Advance care planning is a process that allows an individual to discuss and document his or her preferences and values regarding medical care in the case of a serious or life-limiting disease. This medical and legal process seeks to ensure that patients receive the care they want in the setting of their choice. It may also reduce stress on family members and avoid conflict among them. Ideally, such advance care planning conversations would take place well before the end of life. According to one study, some 70 percent of people over the age of 60 who were in an inpatient setting and had to make a decision about treatment during the last week of life were physically unable to communicate their wishes to family or clinicians. Yet research indicates that only about 1 in 3 Americans has completed any advance care plan for the end of life.
Advance care planning typically includes a patient-initiated advance directive, which names a health care agent—an individual designated in a legal document to make a health care decision for the individual granting the power—and describes the type of care a person would want. Effective planning requires individuals to engage in potentially difficult conversations with loved ones and ensure that legal documents are available to relevant caregivers. It can also include physicians’ medical orders, such as a Do Not Resuscitate (DNR) order or Physician Orders for Life-Sustaining Treatment (POLST).
The rate at which members of racial and ethnic communities engage in advance care planning varies. For example, African-Americans are less likely to have advance care plans than non-Hispanic whites, which may reflect a historic mistrust of the health care system, less knowledge of and access to services, and spiritual beliefs (for instance, that God controls and determines the time of death). One patient in a 2016 qualitative study of African-American hospice patients and their caregivers told researchers, “I didn’t feel comfortable just going along with the doctor’s advice. I mean she obviously was the one telling me how sick I was, but I couldn’t see myself in hospice until I talked to a person at my church about it.”
This perspective supports a key finding of the examples presented in this report: Faith communities can complement health care systems as sources of information and support as people consider health care decisions in life-threatening situations. These experiences were selected from a geographically and theologically diverse group of religious communities from across the United States: a Jewish community in New York City; a group of six predominantly African-American churches in Los Angeles; a mosque in Atlanta; a United Methodist Church in Rochester, Minnesota; the Catholic Archdiocese of Los Angeles; and a nondenominational church in Fraser, Michigan. The final example discusses the work of hospital chaplains who serve people of faith and play an important role in ministering to the increasing number of patients unaffiliated with any religious organization but who nevertheless have spiritual concerns, including questions about advance care planning, as they experience serious illness.
The following examples are the product of telephone interviews with faith leaders, congregants, chaplains, and others during the fall of 2016 and early 2017. These illustrations are not representative of the full spectrum of religious thought about, or activity around, advance care planning within these communities or American society. Instead, they were selected because they offer a number of instructive stories about the ways in which people of faith are already engaged in conversations about serious illness care.
This document also includes a brief description of the advance care planning tools used in these communities and mentioned here frequently, a glossary, and the websites of organizations involved in advance care planning.
Across the examples discussed here, four themes emerged:
- Faith communities are a natural, appropriate venue for advance care planning. Many faith leaders shared stories of congregants’ relief and gratitude at the opportunity to confront difficult questions within the context of their community. Numerous interviewees called advance care planning “a gift” or “a blessing” for their families that would save them from the pain of making uninformed medical decisions when confronted by a crisis.
- For people of faith, advance care planning can be simultaneously a theological, medical, and legal process. For example, Catholic ethics distinguishes between medical care that is “ordinary,” which the dying patient must receive, and “extraordinary,” which the patient can refuse. A particular medical treatment, such as the use of a ventilator, can be either ordinary or extraordinary, depending on the circumstances. The Rabbinical Council of America recommends that Orthodox Jews present all end-of-life issues and questions to an authority on Jewish law, preferably before the issues become urgent. Attempts to engage people of faith in advance care planning should consider relevant theological teachings and include faith leaders, chaplains, or religious scholars as complementary resources for medical decision-making.
- Some faith communities make a theological distinction between actions taken to hasten death (such as suicide or euthanasia) and the decision to forgo or withdraw life-sustaining treatment when death is inevitable. Many faith communities believe that life is a gift from God and that only God can determine the time of death. At the same time, many also believe it is morally acceptable to forgo or withdraw life-sustaining medical treatment when there is little likelihood of survival. This distinction was notable in some traditions’ statements, though tremendous nuance and complexity are contained within. It is often a challenge for family members to interpret these statements in the context of an individual patient’s health situation.
- Many faith communities are open to a variety of tools for advance care planning, including trainings, workshops, sermons, book discussion groups, film screenings, forums, and even board games. These tools can be grounded in a particular theology or be universally applicable. The source of information about advance care planning matters to people of faith and should be a key consideration in developing resources. While some faith communities welcome outside experts, others prefer that information come from trusted community leaders.
These experiences demonstrate that, for people of faith, preparing for death can be not only a gift they provide to their family, but also a way to express their faith in God’s plan; it can be an expression of religious gratitude for life and the anticipation of a better world. The people portrayed here do not express a conflict between trusting in God and documenting their medical choices. For them, advance care planning can be an enactment of that very trust, and a way to embrace their faith to the end of their lives. These examples are intended to provide thought leaders in religious communities and the health system with examples they might use to enact similar collaborative models in their own communities.
Why Faith Leaders Are Talking About Dying: A Q&A With Gwendolyn Phillips Coates
How she’s educating African-American communities about end-of-life planning.
Why Faith Leaders Are Talking About Dying: A Q&A With Pam Pilote
How she’s helping church congregants advocate for themselves.
Why Faith Leaders Are Talking About Dying: A Q&A with Wendy Fenn
How her experience as a hospice chaplain helps educate others.
Why Faith Leaders Are Talking About Dying: A Q&A With Y. Khalid Siddiq
How he's overseeing outreach programs and education.