Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Adapting Advance Medical Planning for the Nursing Home

Muriel R. Gillick, MD

[Citation: Gillick MR. Adapting advance medical planning for the nursing home. Innovations in End-of-Life Care. 2003;5(3):www.edc.org/lastacts]

Introduction

Long-term care institutions are home to the frailest, oldest patients, precisely those individuals who might not want aggressive medical interventions and who are at risk of suffering iatrogenic complications from such interventions. Nursing home residents, by virtue of their multiple medical problems and advanced age, are also more likely than any other subgroup of the population to develop acute, potentially fatal illness. As a result, advance medical planning in the long-term care population is no mere theoretical exercise: decisions made about what to do if critical illness occurs have the potential to matter enormously. Given this reality—and the added observation that more than 60 percent of nursing home residents have dementia and are unlikely to be able to participate in their medical decision making at the time of acute illness—it is perhaps surprising that the nursing home is to a large extent an advance care planning wasteland.

The Current Status of Advance Medical Planning in Nursing Homes

There is some advance planning in nursing homes. There is more now than there was prior to the implementation of the Patient Self-Determination Act in 1991 (34.7 percent of nursing home residents have an advance directive now compared with 4.7 percent before the PSDA).¹ Much of the improvement, however, reflects improved documentation rather than initiation of the planning process in the nursing home. Most of the advance planning takes one of two forms: designation of a health care proxy, or institution of a "do not resuscitate" (DNR) status. Recent data indicate that about 32 percent of nursing home residents have identified a health care proxy and 74 percent have a DNR order.² Unfortunately, while both these measures are better than no advance planning, they fail to address the majority of issues facing nursing home residents. Orders to forgo artificial nutrition and hydration and orders to forgo hospitalization are written in fewer than 8 percent of nursing homes, according to a 10-state survey, and these rates have remained unchanged since implementation of the Patient Self-Determination Act.³

Establishing a health care proxy is an important step, but there is little evidence that decisions made by proxies reflect prior discussions with the elder or living wills written at an earlier point in time. On the contrary, studies have repeatedly found poor concordance between the views of patients and the understanding of those views by surrogate decision makers.⁴ Cardiopulmonary resuscitation is largely irrelevant in the nursing home (it is effective less than 1 percent of the time when trained personnel are available and the vast majority of nursing homes are not equipped to provide advanced life support).⁵ Moreover, DNR continues to be widely misunderstood and is misconstrued to indicate much more than "do not attempt CPR." A recent study confirmed earlier findings that DNR is often interpreted to imply limitations on treatments, such as intensive care, surgery, dialysis, transfusions, and endoscopy.⁶

In response to the inadequacy of DNR orders and proxy designations, several facilities have undertaken novel systems of advance medical planning, notably the Bedford Veterans Administration Extended Care Facility for residents with advanced dementia.^7,8 and several nursing homes in Ontario, Canada, which have implemented the "Let Me Decide" program.⁹ The core idea behind these strategies is to offer several levels or degrees of care. Typically, the levels range from supportive therapy only, to be provided in the nursing home, at one extreme, to maximal medical care, to be provided in the hospital, at the other extreme. In between are several more levels of care such as a nursing home level that includes whatever medical treatments are available in the facility, and a hospital level that includes many but not the most invasive forms of treatment available in the hospital (surgery, ICU care, and attempted CPR may be excluded).¹⁰

Facilities offering levels of care have been successful in achieving acceptance of the approach by residents and families. In its first year of operation, the Veterans Administration dementia unit achieved selection of a level of care in all 40 eligible residents, though the particular level chosen was often not that recommended by the nursing staff and attending physician at the multidisciplinary team conference where the levels were discussed with families. In the first nursing home to pilot the "Let Me Decide" model, 76 percent of residents completed the new advance directive. When the program's outcomes were subsequently tested in a randomized study, resident and family satisfaction with care was identical in cases and control homes, but homes that implemented the "Let Me Decide" program had lower hospitalization rates and lower resource use.¹¹

