|Ending the End-of-Life Communication Impasse:
A Dialogic Intervention
Cancer Communication and Aging
Lisa Sparks, Dan O’Hair and Gary Kreps, eds
Hampton Press (in process)
John W. Lannamann, PhD; Linda M. Harris, PhD;
Alexis D. Bakos, PhD, MPH, RN; Kylene J. Baker
Providers and their dying patients are stuck in a dysfunctional interpersonal logic that has emerged within the hospital context. Their impasse delays the palliative care that can relieve physical and emotional suffering, dramatically impacting their quality of life. We propose a dialogic intervention: An ongoing conversation in which patients and their families bring life to their personal meanings for post diagnosis caregiving decisions and caregiving tasks. Based upon multiple theoretical models as well as therapeutic and organizational experience, we offer several suggestions for breaking the end of life communication impasse. We believe that giving patients and their families the opportunity to self organize around caregiving will end the end of life impasse. We suggest that family centered post diagnosis care planning conversations with patients and their loved ones will better prepare them to accept hospice earlier than they do today. We propose that patients and their significant others who engage in repeated family centered care planning scenarios will overcome the impasse that exists in the current decision making process.
Gregory Bateson, famed anthropologist and communication scholar, died of
cancer at his own funeral. Here is a portion of his daughter’s, Mary Catherine Bateson, account of their extraordinary “Six Days of Dying”:
“During those six days we were at San Francisco Zen Center, with most of the family and a few close friends sharing in the nursing and the Zen community providing practical help and a context of coherent tranquility….Roger, a friend from Esalen, saw the pupils of his eyes dilate as his mind encountered the dark. So we gathered around the bed, some six of us who had been caring for him most closely, hardly breathing ourselves as we waited from breath to breath, the time stretching, the time stretching beyond the possible, and yet again and again followed by a gasping reflexive inhalation, and then again the lengthening pause. I kept praying that he would be free from each next compulsive effort, let go, rest, and when after a time no further breath followed, we still stood, slowly relaxing with the faintest sighs, barely able to return to a flow of time not shaped by that breathing. Lois reached forward, after her office, and gently closed his eyes.”
“We did not at that time pause to mourn but slowly found our way into the expression of continuing care…in my turn, I reached out and began to straighten his arms, then folding his hands…we all worked together, removing soiled pads, cleaning away the final traces of excrement, lifting and turning and washing each limb…Downstairs we drank sherry and ate the stilton cheese that Gregory loved…”
Like many funerals, Gregory Bateson’s was highly ritualized. Unlike most contemporary funerals, his was a continuation of the caregiving ritual, “so that the shadows of guilt and anger, which so often complicate grief…may be lightened by the experience of tending someone we love with our own hands, so that much that seems externally repellent and painful is transmuted by tenderness.” What is striking about this description of the final days of Gregory Bateson’s life is that the coherent tranquility afforded by his care givers appears to have allowed him and those around him to preserve some of the qualities that had made his life meaningful. A persistent theme in Bateson’s writing is that meaning, quality, and beauty are possible only in the context of a pattern of connections. In that sense, the meaning and quality of his end of life experience was a continuation of his pattern of living.
As life expectancies increase and the final effects of terminal illnesses are delayed, questions about the quality and meaning of the end of life become increasingly important. The medical advances that make new options possible for the terminally ill also present new burdens on the social support systems of patients and their families. In this chapter, we explore the communication implications of living longer with a terminal illness. Specifically, we explore what appears to be the paradox of end of life communication: early family led discussions regarding end of life decisions improve the quality of life for patients and their social support network, yet these discussions are often postponed until after many if not all of the options are closed off by death. We offer a therapeutic intervention of family centered care planning dialogues; a metaphor for interpersonal interactions in which patients and their significant others create their own communal meanings for what counts as post diagnosis care and in doing so, construct their own caring rituals, much like the Batesons did.
CONTEXT AND CONVERSATIONS MATTER
Context provides the social permissions and constraints for the kinds of things we can comfortably say and do together. And, in reciprocal fashion, the conversations that occur within these contexts help define their character as well (Pearce & Cronen, 1980). Hospitals, for example, to a large extent define and are defined by the conversations that are held and relationships that are sustained within them (Finnegan & Viswanath, 1990; Harris et al., 2004). It should be expected, therefore, that certain kinds of hospital conversations are more easily held than others. Specifically, as we shall see in our overview of the evolution of hospital and hospice contexts, communication having to do with cure is quite a good fit within hospitals. Conversations about death and the end of life are permissible and even encouraged within a hospice context. However, the evidence of an impasse between patients and their providers regarding end of life communication, reviewed below, suggests there is no reliable way of initiating end of life conversations within the curative hospital context. Our review of recommendations for end of life conversations suggests they are helpful once the patient has shifted into a hospice context conducive of end of life communication but offer no reliable way to initiate the taboo subject of death within a curative hospital context. This chapter offers one way to manage this dilemma.
