The hospice movement: A study in the diffusion of innovative palliative care Susan Lynn Sloan, BA, MA
Introduction According to medical historian David Reisman,1 the first evidence of hospice care appeared prior to 475 A.D., in a Port of Rome refuge founded by Fabiola, a disciple of Saint Jerome, to care for pilgrims returning from
Africa. While this may be the first substantiation for the existence of a hospice, the concept of showing “hospitality to wayfaring strangers antedates this period.2 How the concept of hospitality became intrinsically linked with the care of the dying may be illuminated by a study of the etymology of the word hospice. Like the Indo-European words, “host,” “hospitality,” and, “hospital,” the root of the word, “hospice,” is ghosti. According to Luke: Ghosti meant “stranger” as well as “guest” and “host,” properly, “someone with whom one has reciprocal duties ofhospitality.” There follows yet another meaning: from this root word also came the English “hostile,” via the second meaning of “host” as a multitude often of enemies. This, again, is connected to the fear of the unknown, which leads to the frequent projection of suspicion and hostility onto anything or any person that is strange to us.3 —
Susan Lynn i, BA, MA, is a Teaching Assistant, California State University, Chico, Cal?fornia.
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Itis within the duality ofthese divergent expressions of the same root word that a true understanding of the
Recognizing our obligation to care for the stranger, the wayfarer, we simultaneously recoil from that which is unknown, andperhaps unwanted. development of the modem hospice concept of caring for the dying can be found. Recognizing our obligation to care for the stranger, the wayfarer, we simultaneously recoil from that which is unknown, and perhaps unwanted. Therefore, in caring for the palliative needs of the terminally ill patient, hospice has attempted to not only minister to the spiritual, psychological, and physical needs of the patient and family,
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but also to address and correct the aversion that a death-denying society ascribes to the last greatjourney of life. Hospice offers, therefore, not just hospitality and care for the dying; it offers everyone whose life it touches the opportunity to confront the fear of their own mortality and to live life not in denial of death, but in, “the light of death.”4 This study seeks to fill a gap that exists in the literature on the hospice movement by using Everett M. Rogers’ work on diffusion of innovations to address the manner in which human communication impacts the adoption of hospice as an alternative way to care for the dying and their families. As a preliminary study it has two aims. First, it examines the wealth of materials available on hospice innovations and attempts to outline the innovationdecision process from the communication perspective of both institutional and individual adoption decisions. Second, it seeks to explicate gaps that exist in the current body of research literature and suggest those areas that may be particularly noteworthy for future study.
Discussion Diffusion ofinnovations Everett M. Rogers’ D~ffi4sionofInnovations,5 first published in 1962, is recognized as a “Bible” by communication diffusion scholars. Using a plethora of rich quantitative and qualitative case studies for purposes of illustration, Rogers’ provided a theoretical framework for understanding, “the process by which an innovation is communicated through certain channels over time among the members of a social system.”6 Central to an understanding of diffusion is Rogers’ model of the, “innovation-decision process.” According to Rogers: The innovation-decision process is the process through
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which an individual (or other decision-making unit) passes from first knowledge of an innovation, to forming an attitude toward the innovation, to a decision to adopt or reject, to implementation of the new idea, and to confinuation of this decision.7
Central to an understanding of diffusion is Rogers ‘model of the ‘innovation-decision process.” In the discussion that follows, this five-stage process will be applied to the development of the international hospice movement from its modern roots in England, to its diffusion to the United States and, subsequently, to other developed nations of the globe. The ~doption process, “a decision to make full use of an innovation as the best course of action available,”8 will be broken down into two component parts: • Institutional adoption at the community level, and, • Family-centered adoption at the individual level. Particular attention will be focused on diffusion in the United States for two reasons: 1. The bulk of available research has been done in this country. 2. Because the United States is a country of diverse ethnic peoples and a sharp dichotomy exists between rural and urban environments, it provides a prototype for understanding some of the current cultural
and developmental problems that are confronting the equitable diffusion of hospice worldwide. Finally, consequences, defined by Rogers as, “the changes that occur to an individual or to a social system as a result of the adoption or rejection of an innovation,”9 will be examined in the diffusion of hospice as an alternative palliative care system. Institutional adoption: The five-stage process As seen from the introduction to this study, hospice is not a new concept. It has its roots in the centers of hospitality for wayfarers found in Medieval Europe, In the words of Dr. Cicely Saunders, the person universally recognized as the founder of the modem hospice movement: “I picked up from different places. There aren’t too many different ideas in the world. What you do is collect ideas that seem to be relevantand put them into the kaleidoscope, give it a shake and it comes down in a new pattern.”10 Saunders did not so much “innovate” the concept of hospice as “renovate” it. According to Paradis, the modern roots of hospice trace to the Irish Sisters of Charity in Dublin: “In the mid 1800s, Sister Mary Aikenhead opened a home in Dublin for the dying calling it ‘hospice’ in consonance with her view of death as part of an eternal journey.”11 However, it was Saunders who established the first 20th Century hospice, St. Christopher’s in Sydenham, England, as a direct consequence of her interpersonal communication with David Tasma, a dying patient. According to Buckingham: In the late l940s, Dr. Saunders
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became friends with a man in his forties dying of cancer in a busy London hospital. As they talked, the idea of a place that could meet the needs of the dying which could have met his needs grew. Together they shared a dream of a haven where others like him could die in peace and dignity. This man, who had escaped from the Warsaw ghetto, died in 1948, leaving 500 pounds to Dr. Saunders, and saying ‘I’ll be a window in —
—
12
your home.’
Nineteen years later, St. Christopher’s Hospice opened, following years of preparation and planning by Saunders and a team of committed individuals. It was recognized as an innovation in the care of terminally ill patients and their families.
