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Patient desires: A model for assessment of patient preferences for care of severe or terminal illness

Published online by Cambridge University Press:  13 April 2006

KAREN M. KNOPS ,
MALATHI SRINIVASAN  and
FREDRICK J. MEYERS
KAREN M. KNOPS
Affiliation:
Department of Medicine, University of California, Davis Medical Center, Sacramento, California, USA
MALATHI SRINIVASAN
Affiliation:
Department of Medicine, University of California, Davis Medical Center, Sacramento, California, USA
FREDRICK J. MEYERS
Affiliation:
Department of Medicine, University of California, Davis Medical Center, Sacramento, California, USA
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Abstract

Objective: Patient-centered care is better achieved through a comprehensive understanding of patients' preferences for how they want to live their life and how they want to influence their own death. Though much has been written on identifying goals of care, it is often difficult for clinicians to articulate patient goals to guide care planning. We explored the literature on patient's preferences for their care in chronic or life-limiting illness to develop a model for assessment of patient perspectives. We then illustrated our model with composite patients from our clinics and we provide questions to guide patient discussion.

Methods: We searched MEDLINE from 1986 to 2004 for primary research articles that relate primarily to a patient's preferences for his or her care. We reviewed over 3500 titles, abstracts, and research papers. Hundreds of articles described patients' quality of life, health status, or satisfaction. We excluded consensus guidelines, non-English papers, reviews, and articles focused on medical professional perspectives. Forty-eight studies focused primarily on patient preferences. Using an iterative process, we identified unique issues and broader themes in patients' desires for their care.

Results: Studies focused on patients with cancer, those in hospice or those with terminal disease. Three domains emerged: patient feelings about disease, feelings about suffering, and feelings about the circumstances of death. Attention was given to the differences between patients in terms of the strength and persistence of feelings in each domain.

Significance of results: Based on existing data, there are three fundamental domains of patient perspective that influence preferences for care. These domains can be assessed by the care team to guide the development of a plan of care and to identify areas of conflict. Our review identifies gaps in the end-of-life literature and areas for future work in patient preferences.

Keywords

Patient preferencesPalliative careHastened deathDesire to control diseaseDesire to control sufferingDesire to control deathEnd of lifeSystematic reviewModel development
Type
ORIGINAL ARTICLES
Information
Palliative & Supportive Care , Volume 3 , Issue 4 , December 2005 , pp. 289 - 299
Copyright
© 2005 Cambridge University Press

BACKGROUND

It is more important to know what kind of patient has a disease than what kind of disease a patient has.

Sir William Osler

Although death remains inevitable, scientific advancements offer diverse options for prolonging life. These options carry risks and benefits that may be viewed very differently by individual patients. As illness worsens, patients are confronted with an increasingly complex set of care decisions. During these decisions, patients look to their health care providers to initiate and guide discussions about their care (Wenger et al., 2000).

Physicians, however, vary in their training and ability to provide patient-centered care during the end of life. Discussions about dying present a challenge for practicing physicians, especially when patients have severe illness with unpredictable progression (Somogyi-Zalud et al., 2000; Kayashima & Braun, 2001; Friedman et al., 2002). With the burgeoning population of patients with chronic, severe illness, physicians must help patients identify their values/preferences for end-of-life care and explore areas of patient uncertainty or conflict about these preferences. As recently described by Larson and Tobin (2000), physicians need a reliable framework by which can they can incorporate patient preferences and uncertainties into choices about chronic illness and end-of-life care (Larson & Tobin, 2000).

To construct a patient-centered care model around chronic illness and end-of-life care, it is first necessary to understand global elements of patient perspectives on their care in severe illness.

We conducted a systematic review of the literature to understand the spectrum of patient preferences for care in advanced chronic disease or in terminal illness. Based on this review, we propose a model to guide assessment of goals of care and, when patient goals are unclear, to help us “know what it is we don't know.” We illustrate the use of the model with case examples. Finally, we discuss the implications of translating expressed goals and uncertainties into a patient-centered care plan for terminal illness.

