Advance Care Planning at Transitions in Care: Challenges, Opportunities, and Benefits

Introduction

A majority of residents in long-term care (LTC) are at risk for frequent hospitalizations, functional decline, and death.^1,2 Transitions from the hospital, with declines in functional status, with new life-threatening diagnoses, are common in LTC. These transitional events are opportunities to review resident/family understanding and update goals of care. Ideally, conversations about advance care planning occur prior to admission to a LTC community; however, this is not always the case. Even if an advance care planning document exists, it should be reviewed.

Advance care planning discussions are a genuine opportunity to elicit residents’ goals and preferences about their healthcare. This type of planning is essential to high-quality care in the LTC setting. In LTC, clinicians can use significant transition points (ie, admission/readmission, significant changes, transfer) for advance care plan discussions. In the LTC setting, the multidisciplinary team assigned to each resident is responsible for initiating and following through with the advance care planning process.

The care team may include a nurse, social worker, dietician, physical therapist, recreational therapist, chaplain, personal care aide, administrator, and physician. This team is often charged with eliciting preferences in the LTC setting when no previous advance care planning document exists. One approach could be to incorporate these questions into the initial care planning process at the time of admission by utilizing a family meeting. Whenever the resident’s care plan is reviewed or modified, it is also necessary to ensure that the resident’s (and family’s) goals of care are updated.

Unique Challenges

The challenges faced in LTC include a high prevalence of cognitive impairment, unclear decision-making status, distant families, unclear or conflicting documentation, and conflicts within the care team. Over half of all nursing home residents have some degree of cognitive impairment, but a little less than half have the diagnosis of dementia in their record.³Family members of LTC residents often are needed to help discern a resident’s values and preferences to act as surrogate decision makers. Unfortunately, many may live far away, thus limiting their contact with their loved one, as well as limiting their full understanding of the resident’s clinical picture.

Communication with families may sometimes be over the phone and not in person. This makes it much more difficult to perceive nonverbal cues and risks misinterpretation of language. There may also be an underestimation or lack of understanding of the effect of any underlying family conflict. Other LTC residents may not have any living relatives, which presents a legal problem of finding a healthcare power of attorney if the patient has lost decision-making capacity. (This discussion is beyond the scope of this article.) Staff involvement may add another layer of complexity to the communication when a resident in the LTC community has staff members who feel like “family.” This attachment can cause decisions for end-of-life care to be difficult for the multidisciplinary team to follow. In addition, the medical record may be too complex to navigate and/or the advance care planning form too limited (or too cumbersome), making it arduous for clinicians or other members of the LTC team to complete.

Approaches of Advance Care Planning Discussions

To abide by a resident’s wishes and provide a plan of care that is congruent with his/her goals of care, advance care planning conversations are crucial. There are different approaches to advance care planning communication opportunities: goal-based discussions; treatment-based discussions; and code discussions.

Goal-Based Discussions
Gillick⁴ suggests that the most useful approach to advance care planning in the nursing home setting is goal-based rather than treatment-specific. The three common overarching goals include: (1) maximizing comfort; (2) maintaining function; and/or (3) prolonging life. This approach requires the patient and care team to prioritize the resident’s goals in order to guide medical decision-making, as often patients desire all three possible goals. It is important to weigh the benefit and burden of each therapy in light of the resident’s goals and priorities. For each of these goals, it is important to appreciate the following: (1) which illnesses and symptoms can effectively be treated within the LTC setting and which clinical problems require hospitalization; (2) what the functional impact of recurrent exacerbations of illness and multiple hospitalizations is on the resident; and (3) how likely it is that the resident will be able to return to his/her prior functional status. It may be helpful to think about how to transform goals into advance care planning for the LTC resident by creating three pathways: always hospitalize; hospitalize depending on the situation; and do not hospitalize. While “hospitalize depending on the situation” may seem ambiguous, it also depends on the resources available to treat conditions within the context of the LTC setting.

Future Treatment-Based Discussions
As residents age and have chronic disease progression or malignancies, it is important to discuss what types of future treatments are preferential. This includes hospitalizations, antibiotics, feeding tubes, and dialysis. For example, a resident may elect to have antibiotics to treat infections and defer a feeding tube in the event that he/she is diagnosed with a life-limiting condition. In certain medical circumstances, a resident may or may not be interested in dialysis. This approach often leads to the documentation of an advance directive to guide care in the event that a resident loses capacity in the future and is diagnosed with a life-limiting condition. Advance care planning options include completing a living will, healthcare power of attorney, or Five Wishes document.⁵ In addition, Physician Orders for Life-Sustaining Treatment (POLST) forms are used to record a resident’s current treatment preferences about going back to the hospital, or having other potentially life-prolonging treatments such as mechanical ventilation or a feeding tube in the future should his/her condition deteriorate.^6,7 Such POLST-like documents require a physician signature and guide treatment in the future in the event that the resident loses capacity to make informed decisions in real time. Converting the discussion into the appropriate legal document may vary by state (https://www.caringinfo.org/AdvanceDirectives).