The diffusion of the hospice concept to the United States In the knowledge stage of the innovation-decision process, “the individual (or other decision-making unit) is exposed to the innovation’s existence and gains some understanding of how it functions.”13 Central to the spread of knowledge about hospice to the United States was a series of lectures Saunders delivered at Yale University in the 1960s, in addition to interpersonal communications with persons affiliated with the university. Writing in St. Christopher’s annual report for 1977-78, she said: Our important links with the United States began in 1963, with an invitation to the Yale School of Medicine through an English surgeon, Bernard Lytoon, who had carried out a research project at St. Joseph’s. Here I met FlorenceWald, Dean of theGraduate School ofNursing who, in 1966, when I was again there as a visiting lecturer,
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invited Elisabeth Kubler-Ross, Colin Murray Parkes, and myself to meet in a workshop attended by others already involved in this field. Dr. KublerRoss was then carrying out the work on which she later based her best-selling book, On Death and Dying (1969) which led to such a surge of interest in this field in the states. 14
Central to the spread of knowledge about hospice to the United States was a series of lectures [Cicely] Saunders delivered at Yale University in the 1960s By Rogers’ definition, both Saunders and Kubler-Ross provided opinion leadership during the knowledge stage in the diffusion process. An opinion leader is an individual who leads, “in influencing others’ opinions about innovations,” and who has, “the ability to activate diffusion networks in a social system. ~ While both individuals can certainly also be classified as innovators, they served a dual function as opinion leaders during the initial stages of the diffusion process. Saunders’ influence was particularly noteworthy in regard to the effect of her speech on Yale medical students, who, “notoriously sophisticated and hard to please gave her a standing ovation, something no one present had ever witnessed there before.”16 According to Paradis, the organizers of the early hospices established in the United States, “turned to England for guidance; others sought support from leaders such as Elisabeth Kubler-Ross.”7 Paradis also notes the important role that media played in
promoting hospices, citing KublerRoss’s book, On Death and Dying, as a major factor in spreading knowledp of the importanceof the movement.1 In turning to the second stage of the innovation-decision process, it is essential to take note of the larger social context within which the diffusion of hospice occurred. According to Rogers, “At the persuasion stage the individual forms a favorable or unfavorable attitude toward the innovation. Whereas the mental activity at the knowledge stage was mainly cognitive (orknowing), the main type of thinking at the persuasion function is affective (or feeling).”9 While Rogers notes that, “a favorable or unfavorable attitude toward an innovation does not always lead directly or indirectly to an adoption or rejection decision,”2° an adopter is certainly influenced by the feeling component attached to the innovation. It is here that the larger sociological trends of the 1960s were beneficial in persuading adopters, both institutional and individual, to embrace the hospice concept. According to Fox: ...
the death-and-dying movement, “intersects with the broad affirmation of individual rights taking place in American society since the 1960s and with organized attempts to expand the scope of these rights.” Beginning in 1963, with Betty Friedan’s book The Feminine Mystique and subsequent formation of the National Organization of Women, the women’s movement initiated discussion of women’s rights over control of their bodies and childbirth. The articulation of the right to die closely paralleled the right to choose a birthing place. In both instances, groups organized to oppose restrictions concerning “constitutionally” guaranteed rights to give birth
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and to die in the settings that one wishes without interference from others.21 The “death awareness” movement thus paralleled other changes which were being sought within the social system of the United States. According to Rogers, several innovations were being perceived as a “bundle” rather than as distinct and unrelated ideas; a “technology cluster” of interrelated innovations. Thus, the adoption of one innovation fostered the adoption of its sister components.22 As more and more persuasion flowed through mediated channels, each piece of information served to further the goals of its author’s specific agenda, but also the goals of related movements. Thus, the 1960s fostered a positive affective societal context for the diffusion of hospice concepts. On the level of interpersonal communication, Paradis notes the dialogue that was prevalent among the early hospice organizers, people who generally were not professionals, “but rather clergy, consumers, social workers, funeral directors, etc.”23 Frustrated over the current practices in the care of the terminally ill, they began a grassroots movement to change things. It was their intensive-persuasive dialogue as change agents [“In most cases a change agent seeks to secure the adoption of new ideas “24] that was so crucial to the decision of communities to adopt the hospice concept. According to one organizer: We were all just mad. We all had some horror story. We were angry at the doctor, the nurse, someone. After a while we realized that our loved one might have received better care if he was at home. It was the place of care that caused the problem. All of us had a bad experience with [the] hospital Now we knew what we had to do ,,25 ...
..
DuBois provides several case studies of the establishment of hospices in the United States, as well as one case study in the failure to adopt.26 His case study of the establishment of the first United States Hospice, Hospice, Inc., of New Haven, Connecticut, will be used to illustrate how the steps in the innovationdecision process come together.
The “death awareness” movement paralleled other changes which were being sought within the social system ofthe United States. ...
At the time Cicely Saunders came to Yale in 1966, FlorenceWald was the Dean of the Graduate School of Nursing. Wald had worked with and studied the terminally ill for over a decade. Having acquired knowledge of the hospice concept via Saunders, and uniting this knowledge with her own personal evaluation of the needs of dying patients and their families, Wald began to gather around her the individuals who would act as change agents in bringing about the adoption of the hospice concept. She began to establish what Rogers terms a communication network. Such a network, “consists of interconnectedindividuals who are linked by patterned flows of information.”27 The opinion leader’s interpersonal networks allow him or her to serve as a social model whose innovative behavior is imitated by many other members of the system.27 Through her contact with Saunders, Wald had become part of Saunders’ communication network. Now Wald began to add another link to that network. According to DuBois’ account: The founders’ group included Ms. Wald; Reverend Ed Dobihal, Director, Department of Religious Ministries, Yale-
New Haven Hospital; and Drs. Morris Wessel and Ira Goldenberg of the hospital. They began a planning process to translate their vision into the reality of meeting the death-related needs of the New Haven Community. Most of the planning group spent timeliving and studying at St. Christopher’s in London. They felt that experiencing a functioning hospice would be crucial to the development of plans for an American institution. Hospice, Inc. has adopted the principles of care already demonstrated in the English model. The visits to St. Christopher’s also served an important inspirational function for them as they started their uni~ue project in the United States. Armed with extensive knowledge, and bolstered by the favorable social context surrounding their endeavors, the group approached the decision stage of the innovation-decision process. “The decision stage occurs when an individual (or other decisionmaking unit) engages in activities that lead to a choice to adopt or reject the innovation.”29 Looking to the New Haven community for support of their project, rather than the university where they would have to compete for funding, the decision was made to adopt.3°Working from an original task force of approximately 150 individuals, the following suggested program was developed: ...
• Define the relevant gaps in the health care system. • Design a program that will best fill those gaps. • Stress the uniqueness of the hospice program. • Educate the community, and especially the medical community, about hospices.
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• Establish a smaller group to work out the specifics ofthe program and its implementation. Hospice, Inc. of New Haven has since served as a prototype and educational center for other groups interested in establishing hospices in the United States. It should be noted that the linear sequence implied by the process of knowledge-persuasion-decision is not always the sequence followed.31 In the case of the diffusion of hospice, it would appear that a knowledge-decision-persuasion sequence may provide a closer approximation of the actual flow of events. The opinion leaders, supported by a communication network of individuals, are most likely to make the decision to adopt and then persuade the community or affiliated funding institution to support their adoption decision. For instance, the case of Hospice, Inc. of New Haven: Without the support of the medical community, Hospice, Inc. had no chancefor approvalfrom the Connecticut State Health Commission, but physicians had to be convinced of the effectiveness and value of such an institution. The health commission turned down their petition twice before they finally accepted it. One key to acceptance was “expert testimony” of oncologists and psychiatrists. At the start of the hearing, twothirds of the members of the commission were opposed to Hospice, Inc.; in the end, their approval was unanimous.32 The fourth stage in the innovationdecision process is implementation, which, “occurs when an individual (or other decision-making unit) puts an innovation into use implementation involves overt behavior change, as the new ideais actually put into practice.”33 For Hospice, Inc. of New Haven, a ...
