Nursing Manuscript
Viewing Hospice Decision Making as a Process
American Journal of Hospice & Palliative Medicine® 1-8 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909115569592 ajhpm.sagepub.com
Rafael D. Romo, PhD, RN, PHN1,2, Margaret I. Wallhagen, PhD, GNP-BC, AGSF, FGSA, FAAN1, and Alexander K. Smith, MD, MPH, MS2,3
Abstract Research focused on understanding that the nature of hospice decision making has both described the characteristics of those who do and do not utilize hospice and identified many factors related to choosing hospice. However, this literature has not explored the underlying decision-making processes, limiting our understanding. We examine the extant literature and propose a framework that views hospice decisions as an evolving process, identify key factors that bear directly on this process, and discuss the contextual environment, including the idea of a decision maker triad. We end with a discussion of how this framework can be used to support clinical practice and future research. Our goal is to provide a framework from which to understand the end-of-life needs of all patients, no matter where they receive care. Keywords hospice, end-of-life care, prognosis, communication, decision making, older adults
Although hospice aims to provide end-of-life care consistent with older adults’ stated priorities,1 most decedents do not receive its services, and a majority of hospice patients die within weeks of enrolling.2 Consequently, hospice may not be used as widely as would be anticipated. Significant research has been undertaken to understand the characteristics of those who do and do not use hospice; however, less is known about how patients come to make the actual decisions, especially among those who decline to use hospice.3-5 The aim of this article is to explore the nature of hospice decision making among older adults as a process and identify factors that directly influence it. The contextual environment will be explored, including the view of a ‘‘decision maker’’ triad comprised of the patient, provider, and informal social partners. We will end with a discussion of the implications for clinical practice and future research.
considering patients’ priorities for care. In the best-case scenario, as patients’ conditions progress and health declines, providers begin to explore clinical circumstances with their patients and reevaluate the goals of treatment. Options are considered and reexamined. Choices get made and reassessed. This decision-making process is particularly important for older adults because they often die after a long period of decline during which hospice is likely to become appropriate.7 However, pinpointing the timing of this transition can be challenging. Compared to younger adults, older ones are more likely to die from illnesses that are characterized by unpredictable trajectories of decline, such as cardiovascular disease, heart failure, renal failure, diabetes, and chronic obstructive pulmonary disease.8 These trajectories can lead to temporal changes in decision making and explain the observations of many researchers that older adults often change preferences for life-sustaining treatments as their health declines9,10 and want
Hospice Decisions as a Process Although choosing to enroll in hospice can be seen as an isolated, stand-alone decision, it is better seen as a process arising from the interaction of beliefs, attitudes, and behaviors that evolves over time. Hospice admission criteria lend support to the former view as there is generally a unique point in time when health-care providers recommend hospice and patients then ‘‘elect’’ the services.6 This is a significant event and marks a transition from a curative to palliative focus related to care.2 However, the discernment around enrolling in hospice begins earlier and involves
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Department of Physiological Nursing, School of Nursing, University of California, San Francisco, CA, USA 2 San Francisco Veterans’ Affair Medical Center, Geriatrics, Palliative & Extended Care, San Francisco, CA, USA 3 Division of Geriatrics, Department of Medicine, University of California, San Francisco, CA, USA Corresponding Author: Rafael D. Romo, PhD, RN, PHN, San Francisco VA Medical Center, 4150 Clement Street (181G), San Francisco, CA 94121, USA. Email: [email protected]
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Figure 1. Decision-making process at the end-of-life.
less involvement in decision making as they become more ill.11 Further, the process of accepting and adjusting to the reality of the end of life unfolds gradually and involves recognizing both the decline in one’s health and ineffectiveness of current treatments.3,12 The same process is true for coming to see the value of hospice. Thus, the decision-making process that has occurred over a disease trajectory influences whether or not a referral to hospice is made and how the referral is perceived. We represent this process in Figure 1 by synthesizing the current literature into a conceptual framework. Decision making occurs within a contextual environment that consists of policy and environmental issues, psychosocial factors, and sociocultural and religious considerations. Further, the decision maker includes the patient as well as informal and professional social partners such as family, friends, and health-care providers. These players are uniquely influenced by the contextual environment and bring their own perspectives to communication, understanding of prognosis, experience with illness/health, and preferred decision-making role. The result is a decision behavior that evolves and changes over time. Before examining the context, we will discuss the factors that most directly influence the decision-making process.
Factors Influencing Hospice Decision-Making Behavior Understanding Prognosis A hospice decision is influenced by both providers’ and older adults’ understanding of prognosis. At a minimum, referring physicians must determine that patients have less than 6 months to live.6 Furthermore, because hospice patients must forgo curative treatments, such as chemotherapy for cancer,6
they must at least tacitly acknowledge that they are approaching death, even if they are not aware of the 6-month criteria. Consequently, providers are more likely to discuss hospice with patients’ they believe have a limited prognosis, and patients who understand this prognosis are more likely to forgo life-sustaining treatments that would be contrary to hospice use.13-15 Among older adults specifically, researchers have found that those who perceive a limited prognosis are more likely to prefer low-burden treatments to invasive, highburden ones.16-18 Despite poor clinical prognoses, however, patients frequently overestimate how long they have to live.14,15,19 This misunderstanding may be related to the limited health literacy of most older adults.20 Prognosis is couched in probabilities and statistics, and patients often lack the numeracy—or ability to comprehend and use numerical information—to fully appreciate what prognosis means.21 This incongruence between clinical and subjective prognosis complicates decision making and can lead to choices based on unlikely clinical outcomes, including a desire for treatments inconsistent with hospice (ie, prolonged hospitalizations, ICU stays, etc).5,14 But even when patients know their prognosis, many still will not enroll—as many as 30% of eligible patients decline after the option is presented.13,15 Consequently, prognosis is one but not the only factor influencing decisions to utilize hospice.