METHODS

Data Sources and Study Selection

We searched MEDLINE from 1986 to 2004 using search headings that included patient preferences, survey, chronic illness (in conjunction with terms such as heart failure, COPD, renal failure, liver failure), end of life, hospice, palliative care, disease-directed therapy, resuscitation, hastened death, and physician-assisted suicide. Search terms were refined by our group, and the bibliographies of relevant papers were reviewed for additional data sources. We selected original articles that focused on the preferences of patients with chronic, severe, or terminal illness. Articles were felt to represent patient preference if they (1) documented data about patients' choice between treatments or plans of care or (2) documented patients' expressed desires for treatments or plans of care. We excluded consensus guidelines, non-English papers, opinion pieces, symposium summaries, reviews, and letters to the editor.

Model Development

Research articles were examined to identify the ways in which patients differ in their attitudes toward medical illness, as reflected by expressed preferences or choices for care. Using an iterative process, we identified three conceptual domains in which patients demonstrated a range of attitudes influencing expressed preferences or care decisions. Based on these key domains, a model for assessment of patient attitudes and preferences was developed and refined. The model was examined for face validity after presentations to groups of clinicians and expert educators at local conferences and a regional professional meeting. The model underwent six rounds of development and modification by our team. We then reviewed the cases of 20 internal medicine patients who had died within the past 2 years. Using the lens of the model, we examined the charts of each patient from the time of diagnosis or presentation to the time of death. Seven example cases are presented in Table 1. Although the cases have been modified to preserve anonymity, the essential elements of patient perspective and decision making have been preserved.

Illustrative examples of patient's desires for care in advanced disease

RESULTS

We reviewed over 3500 titles, abstracts, and papers. Hundreds of articles focused on patient quality of life, health status, or satisfaction with care. Only 48 research articles met our criteria. Through our model development process, three domains emerged that influenced patient perspective on chronic, severe, or terminal illness: patients' attitudes toward their disease processes, patients' attitudes toward their suffering, and attitudes toward the circumstances of their death.

Disease

Our literature review demonstrated differences in patients' attitudes toward their underlying disease processes. Desire for medications and interventions specifically directed at curing or controlling underlying illnesses varied, with 10 studies demonstrating this variability. Level of patient attention to disease was best quantified in studies that asked patients to choose between plans of care; however, this study design has only been employed for cancer populations (Brundage et al., 2001; Donovan et al., 2002). These studies showed that, for some patients, disease-directed therapy remained desirable even when burden of treatment was significant and benefit uncertain. For patients with end-stage renal disease, patients' variable thresholds for forgoing therapy have been shown (Weggel, 1999; Nelson et al., 2002). SUPPORT quantified the number of patients with each diagnosis who did not opt for “comfort care” alone (Claessens et al., 2000; Hamel et al., 2000; Levenson et al., 2000; Lynn et al., 2000; Rosenfeld et al., 2000b; Suarez-Almazor et al., 2002). In a study of patients with severe liver disease, for example, authors acknowledge that patients may have “preferred” aggressive treatment to increase the likelihood of transplant (Rosenfeld et al., 2000b). Motivations behind patient preference for disease-directed care, be they to cure disease, control disease progression, or feel they are “doing everything” or “fighting,” have yet to be fully explored.

Desire for disease-directed therapy shows correlation to the nature of illness (Claessens et al., 2000; Levenson et al., 2000; Rosenfeld et al., 2000b; Suarez-Almazor et al., 2002), patient age (Hamel et al., 2000), overall health status (Donovan et al., 2002; Nelson et al., 2002), perceived extent of disease, personality, family support, and socialization (Brundage et al., 2001; Chen et al., 2003). The perceived burdens and benefits of treatments also affect desires in this area (Brundage et al., 2001; Donovan et al., 2002). The effect of baseline patient characteristics, such as placing a low value on health screening or a history of “medical noncompliance,” remains unknown. The persistence of patient attitudes over time was also not characterized in the reviewed literature.

Suffering

Eighteen studies explored the influence of patients' attitudes toward suffering or therapies directed at suffering. Preferences were assessed through surveys of clinicians caring for terminally ill patients, severely or terminally ill patients themselves, or patients with a prior history of cancer. With relevant studies predominantly focused on patients with terminal illness and very poor functional status, no data exist for preferences for control of suffering in earlier stages of illness. In these studies, patient feelings with respect to suffering were expressed through discussion, requests for symptom control or for “comfort care,” and by enrollment in hospice/palliative care programs. The effect of depression on patient preference for palliation is unknown, though prevalence of depression did increase with symptoms and the desire for symptom-focused care in the SUPPORT trial (Claessens et al., 2000; Suarez-Almazor et al., 2002).