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$10,000 grant was received in January of 1972. At that time the following goals were set for implementation:
• Home Care
to develop a home care program to begin actual patient care as soon as possible. —
As hospice programs are implemented, there should be a communications infrastructure that allowsfor continuing appraisal of the success orfailure of the program • Facility Planning
longer range planning for an inpatient institution and model hospice.
• Finances
—
fund raising for allprojects as well as calculating expenses and possible fee scales for the new hospice. —
• Community Relations
to enlist community support and implement Hospice, Inc.’s role as a model for others. —
• Professional Relations and Research for the education —
of healthcare workers, evaluation of the project, and development ofmedical expertise in the area of pain relief.34 Step five in the innovation-decision process is confirmation. “Confirmation occurs when an individual (or other decision-making unit) seeks reinforcement of an innovation-decision already made, but he or she may reverse this previous decision if exposed to conflicting messages about the innovation.”35 It should be noted that in the plan enumerated above, theimplementationplan has included, under the fifth
item, an ongoing evaluation. As hospice programs are implemented, there should be a communications infrastructure that allows for continuing appraisal ofthe success or failure of the program to achieve desired results. Dependent upon this evaluation is the ability to re-invent portions that are not producing desired outcomes or choosing to discontinue the innovation altogether. The hospice innovation-decision is a very complex process that is in many ways culturally bound to the community in which it occurs. The decision to adopt or not to adopt at the institutional level will have tremendous consequences for those involved. DuBois notes that, “Until the interests of the dying and their families are recognized as universal concerns that affect the last stage of all our lives and the quality of life in our society, we as a nation will continue to die miserable deaths. 36 Family-centered adoption: The five-stage process Even if a community decides to adopt the hospice concept, this does not guarantee the participation of the individual patient. Therefore, the second part of the diffusion of hospice as an alternative form of palliative care involves the innovation-decision process on the part of individuals. Gochman and Bonham provide valuable research into the individual adoption process.37 Several findings of their two complementary studies are worth noting here. First, knowledge of hospice as an alternative care philosophy for the terminally ill patient is most likely to come from friends and relatives, with physicians as another important source. Second, timing is crucial in the decision whether or not to adopt. Regardless of prior knowledge of available hospice services, families receiving, “no additional communication during the illness were about seven times less likely to report considering
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the use of hospice than families who received information both before and during the illness (10.53 percent vs. 68.64 percent).”38 Third, information received through interpersonal communication leads to higher levels of adoption (approximately 23-25 percent higher) than information impersonally received through media. Fourth, physicians assume important “gatekeeping” functions for the patient in regard to the decision to adopt. While 90 percent of respondent physicians were aware of hospice services, only slightly more than 50 percent of those physicians discussed the option with their terminally ill patients. Fifth, the decision to adopt is most likely to be made by the patient’s primary caregiver. From this information it is possible to draw a likely communication scenario of the individual innovationdecision process in those communities where hospice care has been established. Prior to the period of illness, the patient or family, either through mass media or interpersonal dialogue, has heard of the existence of the hospice organization. Once the patient has been diagnosed as being in the terminal stage of the illness, a crucial period occurs. When the physician has determined that rigorous treatment is no longer appropriate, and that palliative care is now appropriate, the type and source of communication about hospice becomes crucial. This period represents the window of opportunity in terms of getting to the patient and family (particularly the primary caregiver) information about hospice. In addition, effectivecommunication is essential in order to present the characteristics of hospice care that separate it from other types of available care. As noted above, interpersonal communication is likely to be the most effective communication channel for achieving a decision to adopt. Perhaps the most crucial question
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that has come out of Gochman and Bonham’s research is why physicians who are knowledgeable about the availability of hospice services do not
physicians who are knowledgeable about the availability ofhospice services do not communicate this information to approximately one-half of their patients. It has been widely recognized thatphysicians, sworn by oath to heal their patients, may find it extremely difficult to make the transition from intensive intervention to palliative care. communicate this information to approximately one-half of their patients. It has been widely recognized that physicians, sworn by oath to heal their patients, may find it extremely difficult to make the transition from intensive intervention to palliative care. DuBois’ case study of Strong Memorial Hospital contains information that illuminates this problem. Bradford Patterson,Associatedirector of the Cancer Center and practicing oncological surgeon, was instrumental in working toward the idea of a hospice after noticing that dying patients were not being treated in a manner that reflected their terminal condition. According to DuBois: “He admitted that this failing was the fault of physicians who could not orwould not accept death and whose treatment of the dying was, therefore, inappropriate.39
Patterson said: As it is, we all have widely varying techniques for handling terminally-ill patients, stating that it depends on thepatient, the family or family physician. Actually it depends most of all on the attitudes, personality and traditions of the physicians-in-charge. I suggest that we develop our own standards based on experience and thoughtful observation. These guidelines would help us to confront families, teach students, and live with our ethical and moral decisions.~ It may be that the increasing incidence of deaths due to AIDS has in some ways forced both physicians and private citizens to more directly confront the issues surrounding their own mortality. This is true in that AIDS is a contagious disease, whereas cancer (the most common terminal condition of hospice patients) is not. In addition, since AIDS has been portrayed as incurable, there is less of a personal sense of failure for the physician in diagnosing a terminally ill AIDS patient. Studying communication patterns between physicians and their AIDS patients may provide clues to understanding the dynamics of why physicians knowledgeable about hospice choose not to communicatesuch information to their patients. From a feminist perspective, research is needed into the differences in communicative patterns of male and female physicians regarding the availability of hospice services. Dr. Robert Fulton, Professor of Sociology at the University of Minnesota, made the observation that outstanding achievement awards in the area of dying have all gone to women. According to Fulton: “It has to do with a revolution in ethics, with the distinction between cognitive and gut feeling
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response to life. More feeling, more concern, more empathy that is an integral part of the whole hospice message.”41 Accordingly, the Nobel Prize went to Mother Teresa for her work in Calcutta; the Tielhard de Chardin went to Elisabeth Kubler-Ross; and the Templeton Award went to Cicely Saunders. With the rise of interest in gender-related communication, it makes sense for feminist communication scholars to apply their theoretical knowledge and varying methodological approaches to an understanding of the communication process in the field of hospice diffusion and the delivery of health care services. Certainly much remains to be done in understanding why breakdowns occur in the communication of hospice information. It is not enough to have institutional adoption. Individual, family-centered adoption must be given equal attention. —
Consequences of the decision to adopt the hospice innovation What are the changes that occur in individuals and the larger socialsystem following the decision to adopt hospice? According to Rogers, very little research has been done to address this very important area, even though each, “innovation produces social and economicreactionsthat run throughout the social structure of the client system.”42 Additionally, what methodology is most appropriate for evaluating consequences? He suggests that qualitative research that focuses on anthropological techniques of participant-observation may be the most appropriate, rather than quantitative number-crunching.43 Certainly qualitative approaches provide the rich detail that is necessary to evaluate consequences within a contextual framework. This would seem to be particularly important when dealing with
a movement that has the goal of humane care and quality of life.
in contrast to the growing diffusion of hospice into rural communities, how can the hospice concept be successfully diffused into urban areas of the United States? ...