Illness/Health Experience Individuals’ decision making is also influenced by their experience with their illness. Compared to nonhospice patients, those in hospice have more comorbidity and functional decline, leading to less desire for wanting life-sustaining interventions.22 Other researchers note that these factors alone increased the likelihood that patients and providers discuss
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hospice.13,14 Huskamp et al15 found that participants who experienced poorer health than others were more likely to have discussed hospice with providers. Gauthier23 noted that participants identified ‘‘pivotal events’’ that led them to reevaluate their circumstances and begin the transition to accepting hospice. Among African Americans, Campbell et al24 found that participants used changes in their health as a trigger for decision making but only if the changes resulted in physical symptoms. When deciding to discuss options with patients near the end of life, providers use their own perception of patients’ experiences and changes in condition. Using a hypothetical patient meeting national guidelines for prognositic disclosure, Keating et al25 found that most physicians would discuss prognosis but would only discuss hospice and end-of-life care options if patients were symptomatic and had no nonpalliative options available. Diagnosis also matters. Patients with heart failure, obstructive pulmonary disease, and renal failure have lived with their conditions for years and do not necessarily see the disease as progressive or life limiting.26,27 Consequently, patients with noncancer diagnoses are more likely to want interventions that would preclude hospice and to focus on factors unrelated to their underlying condition.28,29 They also often view hospice as a service only for patients with cancer or for when they no longer want to be hospitalized, while patients with cancer view hospice as appropriate but only when close to death.18 Thus, the decision to accept hospice is based on understanding one’s disease and prognosis, as well as seeing a contextual need for the services. Patients, families, and providers often do not see hospice services as necessary or valuable until patients are very close to death and actively dying.5,18 This finding is reflected in the high level of satisfaction with the timing of hospice referrals, even among those who enroll within days or weeks of death.30,31 These factors likely contribute to the prevalence of short stays in hospice (less than 3 weeks)—patients must perceive themselves as ‘‘sick and dying’’ before they seek to change the focus of their care. However, significant interplay between prognosis and illness/health experience appears to exist: Patients’ estimate of their prognosis may become more realistic as their health declines, while simultaneously they may discuss prognosis with their providers that change their perception of their health.
Decisional Control In addition to prognosis and illness/health experience, personal autonomy is an important factor in decision making. In countries like the United States, strong emphasis is placed on patients’ making independent, informed decisions about their care; yet, the actual and preferred roles older adults wish to take vary greatly. Not all patients make the decision to enroll in hospice,32 with a sizable number choosing to delegate hospice decisions to others.32,33 Consequently, many older adults may prefer a more passive approach to autonomy.
Patients’ preferences range from wanting to be fully independent to completely delegating decisions to others. In between lies some degree of collaborative decision making where patients want to share decisional responsibility.11,29,34 The extent to which patients wish to maintain control over decisions varies between studies, ranging from 20% to 40% for those who want to maintain or delegate decisional control. The differences may be related to sample differences and survey construction. Butow et al11 recruited patients with cancer and asked who ‘‘should’’ make decisions. Heyland et al34 recruited patients with a variety of diagnoses but asked about ‘‘preferred’’ roles. And Laakkonen et al29 recruited cardiovascular patients, asked who ‘‘should’’ make decisions but also added a ‘‘close relative’’ into the mix of decision makers. Although subtle, the differences are significant because ‘‘should’’ has paternalistic connotations while ‘‘prefer’’ implies a degree of control. In contrast to other researchers, Moorman35 found that 80% of her participants wanted to maintain autonomy in their endof-life decision making. However, she further notes that the expression of autonomy does not necessarily equate to a desire for independent decision making. This observation is supported by a study among women with breast cancer that found yielding decisions to a trusted person enabled some participants to maintain a sense of control and autonomy.36 Decisional control is also related to illness experience and prognostic awareness. Studies have found that physical decline is significantly related to wanting less involvement in decision making.11,29,34 Although the relationship between prognostic awareness and decision-making role has not been a focus of most studies, taken as a whole, the body of literature implies that such a connection exists.
Open Communication Good, open communication is a critical aspect of end-of-life decision making. To fully appreciate the benefits of hospice, patients and their families must understand prognosis and the severity of the patient’s illness. This understanding can come through discussions with providers if they are able to present the actual clinical circumstances in ways that are meaningful to patients and families, thus potentially mitigating the problem of health literacy.14,15 However, these discussions do not appear to happen often,37 and when they do, they are frequently late in a disease process, leaving insufficient time for patients to adapt to their changing circumstances or adjust their health-care priorities.12 Physicians and nurses often point out that patients and families neither wish to discuss nor acknowledge their prognosis and its implications, thereby creating barriers to hospice.38,39 However, researchers have found that most patients want to know their prognosis but also want to control how and when discussions happen.37,40-42 Rather than having a long, detailed discussion during a single meeting, patients want frequent, short conversations regarding prognosis.41 Older adults also cite benefits to knowing prognosis, such as making preparations, getting
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4 the most out of life, and being informed.40 These benefits outweighed concerns for any distress related to knowing prognosis. Still, a sizable minority did not want to know their prognosis and strongly opposed the idea of being told.37,40-42 While weighing clinical circumstances, providers have the challenge of navigating the ambivalence patients and families may experience.43 Providers may try to have conversations regarding prognosis and to reevaluate treatment goals but find patients unreceptive. As a result, patients and families may believe a discussion of prognosis has not been held. Through discussing prognosis and clinical circumstances, providers help patients and families understand their prognosis and illness progression. Similarly, providers come to understand patients’ values and priorities. Consequently, the relationship between prognosis, illness/health experience, and decisional control unfolds within this communication. Each influences the other and changes the perceptions patients have regarding available options and whether patients seek an active or passive role in decision making.
The Decision-Making Context Decision-Making Triad Research on patient decision making has focused primarily on the patient, the provider, or the relationship between the two. Providers are responsible for giving patients the information needed to make informed decisions, and patients are considered the ultimate decision maker.44 A key part of this relationship is the trust patients have in their providers.1,34,36 Trust enables the communication mentioned previously and allows many older adults to feel comfortable delegating decisions. But there is a third actor that has not been studied as much: patients’ families and friends. Family members and friends often assume an important the role as surrogates; however, their role as supportive players is evident. Laakkonen et al29 noted that more than 50% of all participants wanted a family member involved in end-of-life decisions, although they did not explore the degree of this involvement. Bullock45 and Campbell et al24 found that participants spoke of wanting family involved in end-of-life/hospice discussions, even expressing anger when providers did not wait for family to be present. Among Latinos and Asian Americans, end-of-life decisions are often seen as family decisions, not individual ones, and patients are sometimes left out of the process entirely. This can occur even when patients still have the capacity to make decisions.46-48 The importance of social relationships is also seen in other ways. The lack of social support may manifest a need for hospice, as those who are unmarried or live alone are more likely to use hospice.15,22 Fear of being a burden on family increases the likelihood that older adults will discuss end-of-life issues with their families, and positive experiences with hospice or experiencing the death of a loved one result in more favorable views of hospice.47,48 On the other hand, families may decrease the likelihood that hospice will be used. Vig el al5 performed a
small study of patients who declined hospice and found that some family members were opposed to hospice because they feared losing control over the care of their loved ones. Because family and friends play an important role in decision making, they cannot be excluded from the equation. By supporting and encouraging—or actively discouraging—hospice use, informal social partners can be either an enabling or an inhibiting force. Limited research has looked at the role of these players outside of surrogacy; consequently, the degree to which they influence older adults’ decisions is not yet clear.