Rapid changes in U.S. medical care and technology have altered the communicative contexts in which patients and families make their decisions concerning end of life care. These contextual shifts have eroded traditional support systems that once guided patients and their families through the unfamiliar territories of death and dying. Although modern medical care has the potential to delay death, and in some cases even seems to offer some hope for avoiding it, ultimately death prevails.
We will ask: In what context can timely death preparations reliably occur?
Evolution of the Hospital Context in the U.S. The success stories of modern medical care in the last fifty years make it difficult to recall a time when the hospital was not seen as a place to be healed but rather as a place signifying death. Our ancestors would find it surprising that the modern hospital is now a place where patients sometimes plead to extend their stays, contesting the limitations mandated by cost conscious insurance programs. Yet, this is just part of an ongoing evolutionary drift involving hospitals and the larger culture context. In his history of hospitals, Risse (1999) traces the evolution of the cultural meanings of hospitalization. He observes that hospitals were originally thought of as houses of “mercy, refuge, and dying” (p. 676). But, as a rudimentary understanding of contagion emerged, hospitals became houses of segregation used to isolate contagious patients from the rest of society. During the Enlightenment, the hospital increasingly became a house of science and research. The contemporary hospital has now become a “house of high technology” (p.677).
With the secularization of hospitals and the shift away from providing a place of mercy and refuge, the patient as a biological entity has benefited in many ways, but patient as a social being has also lost access to some of the community resources that once provided comfort when facing death. Risse writes:
Historically, hospitals have dealt openly with death and dying, with patients assembled in large wards routinely witnessing such events with a mixture of fear and comfort.... Before the Enlightenment, dying in hospitals was considered a blessing for believers expecting salvation. Surrounded by prayerful care givers and provided with the last sacraments, their redemption was complete. (p. 678.)
As hospitals became secularized, they were forced to compete for funding and this, Risse argues, meant that hospitals began “shunning the fatally ill, viewing their management as a waste of their limited resources and their ultimate death as detrimental to an image built on low mortality statistics”(p. 679). Risse suggests that a slightly more benevolent version of this attitude is still with us. He writes that “dying is frequently equated with treatment failure, and heroic efforts are made to prolong life at all costs” (p. 679).
Cancer as Case in Point. Today families facing a cancer diagnosis typically do so within the hospital’s curative context. It is estimated that 570,280 cancer related deaths are expected to occur in 2005 (Jemal et al., 2005). A majority of terminally ill cancer patients suffer with unrelieved pain, unwanted intrusive life sustaining measures and delayed hospice referrals (SUPPORT, 1995; Field & Cassel, 1997; Fins et al., 1999). This too often becomes a “chronic crisis for cancer patients and their families who find no relief for months or years. Caplan (1971) describes a crisis situation as existing “when a person faces an obstacle which is, for a time, insurmountable through the utilization of customary methods of problem solving. A period of disorganization ensures, a period of upset, during which many different abortive attempts to a solution are made” (cited in Woolley, 1990, p. 1403). Unfortunately, many health care providers are constrained by their training and the curative model of care leave them unprepared to help patients and their families reorganize themselves around the management of a life threatening condition. Misunderstandings, missed opportunities and unnecessary suffering result, as the evidence below, suggests.
Larson and Tobin write that “For patients and families facing advanced illness, the medical interventions and quality of life that lie ahead are largely determined through a series of conversations they have with their physicians and other health care providers” (2000, p. 1573). This, we believe, is particularly the case for end of life conversations in which quality of life can be enhanced. However, problematic conversations can have a significant impact on the quality of life as well as the evidence reviewed below reveals. There is little research documenting the actual provider – patient dynamics regarding end of life. But we do have access to findings that support Kelly’s multi-site ethnography (1997) demonstrating that families and health care providers hold competing interpretations and concerns related to end-of-life decisions. Our review of this literature takes each perspective in turn, followed by an analysis of the communication impasse these juxtaposed perspectives create.
From the Provider’s Perspective. Ninety-seven percent of doctors told their cancer patients about their diagnosis, according to a survey in 1979, compared to 10% thirty years earlier (Freedman, 1993; Okum, 1961). Physicians are not as forthcoming regarding prognosis. Miyaji found vagueness among physicians when it comes to informing patients about their prognosis. He found that 84% of physicians thought their dying patients were aware of their prognosis. Only half of physicians actually told their patients of their prognosis (1993). In a national survey of internists 90% believed that doctors should try to avoid prognostication. Seventy-five percent replied that they “sometimes find it helpful to shade prognoses to the positive”. Ninety two percent of these internists were “reluctant to make predictions about a patient’s illness when the clinical situation is uncertain” and believe that patients expect “too much certainty”. Eighty-eight percent reported that their patients “might lose confidence in them” if they are mistaken (Christakis & Iwashyna, 1998). A study by Johnston, Pfeifer, and McNutt revealed several reasons, according to physicians, that they do not discuss advance directives, including their fear of depressing or upsetting the patient (1995). Some physicians reported that advance directives were “perceived as the beginning, not the end of the discussion” (Pfeifer et al., 1994).