According to MacDonald, the four principal traditions that underlie the hospice tradition are: • The philosophy of humanism; • The ideology of liberalism; • The Judeo-Christian ethic of charity; • The culture of the middle class.~ These very particular cultural ideologies have important implications for the consequences that may arise from the adoption of hospice, and problems that may be confronted when these ideologies confront the ever-increasing diversity of cultural perspectives found within the United States and worldwide. As Rogers points out, our technologically-oriented society assumes a pro-innovation bias that equates change with “the good.” Unfortunately, even the most enlightened innovations (and hospice could certainly be considered that) contain certain assumed values that must be examined in light of the application of the innovation to a particular cultural context. While it is not within the scope of this study to fully explore this topic, it is a crucial area for future research. Specifically, hospice research should be focused in two areas. First, based on a predominantly white, middle-class philosophical world view, how does
hospice accommodate the ever-growing need to serve an ethnically diverse population? Second, in contrast to the growing diffusion of hospice into rural communities, how can the hospice concept be successfully diffused into urban, poverty-stricken areas of the United States? In Beresford’s article, “Innovative Volunteer Management,” he makes reference to the issue of cultural diversity from the standpoint of the changing nature of hospice’s crucial voluntary force: “Culturaldiversity and differences among us are an essential aspect of our history,” Silver says, but, “some agencies ‘kill off’ internal differences in an effort to maintain hannony and community.” Cultural differences may not be easy to discuss openly, but there can be enormous value in examining an agency’s attitudes toward diversity, and in drawing upon the diverse background of its people.45 Paradis recommends that, “social movement research,” should focus on the impact that changes in Medicaid and Medicare funding have on the changing demographics of hospice patient populations.46 Stoddard notes, “Many of our minority groups have brought with them strong traditions of family and community solidarity in the face of illness and death.”47 How these minority groups can be integrated successfully into a system composed of strong underlying, assumed, white, middle-class values needs extensive research. How can divergent cultural traditions in language, caregiving, and medically appropriate technology be successfully accommodated? Stoddard quotes a Brooklyn nurse as saying that hospice sometimes seems like, “the best kept secret in America.”48 It is unfortunately a secret kept more closely in inner city areas ...
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than in rural communities. According to Stoddard: Three million dollars in federal funds were provided recently in the Los Angeles area for a hospice building to serve 25 AIDS patients. That’s fine. But think what the same amount could do in a dozen storefronts or abandoned warehouses in downtown Los Angeles, New York, or Washington The place of darkness is now the inner city which has become the shadow side of the glitterin~y civilization our age has built.4 Research that explores how we can best diffuse hospice into the ghetto areas of the United States might also facilitate the attainment of an understanding regarding the potential fordiffusion of hospice internationally to Third World Nations. ...
Conclusion This study has attempted to explicate the crucial role that communication plays in the diffusion of hospice care for the terminally ill. While the concept of hospice is an ancient one, the modern hospice movement is a relatively recent phenomenon, with St. Christophers being established in England a short 25 years ago. Through the “re-innovation” work and opinion leadership of Cicely Saunders, the hospice concept has become an international movement, embracing most of the developed world. However, while the hospice concept proliferates in the United Kingdom, Canada, Japan, and the United States, much remains to be done. Stilluntouched are the developing and underdeveloped nations of the world. In Stoddard’s words, “In most of theworld today, there is no morphine to give people for extreme, chronic pain. And if there is morphine, or the equivalent, too oftenit is not given.”50 In addition, the inner city ghettos of our largest cities stand as islands isolated in large part from the
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benefits of humane treatment for the dying. While much illumination has been provided by the interdisciplinary research that has thus far been produced, there are many areas that remain open to more extensive exploration. Future research should address the following priority areas: • The physician’s role as gatekeeper in the innovation-decision process at the individual adoption level. • The impact of ethnic diversity on the hospice movement. • Studies involving theimpact of gender differences on the diffusion of hospice concept. • Research into the problems associated with establishing adequate palliative care both in urban ghetto areas and in Third World nations. By addressing these issues, the hospice movement may come closer to providing humane and enlightened care to larger segments of the world’s population.~
References 1. Paradis LF: Hospice handbook: A guide for managers and planners. Rockville, MD, Aspen Systems Corporation, 1985 2. Kamperidis L: Phioxenia and hospitality. Parabola; 15(4):4-13 3. Luke HM: The stranger within. Parabola; 15(4): 17-23 4. Earle W: The autobiographical consciousness. Chicago, Quadrangle Books, 1981 5. Rogers EM: Diffusion of innovations: Third edition. New York, The Free Press, 1983
6. ibid. 7. ibid. 8. ibid. 9. ibid. 10. Paull N: A conversation with Cicely Saunders. Hospice, Winter, 1990:14-16 11. op cit. Paradis LF 12. Buckingham RW: The complete hospice guide. New York, Harper & Row, 1983 13. op cit. Rogers EM
14. op cit. Paradis LF 15. op cit. Rogers EM 16. DuBoulay S: Cicely Saunders: Founder of the modern hospice movement. New York, Amaryffis Press, 1984 17. op cit. Paradis LF
18. ibid. 19. op cit. Rogers EM
20. ibid. 21. 22. 23. 24. 25.
op cit. op cit. op cit. op cit. O~cit.
Paradis LF Rogers EM Pardis LF Rogers EM Paradis LF
26. DuBois PM: The hospice way of death. New York, Human Sciences Press, 1980. 27. op cit. Rogers EM 28. op cit. DuBois PM 29. op cit. Rogers EM 30. op cit. DuBois PM 31, op cit. Rogers EM 32. op cit. DuBois PM 33. op cit. Rogers EM 34. op cit. DuBois PM 35. op cit. Rogers EM 36. op cit. DuBois PM 37. Gochman DS, Bonham OS: Physicians and the hospice decision: Awareness, discussion, reasons and satisfaction. The Hospice Journal;4:25-53. Also: The social structure of the hospice decision. The Hospice Jour-
nal;6:15-37 38. op cit. Gochman DS, Bonham OS, 1990 39. op cit. DuBois PM
40. ibid. 41. op cit. DuBoulay S 42. op cit. Rogers EM
43. ibid. 44. MacDonald D: Hospice, entropy, and the 1990s: Toward a hospice world view. Am J Hosp & Pal Care, July/August 1990:39-47 45. Beresford L: Innovative volunteer management. California Hospice
Report;1(8):l-15 46. Paradis LF: An assessment of sociology’s contributions to hospice: Priorities for future research. The Hospice Jour-
nal;4(3):57-7 1 47. Stoddard S: Hospice: Approaching the 21st Century. Am J Hosp & Pal Care, March/April 1990:27-30
48. ibid. 49. ibid. 50. ibid.