Code Discussions
In the LTC setting, much like the hospital setting, a Code Status must be documented. While this documentation is limited to cardiopulmonary status, it is ideally based on the resident’s current clinical status, as well as what is known about his/her values and preferences. Code Status other than full code (which is the default position) requires a physician order and associated documentation of an informed consent discussion with patient and/or family. These different approaches may overlap or build on each other. For instance, discussing goals will help with treatment-based discussions and code discussions. Pivotal transition times, such as discharge from the hospital to a LTC community or deterioration in clinical situations, are key opportunities to discuss plans with residents and/or their families.

How to Have the Conversation and Facilitate the Family Meeting

Incorporating an advance care planning discussion into a family meeting with the LTC team allows for a vitally important communication and joint decision-making opportunity. The family meeting allows all participants, including the resident, to hear the same discussion, provides an opportunity for all to voice their thoughts, and allows for building consensus in the development of a resident’s individual plan. This approach is also arguably a much more efficient use of time than multiple phone calls or conversations. There are a few key components for a successful conversation and/or family meeting in the LTC setting, adapted from Weissman’s⁸ steps for conducting a family conference:

1. Pre-meeting. The first step is often the most important. Here, clinicians who are involved in the resident’s care gather as much information as possible about the resident/family/clinical picture to outline goals for the meeting and decide on the medical recommendations for the resident/family. If there is an advance care planning document, this should be reviewed for validity. The team needs to have a clear understanding of the clinical picture and prognosis. It is also imperative to resolve any conflict that may exist within the team prior to meeting with the resident and/or family. An important construct for framing medical decisions is to understand the benefits and burdens of medical interventions and balance these considerations with quality of life to develop treatment plans. It is also important to decide which clinicians and which family members will attend the meeting depending on availability and the centrality of their relationship with the patient, as well as whether the resident should attend. One useful tool for family members who live far away is to conduct a conference call using a speaker phone.

2. Find out what the resident/family knows. Be sure not to make any assumptions with this step. It is helpful to understand what the resident/family already understands and knows about the clinical situation. Some initial questions could include: “What is your (resident or family) understanding of the medical situation?” or “Tell me how your (resident’s) medical condition has affected you (your family) over the past year?”

3. Determine decision-making capacity. If the resident does not have decision-making capacity, then discuss with the appropriate surrogate decision maker. If a healthcare power of attorney is not designated, then follow state laws about who would be the appropriate decision maker.

4. Understand the resident’s condition and goals of therapy. A review of the resident’s clinical status and medical information can help clarify the situation, paint the “big picture.” For example, one might say to a family: “Over the past few months your loved one has had multiple hospitalizations, weight loss despite eating, sleeping more, and the staff has noted overall decline.” For those without decision-making capacity, their substitute decision maker should be focused on what are his/her best understanding of the wishes and goals of the resident if they could speak for themselves. One way to focus this discussion is to ask the surrogate: “What would your loved one say if he/she was able to express himself/herself right now?” It can be important to acknowledge that sometimes treatment preferences do change when medical conditions change.

5. Present options and recommendations based on goals. After the resident and family feel that they have been heard, the next step is to restate the resident’s goals and present treatment options or recommendations based on what is known about the resident's condition and medical options in light of these goals. Focusing on how the residsent would balance the three potential goal-based preferences (maximizing comfort, maintaining function, and prolonging life) in light of his/her medical condition can be most helpful for the LTC population.⁴ By first deciding on goals of therapy, it may be easier to tailor decisions about specific interventions such as testing, invasive or uncomfortable tests and treatments, or transfer to the hospital or Intensive Care Unit. For example, one resident may prefer to maximize comfort but also maintain function and prolong life. This could lead to a care plan that would forgo blood tests and intravenous therapy but allow a noninvasive test such as a chest radiograph to guide treatment of pneumonia with oral antibiotics. Another resident might prefer comfort only and would not want to pursue life-prolonging measures, which could mean forgoing testing and antibiotics but actively treating symptoms of pain and dyspnea. If hospice is an appropriate option, then a statement can be added such as: “Hospice is able to provide more services and support in the nursing home” or “The hospice team has a lot of experience in caring for those who are seriously ill in the nursing home.”⁹

