Planning Ahead Makes End-of-Life Care Easier for Everyone
Too often, planning for end-of-life care is left to the end of a life. But that stressful, chaotic time is often too late for a patient to make his or her wishes clear, and difficult decisions are left to be made -- and sometimes argued about -- by their relatives.
It doesn't have to be that way.
One of my severely disabled patients, who was in his 30s, recently died after a lengthy illness. His mother choose not to prolong his life with a feeding tube and watched her son waste away. She was at peace with that painful -- but correct -- decision because the family knew what was coming, had time to think it through and was prepared when the time came. My patient died peacefully, painlessly and without fruitless interventions because of advance planning.
End-of-life care is a compelling topic that needs to be discussed before a patient has a health crisis. Unfortunately, a minority of patients will bring up advance directives or living wills with their doctors. More than likely, it will be up to us as family physicians to broach the subject, and that discussion shouldn't wait until a person is in transition from healthy patient to terminally ill.
Too many people think, "It can't happen to me," but the reality is that serious accidents and life-threatening diseases can -- and do -- strike young, healthy people.
Remember Terri Schiavo? She was 27 when she suffered cardiac arrest and brain damage due to a lack of oxygen. Schiavo was in a vegetative state for eight years before her husband petitioned to remove her feeding tube. With Schiavo's wishes unclear, her parents challenged that petition, sparking a seven-year legal battle that reached the Florida Supreme Court.
With a little guidance from us, patients can plan ahead, make their wishes known and reduce the burden on their family during an already difficult time.
We can discuss the subject of end-of-life care in a nonthreatening way far in advance of a patient needing it if we bring it up as a routine matter in the same way we regularly ask "What meds are you on?" Questions about end-of-life planning should become second nature so patients become accustomed to it.
When a patient reaches the age of maturity, it's time to start the conversation. They don't have to decide everything at 18, but the conversation needs to be initiated.
Health organizations in Lacrosse, Wis., developed a community-wide planning system in the 1990s called Respecting Choices. That system includes defined roles and expectations for physicians, patient engagement, incorporating advance directives in clinical care and protocols for emergency personnel.
An evaluation of that program showed that 85 percent of adults who died in the community during an 11-month period had an advance directive, and treatment decisions were consistent with patients' wishes 98 percent of the time when they did have directives.
The program now has been initiated in more than 80 communities in the United States.
Though many of our communities don't have similar initiatives, that doesn't mean patients can't be proactive or that their physicians shouldn't encourage them to plan ahead. Several models have been developed that are more specific and more useful than standard do-not-resuscitate forms or living wills. Here are just a few.
Five Wishes is an advance directive that covers more issues than a typical living will or power of attorney document. The document, which meets legal requirements in more than 40 states, lets physicians and a patient's family know:
- who should make health care decisions for a patient when they can't;
- medical treatment they want (or don't);
- how comfortable they want to be;
- how they want to be treated; and
- what they want loved ones to know.
"Let Me Decide" is an advance directive book written by a geriatrician. Each book contains a four-page form designed to clearly state patient's wishes, as well as a sample form. The author encourages patients to consult their health care professional before completing the document.
The document is designed to:
- give individuals the opportunity to choose different levels of treatment according to his or her wishes;
- relieve family and friends from the burden of decision making; and
- guide physicians in making important decisions when family members are unavailable.
Physician Orders for Life-Sustaining Treatment, or POLST, uses a form that converts patient preferences into written medical orders based on a health care professional's conversation with the patient and/or a proxy. POLST programs have been implemented in at least a dozen states and are in development in at least 20 more.
The AAFP also has resources that can help. American Family Physician offers a collection of articles on end-of-life care. FamilyDoctor.org offers resources for patients, including information about advance directives and do-not-resuscitate orders.
Regardless of what approach is used, patient interaction with a physician and documentation of their wishes is critical. Some physicians feel uncomfortable having this discussion because it is an emotional, complex task, and reimbursement also is an issue. But we can help our patients, their families and the health care system by encouraging patients to have a plan in place.
How do you talk to your patients about end of life care?
Richard Madden, M.D., of Belen, N.M., is a second-year member of the AAFP Board of Directors. He is a practicing family physician and a clinical assistant professor of family and community medicine at the University of New Mexico School of Medicine, Albuquerque.