Magnitude of the desire to focus on palliation and to limit nonpalliative hospitalization varied considerably among patients (Claessens et al., 2000; Levenson et al., 2000; Lynn et al., 2000; Rosenfeld et al., 2000b; Brundage et al., 2001; Donovan et al., 2002; Suarez-Almazor et al., 2002). Patients' goals for controlling their suffering vary with the nature of the illness, overall health status, emotional state, personality, family support, and socialization (Brundage et al., 2001). The desire to be free of pain weighs heavily for many patients (Chen et al., 2003), though it may be tempered by fear of addiction or the desire to remain aware (Tiernan et al., 2002), by preconceptions about hospice or palliative care (Weggel, 1999), or by the ongoing desire to control disease (Hamel et al., 2000). The desire to control suffering is not addressed in advanced care plans (Happ et al., 2002), though it is sometimes the fear of future suffering that provokes patients to exert control over the circumstances of their death.

At the junction of the control of suffering and the control of death lies the practice of terminal sedation. Although the practice is becoming more common, its use is dictated more by provider preference than by patient preference (Chater et al., 1998; Peruselli et al., 1999). For both providers and the public, the use of sedation is preferable for physical rather than emotional suffering (Morita et al., 2003). The perspective of severely ill patients on terminal sedation is unknown.

Circumstances of Death

Thirty-three articles focused on the patients' feelings about circumstances of their death. Although illness severity does not predict patient readiness to discuss end-of-life care (Pfeifer et al., 2003), authors of studies on end-of-life preferences almost exclusively target elderly or terminally ill patients. We found no single study examining the full spectrum of a patient's feelings about attempts to control circumstances of death (i.e., studies on limiting resuscitation did not inquire about desires for hastened death or suicidal ideation). The focuses of the studies were inconsistent across the spectrum of potential patient desires; the effect of depression, extensively studied among patients who desired to hasten death, was not well studied in patients who desired to limit or withdraw life-prolonging interventions. Because the relationships between the attitudes are unknown, each aspect of the control of death is presented separately in this section.

Limiting Interventions

Patient attitudes toward limiting interventions are largely discussed in literature on advanced directives, living wills, and code status. A study on patients with living wills found that they viewed cardiopulmonary resuscitation (CPR) less favorably than those without such documents, a difference that disappeared after both groups received education about cardiopulmonary resuscitation (Walker et al., 1995). Education about specific interventions, however, has less influence on patient preference than knowing the clinical circumstances surrounding the decision (Tsevat et al., 1998) or the quality of life that interventions would afford (Singer et al., 1995; Puchalski et al., 2000). Similarly, most ill and elderly patients would not want their expressed preferences blindly followed, preferring that surrogates make future resuscitation decisions based on their values and condition (Happ et al., 2002).

Feelings about resuscitation may be inconsistent over time, notably in patients suffering from depression (Lee & Ganzini, 1992). Perceived quality of life, significant depression, and hopelessness show independent, negative correlation to patient desire for interventions (Lee & Ganzini, 1992; Menon et al., 2000). Treatment of mild to moderate depression did not affect preferences in a later study (Lee & Ganzini, 1994). Initiation of dialysis was less likely if the patient preferred “no CPR” or was male, elderly, or had cancer (Wenger et al., 2000). Specific motivations were not considered in these studies, nor were the presence of depression or anxiety.

Desire to Withdraw Interventions

Once started on life-sustaining treatments, such as tube feeding, aggressive medication regimens, dialysis, and mechanical ventilation, patients may express a desire to withdraw life-prolonging therapy. Studies of hemodialysis patients demonstrate that up to 22% of deaths may be due to treatment cessation (Neu & Kjellstrand, 1986), with deaths following withdrawal of dialysis consistently rate as good or very good by family members (Cohen et al., 2003). Confounders such as dementia or depression have not been examined. Though it has been shown that discussions of withdrawal of dialysis are consistently documented (Wenger et al., 2000), no study has examined the content of these discussions. No studies were available discussing patient perspectives on withdrawal of other life-sustaining therapies.