Contextual Environment As exemplified in Figure 1, the decision-making triad exists within a contextual environment that includes multiple spheres of influence. Further, this environment influences each member of the triad differently. Although we are unable to fully discuss this concept in a short review, recent discussions based on science and ethics have thoughtfully examined the varied nature of this environment.49-51 Still, highlighting certain aspects is important. The recent debate around ‘‘death panels’’ demonstrated the strong influence of politics and policy on end-of-life decision making and resulted in the removal of the provision to reimburse providers for conversations with older patients regarding goals of care that was initially a component of the Affordable Care Act. Specifically related to hospice, analysts have long cited Medicare’s regulations as an impediment to hospice use. The need to forgo standard, curative care in favor of the purely palliative focus of hospice has been dubbed ‘‘the terrible choice’’52 and is considered a major reason for patients to decline a referral.53 Physicians often cite prognostic uncertainty as a primary reason for their own ambivalence toward making a referral in the first place.38,54 Although Medicare sets general standards for admission, specific criteria vary from one hospice provider to another, with some accepting patients with intravenous fluids, antibiotics, tube feedings, and so on while others do not.55,56 Consequently, organizational factors add an additional layer of complexity to the decision. In addition to the policy and structural issues around hospice, sociocultural aspects and religion are important contextual components that have been extensively studied. Compared to whites, studies have found that, on average, other racial and ethnic groups have stronger preferences for lifesustaining treatments and dying in a hospital, and less favorable views of hospice, all of which would decrease the likelihood of hospice use.47,48,57-60 Likewise, significant differences have been noted between groups based on religion and spirituality, with a greater degree of religiousness/spirituality associated with a greater desire for life-sustaining treatments and hospitalization at the end of life.48,59,61,62 These factors also influence patients’ desire for decisional control, with race/ethnicity and religious beliefs being associated with preferences for autonomy and involvement in decision making.46,47,59,63,64
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Generalizing the data on sociocultural influences is challenging. Focusing on group differences runs the risk of overlooking intragroup heterogeneity that cannot be discounted. Although studies have found statistically significant differences in preferences for hospice between different racial/ethnic groups, the differences are often small and all groups generally have a favorable view albeit not universally so.57,60 Consequently, significant intragroup variability remains unexplained. The relationship between the decision-making context, decision-making triad, and social/cultural factors is not easily teased out. Balboni et al65 provide an example in a recent study. They found that participants with a higher degree of spiritual support from religious communities were more likely to want life-sustaining treatments and less likely to enroll in hospice. However, when participants felt spiritual support also came from their providers, this was no longer the case. The researchers could not explain the finding, but it is reasonable to assume the interaction between providers and patients gave rise to the perception of this support.
Discussion The complex, multifactorial nature of end-of-life decision making has many implications for both clinical practice and research. Health-care providers must be mindful of the variability found among patients when it comes to decision making and treatment preferences. Although biomedical ethics includes 4 equal principles of autonomy, nonmaleficence, beneficence, and justice,44 respect for autonomy gets more emphasis, especially when one of the outcomes is death. Respecting patients’ autonomy can be difficult if patients rely heavily on others for guidance and delegate decision making, as may be true for older adults regarding emotionally laden decisions.66 In these situations, patients are placing a great deal of trust in their providers who may feel uncomfortable taking a proactive role. Because providers experience discomfort and ambivalence, they may prefer to mention every possible option, even if the options are unlikely to improve clinical outcomes. However, offering patients choices simply because they are available may do a disservice, particularly if outcomes are framed only as living-or-dying and not in the context of patients’ priorities and goals. In Table 1, we provide suggested strategies that providers can use to optimize when and how to have hospice discussions with their patients. Discussing end-of-life care with patients can be difficult but is a core aspect of caring for older adults. Some clinicians suggest routinely offering to discuss prognosis with patients who have a prognosis of less than 10 years or have reached the age of 85.67 By doing so, providers can begin to explore preferences when patients are in relatively good health, rather than during a crisis. Finding time to have these conversations can be challenging. The time available for a standard clinical visit is limited by pressures to be more efficient, the need see more patients, and increased regulatory reporting. However, discussions regarding end-of-life care do not need to be all encompassing. Periodically revisiting the topic during routine office visits allows for shorter conversations and helps to build trust
Table 1. Strategies to Optimize Hospice and End-of-Life Discussions. Focus on patients’ values and outcomes rather than treatment alternatives. Communicate about values, outcomes, and prognosis early in the illness trajectory. Ask about patients’ religious and spiritual beliefs and explore how these beliefs influence patients’ decision making. Use earlier communication to improve patients’ understanding of their conditions and help patients to adjust to changes over time. Continually assess patients’ circumstances and use significant changes in clinical circumstances as ‘‘triggering’’ events to reevaluate goals of care. Encourage patients to include family or friends in the discussions of priorities so that these potential surrogates are better informed and feel more confident making substitute decisions. Consider prognosis when making recommendations and use online calculators to aid in estimating prognosis (eg, ePrognosis— http://eprognosis.ucsf.edu). Collaborate with palliative care programs and other professionals to better understand patients’ priorities and decision making.
