Laws regulating advance care planning (ACP) have been in place in all 50 states since 1992 to help assure that patients receive care at the end of life that is consistent with their values and treatment preferences. However, according to the American Association of Retired Persons (AARP)1, at this time, fewer than 40 percent of U.S. adults have created a living will.
Goal of advance care planning
The goal of advance care planning (ACP) is to allow patients to retain control over the life-prolonging treatment they receive. It is a process that at its best includes communication between patients, their family, and their healthcare providers and is done with consideration of the patient’s relationships and culture. This can then drive specific medical treatment decisions to be recorded in an advance directive, a traditional Health Care Power of Attorney (HCPOA) and Living Will (LW).
These documents are not only for the older person and those who are ill. Directives should be completed by all patients along the healthcare continuum. There actually needs to be a shift to earlier completion when people are healthy and independent. Anyone may face a sudden and unexpected acute illness or injury with the risk of becoming incapacitated and unable to make medical decisions. An agent appointed as a HCPOA is someone who can make decisions for another as the end of life approaches, but also can make decisions even for a time when a person is temporarily unable to communicate his/her own choices, such as following an accident when someone is likely to get well.
The LW is a written statement of the patient’s personal choices regarding life-sustaining treatment and other end-of-life care. There is some misunderstanding about when a LW becomes effective; it is only when a patient is incompetent and has an end-stage medical condition or is permanently unconscious.
Significant barriers exist to ACP. People think they need a lawyer; individuals do not know where to get forms; they are not sure what their preferences would be. And, patients don’t know how to engage in a crucial element: the conversation with family and doctors.
Medical practitioner role
To reduce barriers, the American Medical Association (AMA) advises physicians2 to:
(a) Regularly encourage all patients, regardless of age or health status, to: think about their values and perspectives on quality of life and articulate what goals they would have for care if they faced a life-threatening illness or injury known to their designated surrogate and to (other) family members or intimates.
(b) Be prepared to answer questions about ACP, to help patients formulate their views, and to help them articulate their preferences for care (including their wishes regarding time-limited trials of interventions and surrogate decision maker). Refer patients to additional resources for further information and guidance if appropriate.
(c) Explain how advance directives, as written articulations of patients’ preferences, are used as tools to help guide treatment decisions in collaboration with patients themselves when they have decision-making capacity, or with surrogates when they do not, and explain the surrogate’s responsibilities in decision making. Involve the patient’s surrogate in this conversation whenever possible.
(d) Incorporate notes from the advance care planning discussion into the medical record. Patient values, preferences for treatment and designation of surrogate decision maker should be included in the notes to be used as guidance when the patient is unable to express his or her own decisions. If the patient has an advance directive document or written designation of proxy, include a copy (or note the existence of the directive) in the medical record and encourage the patient to give a copy to his or her surrogate and others to help ensure it will be available when needed.
(e) Periodically review with the patient his or her goals, preferences and chosen decision maker, which often change over time or with changes in health status. Update the patient’s medical records accordingly when preferences have changed to ensure that these continue to reflect the individual’s current wishes.
Recommendations for patients
To facilitate the process of advance care planning, practitioners can direct patients to useful online ACP tools that include:
Prepare for Your Care, an interactive website serving as a resource for families navigating medical decision making. https://prepareforyourcare.org/
The Conversation Project, created with a goal to have every person’s wishes for end-of-life care expressed and respected. Users may access the project’s “Starter Kit” at the site. https://theconversationproject.org/
My Directives helps a user to create, share and store an ACP directive. https://mydirectives.com/
Recommendations for doctors
Finally, ACP is not only a professional responsibility, it is personal act. Many doctors are reluctant to initiate discussions about end-of-life planning with their patients and with their own family or to make their own advance care plans. It is never too soon to talk to loved ones about what they would want if they could not speak for themselves. Let your loved ones know your choices, too. You and your family can follow up by completing your own personal ACP documents and storing them in place where they can be readily found in an urgent situation.
Since 2016, CMS has been providing reimbursement to physicians for ACP services in both facility and non-facility settings and it is not limited to particular specialties. It is a voluntary service which patients may decline, and there are no limits on the number of times ACP can be reported for a given beneficiary.
For billing purposes, CPT code 99497 is used for the first 30 minutes of face-to-face ACP, including the explanation and discussion of advance directives with a patient, family member or surrogate; CPT code 99498 can be used for each additional 30 minutes.
Amanda Singleton, Why All Adults Should Have a Living Will, AARP, August 14, 2019, https://www.aarp.org/caregiving/financial-legal/info-2019/what-is-a-living-will.html
AMA, Advance Care Planning, Code of Medical Ethics Opinion 5.1. Retrieved March 2, 2020 https://www.ama-assn.org/delivering-care/ethics/advance-care-planning