Location of Death

Many patients with advanced illness express the desire to control location of death, expressing desire to die at home, for instance, even if it would limit available interventions for disease treatment or relief of suffering (Peruselli et al., 1999; Ganzini et al., 2003).

Desire to Hasten Death

The desire to hasten death, as assessed in current literature, can be manifest as thoughts of hastening death, requests to hasten death, and actual attempted or completed suicide. No single study has examined their prevalence and confounders within the same population. The baseline characteristics of patients have only been studied in patients who committed suicide, finding a common history of authoritative positions and valued autonomy. Although the general public feels hastened death should remain an option for those in intractable physical pain (Wilson et al., 2000), physicians and the general public show less comfort if death is hastened for patients in emotional distress.

Though a high desire to hasten death is estimated to be present in 8% to 15% of terminally ill patients (Chochinov et al., 1995; Wilson et al., 2000; Emanuel et al., 2002; Kelly et al., 2003b), with transient thoughts occurring in 40% to 50% (Chochinov et al., 1995; Wilson et al., 2000; Akechi et al., 2001), no study examined personal perceptions of hastened death in patients with chronic or severe illness that is not end-stage.

A body of literature also examines the desire to hasten death as it relates to emotional and physical suffering, literature that has fostered the perception that desire for hastened death may represent a failure of palliative care. Correlates to increased symptom distress (Rosenfeld et al., 1999, 2000a; Chochinov et al., 2002; Emanuel et al., 2002; Kelly et al., 2003a,b), hopelessness (Breitbart et al., 2000; Wilson et al., 2000; Ganzini et al., 2002b), decreased level of function (Chochinov et al., 1999; Breitbart et al., 2000; Suarez-Almazor et al., 2002), and spiritual support (Rosenfeld et al., 2000a; Kelly et al., 2003a) have been identified. The desire for hastened death has an unclear correlation to social support (Breitbart et al., 2000; Nelson et al., 2002). The desire to hasten death has shown a correlation to significant depression (Chochinov et al., 1995, 1999; Rosenfeld et al., 1999; Breitbart et al., 2000; Wilson et al., 2000; Akechi et al., 2001; Emanuel et al., 2002; Nelson et al., 2002; Suarez-Almazor et al., 2002) though nurses caring for patients under Oregon's Death with Dignity Act did not feel depression significantly influenced patients who requested hastened death (Ganzini et al., 2002a). As with the desire to limit interventions, stability of patients' desires to hasten death may vary (Chochinov et al., 1995).

Desire to hasten death also serves as an expression of autonomy, dignity, or control (Seale & Addington-Hall, 1995; Eisemann & Richter, 1999; Filiberti et al., 2001; Chochinov et al., 2002; Suarez-Almazor et al., 2002). Patients who requested physician-assisted suicide under Oregon's Death with Dignity Act were those who valued control and autonomy (Filiberti et al., 2001; Wineberg & Werth, 2003). Oregon nurses and social workers who cared for dying patients felt the primary reason for requests was to “control circumstances of death”—whereas depression, lack of social support, and financial concerns were felt to be unimportant (Walker et al., 1995). Perceptions of being a burden were correlated to the desire to hasten death (Breitbart et al., 2000; Chochinov et al., 2002; Emanuel et al., 2002; Nelson et al., 2002; Kelly et al., 2003a). Patients who were more aware that they were dying were more likely to want euthanasia or want to control circumstances of their death (Seale et al., 1997). In a study that showed patients enrolled in hospice are, in fact, more likely to desire euthanasia, it was suggested that the intense care of hospice increased awareness of dying and sense of dependency (Seale & Addington-Hall, 1995).

Using the Three Lenses: Assessment of Patient Feelings and Patient Preferences

From the literature review described above, we have identified three distinct yet interdependent domains that compose the patient perspective on care (Fig. 1). Using this model, we examine patient examples using each lens: feelings about disease, feelings about suffering, and feelings about the circumstances of one's death (Table 1). Under this model, we may understand what our patients are focused on in dealing with illness and see that the focus of care may vary from patient to patient and with time. When patient feelings are undeveloped in one or more areas, or conflicting goals are identified, the model may elicit areas for education and patient reflection. Sample questions based on the model are presented in Table 2.