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Introduction According to medical historian David Reisman,1 the first evidence of hospice care appeared prior to 475 A.D., in a Port of Rome refuge founded by Fabiola, a disciple of Saint Jerome, to care for pilgrims returning from
Africa. While this may be the first substantiation for the existence of a hospice, the concept of showing “hospitality to wayfaring strangers antedates this period.2 How the concept of hospitality became intrinsically linked with the care of the dying may be illuminated by a study of the etymology of the word hospice. Like the Indo-European words, “host,” “hospitality,” and, “hospital,” the root of the word, “hospice,” is ghosti. According to Luke: Ghosti meant “stranger” as well as “guest” and “host,” properly, “someone with whom one has reciprocal duties ofhospitality.” There follows yet another meaning: from this root word also came the English “hostile,” via the second meaning of “host” as a multitude often of enemies. This, again, is connected to the fear of the unknown, which leads to the frequent projection of suspicion and hostility onto anything or any person that is strange to us.3 —
Susan Lynn i, BA, MA, is a Teaching Assistant, California State University, Chico, Cal?fornia.
24
Itis within the duality ofthese divergent expressions of the same root word that a true understanding of the
Recognizing our obligation to care for the stranger, the wayfarer, we simultaneously recoil from that which is unknown, andperhaps unwanted. development of the modem hospice concept of caring for the dying can be found. Recognizing our obligation to care for the stranger, the wayfarer, we simultaneously recoil from that which is unknown, and perhaps unwanted. Therefore, in caring for the palliative needs of the terminally ill patient, hospice has attempted to not only minister to the spiritual, psychological, and physical needs of the patient and family,
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but also to address and correct the aversion that a death-denying society ascribes to the last greatjourney of life. Hospice offers, therefore, not just hospitality and care for the dying; it offers everyone whose life it touches the opportunity to confront the fear of their own mortality and to live life not in denial of death, but in, “the light of death.”4 This study seeks to fill a gap that exists in the literature on the hospice movement by using Everett M. Rogers’ work on diffusion of innovations to address the manner in which human communication impacts the adoption of hospice as an alternative way to care for the dying and their families. As a preliminary study it has two aims. First, it examines the wealth of materials available on hospice innovations and attempts to outline the innovationdecision process from the communication perspective of both institutional and individual adoption decisions. Second, it seeks to explicate gaps that exist in the current body of research literature and suggest those areas that may be particularly noteworthy for future study.
Discussion Diffusion ofinnovations Everett M. Rogers’ D~ffi4sionofInnovations,5 first published in 1962, is recognized as a “Bible” by communication diffusion scholars. Using a plethora of rich quantitative and qualitative case studies for purposes of illustration, Rogers’ provided a theoretical framework for understanding, “the process by which an innovation is communicated through certain channels over time among the members of a social system.”6 Central to an understanding of diffusion is Rogers’ model of the, “innovation-decision process.” According to Rogers: The innovation-decision process is the process through
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which an individual (or other decision-making unit) passes from first knowledge of an innovation, to forming an attitude toward the innovation, to a decision to adopt or reject, to implementation of the new idea, and to confinuation of this decision.7
Central to an understanding of diffusion is Rogers ‘model of the ‘innovation-decision process.” In the discussion that follows, this five-stage process will be applied to the development of the international hospice movement from its modern roots in England, to its diffusion to the United States and, subsequently, to other developed nations of the globe. The ~doption process, “a decision to make full use of an innovation as the best course of action available,”8 will be broken down into two component parts: • Institutional adoption at the community level, and, • Family-centered adoption at the individual level. Particular attention will be focused on diffusion in the United States for two reasons: 1. The bulk of available research has been done in this country. 2. Because the United States is a country of diverse ethnic peoples and a sharp dichotomy exists between rural and urban environments, it provides a prototype for understanding some of the current cultural
and developmental problems that are confronting the equitable diffusion of hospice worldwide. Finally, consequences, defined by Rogers as, “the changes that occur to an individual or to a social system as a result of the adoption or rejection of an innovation,”9 will be examined in the diffusion of hospice as an alternative palliative care system. Institutional adoption: The five-stage process As seen from the introduction to this study, hospice is not a new concept. It has its roots in the centers of hospitality for wayfarers found in Medieval Europe, In the words of Dr. Cicely Saunders, the person universally recognized as the founder of the modem hospice movement: “I picked up from different places. There aren’t too many different ideas in the world. What you do is collect ideas that seem to be relevantand put them into the kaleidoscope, give it a shake and it comes down in a new pattern.”10 Saunders did not so much “innovate” the concept of hospice as “renovate” it. According to Paradis, the modern roots of hospice trace to the Irish Sisters of Charity in Dublin: “In the mid 1800s, Sister Mary Aikenhead opened a home in Dublin for the dying calling it ‘hospice’ in consonance with her view of death as part of an eternal journey.”11 However, it was Saunders who established the first 20th Century hospice, St. Christopher’s in Sydenham, England, as a direct consequence of her interpersonal communication with David Tasma, a dying patient. According to Buckingham: In the late l940s, Dr. Saunders
25
became friends with a man in his forties dying of cancer in a busy London hospital. As they talked, the idea of a place that could meet the needs of the dying which could have met his needs grew. Together they shared a dream of a haven where others like him could die in peace and dignity. This man, who had escaped from the Warsaw ghetto, died in 1948, leaving 500 pounds to Dr. Saunders, and saying ‘I’ll be a window in —
—
12
your home.’
Nineteen years later, St. Christopher’s Hospice opened, following years of preparation and planning by Saunders and a team of committed individuals. It was recognized as an innovation in the care of terminally ill patients and their families.
