the course of their illness. They tend to focus on advance directives rather than advance care planning.
Advance care planning is a dynamic process that evolves over time as a person's health goes from well, to ill, to ultimately terminal. Less than 10 percent of people will die suddenly; most of us will experience a protracted life-threatening illness. Medical advances have led to few cures of illness, have prolonged the experience of living with chronic illness and have prolonged the process of dying. Add to this the fact that for the next 18 years, baby boomers will be turning 65 at a rate of about 8,000 each day, and it is clear that the role of advance care planning needs to be embraced.
The barriers to effective advance care planning are numerous. There are individual attitudes of death and dying to contend with; there are heath care barriers of discomfort with these personal conversations, time constraints, and a feeling of perceived failure on the part of the medical community. It is imperative that we, as patients, health care providers and members of society, overcome these barriers and remain active in pursuing our personal values and goals.
Jane is a role model for civic mindedness and an example of successfully navigating through life's toughest challenge.
- Mary F. Mulcahy is an Associate Professor in the Department of Hematology Oncology at Northwestern University's Feinberg School of Medicine.