Model for assessment of patient perspective. Assessment of patient feelings on disease, suffering and death to elicit areas for intervention and further discussion. Examples of patients in each area are found in Table 1.

Questions to assess a patient's feelings about disease, suffering, and death

DISCUSSION

The perspective of patients with advanced or chronic illness is complex, with desires that may conflict and change with time and situation. Although most care models are derived from an interventional approach to care, this article has presented a model of care that begins with the patient perspective as it is illustrated by current literature. Importantly, the model makes no assumptions about patient preferences—a patient may have a strong desire to control suffering but still want aggressive treatments for disease, for example. This model of assessment does not require patient perspective to fit with medical models of care. We can acknowledge that patients with terminal illness may still want disease-directed therapy, whereas some patients with treatable illness may never focus on disease management (termed medical noncompliance in preterminal illness), often preferring to seek care only when suffering arises. Starting with the patient perspective allows conflicting goals and unrealistic expectations to come to light, easing the interface with the medical establishment and laying the groundwork for further discussion.

The model acknowledges that patient feelings in each domain may evolve over time and change with clinical picture. Discussing patient values thoroughly and repeating the same assessment at later meetings will give physicians and surrogates key information for guiding future care decisions. Even if preferences are not voiced in the physician's office, raising specific questions about patient desires may trigger deeper thought and discussions with the patient and the family. Our model does not advocate a particular action by physicians, but presents an outline for discussing seminal issues in a nonjudgmental manner, a framework for documenting patient perspective throughout all phases of care.

Inquiring about the desire to control death may be troubling for physicians who prefer not to know if a severely ill patient wants to die. Although inquires into illicit drug use, domestic violence, or underage sexual activity are standards of practice in patient-centered care, thoughts of death among severely ill patients remain taboo. Physician avoidance of discussing a terminally ill patient's thoughts of death is tantamount to “see no evil,” rather than “do no harm.” The broad term “feelings about circumstances of death” allows the physician to unearth information ranging from simple preferences for location of care to profoundly emotional fears—all with the goal of improving patient care.

Our model has several important limitations. First, although based on available literature, the research was often based on specific care choices (resuscitation, dialysis) or specific disease processes (ovarian cancer). Second, the model has yet to be tested in clinical practice in a systematic manner to assess discussion or patient outcomes. Third, few data were found on factors influencing patient's desires for care, outside of crude measures of familial or medical support, and a minimal amount of data was found on the extent of how these change over time. Fourth, the model may face some barriers in widespread use because of time constraints in modern practice. This model, like others, recommends an open-ended approach to information gathering—often a challenge for time-pressed physicians. Rather than the open-ended “What thoughts do you have about your death?” physicians may prefer to ask focused questions such as “Do you want to be full code?” hoping that patients will speak in medically meaningful terms. Fifth, different cultures and individuals may interpret a physician's discussion of patient desires for control quite differently. If such a discussion is not broached sensitively, a patient may feel abandoned in discussing the extent of their desire for medical care. They may feel forced to disclose private thoughts and information, or feel like the physician is trying to scare them. Sixth, patients and physicians alike may feel uncomfortable with the desire to control death, equating it with physician-assisted suicide or euthanasia alone. Seventh, the literature for each of the domains of patient perspective desire is incomplete. Thus, we may have missed important ideas that could have influenced our model. Finally, by nature of the fact that we have chosen studies that focus on patient preferences, it is unclear how often patients simply do not have well-defined feelings in one or all of these domains.

This model and supporting literature highlight many areas for future research, because the factors that affect the patient perspective have yet to be fully elucidated. If validated, this model may standardize and lend structure to care discussions, providing a common language for caregivers and ensuring that patients' most important concerns have been heard. Using this basic framework, we can approach the complex, dynamic desires of patients in a systematic fashion, ultimately enhancing the care of our ill and dying patients.

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Figure 0

Illustrative examples of patient's desires for care in advanced disease

Figure 1

Model for assessment of patient perspective. Assessment of patient feelings on disease, suffering and death to elicit areas for intervention and further discussion. Examples of patients in each area are found in Table 1.

Figure 2

Questions to assess a patient's feelings about disease, suffering, and death