The diffusion of the hospice concept to the United States In the knowledge stage of the innovation-decision process, “the individual (or other decision-making unit) is exposed to the innovation’s existence and gains some understanding of how it functions.”13 Central to the spread of knowledge about hospice to the United States was a series of lectures Saunders delivered at Yale University in the 1960s, in addition to interpersonal communications with persons affiliated with the university. Writing in St. Christopher’s annual report for 1977-78, she said: Our important links with the United States began in 1963, with an invitation to the Yale School of Medicine through an English surgeon, Bernard Lytoon, who had carried out a research project at St. Joseph’s. Here I met FlorenceWald, Dean of theGraduate School ofNursing who, in 1966, when I was again there as a visiting lecturer,
26
invited Elisabeth Kubler-Ross, Colin Murray Parkes, and myself to meet in a workshop attended by others already involved in this field. Dr. KublerRoss was then carrying out the work on which she later based her best-selling book, On Death and Dying (1969) which led to such a surge of interest in this field in the states. 14
Central to the spread of knowledge about hospice to the United States was a series of lectures [Cicely] Saunders delivered at Yale University in the 1960s By Rogers’ definition, both Saunders and Kubler-Ross provided opinion leadership during the knowledge stage in the diffusion process. An opinion leader is an individual who leads, “in influencing others’ opinions about innovations,” and who has, “the ability to activate diffusion networks in a social system. ~ While both individuals can certainly also be classified as innovators, they served a dual function as opinion leaders during the initial stages of the diffusion process. Saunders’ influence was particularly noteworthy in regard to the effect of her speech on Yale medical students, who, “notoriously sophisticated and hard to please gave her a standing ovation, something no one present had ever witnessed there before.”16 According to Paradis, the organizers of the early hospices established in the United States, “turned to England for guidance; others sought support from leaders such as Elisabeth Kubler-Ross.”7 Paradis also notes the important role that media played in
promoting hospices, citing KublerRoss’s book, On Death and Dying, as a major factor in spreading knowledp of the importanceof the movement.1 In turning to the second stage of the innovation-decision process, it is essential to take note of the larger social context within which the diffusion of hospice occurred. According to Rogers, “At the persuasion stage the individual forms a favorable or unfavorable attitude toward the innovation. Whereas the mental activity at the knowledge stage was mainly cognitive (orknowing), the main type of thinking at the persuasion function is affective (or feeling).”9 While Rogers notes that, “a favorable or unfavorable attitude toward an innovation does not always lead directly or indirectly to an adoption or rejection decision,”2° an adopter is certainly influenced by the feeling component attached to the innovation. It is here that the larger sociological trends of the 1960s were beneficial in persuading adopters, both institutional and individual, to embrace the hospice concept. According to Fox: ...
the death-and-dying movement, “intersects with the broad affirmation of individual rights taking place in American society since the 1960s and with organized attempts to expand the scope of these rights.” Beginning in 1963, with Betty Friedan’s book The Feminine Mystique and subsequent formation of the National Organization of Women, the women’s movement initiated discussion of women’s rights over control of their bodies and childbirth. The articulation of the right to die closely paralleled the right to choose a birthing place. In both instances, groups organized to oppose restrictions concerning “constitutionally” guaranteed rights to give birth
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and to die in the settings that one wishes without interference from others.21 The “death awareness” movement thus paralleled other changes which were being sought within the social system of the United States. According to Rogers, several innovations were being perceived as a “bundle” rather than as distinct and unrelated ideas; a “technology cluster” of interrelated innovations. Thus, the adoption of one innovation fostered the adoption of its sister components.22 As more and more persuasion flowed through mediated channels, each piece of information served to further the goals of its author’s specific agenda, but also the goals of related movements. Thus, the 1960s fostered a positive affective societal context for the diffusion of hospice concepts. On the level of interpersonal communication, Paradis notes the dialogue that was prevalent among the early hospice organizers, people who generally were not professionals, “but rather clergy, consumers, social workers, funeral directors, etc.”23 Frustrated over the current practices in the care of the terminally ill, they began a grassroots movement to change things. It was their intensive-persuasive dialogue as change agents [“In most cases a change agent seeks to secure the adoption of new ideas “24] that was so crucial to the decision of communities to adopt the hospice concept. According to one organizer: We were all just mad. We all had some horror story. We were angry at the doctor, the nurse, someone. After a while we realized that our loved one might have received better care if he was at home. It was the place of care that caused the problem. All of us had a bad experience with [the] hospital Now we knew what we had to do ,,25 ...
..
DuBois provides several case studies of the establishment of hospices in the United States, as well as one case study in the failure to adopt.26 His case study of the establishment of the first United States Hospice, Hospice, Inc., of New Haven, Connecticut, will be used to illustrate how the steps in the innovationdecision process come together.
The “death awareness” movement paralleled other changes which were being sought within the social system ofthe United States. ...
At the time Cicely Saunders came to Yale in 1966, FlorenceWald was the Dean of the Graduate School of Nursing. Wald had worked with and studied the terminally ill for over a decade. Having acquired knowledge of the hospice concept via Saunders, and uniting this knowledge with her own personal evaluation of the needs of dying patients and their families, Wald began to gather around her the individuals who would act as change agents in bringing about the adoption of the hospice concept. She began to establish what Rogers terms a communication network. Such a network, “consists of interconnectedindividuals who are linked by patterned flows of information.”27 The opinion leader’s interpersonal networks allow him or her to serve as a social model whose innovative behavior is imitated by many other members of the system.27 Through her contact with Saunders, Wald had become part of Saunders’ communication network. Now Wald began to add another link to that network. According to DuBois’ account: The founders’ group included Ms. Wald; Reverend Ed Dobihal, Director, Department of Religious Ministries, Yale-
New Haven Hospital; and Drs. Morris Wessel and Ira Goldenberg of the hospital. They began a planning process to translate their vision into the reality of meeting the death-related needs of the New Haven Community. Most of the planning group spent timeliving and studying at St. Christopher’s in London. They felt that experiencing a functioning hospice would be crucial to the development of plans for an American institution. Hospice, Inc. has adopted the principles of care already demonstrated in the English model. The visits to St. Christopher’s also served an important inspirational function for them as they started their uni~ue project in the United States. Armed with extensive knowledge, and bolstered by the favorable social context surrounding their endeavors, the group approached the decision stage of the innovation-decision process. “The decision stage occurs when an individual (or other decisionmaking unit) engages in activities that lead to a choice to adopt or reject the innovation.”29 Looking to the New Haven community for support of their project, rather than the university where they would have to compete for funding, the decision was made to adopt.3°Working from an original task force of approximately 150 individuals, the following suggested program was developed: ...
• Define the relevant gaps in the health care system. • Design a program that will best fill those gaps. • Stress the uniqueness of the hospice program. • Educate the community, and especially the medical community, about hospices.
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• Establish a smaller group to work out the specifics ofthe program and its implementation. Hospice, Inc. of New Haven has since served as a prototype and educational center for other groups interested in establishing hospices in the United States. It should be noted that the linear sequence implied by the process of knowledge-persuasion-decision is not always the sequence followed.31 In the case of the diffusion of hospice, it would appear that a knowledge-decision-persuasion sequence may provide a closer approximation of the actual flow of events. The opinion leaders, supported by a communication network of individuals, are most likely to make the decision to adopt and then persuade the community or affiliated funding institution to support their adoption decision. For instance, the case of Hospice, Inc. of New Haven: Without the support of the medical community, Hospice, Inc. had no chancefor approvalfrom the Connecticut State Health Commission, but physicians had to be convinced of the effectiveness and value of such an institution. The health commission turned down their petition twice before they finally accepted it. One key to acceptance was “expert testimony” of oncologists and psychiatrists. At the start of the hearing, twothirds of the members of the commission were opposed to Hospice, Inc.; in the end, their approval was unanimous.32 The fourth stage in the innovationdecision process is implementation, which, “occurs when an individual (or other decision-making unit) puts an innovation into use implementation involves overt behavior change, as the new ideais actually put into practice.”33 For Hospice, Inc. of New Haven, a ...