and reenforce the relationship between providers, patients, and families. In addition, as noted earlier, such an approach is preferred by many patients.41 Shared decision making is widely regarded as the model for patient–provider communication and calls for patients and providers to work collaboratively and make decisions jointly.68 However, this approach requires strong communication skills—not to mention time—that providers often feel they don’t have.69 Providers can also turn to other professionals who have been shown to be effective collaborators, such as nurses, social workers, and chaplains.70-72 Although limited in number, palliative care programs are an additional resource. These programs are designed to facilitate conversations around goals of care and have been shown to improve satisfaction with care, reduce health-care utilization, improve symptom management, and increase quality of life.73,74 To date, limited research has been undertaken to explore hospice decision making specifically among older adults with a limited prognosis. Existing decision-making models focus on decision outcomes and identifying ‘‘better’’ ways of making decisions. But before attempting to alter patients’ behavior, providers must first understand the origins of existing behavior. To this end, future research needs to focus on the underlying processes of older adults’ decision making from within the full context of their situations. To understand more fully the combined role of patients, families and friends, and providers, research is needed that jointly explores the perspectives of all the actors involved. Most studies have examined decisions from the perspective of patients and providers alone or within the patient–provider dyad. However, the influence of informal social partners, like family and friends, needs to be understood beyond their role as surrogates. To varying degrees, hospice decisions arise from the interaction of all 3 actors, and each of these actors bring his or her unique perspective to the process of decision making. Research is also needed that explores what happens when
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6 patients are unwilling to exercise autonomy so that the implications on the type and quality of care received are better understood.
Summary We describe the complex and intricate nature of hospice decision making. By examining the contextual process used, we are able to identify key aspects directly influencing the behavior that results in different decisions. Exploring this process will not only enable us to further our understanding of the barriers to hospice that continue to persist but also help us to understand the unique needs of those who never utilize hospice. Our goal is not to identify ways to encourage and increase the use of hospice per se but to understand the needs of older adults at the end of life. Whether in hospice or not, all older adults should receive high-quality palliative care. Acknowledgment The authors wish to thank Tom Fairbanks for the graphic design.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclose receipt of the following financial support for the research, authorship and/or publication of this article: John A. Hartford Foundation/Building Academic Geriatric Nursing Capacity scholarship.
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24. Campbell CL, Williams IC, Orr T. Factors that impact end-of-life decision making in African Americans with advanced cancer. J Hosp Palliat Nurs. 2010;12(4):214-224. 25. Keating NL, Landrum MB, Rogers SO Jr, et al. Physician factors associated with discussions about end-of-life care. Cancer. 2010; 116(4):998-1006. 26. Pinnock H, Kendall M, Murray SA, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ. 2011;342:d142. doi:10. 1136/bmj.d142. 27. Curtis JR, Engelberg RA, Nielsen EL, Au DH, Patrick DL. Patient–physician communication about end-of-life care for patients with severe COPD. Eur Respir J. 2004;24(2):200-205. 28. Cosgriff JA, Pisani M, Bradley EH, O’Leary JR, Fried TR. The association between treatment preferences and trajectories of care at the end-of-life. J Gen Intern Med. 2007;22(1):1566-1571. 29. Laakkonen ML, Pitkala KH, Strandberg TE, Berglind S, Tilvis RS. Older people’s reasoning for resuscitation preferences and their role in the decision-making process. Resuscitation. 2005; 65(2):165-171. 30. Kapo J, Harrold J, Carroll JT, Rickerson E, Casarett D. Are we referring patients to hospice too late? Patients’ and families’ opinions. J Palliat Med. 2005;8(3):521-527. 31. Teno JM, Shu JE, Casarett D, Spence C, Rhodes R, Connor S. Timing of referral to hospice and quality of care: length of stay and bereaved family members’ perceptions of the timing of hospice referral. J Pain Symptom Manage. 2007;34(2):120-125. 32. Casarett D, Crowley R, Stevenson C, Xie S, Teno J. Making difficult decisions about hospice enrollment: what do patients and families want to know? J Am Geriatr Soc. 2005;53(2):249-254. 33. Hirschman KB, Corcoran AM, Straton JB, Kapo JM. Advance care planning and hospice enrollment: who really makes the decision to enroll? J Palliat Med. 2010;13(5):519-523. 34. Heyland DK, Tranmer J, O’Callaghan CJ, Gafni A. The seriously ill hospitalized patient: preferred role in end-of-life decision making? J Crit Care. 2003;18(1):3-10. 35. Moorman SM. Older adults’ preferences for independent or delegated end-of-life medical decision making. J Aging Health. 2011; 23(1):135-157. 36. Swainston K, Campbell C, van Wersch A, Durning P. Treatment decision making in breast cancer: a longitudinal exploration of women’s experiences. Br J Health Psychol. 2012;17(1):155-170. 37. Fried TR, Bradley EH, O’Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc. 2003;51(10):1398-1403. 38. Brickner L, Scannell K, Marquet S, Ackerson L. Barriers to hospice care and referrals: survey of physicians’ knowledge, attitudes, and perceptions in a health maintenance organization. J Palliat Med. 2004;7(3):411-418. 39. Schulman-Green D, McCorkle R, Cherlin E, Johnson-Hurzeler R, Bradley EH. Nurses’ communication of prognosis and implications for hospice referral: a study of nurses caring for terminally ill hospitalized patients. Am J Crit Care. 2005;14(1):64-70. 40. Ahalt C, Walter LC, Yourman L, Eng C, Perez-Stable EJ, Smith AK. ‘‘Knowing is better’’: preferences of diverse older adults for discussing prognosis. J Gen Intern Med. 2011;27(5):568-575.