6. Make a plan together and document it. Transform the discussion into a practical and realistic plan by establishing common goals. For example, determine whether the test or procedure will meet the patient’s stated goals. If not, maybe it should not be started. Then summarize the plan for the resident/family/team for all to hear at once, and confirm consensus. When there is not a clear consensus about the goals of care after one meeting, be flexible and plan a follow-up meeting. Remember that this type of decision-making is a process, and sometimes consensus cannot be negotiated during the first discussion. It is also important to acknowledge that the resident's medical condition may change over time, and that the resident/family has the right to readdress or alter goals of care. Documenting the discussion in the chart is also important. The note should include: those who were present for the meeting or conversation; the clinical picture and prognosis; and decisions about treatment options, trials, and/or follow-up plans.

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Case Scenario
Mr. W is an 87-year-old gentleman with mild Alzheimer’s disease and end-stage chronic obstructive pulmonary disease (COPD), who is residing in the nursing home of a continuous care retirement community. He wears continuous oxygen and self-propels in a wheelchair. He is widowed with two living sons who visit during the holidays and periodically phone the charge nurse to see how their father is doing. He has had three hospitalizations over the past year either for pneumonia or exacerbation of his COPD. During one of the hospitalizations, he required ventilator support for a few days, and during the last hospitalization he was restrained after becoming confused at night and trying to get out of bed. Mr. W and his family are struggling with whether or not hospitalizations are beneficial. The LTC interdisciplinary team is preparing to review his plan of care; the team feels that future hospitalizations would be burdensome for Mr. W and would like to recommend providing care for his exacerbations within the LTC community with a focus on symptom management for optimal comfort. Mr. W appointed his eldest son as his power of attorney for healthcare and financial matters when he started to wear oxygen continuously, as this is when he realized that he was ill. Mr. W’s eldest son was put on speaker phone for the LTC interdisciplinary team meeting. Even though Mr. W defers to his son to make complex medical decisions, he attended the meeting. The meeting began with Mr. W and his son describing how the past year has been for him physically and emotionally. The team discussed Mr. W’s repeated hospitalizations over the past year and shared their impressions of how Mr. W was doing clinically. When asked what brings him pleasure, Mr. W reported how he enjoyed social activities, listening to jazz, and playing bingo. He also stated that he does “not like to go the hospital because I come back weaker than before I left.” His son listened to the team discuss the different treatment options and balanced them with the quality of life that his father had spoken to him about in the past. Mr. W and his son agreed with the LTC team that it was time to stop hospitalizing him and realized that he may not survive the next exacerbation; however, he needed time to think about hospice enrollment. He wanted to continue to treat medical problems as they arise within the abilities of his LTC community with a focus on symptom control and comfort.
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Summary

Key moments in the life of a LTC resident provide opportunities to fully address advance care planning. Care transitions, for instance, from one site of care to another, or to a lower functional status, often signify key moments. At these times of transition, it is important to review what the patient understands, how the transition has affected his/her goals of therapy, and update the care plan and advance directive accordingly. One of the most useful tasks is to prepare and to pre-plan for any conversation or family meeting. Advance care planning as a part of the resident’s overall plan of care needs to be based on a combination of medical and quality-of-life goals. A helpful approach could be to incorporate advance care planning into the overall care planning process and utilize a family meeting structure.

The author receives support from Geriatric Academic Career Award (GACA) grant HRSA GACA - K01 HP00084-02. The author reports no relevant financial relationships. Dr. Corcoran is Assistant Professor of Clinical Medicine, Department of Medicine, Division of Geriatrics, University of Pennsylvania School of Medicine, Philadelphia.

Acknowledgments

Special thank you to Drs. Timothy Quill, William Smucker, and Karen Hirschman for reviewing drafts of this manuscript. Authors of the series “Palliative and End of Life Care in Long Term Care” are members of the American Medical Directors Association’s Palliative Care Workgroup.

References

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5. Aging With Dignity. Five Wishes. https://www.agingwithdignity.org/five-wishes.php. Accessed March 22, 2010.

6. Hickman SE, Tolle SW, Brummel-Smith K, Carley MM. Use of the Physician Orders for Life-Sustaining Treatment program in Oregon nursing facilities: Beyond resuscitation status. J Am Geriatr Soc 2004;52(9):1424-1429.

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