Even though these approaches group interventions in accordance with a hierarchy of aggressiveness, they are fundamentally intervention-specific. The problem with intervention-specific planning is that the same intervention may be acceptable to a given patient in certain circumstances, but not in others (e.g., intubation may be acceptable for potentially reversible pneumonia, but not in the setting of recently diagnosed lung cancer). The appropriateness of a given treatment depends on its likelihood of success, the side effects of the intervention, and the alternatives available.¹² Intervention-specific directives are problematic because they give the illusion of precision, but in fact are helpful only if the actual clinical situation corresponds to the scenario the patient had in mind when agreeing to limit treatment. A second problem with intervention-specific directives is that they imply that the purpose of advance planning is to clarify what intervention should be undertaken in specified situations. Ideally, advance planning should do something rather different—it should lay the groundwork for decision-making.¹³

What Kind of Advance Planning Would be Useful in the Nursing Home?

Increasingly, medical ethicists agree that the most useful type of planning in hospital and outpatient settings is goal-based.¹⁴ I believe this is equally true in the nursing home setting. One way to achieve this kind of planning is by suggesting that there are really only three major goals of medical care: maximizing comfort, maintaining function, and prolonging life. Most patients aspire to all three goals, but must make tradeoffs because medical care that focuses on life-prolongation, for example, may be attainable only at the cost of prolonged pain or disability. Thus, patients or their surrogates need to be asked to prioritize their goals. Based on the prioritization of goals, the physician can recommend a general approach to medical care (resembling the levels of care described above), and then translate that approach into a specific set of interventions depending on the particular medical problems that arise.¹⁵ Such a system, based on prioritizing goals, has been developed and piloted at the Hebrew Rehabilitation Center for Aged in Roslindale, Massachusetts. Two studies of the intervention indicate that: (1) patients or their proxies are able to prioritize goals, (2) these prioritizations can be translated into a pathway of care,¹⁶ and (3) knowing the pathway of care can help physicians narrow the range of possible interventions in the event of acute illness.¹⁷

Barriers to Goal-Based Advance Planning

The obstacles to the use of goal-based planning in the nursing home are considerable. First, goal-based planning requires interpretation for its implementation. It does not allow the physician to consult a grid and determine precisely what to do and what not to do in a given clinical situation. By contrast, this sort of precision is popular with physicians and nurses. One study examining the effect of type of advance directive on physician behavior found that physicians were far more likely to adhere to intervention-specific directives (which they did in 83 percent of cases) than to general directives (which they followed in 55 percent of cases).¹⁸

Goal-based planning hinges on conversations between nursing home residents, their family members or formally designated health care proxies, and the physician. The conversations are critical, not just to ascertain the goals, but also to explain the patient's underlying medical condition, which often shapes the goals. Typically, physicians caring for patients in nursing homes have even less contact with family members than do physicians caring for patients living in the community, who may bring family to office visits. Moreover, the majority of residents in long-term care have dementia, impairing their ability to participate in complex conversations about future care, which makes discussions with family even more important than in the community setting.

One format for introducing advance planning is the introductory "care planning meeting," to which families are often invited shortly after the resident has been admitted to the facility. Interestingly, a recent Dutch ethnographic study of decisions about artificial nutrition and hydration in patients with advanced dementia highlighted the importance of early and repeated conversations with families. Shortly after admission and at periodic intervals thereafter, the nursing home staff met with families to discuss the resident's medical condition, likely trajectory, and appropriate management.¹⁹ This strategy has also been recommended by the California Coalition for Compassionate Care. Their model, called ECHO (extreme care, humane options), calls for goals of care to be discussed on admission to the nursing home, during quarterly care planning, and whenever there is a significant change in the resident's condition. ECHO delegates responsibility for eliciting the goals of care to an interdisciplinary team comprising the physician, nurse, and other unspecified staff.²⁰