41. Hagerty RG, Butow PN, Ellis PA, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol. 2004;22(9):1721-1730. 42. McDonald DD, Deloge JA, Joslin N, et al. Communicating endof-life preferences. West J Nurs Res. 2003;25(6):652-666. 43. Thai JN, Walter LC, Eng C, Smith AK. Every patient is an individual: clinicians balance individual factors when discussing prognosis with diverse frail elderly adults. J Am Geriatr Soc. 2013;61(2):264-269. 44. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 6th ed. New York, NY: Oxford University Press; 2009. 45. Bullock K. The influence of culture on end-of-life decision making. J Social Work End Life Palliat Care. 2011;7(1):83-98. 46. Colclough YY, Young HM. Decision making at end of life among Japanese American families. J Fam Nurs. 2007;13(2):201-225. 47. Carr D. Racial differences in end-of-life planning: why don’t Blacks and Latinos prepare for the inevitable? Omega (Westport). 2011;63(1):1-20. 48. Blackhall LJ, Frank G, Murphy ST, Michel V, Palmer JM, Azen SP. Ethnicity and attitudes towards life sustaining technology. Soc Sci Med. 1999;48(12):1779-1789. 49. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life [prepublication release]. Washington, DC: National Academies Press. Web site. 8http://www.iom.edu/Reports/2014/Dying-InAmerica-Improving-Quality-and-Honoring-Individual-Preferen ces-Near-the-End-of-Life.aspx.2014. Published September 17, 2014. Accessed December 29, 2014. 50. Gawande A. Being Mortal: Medicine and what Matters in the End. New York, NY: Holt, Henry & Company; 2014. 51. Emanuel EJ.Why I hope to die at 75. An argument that society and families—and you—will be better off if natures takes its course swiftly and promptly. The Atlantic. Web site. http://www.theatlan tic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/. Published October 2014. Accessed December 29, 2014. 52. Casarett D, Fishman JM, Lu HL, et al. The terrible choice: reevaluating hospice eligibility criteria for cancer. J Clin Oncol. 2009;27(6):953-959. 53. Reb AM. Palliative and end-of-life care: policy analysis. Oncol Nurs Forum. 2003;30(1):35-50. 54. Ogle KS, Mavis B, Wyatt GK. Physicians and hospice care: attitudes, knowledge, and referrals. J Palliat Med. 2002;5(1):85-92. 55. Aldridge Carlson MD, Barry CL, Cherlin EJ, McCorkle R, Bradley EH. Hospices’ enrollment policies may contribute to underuse of hospice care in the United States. Health Aff. 2012;31(12): 2690-2698. 56. Lorenz KA, Asch SM, Rosenfeld KE, Liu H, Ettner SL. Hospice admission practices: where does hospice fit in the continuum of care? J Am Geriatr Soc. 2004;52(5):725-730. 57. Ludke RL, Smucker DR. Racial differences in the willingness to use hospice services. J Palliat Med. 2007;10(6):1329-1337. 58. Barnato AE, Anthony DL, Skinner J, Gallagher PM, Fisher ES. Racial and ethnic differences in preferences for end-of-life treatment. J Gen Intern Med. 2009;24(6):695-701. 59. True G, Phipps EJ, Braitman LE, Harralson T, Harris D, Tester W. Treatment preferences and advance care planning at end of life:
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the role of ethnicity and spiritual coping in cancer patients. Ann Behav Med. 2005;30(2):174-179. Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc. 2008;56(10):1953-1958. Balboni TA, Vanderwerker LC, Block SD, et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol. 2007;25(5):555-560. Van Ness PH, Towle VR, O’Leary JR, Fried TR. Religion, risk, and medical decision making at the end of life. J Aging Health. 2008;20(5):545-559. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA. 1995;274(10): 820-825. Garrido MM, Idler EL, Leventhal H, Carr D. Pathways from religion to advance care planning: beliefs about control over length of life and end-of-life values. Gerontologist. 2013;53(5):801-816. Balboni TA, Balboni M, Enzinger AC, et al. Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA Intern Med. 2013;173(12):1109-1117. Lockenhoff CE, Carstensen LL. Socioemotional selectivity theory, aging, and health: the increasingly delicate balance between regulating emotions and making tough choices. J Pers. 2004; 72(6):1395-1424.
67. Smith AK, Williams BA, Lo B. Discussing overall prognosis with the very elderly. N Engl J Med. 2011;365(23): 2149-2151. 68. Charles C, Gafni A, Whelan T. Decision-making in the physician–patient encounter: revisiting the shared treatment decisionmaking model. Soc Sci Med. 1999;49(5):651-661. 69. Legare F, Ratte S, Gravel K, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Educ Couns. 2008;73(3):526-535. 70. Black K. Advance directive communications practices: social worker’s contributions to the interdisciplinary health care team. Soc Work Health Care. 2005;40(3):39-55. 71. Breier-Mackie S. Patient autonomy and medical paternity: can nurses help doctors to listen to patients? Nurs Ethics. 2001;8(6): 510-521. 72. Reeves S, Rice K, Conn LG, Miller KL, Kenaszchuk C, Zwarenstein M. Interprofessional interaction, negotiation and nonnegotiation on general internal medicine wards. J Interprof Care. 2009;23(6):633-645. 73. Rabow M, Kvale E, Barbour L, et al. Moving upstream: a review of the evidence of the impact of outpatient palliative care. J Palliat Med. 2013;16(12):1540-1549. 74. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
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Viewing Hospice Decision Making as a Process
American Journal of Hospice & Palliative Medicine® 1-8 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909115569592 ajhpm.sagepub.com
Rafael D. Romo, PhD, RN, PHN1,2, Margaret I. Wallhagen, PhD, GNP-BC, AGSF, FGSA, FAAN1, and Alexander K. Smith, MD, MPH, MS2,3
Abstract Research focused on understanding that the nature of hospice decision making has both described the characteristics of those who do and do not utilize hospice and identified many factors related to choosing hospice. However, this literature has not explored the underlying decision-making processes, limiting our understanding. We examine the extant literature and propose a framework that views hospice decisions as an evolving process, identify key factors that bear directly on this process, and discuss the contextual environment, including the idea of a decision maker triad. We end with a discussion of how this framework can be used to support clinical practice and future research. Our goal is to provide a framework from which to understand the end-of-life needs of all patients, no matter where they receive care. Keywords hospice, end-of-life care, prognosis, communication, decision making, older adults
Although hospice aims to provide end-of-life care consistent with older adults’ stated priorities,1 most decedents do not receive its services, and a majority of hospice patients die within weeks of enrolling.2 Consequently, hospice may not be used as widely as would be anticipated. Significant research has been undertaken to understand the characteristics of those who do and do not use hospice; however, less is known about how patients come to make the actual decisions, especially among those who decline to use hospice.3-5 The aim of this article is to explore the nature of hospice decision making among older adults as a process and identify factors that directly influence it. The contextual environment will be explored, including the view of a ‘‘decision maker’’ triad comprised of the patient, provider, and informal social partners. We will end with a discussion of the implications for clinical practice and future research.
