Advance Care Planning: Helping Others Help You

As individuals and families begin to think about aging, they tend to focus on the completion of advance directives, such as a living will or durable power of attorney for healthcare. While these are important documents designed to preserve the right of patients to refuse medical treatment, advance directives are only one part of the advance care planning process.

Advance care planning (ACP) aims at a more comprehensive goal than the completion of an advance directive by integrating these four elements:

  1. A conversation about what matters most to an individual
  2. An inquiry into when to shift the goals of medical care
  3. A commitment to help people live as well as they can for as long they can
  4. An educational process that guides surrogate decision-makers when they are called upon to make the decision their loved one would have made if he or she had the capacity to do so

ACP begins with conversations about what matters most to patients so that they will get medical care focused on improving their quality of life. This is especially important when clinicians are working with patients who have irreversible conditions and the treatments are quite burdensome. Without this knowledge, they cannot provide care that meets their patients’ goals.

By focusing on quality of life considerations, ACP answers a crucial question: When should the goals of care change from prolonging life despite the suffering that treatment causes to relieving suffering even if the treatment might unintentionally shorten life? Clearly, this is a momentous decision with potentially irreversible consequences.

However, an increasing number of studies show that patients who enroll in hospice live longer and enjoy a higher quality of life than patients who continue to receive care designed to prolong life. The take-away is that care designed to improve the quality of life often lengthens life, too.

ACP also responds to questions about staying at home, going to the hospital, or being admitted to the ICU. In each case, the answer depends on quality of life: Is it enjoyable enough to prolong or is the suffering so severe that comfort becomes the overarching goal? Of course, this question cannot be answered if the patient has not been able to express what matters most to him or her, which is why robust conversations that continue as the patient’s life and medical condition changes are so crucial.

Ultimately, ACP benefits the family and friends of patients as well as clinicians. Not only do clinicians learn how to help patients live as well as they can for as long they can, they also learn when patients no longer benefit from treatment that is intended to prolong life. Family and friends are similarly served. When they are called upon to make decisions on behalf of a patient, surrogates will be as well-prepared as possible to stand in the patient’s shoes and make the decision the he or she would have made.

By engaging an individual in an ongoing conversation about what matters most to him or her, clinicians, family members and friends can be faithful to the patient’s personal belief of what makes a life worth living. ACP identifies when to shift the goals of care from simply prolonging life to relieving a person’s suffering.

About the author: Niel Rosen, JD, Ph.D., is a Hospice volunteer and the Founder & Director of Living Well Advance Care Planning Services.


To schedule a care management consultation with JSSA’s Senior Services, please call us at 301-816-2633 in Maryland or 703-896-7918 in Virginia.

Stay connected and up-to-date on what's new at JSSA.