A variant on this approach would be to use an advance care planning facilitator to participate in these meetings, as was done in the "Let Me Decide" model. Skills in eliciting goals can be acquired by participation in programs such as EPEC, a curriculum developed by The Robert Wood Johnson Foundation.²¹ The steps that such a facilitator should use include: raising the topic, giving information, eliciting goals through use of scenarios, raising specific examples, and asking about general values.²² Of concern, however, is that similarly trained educators were utilized in the SUPPORT study, but these nurse practitioners were unable to serve effectively as intermediaries between patients and physicians.²³

Goal-based advance planning can only be implemented if all members of the relevant health care system understand how to translate goals into practice; that includes the primary care physician, covering physicians, nurses at the nursing home, emergency room physicians at any affiliated acute care hospitals, and hospitalists at those institutions (if the nursing home residents are not cared for by their primary care physicians during their hospitalization). The importance of a systems approach has been demonstrated in Oregon with the Physician Orders for Life-Sustaining Treatment (POLST)²⁴ program and in Wisconsin with the Respecting Choices^® program.²⁵ In Oregon, an intervention-specific advance directive was developed for nursing home residents throughout the state, based on residents choosing comfort or curative care as their overriding goal. Public education of health care professionals was essential to ensure that the nursing home order sheet was universally understood and respected.²⁶ Similarly, the Wisconsin approach was based on the development of patient education materials, the involvement of a broad array of advance directive educators in the community, and a system for transmitting the directives across sites.²⁷

Strategies for Making Advance Planning Effective

From the accumulated experience with advance medical planning in nursing homes, in Canada and the Netherlands as well as in the United States, we can begin to put together a formula for success. First, we need to build on the "levels of care" that have been developed by linking them with the resident's goals of care. The levels or degrees or pathways of care are remarkably similar in the way they group interventions. They also acknowledge that a key decision that must be made is whether the elder should ever receive care in an acute care hospital, or whether all care should be given in the nursing home. They then proceed to offer two approaches to care within the nursing home (strictly palliative or aggressive within the limits of the nursing home's resources) and two strata within the hospital (either with or without maximally invasive care, such as ICU treatment and attempted CPR). But for nursing home residents and their families to choose among these possibilities, they need to understand which level of care corresponds to what prioritization of goals.

Second, we need to create a process for engaging in advance medical planning that is consistent with the culture and organization of nursing homes. Given the relatively low level of physician involvement in most nursing homes, the frequency with which families are absent at the time of a crisis, and the longitudinal nature of care, perhaps the most promising model is the care planning meeting. Such meetings are mandated to occur in skilled nursing facilities, are interdisciplinary, and occur at regular intervals. Incorporation of planning for future illness would involve adding a preventive dimension to the meetings.

Next, to facilitate the planning process, nursing facilities should make recommendations regarding the level or pathway of care, based on the patient's prioritizations of care and underlying health status, and not merely provide open-ended choices. At the Bedford VA, where five levels of care were initially offered to all residents with advanced dementia, the choice more often has become increasingly narrowed to the two possibilities within the nursing home, (strictly palliative or aggressive within the limits of the nursing home's resources) and the caregiving team routinely recommends palliative care.²⁸ Not only do nursing home residents and their families need suggestions about what approach to care makes most sense, but they also need information about the underlying health status and its implications. We have learned that advance planning involves planting seeds and then watering and nurturing those seeds, as when the Dutch nursing home physicians repeatedly described to family members the anticipated progression of advanced dementia.²⁹ Written materials about dementia and about frailty, probably the two leading causes of institutionalization, could supplement direct conversation, as could audiotapes and videotapes.

Finally, nursing homes in different regions should consider joining together in a consortium to develop shared descriptive materials and shared recommendations about levels of care. Once there is a uniform approach to advance medical planning in a variety of facilities, those nursing homes can work to create linkages with the emergency medical system and with local acute hospitals to be sure that the results of the planning process are transmitted to other sites of care.

References

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