considering patients’ priorities for care. In the best-case scenario, as patients’ conditions progress and health declines, providers begin to explore clinical circumstances with their patients and reevaluate the goals of treatment. Options are considered and reexamined. Choices get made and reassessed. This decision-making process is particularly important for older adults because they often die after a long period of decline during which hospice is likely to become appropriate.7 However, pinpointing the timing of this transition can be challenging. Compared to younger adults, older ones are more likely to die from illnesses that are characterized by unpredictable trajectories of decline, such as cardiovascular disease, heart failure, renal failure, diabetes, and chronic obstructive pulmonary disease.8 These trajectories can lead to temporal changes in decision making and explain the observations of many researchers that older adults often change preferences for life-sustaining treatments as their health declines9,10 and want
Hospice Decisions as a Process Although choosing to enroll in hospice can be seen as an isolated, stand-alone decision, it is better seen as a process arising from the interaction of beliefs, attitudes, and behaviors that evolves over time. Hospice admission criteria lend support to the former view as there is generally a unique point in time when health-care providers recommend hospice and patients then ‘‘elect’’ the services.6 This is a significant event and marks a transition from a curative to palliative focus related to care.2 However, the discernment around enrolling in hospice begins earlier and involves
1
Department of Physiological Nursing, School of Nursing, University of California, San Francisco, CA, USA 2 San Francisco Veterans’ Affair Medical Center, Geriatrics, Palliative & Extended Care, San Francisco, CA, USA 3 Division of Geriatrics, Department of Medicine, University of California, San Francisco, CA, USA Corresponding Author: Rafael D. Romo, PhD, RN, PHN, San Francisco VA Medical Center, 4150 Clement Street (181G), San Francisco, CA 94121, USA. Email: [email protected]
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Figure 1. Decision-making process at the end-of-life.
less involvement in decision making as they become more ill.11 Further, the process of accepting and adjusting to the reality of the end of life unfolds gradually and involves recognizing both the decline in one’s health and ineffectiveness of current treatments.3,12 The same process is true for coming to see the value of hospice. Thus, the decision-making process that has occurred over a disease trajectory influences whether or not a referral to hospice is made and how the referral is perceived. We represent this process in Figure 1 by synthesizing the current literature into a conceptual framework. Decision making occurs within a contextual environment that consists of policy and environmental issues, psychosocial factors, and sociocultural and religious considerations. Further, the decision maker includes the patient as well as informal and professional social partners such as family, friends, and health-care providers. These players are uniquely influenced by the contextual environment and bring their own perspectives to communication, understanding of prognosis, experience with illness/health, and preferred decision-making role. The result is a decision behavior that evolves and changes over time. Before examining the context, we will discuss the factors that most directly influence the decision-making process.
Factors Influencing Hospice Decision-Making Behavior Understanding Prognosis A hospice decision is influenced by both providers’ and older adults’ understanding of prognosis. At a minimum, referring physicians must determine that patients have less than 6 months to live.6 Furthermore, because hospice patients must forgo curative treatments, such as chemotherapy for cancer,6
they must at least tacitly acknowledge that they are approaching death, even if they are not aware of the 6-month criteria. Consequently, providers are more likely to discuss hospice with patients’ they believe have a limited prognosis, and patients who understand this prognosis are more likely to forgo life-sustaining treatments that would be contrary to hospice use.13-15 Among older adults specifically, researchers have found that those who perceive a limited prognosis are more likely to prefer low-burden treatments to invasive, highburden ones.16-18 Despite poor clinical prognoses, however, patients frequently overestimate how long they have to live.14,15,19 This misunderstanding may be related to the limited health literacy of most older adults.20 Prognosis is couched in probabilities and statistics, and patients often lack the numeracy—or ability to comprehend and use numerical information—to fully appreciate what prognosis means.21 This incongruence between clinical and subjective prognosis complicates decision making and can lead to choices based on unlikely clinical outcomes, including a desire for treatments inconsistent with hospice (ie, prolonged hospitalizations, ICU stays, etc).5,14 But even when patients know their prognosis, many still will not enroll—as many as 30% of eligible patients decline after the option is presented.13,15 Consequently, prognosis is one but not the only factor influencing decisions to utilize hospice.
Illness/Health Experience Individuals’ decision making is also influenced by their experience with their illness. Compared to nonhospice patients, those in hospice have more comorbidity and functional decline, leading to less desire for wanting life-sustaining interventions.22 Other researchers note that these factors alone increased the likelihood that patients and providers discuss
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hospice.13,14 Huskamp et al15 found that participants who experienced poorer health than others were more likely to have discussed hospice with providers. Gauthier23 noted that participants identified ‘‘pivotal events’’ that led them to reevaluate their circumstances and begin the transition to accepting hospice. Among African Americans, Campbell et al24 found that participants used changes in their health as a trigger for decision making but only if the changes resulted in physical symptoms. When deciding to discuss options with patients near the end of life, providers use their own perception of patients’ experiences and changes in condition. Using a hypothetical patient meeting national guidelines for prognositic disclosure, Keating et al25 found that most physicians would discuss prognosis but would only discuss hospice and end-of-life care options if patients were symptomatic and had no nonpalliative options available. Diagnosis also matters. Patients with heart failure, obstructive pulmonary disease, and renal failure have lived with their conditions for years and do not necessarily see the disease as progressive or life limiting.26,27 Consequently, patients with noncancer diagnoses are more likely to want interventions that would preclude hospice and to focus on factors unrelated to their underlying condition.28,29 They also often view hospice as a service only for patients with cancer or for when they no longer want to be hospitalized, while patients with cancer view hospice as appropriate but only when close to death.18 Thus, the decision to accept hospice is based on understanding one’s disease and prognosis, as well as seeing a contextual need for the services. Patients, families, and providers often do not see hospice services as necessary or valuable until patients are very close to death and actively dying.5,18 This finding is reflected in the high level of satisfaction with the timing of hospice referrals, even among those who enroll within days or weeks of death.30,31 These factors likely contribute to the prevalence of short stays in hospice (less than 3 weeks)—patients must perceive themselves as ‘‘sick and dying’’ before they seek to change the focus of their care. However, significant interplay between prognosis and illness/health experience appears to exist: Patients’ estimate of their prognosis may become more realistic as their health declines, while simultaneously they may discuss prognosis with their providers that change their perception of their health.
