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Coalition for Dialogue on Death and Dying
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A CALL TO ACTION A REPORT TO THE COMMUNITY ON LIFE EXECUTIVE SUMMARY INTRODUCTION Today, more and more people are enduring prolonged deaths due to chronic and progressive diseases and are overwhelmed by isolation, physical pain, unmet emotional, psychological and spiritual needs, financial burdens, family stress, and pervasive lack of information regarding accessible and personally acceptable services. Death is inevitable but much of American culture strongly denies death until it occurs and then immediately moves to forget it once it has happened. A "conspiracy of silence" gets in the way of what should be the natural process of death, dying, and bereavement. Funded for the past two years by The Project on Death in America (PDIA), the Coalition for Dialogue on Death and Dying has been exploring cultural issues, barriers, and organizational capabilities that surround death and dying in the Mid Coast region with a view towards positive change. The goals of the Coalition are to:
The Coalition is composed of: a Steering Committee of 35 very active members representing a range of concerned citizens and organizations; an Advisory Committee of key area leadership; and over 100 persons involved in various committees and other Coalition activities. The very inclusive nature of the Coalition enables it to bring to the table the general community as well as key leadership in the region that can most make a collaborative change effort. This report represents the Coalition’s study findings and recommendations for positive change.
METHODOLOGY Data collection for this research was obtained from a series of sources. In order to elicit consumer views on how dying persons, families, and the general public perceive and experience death and dying in the region, the Coalition conducted sensitive, personal interviews of dying persons and their loved ones; community dialogues; and area-wide dialogues. In order to elicit provider viewpoints, the Coalition conducted provider focus groups and organizational analyses of relevant organizations. Over 700 individuals participated in the process with approximately another 1800-2000 persons reached by other discussion vehicles, meetings, presentations and the like.
THE FINDINGS Throughout the process, major consistencies emerged between the views of consumers and providers and these can be grouped into five primary categories:
1. Patient and Family Empowerment "Actual or potential consumers of end of life resources were at a distinct disadvantage by not knowing their rights, the responsibility of providers, the medical problem itself, who is responsible, where the resources are, or how they can be accessed." Patients, families, providers, and the general public expressed major concern in the relationships between providers and patients/families, citing a major breakdown in communication. Patients felt that they did not know what was happening, were not obtaining "understandable" information, felt socially isolated and expressed fears of dying alone, dying in pain, and being an economic and social burden on one’s family. Both consumers and providers continually noted a lack of knowledge about support and informative sources in the community. Lack of personal planning was cited by both providers and consumers, as well.
2. Health Care Organizations "It seems simple to me, the whole system should be based upon the patient: medical, psychological, social, whatever." The analysis of relevant organizations, and consumer and provider commentaries were in concert regarding system problems. Participants noted the many good features of the system but acknowledge that the system was not functioning as well as it should. Frequently cited were problems of integration and resource continuity, barriers to access for services, and a lack of joint, inter-organizational planning. Many felt that a shared system of serving dying persons would promote more effective and efficient services, prevent "losing" a patient in the system, and reduce costs. Continuity of relevant services need to be assured at each point of need and coordination of medical, supportive, professional, and community services was highly desired. Barriers to access of services, due to geography, transportation, entitlements, admission protocols, and perceptions need to be addressed. Providers and consumers also cited the need for better referral systems and more inter-organizational planning and service implementation.
3. Providers "We’ve been working since the turn of the century to make death a medical problem. We’ve got a lot of undoing . . . to make death a natural part of life again. Our society has medicalized death to the point where it is not a natural event – it’s an option. . . . Part of why we don’t know how to deal with it anymore is we have taken it away from being a family and community event – we’ve made it a medical event and removed [the dying] to the sterile confines of a different place such as a hospital." Both consumers and providers frequently commented upon the dilemmas facing providers: consumer empowerment, lack of meaningful communication between providers and consumers, lack of meaningful communication between the providers themselves, lack of professional education regarding death and dying, lack of knowledge about other resources in the community, and increasing demands coupled with lack of professional supports. Most providers believed in consumer empowerment, but many had doubts as to whether it could be accomplished. Communication breakdown was seen as a function of both uninformed consumers and inability of the provider. The area of interdisciplinary-professional, communication was seen as a major deterrent to good service. Most practitioners believed that breaking through the cultures of medical professionals will be difficult and cited the need for more team building. A large number of providers voiced dissatisfaction with the amount of education that they received in their professional training programs. The majority of providers expressed a major lack of knowledge regarding the health and supportive services that were available and, as a result, felt that they were not providing continuity of services to patients and families. Both consumers and providers were concerned that providers were under stressful demands (e.g. increase in patients, managed care, etc.), and that adequate support systems were not available/accessible to them in their needs. Further, many believed that alternative approaches to providing support and utilization must be explored.
4. Economics of Care "I’m worried about health insurance – is there dying insurance? There has to be a way to spread costs or have then covered. We need a way to have people die without breaking the mint." Consumers overwhelmingly commented upon the fear of being an economic burden to their families. They worried about the increasing cost of care and unnecessary care. Over and over, consumers voiced concern for the adequacy and access of the supports needed to care for their loved ones at the end of life. Providers were in agreement in noting that lack of coverage and the high cost of care were distinct barriers to care. A majority of the organizational respondents actually felt that current financing mechanisms impeded end of life care and supportive services (e.g. limiting payment for physicians’ visits in nursing homes, insufficient funding for bereavement and grief supportive services, and alternative medical care). A majority of all respondents called for exploring new methods for financing care at the end of life and looking for incentives for providing adequate coverage on the part of insurance companies and providers.
5. The Community "There is help out there, but we don’t know about it or how to access it". Both consumers and providers strongly cited the need for an emerging community role regarding death, dying, and bereavement in the region. Participants believed that the community can be effective in dealing with cultural barriers, fears of the death process, social isolation, lack of knowledge and information, faulty referrals, perceived and actual lack of supports, and the need for an integrated, continuous system. In the dialogues especially, the need to increase the ability of schools, workplaces, church groups, and other groups to actively participate in helping people discuss death as a natural process, was strongly advocated. The community was seen as the place to build public awareness, to inform, to provide a safe place to express their concerns and receive support, to develop means of delivering adequate communication and information, and to bring organizations together to work cooperatively towards better care. The community was looked upon as the nucleus towards developing a compact on palliative care supported by all organizations and as a means of centralizing certain aspects of service (i.e. information, training, conscious-raising, forums/symposia, etc.)
CALL TO ACTION On the basis of this study, the Coalition issues a call to action for area-community (general public, consumers, providers, care-giving and community organizations, employers and employees,) to mutually work together on a series of actions to improve end of life experiences and the system of care in the region. It is a call for involvement at all levels in the Mid Coast to act in concert on a comprehensive approach. Building upon already existing assets, opportunities for change efforts can be identified and pursued. Accordingly, the Coalition calls for the formation of five ACTION TASK FORCES, each of which is charged with realizing a series of opportunities: Task Force One: Patient and Family Empowerment The charge of this task force is to realize the following opportunities:
Task Force Two: Health Care Organizations The charge of this task force is to realize the following opportunities:
Task Force Three: Providers The charge of this Task Force is to realize the following opportunities:
Task Force Four: Economics of Care The charge of this Task Force is to realize the following opportunities:
Task Force Five: The Community The charge of this Task Force is to realize the following opportunities:
This "Call for Action" is a collaborative method for systemic change based upon joint/community problem solving, overcoming resistance to positive change, building upon strengths, and mutually finding the means, resources, and the will to strengthen and change the system.
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