Providers may block end-of-life conversations to avoid their awkwardness (Morrison, 1998). Schneiderman et al. found that physicians’ projections of what they believed to be their patient’s preferences correlated more closely to their own preferences for less CPR and more artificial nutrition and hydration than their patients (1993). Missed opportunities for communication were identified in 29% of the family conferences that took place surrounding end of life decision making in the intensive care unit. Missed opportunities were defined as opportunities to listen and respond to family members, opportunities to acknowledge and address emotions, and opportunities to pursue key principles of medical ethics and palliative care (Curtis et al., 2005).
Professional training in communication skills has not yet met the perceived need of nurses and physicians (Samaroo, 1996). The SUPPORT project found that even when providing a nurse to facilitate end-of-life discussions most patients had not discussed advance directives with their physicians (Teno et al, 1997).
Our assessment of the providers’ perspective is that their options for managing end of life conversations are limited by the curative and technological context the medical setting has become. This context offers them multiple justifications to focus on and even intensify the curative tools that have currency in the hospital context. Introducing the topic of death in this curative context places them at perceived risk of awkwardness, for creating anxiety or depression in the patient, or undermining their own credibility.
From the Patient’s Perspective. Passage of the Patient Determination Act (PSDA) in 1990 required health care institutions to inform patients regarding their rights about decision-making and advance directives (1990). However, survey research reveals that although many patients want to talk about end-of-life issues (Miles, Koepp, & Weber, 1996; Reilly et al., 1994; Smucker et al., 1993; Lo, McLeod, & Saika, 1986; Tulsky, Fischer, Rose, & Arnold, 1998), it rarely happens. Happ et al. (1999) found that end-of-life discussions with frail older adults and their families were delayed until the death was imminent if conducted at all. This delay is often accompanied by: a knowledge deficit on the part of both caregivers and patients, denial by the patient, the caretaker’s reluctance to disclose bad news, and an over reliance on high technology (Johnson & Slanika,1999; Morris & Branon Christie, 1995).
Most patients believed that it is their doctor’s responsibility to initiate a conversation about advance directives, according to a study of primary care patients by Johnston et al. (1995). The great majority believed that doctors should discuss advance directives before their patients are seriously ill (91%), and most patients (61%) thought that discussion should include others, including spouse or significant others.
In a study of older, chronically ill patients, 66% expressed an interest in discussing end-of-life decision but less than 10% had actually spoken to their doctor in this regard (Lo et al., 1986). Gamble, McDonald, and Lichstein found similar results in a survey of older patients who had discussed terminal care with their doctors one year after the passage of the PSDA. Sixty three percent of these patients initiated end-of-life discussions themselves (1991). In a study of the impact of the PSDA upon doctor-patient communication Bradley found of the 40% of alert residents, less than one third had had a discussion with their doctor related to these rights. (Bradley, 1998).The landmark Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), involved over 9000 patients in 5 hospitals (1995). In their subset of seriously ill patients only 23% had talked with their doctors regarding CPR (Hofmann et al., 1997). A study of cancer patients in London found that 95 of 101 patients wanted “as much information as possible, good or bad” (Fallowfield, Ford, & Lewis, 1994). End-of-life conversations may occur more often among older, more educated patients (Walker, Schonwetter, Kramer, & Robinson, 1995).
Pfeifer et al. found that of the 30% of patients with a life expectancy of less than 18 months, most wanted end-of-life information “in an honest and straightforward manner” (1994). Patients’ conversations are not always in alignment with their medical condition. They may steer conversations away from their “pain, self-blame, anger, loss, fear and other difficult experiences that could be the content of end-of-life discussions” (Larson & Tobin, 2000, p. 1573). Weeks et al. (1998) found that patients often overestimated their chances of survival. Family members may avoid conversations that could move the patient from a curative to comfort form of care (Lynn et al., 2000). Butow et al. (1996) studied cancer patients’ psychological adjustment. Fifty seven percent wanted to discuss life expectancy with their providers but it only occurred in 27% of the cases.
Often patients are frustrated by the lack of end of life conversations but reluctant to initiate them. The physician usually initiates and sets the tone for end of life communication which often relegates the patient to a passive role thereby impacting the flow of communication. Here it makes more sense to not ask difficult questions, placing the responsibility for initiating discussions about death to the professionals in charge of their care.