Decisional Control In addition to prognosis and illness/health experience, personal autonomy is an important factor in decision making. In countries like the United States, strong emphasis is placed on patients’ making independent, informed decisions about their care; yet, the actual and preferred roles older adults wish to take vary greatly. Not all patients make the decision to enroll in hospice,32 with a sizable number choosing to delegate hospice decisions to others.32,33 Consequently, many older adults may prefer a more passive approach to autonomy.
Patients’ preferences range from wanting to be fully independent to completely delegating decisions to others. In between lies some degree of collaborative decision making where patients want to share decisional responsibility.11,29,34 The extent to which patients wish to maintain control over decisions varies between studies, ranging from 20% to 40% for those who want to maintain or delegate decisional control. The differences may be related to sample differences and survey construction. Butow et al11 recruited patients with cancer and asked who ‘‘should’’ make decisions. Heyland et al34 recruited patients with a variety of diagnoses but asked about ‘‘preferred’’ roles. And Laakkonen et al29 recruited cardiovascular patients, asked who ‘‘should’’ make decisions but also added a ‘‘close relative’’ into the mix of decision makers. Although subtle, the differences are significant because ‘‘should’’ has paternalistic connotations while ‘‘prefer’’ implies a degree of control. In contrast to other researchers, Moorman35 found that 80% of her participants wanted to maintain autonomy in their endof-life decision making. However, she further notes that the expression of autonomy does not necessarily equate to a desire for independent decision making. This observation is supported by a study among women with breast cancer that found yielding decisions to a trusted person enabled some participants to maintain a sense of control and autonomy.36 Decisional control is also related to illness experience and prognostic awareness. Studies have found that physical decline is significantly related to wanting less involvement in decision making.11,29,34 Although the relationship between prognostic awareness and decision-making role has not been a focus of most studies, taken as a whole, the body of literature implies that such a connection exists.
Open Communication Good, open communication is a critical aspect of end-of-life decision making. To fully appreciate the benefits of hospice, patients and their families must understand prognosis and the severity of the patient’s illness. This understanding can come through discussions with providers if they are able to present the actual clinical circumstances in ways that are meaningful to patients and families, thus potentially mitigating the problem of health literacy.14,15 However, these discussions do not appear to happen often,37 and when they do, they are frequently late in a disease process, leaving insufficient time for patients to adapt to their changing circumstances or adjust their health-care priorities.12 Physicians and nurses often point out that patients and families neither wish to discuss nor acknowledge their prognosis and its implications, thereby creating barriers to hospice.38,39 However, researchers have found that most patients want to know their prognosis but also want to control how and when discussions happen.37,40-42 Rather than having a long, detailed discussion during a single meeting, patients want frequent, short conversations regarding prognosis.41 Older adults also cite benefits to knowing prognosis, such as making preparations, getting
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4 the most out of life, and being informed.40 These benefits outweighed concerns for any distress related to knowing prognosis. Still, a sizable minority did not want to know their prognosis and strongly opposed the idea of being told.37,40-42 While weighing clinical circumstances, providers have the challenge of navigating the ambivalence patients and families may experience.43 Providers may try to have conversations regarding prognosis and to reevaluate treatment goals but find patients unreceptive. As a result, patients and families may believe a discussion of prognosis has not been held. Through discussing prognosis and clinical circumstances, providers help patients and families understand their prognosis and illness progression. Similarly, providers come to understand patients’ values and priorities. Consequently, the relationship between prognosis, illness/health experience, and decisional control unfolds within this communication. Each influences the other and changes the perceptions patients have regarding available options and whether patients seek an active or passive role in decision making.
The Decision-Making Context Decision-Making Triad Research on patient decision making has focused primarily on the patient, the provider, or the relationship between the two. Providers are responsible for giving patients the information needed to make informed decisions, and patients are considered the ultimate decision maker.44 A key part of this relationship is the trust patients have in their providers.1,34,36 Trust enables the communication mentioned previously and allows many older adults to feel comfortable delegating decisions. But there is a third actor that has not been studied as much: patients’ families and friends. Family members and friends often assume an important the role as surrogates; however, their role as supportive players is evident. Laakkonen et al29 noted that more than 50% of all participants wanted a family member involved in end-of-life decisions, although they did not explore the degree of this involvement. Bullock45 and Campbell et al24 found that participants spoke of wanting family involved in end-of-life/hospice discussions, even expressing anger when providers did not wait for family to be present. Among Latinos and Asian Americans, end-of-life decisions are often seen as family decisions, not individual ones, and patients are sometimes left out of the process entirely. This can occur even when patients still have the capacity to make decisions.46-48 The importance of social relationships is also seen in other ways. The lack of social support may manifest a need for hospice, as those who are unmarried or live alone are more likely to use hospice.15,22 Fear of being a burden on family increases the likelihood that older adults will discuss end-of-life issues with their families, and positive experiences with hospice or experiencing the death of a loved one result in more favorable views of hospice.47,48 On the other hand, families may decrease the likelihood that hospice will be used. Vig el al5 performed a
small study of patients who declined hospice and found that some family members were opposed to hospice because they feared losing control over the care of their loved ones. Because family and friends play an important role in decision making, they cannot be excluded from the equation. By supporting and encouraging—or actively discouraging—hospice use, informal social partners can be either an enabling or an inhibiting force. Limited research has looked at the role of these players outside of surrogacy; consequently, the degree to which they influence older adults’ decisions is not yet clear.