28
$10,000 grant was received in January of 1972. At that time the following goals were set for implementation:
• Home Care
to develop a home care program to begin actual patient care as soon as possible. —
As hospice programs are implemented, there should be a communications infrastructure that allowsfor continuing appraisal of the success orfailure of the program • Facility Planning
longer range planning for an inpatient institution and model hospice.
• Finances
—
fund raising for allprojects as well as calculating expenses and possible fee scales for the new hospice. —
• Community Relations
to enlist community support and implement Hospice, Inc.’s role as a model for others. —
• Professional Relations and Research for the education —
of healthcare workers, evaluation of the project, and development ofmedical expertise in the area of pain relief.34 Step five in the innovation-decision process is confirmation. “Confirmation occurs when an individual (or other decision-making unit) seeks reinforcement of an innovation-decision already made, but he or she may reverse this previous decision if exposed to conflicting messages about the innovation.”35 It should be noted that in the plan enumerated above, theimplementationplan has included, under the fifth
item, an ongoing evaluation. As hospice programs are implemented, there should be a communications infrastructure that allows for continuing appraisal ofthe success or failure of the program to achieve desired results. Dependent upon this evaluation is the ability to re-invent portions that are not producing desired outcomes or choosing to discontinue the innovation altogether. The hospice innovation-decision is a very complex process that is in many ways culturally bound to the community in which it occurs. The decision to adopt or not to adopt at the institutional level will have tremendous consequences for those involved. DuBois notes that, “Until the interests of the dying and their families are recognized as universal concerns that affect the last stage of all our lives and the quality of life in our society, we as a nation will continue to die miserable deaths. 36 Family-centered adoption: The five-stage process Even if a community decides to adopt the hospice concept, this does not guarantee the participation of the individual patient. Therefore, the second part of the diffusion of hospice as an alternative form of palliative care involves the innovation-decision process on the part of individuals. Gochman and Bonham provide valuable research into the individual adoption process.37 Several findings of their two complementary studies are worth noting here. First, knowledge of hospice as an alternative care philosophy for the terminally ill patient is most likely to come from friends and relatives, with physicians as another important source. Second, timing is crucial in the decision whether or not to adopt. Regardless of prior knowledge of available hospice services, families receiving, “no additional communication during the illness were about seven times less likely to report considering
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the use of hospice than families who received information both before and during the illness (10.53 percent vs. 68.64 percent).”38 Third, information received through interpersonal communication leads to higher levels of adoption (approximately 23-25 percent higher) than information impersonally received through media. Fourth, physicians assume important “gatekeeping” functions for the patient in regard to the decision to adopt. While 90 percent of respondent physicians were aware of hospice services, only slightly more than 50 percent of those physicians discussed the option with their terminally ill patients. Fifth, the decision to adopt is most likely to be made by the patient’s primary caregiver. From this information it is possible to draw a likely communication scenario of the individual innovationdecision process in those communities where hospice care has been established. Prior to the period of illness, the patient or family, either through mass media or interpersonal dialogue, has heard of the existence of the hospice organization. Once the patient has been diagnosed as being in the terminal stage of the illness, a crucial period occurs. When the physician has determined that rigorous treatment is no longer appropriate, and that palliative care is now appropriate, the type and source of communication about hospice becomes crucial. This period represents the window of opportunity in terms of getting to the patient and family (particularly the primary caregiver) information about hospice. In addition, effectivecommunication is essential in order to present the characteristics of hospice care that separate it from other types of available care. As noted above, interpersonal communication is likely to be the most effective communication channel for achieving a decision to adopt. Perhaps the most crucial question
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that has come out of Gochman and Bonham’s research is why physicians who are knowledgeable about the availability of hospice services do not
physicians who are knowledgeable about the availability ofhospice services do not communicate this information to approximately one-half of their patients. It has been widely recognized thatphysicians, sworn by oath to heal their patients, may find it extremely difficult to make the transition from intensive intervention to palliative care. communicate this information to approximately one-half of their patients. It has been widely recognized that physicians, sworn by oath to heal their patients, may find it extremely difficult to make the transition from intensive intervention to palliative care. DuBois’ case study of Strong Memorial Hospital contains information that illuminates this problem. Bradford Patterson,Associatedirector of the Cancer Center and practicing oncological surgeon, was instrumental in working toward the idea of a hospice after noticing that dying patients were not being treated in a manner that reflected their terminal condition. According to DuBois: “He admitted that this failing was the fault of physicians who could not orwould not accept death and whose treatment of the dying was, therefore, inappropriate.39
Patterson said: As it is, we all have widely varying techniques for handling terminally-ill patients, stating that it depends on thepatient, the family or family physician. Actually it depends most of all on the attitudes, personality and traditions of the physicians-in-charge. I suggest that we develop our own standards based on experience and thoughtful observation. These guidelines would help us to confront families, teach students, and live with our ethical and moral decisions.~ It may be that the increasing incidence of deaths due to AIDS has in some ways forced both physicians and private citizens to more directly confront the issues surrounding their own mortality. This is true in that AIDS is a contagious disease, whereas cancer (the most common terminal condition of hospice patients) is not. In addition, since AIDS has been portrayed as incurable, there is less of a personal sense of failure for the physician in diagnosing a terminally ill AIDS patient. Studying communication patterns between physicians and their AIDS patients may provide clues to understanding the dynamics of why physicians knowledgeable about hospice choose not to communicatesuch information to their patients. From a feminist perspective, research is needed into the differences in communicative patterns of male and female physicians regarding the availability of hospice services. Dr. Robert Fulton, Professor of Sociology at the University of Minnesota, made the observation that outstanding achievement awards in the area of dying have all gone to women. According to Fulton: “It has to do with a revolution in ethics, with the distinction between cognitive and gut feeling
29
response to life. More feeling, more concern, more empathy that is an integral part of the whole hospice message.”41 Accordingly, the Nobel Prize went to Mother Teresa for her work in Calcutta; the Tielhard de Chardin went to Elisabeth Kubler-Ross; and the Templeton Award went to Cicely Saunders. With the rise of interest in gender-related communication, it makes sense for feminist communication scholars to apply their theoretical knowledge and varying methodological approaches to an understanding of the communication process in the field of hospice diffusion and the delivery of health care services. Certainly much remains to be done in understanding why breakdowns occur in the communication of hospice information. It is not enough to have institutional adoption. Individual, family-centered adoption must be given equal attention. —
Consequences of the decision to adopt the hospice innovation What are the changes that occur in individuals and the larger socialsystem following the decision to adopt hospice? According to Rogers, very little research has been done to address this very important area, even though each, “innovation produces social and economicreactionsthat run throughout the social structure of the client system.”42 Additionally, what methodology is most appropriate for evaluating consequences? He suggests that qualitative research that focuses on anthropological techniques of participant-observation may be the most appropriate, rather than quantitative number-crunching.43 Certainly qualitative approaches provide the rich detail that is necessary to evaluate consequences within a contextual framework. This would seem to be particularly important when dealing with
a movement that has the goal of humane care and quality of life.
in contrast to the growing diffusion of hospice into rural communities, how can the hospice concept be successfully diffused into urban areas of the United States? ...