Evolution of the Hospice Context
The increasing emphasis on the curative and the technical aspects of medical cure has created an opening for alternative contexts that offer palliative care. Hospice is one such alternative. Consistent with its roots in medieval times, hospice is primarily concerned with providing comfort rather than cure. Historically, hospices were located along routes popular with travellers, crusaders, and pilgrims. These early refuges were primarily a place of care (Lundgren & Chen, 1986). Stoddard (1978) tells us that the ancient hospice provided “hospitality in its original sense of protection, refreshment, “cherysshing,” and fellowship, rather than the demand of a patient for a cure. (p. 7,cited in Lundgren & Chen, 1986, p. 137).
As modern medical advances made patient cure a realistic option and as the science of pain management developed in the controlled setting of the hospital, the societal appeal of the hospice declined for all but those for whom medical cures were no longer possible. As Morris and Branon Christie (1995, p. 21) observe, “the hospice often is seen as the place one goes to die, the place that says to the patient ‘your end is near.’” This is one of the reasons that, even among the terminally ill, less than 50% receive hospice care (Emanuel & Emanuel, 1998). Approximately one in five Medicare beneficiaries used hospice care in 1998 but the average period of hospice use has declined over the years with half of Medicare hospice users receiving care for 19 days or less and average length of hospice care at one week or less (Government Accountability Office, 2000).
The “hospice as place to die” metaphor obscures the original sense of hospice as a place of refreshment, fellowship, and care. It is the recognition of these important elements of support that has contributed to the recent growth in hospice care, particularly among cancer patients. It is precisely those characteristics along with the possibility of home based palliative care that many find lacking in the more curative oriented based medical context hospitals have become.
End of Life Communication and the Hospice Context
Several researchers and practitioners have offered approaches to end of life communication which, we believe, are more reliably conducted in the palliative setting of hospice, given its nurturing context, than in the hospital context:
A recent Institute of Medicine (1997) report recommends that end of life communication should involve:
“not only the preparation of legal documents but also discussions with family members and physicians about what the future may hold for people with serious illnesses, how patients and families want their beliefs and preferences to guide decisions (including decisions should sudden and unexpected critical medical problems arise), and what steps could alleviate concerns related to finances, family matters, spiritual questions, and other issues that trouble seriously ill or dying patients and their families”
Lo et al. (1999, p. 744) remind us that “as patients struggle to find closure in their lives, active listening and empathy have therapeutic value in and of themselves. This is consistent with recent calls for treating elderly patients as “active interpreters, managers, and creators of the meaning of their health and illness” (Vanderford, Jenks, & Sharf, 1997, p. 14; Ragan, Wittenberg, & Hall, 2003).
Curtis et al. (2001, p.30) recommends a “family conference” as a way to help patients and families hold on while letting go. Specifically they suggest “moving from hoping for recovery to hoping for some quality time together or for a comfortable death without pain or dyspnea and with as much dignity and meaning as possible.” Von Guten, Ferris, and Emanuel (2000) in their 7 step approach for structuring end of life communication, recommends a family meeting, joined by their physician during which unresolved intrafamily issues can be addressed. Bowman’s (2000) family systems approach to end of life communication offers a similar acknowledgment of the importance of exploring families’ interpretations and unresolved conflicts. Fins and Soloman (2001), Quill (2000), and Choppra (2001) call attention to the value of fostering continual healing relationships, as does the IOM’s recent report on quality of care, Crossing the Quality Chasm (2001).
Ragan et al. (2003, p. 221) observe that “all patients, terminal or otherwise, want pain and other noxious symptom management, but patients and their families and caretakers also realize that there are other, equally important concerns at the end of life and that PC [palliative care], ideally, should address these meaning of life issues as well as pain control.” Ragan et al. suggest that palliative care must engage “existential issues of meaning, relationships, autonomy, guilt, dignity, and communication.”
Balaban (2000), in discussing the essential communication elements of palliative care, describes it as “fearless healing”. Fearless healing means listening to and talking about the things that are painful, ‘including patients’ and family members’ suffering and loss. Fearless healing can also mean helping patients and family members “hold on and let go”. As Bowman claims, the “tension between holding onto and letting go of a dying loved one is enormous for any family but can be overwhelming for a family with unreconciled conflict” (2000, p. S19).
Ironically, hospice is the one context in the health care system that offers permission and the expertise to implement the kinds of end of life conversations recommended above. Hospice care can be an important resource offering precisely the sort of “cherysshing” that may make it possible to experience a high quality of life all the days, even the final days, of our lives. Sadly, few patients with diagnoses of terminal conditions go through these doors.