Contextual Environment As exemplified in Figure 1, the decision-making triad exists within a contextual environment that includes multiple spheres of influence. Further, this environment influences each member of the triad differently. Although we are unable to fully discuss this concept in a short review, recent discussions based on science and ethics have thoughtfully examined the varied nature of this environment.49-51 Still, highlighting certain aspects is important. The recent debate around ‘‘death panels’’ demonstrated the strong influence of politics and policy on end-of-life decision making and resulted in the removal of the provision to reimburse providers for conversations with older patients regarding goals of care that was initially a component of the Affordable Care Act. Specifically related to hospice, analysts have long cited Medicare’s regulations as an impediment to hospice use. The need to forgo standard, curative care in favor of the purely palliative focus of hospice has been dubbed ‘‘the terrible choice’’52 and is considered a major reason for patients to decline a referral.53 Physicians often cite prognostic uncertainty as a primary reason for their own ambivalence toward making a referral in the first place.38,54 Although Medicare sets general standards for admission, specific criteria vary from one hospice provider to another, with some accepting patients with intravenous fluids, antibiotics, tube feedings, and so on while others do not.55,56 Consequently, organizational factors add an additional layer of complexity to the decision. In addition to the policy and structural issues around hospice, sociocultural aspects and religion are important contextual components that have been extensively studied. Compared to whites, studies have found that, on average, other racial and ethnic groups have stronger preferences for lifesustaining treatments and dying in a hospital, and less favorable views of hospice, all of which would decrease the likelihood of hospice use.47,48,57-60 Likewise, significant differences have been noted between groups based on religion and spirituality, with a greater degree of religiousness/spirituality associated with a greater desire for life-sustaining treatments and hospitalization at the end of life.48,59,61,62 These factors also influence patients’ desire for decisional control, with race/ethnicity and religious beliefs being associated with preferences for autonomy and involvement in decision making.46,47,59,63,64
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Generalizing the data on sociocultural influences is challenging. Focusing on group differences runs the risk of overlooking intragroup heterogeneity that cannot be discounted. Although studies have found statistically significant differences in preferences for hospice between different racial/ethnic groups, the differences are often small and all groups generally have a favorable view albeit not universally so.57,60 Consequently, significant intragroup variability remains unexplained. The relationship between the decision-making context, decision-making triad, and social/cultural factors is not easily teased out. Balboni et al65 provide an example in a recent study. They found that participants with a higher degree of spiritual support from religious communities were more likely to want life-sustaining treatments and less likely to enroll in hospice. However, when participants felt spiritual support also came from their providers, this was no longer the case. The researchers could not explain the finding, but it is reasonable to assume the interaction between providers and patients gave rise to the perception of this support.
Discussion The complex, multifactorial nature of end-of-life decision making has many implications for both clinical practice and research. Health-care providers must be mindful of the variability found among patients when it comes to decision making and treatment preferences. Although biomedical ethics includes 4 equal principles of autonomy, nonmaleficence, beneficence, and justice,44 respect for autonomy gets more emphasis, especially when one of the outcomes is death. Respecting patients’ autonomy can be difficult if patients rely heavily on others for guidance and delegate decision making, as may be true for older adults regarding emotionally laden decisions.66 In these situations, patients are placing a great deal of trust in their providers who may feel uncomfortable taking a proactive role. Because providers experience discomfort and ambivalence, they may prefer to mention every possible option, even if the options are unlikely to improve clinical outcomes. However, offering patients choices simply because they are available may do a disservice, particularly if outcomes are framed only as living-or-dying and not in the context of patients’ priorities and goals. In Table 1, we provide suggested strategies that providers can use to optimize when and how to have hospice discussions with their patients. Discussing end-of-life care with patients can be difficult but is a core aspect of caring for older adults. Some clinicians suggest routinely offering to discuss prognosis with patients who have a prognosis of less than 10 years or have reached the age of 85.67 By doing so, providers can begin to explore preferences when patients are in relatively good health, rather than during a crisis. Finding time to have these conversations can be challenging. The time available for a standard clinical visit is limited by pressures to be more efficient, the need see more patients, and increased regulatory reporting. However, discussions regarding end-of-life care do not need to be all encompassing. Periodically revisiting the topic during routine office visits allows for shorter conversations and helps to build trust
Table 1. Strategies to Optimize Hospice and End-of-Life Discussions. Focus on patients’ values and outcomes rather than treatment alternatives. Communicate about values, outcomes, and prognosis early in the illness trajectory. Ask about patients’ religious and spiritual beliefs and explore how these beliefs influence patients’ decision making. Use earlier communication to improve patients’ understanding of their conditions and help patients to adjust to changes over time. Continually assess patients’ circumstances and use significant changes in clinical circumstances as ‘‘triggering’’ events to reevaluate goals of care. Encourage patients to include family or friends in the discussions of priorities so that these potential surrogates are better informed and feel more confident making substitute decisions. Consider prognosis when making recommendations and use online calculators to aid in estimating prognosis (eg, ePrognosis— http://eprognosis.ucsf.edu). Collaborate with palliative care programs and other professionals to better understand patients’ priorities and decision making.
and reenforce the relationship between providers, patients, and families. In addition, as noted earlier, such an approach is preferred by many patients.41 Shared decision making is widely regarded as the model for patient–provider communication and calls for patients and providers to work collaboratively and make decisions jointly.68 However, this approach requires strong communication skills—not to mention time—that providers often feel they don’t have.69 Providers can also turn to other professionals who have been shown to be effective collaborators, such as nurses, social workers, and chaplains.70-72 Although limited in number, palliative care programs are an additional resource. These programs are designed to facilitate conversations around goals of care and have been shown to improve satisfaction with care, reduce health-care utilization, improve symptom management, and increase quality of life.73,74 To date, limited research has been undertaken to explore hospice decision making specifically among older adults with a limited prognosis. Existing decision-making models focus on decision outcomes and identifying ‘‘better’’ ways of making decisions. But before attempting to alter patients’ behavior, providers must first understand the origins of existing behavior. To this end, future research needs to focus on the underlying processes of older adults’ decision making from within the full context of their situations. To understand more fully the combined role of patients, families and friends, and providers, research is needed that jointly explores the perspectives of all the actors involved. Most studies have examined decisions from the perspective of patients and providers alone or within the patient–provider dyad. However, the influence of informal social partners, like family and friends, needs to be understood beyond their role as surrogates. To varying degrees, hospice decisions arise from the interaction of all 3 actors, and each of these actors bring his or her unique perspective to the process of decision making. Research is also needed that explores what happens when
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American Journal of Hospice & Palliative Medicine®
6 patients are unwilling to exercise autonomy so that the implications on the type and quality of care received are better understood.
Summary We describe the complex and intricate nature of hospice decision making. By examining the contextual process used, we are able to identify key aspects directly influencing the behavior that results in different decisions. Exploring this process will not only enable us to further our understanding of the barriers to hospice that continue to persist but also help us to understand the unique needs of those who never utilize hospice. Our goal is not to identify ways to encourage and increase the use of hospice per se but to understand the needs of older adults at the end of life. Whether in hospice or not, all older adults should receive high-quality palliative care. Acknowledgment The authors wish to thank Tom Fairbanks for the graphic design.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclose receipt of the following financial support for the research, authorship and/or publication of this article: John A. Hartford Foundation/Building Academic Geriatric Nursing Capacity scholarship.
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