The TLC Model of Palliative Care in the Elderly: Preliminary Application in the Assisted Living Setting

Palliative Care as a Terminal Event Rather Than a Longitudinal Process

An unintended consequence of the hospice movement is the tendency to defer palliative care until patients are unequivocally dying. The 6-months-or-less life expectancy requirement for hospice eligibility¹⁵ compounds the problem. Whereas the hospice-based palliative care model is often applicable to younger patients dying of cancer, for whom the disease course is relatively predictable, it is ill suited to older persons. Older patients typically die of chronic, slowly progressive illnesses characterized by multiple acute episodes, often followed by full or partial recovery. Current prognostic models fail to accurately predict the timing of death from such illnesses.^{1, 16, 17} This fundamental mismatch between care paradigm and clinical reality has resulted in an approach to palliative care in the elderly characterized by reacting to acute exacerbation of chronic illness. The result is missed opportunities for palliation at all points along the chronic disease trajectory (Figure 1⇑). Such missed opportunities are evidenced by the palliative care shortfalls mentioned previously,^{4– 11} as well as the phenomenon of late hospice referrals resulting in very short lengths of stay in many programs.¹⁸

Palliative Care Defined Within a False Dichotomy of Symptomatic and Disease-Focused Treatment

Because a disease is “a disorder with a specific cause and recognizable signs and symptoms,”¹⁹ the widely promulgated symptom-disease dichotomy is nonsensical. Furthermore, treating underlying disease processes also often ameliorates symptoms. Most importantly, this false dichotomy diverts attention from the proper focus of end-of-life care: the healing of illness, “the patient’s personal experience of a physical or psychological disturbance.”²⁰ Symptoms often have no clear basis in objective disease, and one cannot generally palliate symptoms related to existential suffering (eg, coming to closure with loved ones) with disease-focused treatment.

We submit that only treatment intent helps to distinguish palliative care from other forms of medical care. Most current medical care seeks to prevent death. By contrast, in palliative care, illness is treated to maintain or slow the rate of decline in quality of life.²¹ The practical importance of the distinction is that treatment intent strongly influences the actual interventions chosen, as well as their extent, dose, and scheduling. For example, chemotherapy regimens for advanced cancer might or might not extend life, but essentially all such regimens cause side effects that can reduce quality of life. By contrast, palliative care might have less chance of extending life but is associated with far less toxicity and may actually lead to improved quality of life.

Decision to Focus Care as Palliative Not Explicitly Negotiated

In clinical practice, neither patients nor family members nor health care providers unilaterally determine treatment intent. Rather, a negotiated agreement among physicians, patients, and family members determines the balance between palliative and curative treatment in the present and future (Figure 1⇑).^{22– 24} In current care processes, such negotiation is generally tacit rather than explicit. In one study,²⁵ family members of dying patients noted problems communicating with health care clinicians as a critical issue. In a second study,²⁶ families noted that having adequate information and professional caregivers facilitate care transitions enhanced their chances of reaching a turning point at which death was viewed as imminent and helped them make informed decisions.

The current lack of explicit negotiation between patients and physicians regarding optimal balancing of palliative and curative treatment contributes to the neglect of existential patient suffering.^{10, 22} Such issues as maintenance of dignity are often as important or more important to patients than symptoms such as pain.²⁷ Lack of explicit negotiation also results in failure to support patients in coping with difficult issues early in the dying process, such as deciding where to live, learning to manage decreased finances,²⁸ and struggling “to remain engaged in the everydayness that gives life meaning.”²⁹ Given the often long trajectory of decline in older patients with chronic illnesses, a palliative care approach that includes both managing remaining life and dealing with approaching death seems especially germane.

Autonomous Patient Treatment Decisions Accorded Undue Prominence

The current approach to palliative care is predicated on the false assumption that autonomy forms the basis of human dignity.³⁰ In reality, palliative care choices are heavily dependent upon the presentation of choice by the physician. As noted previously, the difference between the ideal shared decision-making approach and the current one is that physician biases and preferences could be made explicit in the former, whereas in the latter they are generally hidden or implicit. Many treatment choices offered to patients in the name of honoring autonomy are in fact nonchoices.²⁸ For example, dying patients are routinely asked whether they want invasive therapies to keep them alive even when there is no chance of survival, no matter what course is taken. The more salient or controlling choice noted by family caregivers of dying patients in one study was about “the perception of the person’s stage in the illness trajectory” and resulting goals for quality of remaining life—factors that help to determine treatment intent—and not primarily about which specific treatments were to be received.²⁸

Palliative Care as a Parallel System Rather Than an Integrated Process

Palliative care presently occurs outside the usual care processes, often delivered by specialists and other personnel within the hospice framework, with little involvement from primary care physicians. Shoehorning prolonged palliative care discussions into already overloaded periodic office visits is unlikely to remedy this situation. Rather, for palliative care delivery to become an integral part of daily clinical practice, and to facilitate deeper, less hurried, longitudinal palliative care dialogues, creative new ways of maintaining continuous healing relationships³¹ among patients, families, and primary providers must be sought. Such relationships allow patients to receive care whenever and wherever they need it in a variety of forms, including face-to-face office visits, Internet and electronic mail communication, telephone calls, and other means.

