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Advance Care Planning Basics: What Is It, and Why Does It Matter?

Editor’s note: This is the first article in a multipart series about advance care planning and how to operationalize an effective program in nursing homes.


The surveyor guidance under F578 (Request/Refuse/Discontinue Treatment; Formulate Advance Directives) in Appendix PP of the State Operations Manual defines and discusses advance care planning as follows:


“Advance care planning” is a process of communication between individuals and their healthcare agents to understand, reflect on, discuss, and plan for future healthcare decisions for a time when individuals are not able to make their own healthcare decisions. …


The ability of a dying person to control decisions about medical care and daily routines has been identified as one of the key elements of quality care at the end of life. The process of advance care planning is ongoing and affords the resident, family, and others on the resident’s interdisciplinary health care team an opportunity to reassess the resident’s goals and wishes as the resident’s medical condition changes. Advance care planning is an integral aspect of the facility’s comprehensive care planning process and assures re-evaluation of the resident’s desires on a routine basis and when there is a significant change in the resident’s condition. The process can help the resident, family and interdisciplinary team prepare for the time when a resident becomes unable to make decisions or is actively dying.


But what exactly does that mean? “The commonly used definition of advance care planning is that it is a process to support a person in understanding and ensuring their values, goals, and preferences regarding future medical care,” says Shigeko (Seiko) Izumi, PhD, RN, FPCN, associate professor in the School of Nursing at Oregon Health & Science University in Portland, OR; presenter of the April 22 webinar “COVID Conversations: Team Approach To Assisting Patients With Advance Care Planning” from the Coalition for Compassionate Care of California; and co-author of “A Model to Promote Clinicians’ Understanding of the Continuum of Advance Care Planning” in the Journal of Palliative Medicine (2017; 20(3):220-22).


“It’s very important to know the resident’s values, goals, and preferences of future care and then to share that information with families and other healthcare providers so they understand what kinds of care the resident wants when that resident is unable to make their own decisions or cannot express their wishes,” she explains.


There are two main types of advance care planning tools:


1. Advance directives. An advance directive legally identifies a healthcare surrogate or proxy to make decisions for a person when they can’t participate in those decisions (e.g., they become too ill or develop advanced dementia). An advance directive also can be used to set forth a person’s values, preferences, religious beliefs, and general treatment preferences.


The surveyor guidance under F578 in Appendix PP of the State Operations Manual specifically defines an advance directive as “a written instruction, such as a living will or durable power of attorney for health care, recognized under state law (whether statutory or as recognized by the courts of the state), relating to the provision of health care when the individual is incapacitated.” See §489.100. Federal regulations require that nursing homes determine “on admission whether the resident has an advance directive and, if not, determine[e] whether the resident wishes to formulate an advance directive.”


Advance directives can be applicable to both short-stay and long-stay residents, no matter how healthy they are, stresses Izumi. “Setting up a time to have a conversation and helping residents to identify the surrogate decision maker who can make a decision for them when the time comes are important baseline steps in the advance care planning process for all residents.”


2. Portable medical orders. These documents include, for example, POLST (Physician Orders for Life-Sustaining Treatment) forms, MOLST (Medical Orders for Life-Sustaining Treatment) forms, MOST (Medical Orders for Scope of Treatment) forms, and the much more limited do-not-resuscitate (DNR), do-not-intubate (DNI), and do-not-hospitalize (DNH) orders. A person who is quite ill or frail may want to complete physician-signed portable medical orders that detail specific treatments that person does or doesn’t want.


“The difference between advance directives and medical orders—and how they work together—often is an underlying source of confusion for residents and their families,” says Susan Tolle, MD, director of the Center for Ethics in Health Care at Oregon Health & Science University in Portland, OR.


“Residents often think, ‘If I have filled out an advance directive and I have appointed my children to make decisions for me, then I have taken care of everything,’” says Tolle. “And they have taken care of an extremely important component of advance care planning. However, if they are extremely ill or frail, you want to encourage them to take the next step of creating medical orders that turn their values into concrete actions in the event of an emergency. The four-minute video ‘POLST: When Advance Directives Are Not Enough’ from Oregon POLST can help you explain the difference to residents and their families.”


Note: For additional information about how these tools fit into the advance care planning process, see Understanding Advance Care Planning, Standard of Care and Advance Care Planning, and Guidance for Health Care Professionals to Identify Appropriate Patients for POLST from National POLST.


“Advance care planning discussions of medical orders often focus on DNR, DNI, and DNH orders because resuscitation and intubation are major steps that can leave patients with long, difficult processes of recovery if they do survive, and obviously whether the resident wants to return to the hospital is the biggest decision,” says Margaret Drickamer, MD, the medical director at UNC Home Hospice & Hospice Home and associate program director for education and clinical care in the Geriatric Fellowship Program at the University of North Carolina–Chapel Hill School of Medicine.


“However, staying in the nursing home often is not an extremely limiting decision. There is a panoply of care options available in many nursing homes compared to what’s available at home or in assisted living,” says Drickamer. “Consequently, you want to address those basic DNR, DNI, and DNH questions, but you also should discuss most of the treatment options on a POLST or MOST form with residents or their proxies. For example, does the resident want intravenous medications of the type that the nursing home can provide? Do they want intravenous hydration?”


Nursing home residents aren’t required to complete any advance care planning documents, states Izumi. “Several years ago, some providers misunderstood the purpose of the POLST form and made completing it a requirement for nursing home admission. However, many residents are relatively healthy on admission. For example, a 70-year-old resident with no comorbidities who is admitted for skilled therapy following a hip or knee replacement usually doesn’t need a POLST. The type of care they would want when they are relatively healthy could be very, very different from what they would want if they were in declining health. Consequently, it is important to remember that advance care planning is an ongoing process, not a one-time event. Ideally, advance care planning conversations should start when people are healthy and be revisited again and again when their health or values change.”


Advance care planning is person-centered care

Developing an effective advance care planning program is the next level of providing person-centered care, advises Izumi. “No one wants to provide care that residents don’t want to receive—up to and including at the end of life. Knowing and acting on what is important to residents benefits both residents and providers. Residents will receive care that aligns with their goals and values, giving them feelings of respect and control. In addition, nursing homes will be able to provide person-centered care, reducing unnecessary resource use and burden on the healthcare system—and improving family and caregiver satisfaction about the care being provided.”


Note: The Centers for Disease Control and Prevention (CDC) offers a free introductory online course, Advance Care Planning.


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