According to MacDonald, the four principal traditions that underlie the hospice tradition are: • The philosophy of humanism; • The ideology of liberalism; • The Judeo-Christian ethic of charity; • The culture of the middle class.~ These very particular cultural ideologies have important implications for the consequences that may arise from the adoption of hospice, and problems that may be confronted when these ideologies confront the ever-increasing diversity of cultural perspectives found within the United States and worldwide. As Rogers points out, our technologically-oriented society assumes a pro-innovation bias that equates change with “the good.” Unfortunately, even the most enlightened innovations (and hospice could certainly be considered that) contain certain assumed values that must be examined in light of the application of the innovation to a particular cultural context. While it is not within the scope of this study to fully explore this topic, it is a crucial area for future research. Specifically, hospice research should be focused in two areas. First, based on a predominantly white, middle-class philosophical world view, how does
hospice accommodate the ever-growing need to serve an ethnically diverse population? Second, in contrast to the growing diffusion of hospice into rural communities, how can the hospice concept be successfully diffused into urban, poverty-stricken areas of the United States? In Beresford’s article, “Innovative Volunteer Management,” he makes reference to the issue of cultural diversity from the standpoint of the changing nature of hospice’s crucial voluntary force: “Culturaldiversity and differences among us are an essential aspect of our history,” Silver says, but, “some agencies ‘kill off’ internal differences in an effort to maintain hannony and community.” Cultural differences may not be easy to discuss openly, but there can be enormous value in examining an agency’s attitudes toward diversity, and in drawing upon the diverse background of its people.45 Paradis recommends that, “social movement research,” should focus on the impact that changes in Medicaid and Medicare funding have on the changing demographics of hospice patient populations.46 Stoddard notes, “Many of our minority groups have brought with them strong traditions of family and community solidarity in the face of illness and death.”47 How these minority groups can be integrated successfully into a system composed of strong underlying, assumed, white, middle-class values needs extensive research. How can divergent cultural traditions in language, caregiving, and medically appropriate technology be successfully accommodated? Stoddard quotes a Brooklyn nurse as saying that hospice sometimes seems like, “the best kept secret in America.”48 It is unfortunately a secret kept more closely in inner city areas ...
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than in rural communities. According to Stoddard: Three million dollars in federal funds were provided recently in the Los Angeles area for a hospice building to serve 25 AIDS patients. That’s fine. But think what the same amount could do in a dozen storefronts or abandoned warehouses in downtown Los Angeles, New York, or Washington The place of darkness is now the inner city which has become the shadow side of the glitterin~y civilization our age has built.4 Research that explores how we can best diffuse hospice into the ghetto areas of the United States might also facilitate the attainment of an understanding regarding the potential fordiffusion of hospice internationally to Third World Nations. ...
Conclusion This study has attempted to explicate the crucial role that communication plays in the diffusion of hospice care for the terminally ill. While the concept of hospice is an ancient one, the modern hospice movement is a relatively recent phenomenon, with St. Christophers being established in England a short 25 years ago. Through the “re-innovation” work and opinion leadership of Cicely Saunders, the hospice concept has become an international movement, embracing most of the developed world. However, while the hospice concept proliferates in the United Kingdom, Canada, Japan, and the United States, much remains to be done. Stilluntouched are the developing and underdeveloped nations of the world. In Stoddard’s words, “In most of theworld today, there is no morphine to give people for extreme, chronic pain. And if there is morphine, or the equivalent, too oftenit is not given.”50 In addition, the inner city ghettos of our largest cities stand as islands isolated in large part from the
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benefits of humane treatment for the dying. While much illumination has been provided by the interdisciplinary research that has thus far been produced, there are many areas that remain open to more extensive exploration. Future research should address the following priority areas: • The physician’s role as gatekeeper in the innovation-decision process at the individual adoption level. • The impact of ethnic diversity on the hospice movement. • Studies involving theimpact of gender differences on the diffusion of hospice concept. • Research into the problems associated with establishing adequate palliative care both in urban ghetto areas and in Third World nations. By addressing these issues, the hospice movement may come closer to providing humane and enlightened care to larger segments of the world’s population.~
References 1. Paradis LF: Hospice handbook: A guide for managers and planners. Rockville, MD, Aspen Systems Corporation, 1985 2. Kamperidis L: Phioxenia and hospitality. Parabola; 15(4):4-13 3. Luke HM: The stranger within. Parabola; 15(4): 17-23 4. Earle W: The autobiographical consciousness. Chicago, Quadrangle Books, 1981 5. Rogers EM: Diffusion of innovations: Third edition. New York, The Free Press, 1983
6. ibid. 7. ibid. 8. ibid. 9. ibid. 10. Paull N: A conversation with Cicely Saunders. Hospice, Winter, 1990:14-16 11. op cit. Paradis LF 12. Buckingham RW: The complete hospice guide. New York, Harper & Row, 1983 13. op cit. Rogers EM
14. op cit. Paradis LF 15. op cit. Rogers EM 16. DuBoulay S: Cicely Saunders: Founder of the modern hospice movement. New York, Amaryffis Press, 1984 17. op cit. Paradis LF
18. ibid. 19. op cit. Rogers EM
20. ibid. 21. 22. 23. 24. 25.
op cit. op cit. op cit. op cit. O~cit.
Paradis LF Rogers EM Pardis LF Rogers EM Paradis LF
26. DuBois PM: The hospice way of death. New York, Human Sciences Press, 1980. 27. op cit. Rogers EM 28. op cit. DuBois PM 29. op cit. Rogers EM 30. op cit. DuBois PM 31, op cit. Rogers EM 32. op cit. DuBois PM 33. op cit. Rogers EM 34. op cit. DuBois PM 35. op cit. Rogers EM 36. op cit. DuBois PM 37. Gochman DS, Bonham OS: Physicians and the hospice decision: Awareness, discussion, reasons and satisfaction. The Hospice Journal;4:25-53. Also: The social structure of the hospice decision. The Hospice Jour-
nal;6:15-37 38. op cit. Gochman DS, Bonham OS, 1990 39. op cit. DuBois PM
40. ibid. 41. op cit. DuBoulay S 42. op cit. Rogers EM
43. ibid. 44. MacDonald D: Hospice, entropy, and the 1990s: Toward a hospice world view. Am J Hosp & Pal Care, July/August 1990:39-47 45. Beresford L: Innovative volunteer management. California Hospice
Report;1(8):l-15 46. Paradis LF: An assessment of sociology’s contributions to hospice: Priorities for future research. The Hospice Jour-
nal;4(3):57-7 1 47. Stoddard S: Hospice: Approaching the 21st Century. Am J Hosp & Pal Care, March/April 1990:27-30
48. ibid. 49. ibid. 50. ibid.
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