T – Timely and Team Oriented

Palliative care must be timely, not delayed in a misguided attempt to wait for a clearly terminal event, to avoid prolonged, unnecessary suffering. Furthermore, to achieve continuous healing relationships, palliative care must be team-oriented. Given the problem of competing demands during physician office visits,³⁵ health care team members, such as nurses and trained lay persons, must play a major role in supporting family self-care efforts and implementing palliative care.

L – Longitudinal

The ideal trajectory of palliative care for the elderly is longitudinal, with an evolving balance of palliative and curative measures (Figure 1⇑).³ Such an approach could overcome the current tendency to use a reactive approach to end-of-life care that is focused on acute illness exacerbation. Emerging concepts from the literature regarding interventions to optimize longitudinal chronic illness care^{31, 36} can help to inform such a longitudinal approach.

C – Collaborative and Comprehensive

Palliative care must be a collaborative enterprise among physicians, patients, and their loved ones. Information should flow freely in all directions to facilitate shared decision making. The rich and growing body of literature concerning shared decision-making programs^{37, 38} to help patients make health care decisions serves as a useful reference point. The content of palliative care efforts must also be comprehensive, informed by empirically supported domains of palliative care.^{3, 39– 42} Maintaining social roles and relieving existential suffering should be a particularly strong focus of palliative care for older patients to help maintain dignity throughout the dying process.^{23, 43, 44} The rich and comprehensive geriatric assessment⁴⁵ research literature can help to inform the content of palliative care for older patients, even though the target population for the TLC approach is located close to (but not necessarily at) the hospice bar in Figure 1⇑, whereas the target population for traditional comprehensive geriatric assessment is closer to the extreme left.

Assisted Living: An Ideal Setting for TLC Model Application

Assisted living facilities are congregate residential settings that provide or coordinate personal services, supervision, activities, and health-related services.⁴⁶ There are about 1.5 million assisted living beds in the United States, and demand is expected to grow considerably during the next 20 years as the population ages.⁴⁷ Three issues make the assisted living facility an ideal setting in which to evaluate the TLC model of palliative care for the elderly.

First, the elderly resident population is increasingly functionally impaired and frail.^{48, 49} The typical resident is an 80-year-old woman who needs assistance with two activities of daily living.⁴⁶ The estimated life expectancy for persons of this age and degree of frailty is generally less than 2 years.⁵⁰ Thus, most elderly residents in assisted living facilities are nearing but not necessarily at the end of life. Second, because most residents suffer from multiple chronic illnesses for which an accurate prognosis is impossible,^{18, 51} the current approach of delaying palliative care until death is clearly imminent is likely resulting in unnecessary, prolonged resident suffering. Third, recent reviews have disclosed no reports concerning palliative care needs or quality in this population.^{52, 53}

The Palliative Care in Assisted Living (PCAL) Study

To begin to fill this important knowledge gap and compare the effectiveness of 2 interventions for improving palliative care in older persons based on the TLC model, we are conducting the Palliative Care in Assisted Living (PCAL) study. From November 2000 through June 2004, English-speaking residents of 2 assisted living facilities in the Sacramento, Calif, area, operated by a single not-for-profit corporation, are being invited to volunteer for the PCAL study. Facility 1 houses 100 residents and facility 2 houses 35 residents. Care processes at the facilities are essentially identical. The average resident age is 85 years, two thirds are female, and nearly all are white and English speaking. Most residents pay facility fees out of pocket. Residents who cannot understand the consent form because of cognitive impairment or who are unable to consent because of serious acute illness are excluded.

Preliminary Support for the TLC Model

Our preliminary findings and those of others^{4, 6, 52} illustrate glaring deficits in the quality of palliative care for older persons. No subject in our study was terminally ill, and none was a candidate for hospice, yet all were approaching the end of life and had multiple unmet palliative care needs. These findings show a pressing need for a major paradigm shift in the way palliative care of elders is conceptualized and delivered.¹³ They also provide initial support for the TLC model as a promising framework for better meeting the palliative care needs of older patients. Until intervention evaluations like the PCAL study are completed, however, the impact of using the TLC framework on patient outcomes remains unclear. If the study results are favorable, future researchers might build upon the interventions we have outlined by including even greater emphasis on such important issues as bolstering patients’ sense of dignity^{43, 44} and self-efficacy^{67, 68} and supporting family caregivers throughout the trajectory of chronic illness.²⁶