|
Coalition for Dialogue on Death and Dying
|
|
A Call To Action I. INTRODUCTION: CULTURE OF DYING 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. In late 1995 under the auspices of the Hospice of Midcoast Maine, a beginning group of 12 organizations came together to discuss the 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 received a $45,000 start-up grant and a second year grant of $70,000 from the Project on Death in America (PDIA). These grants enabled the Coalition to move from planning to a call for action. From this beginning group of 12, the Coalition Steering Committee has grown substantially to 36 very active members. The committee has brought a wide range of people and organizations to the table for the first time including, for example: Hospice of Midcoast Maine, Bowdoin College, University of Maine, University of New England, Mid Coast Health Services, Mid Coast Hospital, Parkview Hospital, Healthsource Maine, Martin’s Point Health Care, Community Health and Nursing Services (CHANS), Brunswick Naval Air Station, Blue Cross and Blue Shield of Maine, Brunswick Area Inter-Faith Council, Shoreline Community Mental Health Services, Coastal Economic Development, Merrymeeting AIDS, Maine Bioethics Network, Fishermen’s Wives’ Association, Maine Yankee, Bath Iron Works, Key Bank, L.L. Bean, Local 6 of International Association of Machinists, United Way of Mid Coast Maine, American Cancer Society, various professional groups, and caregivers (physicians, nurses, social workers, funeral home directors, etc.). An Advisory Committee was formed also to bring key area leadership into the Coalition from area hospitals, major employers, insurers, institutions and medical professions. The Advisory Committee provides strong support to the Coalition’s activities, in-kind support, and brings collective influence to achieving the Coalition’s goals in systematic change. In order to reach these goals, committees were formed to carry out the data collection, analysis, outreach and change activities of the Coalition. Two specific committees are of relevance here: 1) Surveys Committee: outreach and data gathering that includes interviews with dying persons and their families, provider focus groups and organizational analyses of relevant organizations; and 2) Community Dialogues Committee: conducting two-way conversations and outreach throughout the area communities. Over 100 persons have been involved in various committees and other activities of the Coalition. 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 change effort. This is a collaborative model for systematic change based upon joint/community problem solving, overcoming resistance to change, and finding the means and resources to strengthen and change the system. Data collection for this research was conducted through: personal interviews of dying persons and their loved ones, community dialogues, area-wide dialogues; focus groups of providers and organizational analysis of the organizations having relevance to death and dying in the Mid Coast area (see Appendix 1, Methodology). The study area for this report is Mid Coast Maine comprising fourteen communities (see Appendix 2, Demography). Statistics for place of death reflect that over the past three years, the area has experienced a decrease in deaths in hospitals, an increase in deaths at home, with the largest increase being found in intermediate care facilities (see Appendix 2, Demography, Figures 2 and 3). Consumer views, how dying persons, their families, and the general public perceive and experience death and dying in the Mid Coast area, are to be found in Parts 1, 2, and 3. Provider views are found in Parts 4 and 5. Part 6 is a discussion of findings and Part 7 is the appendix.
II. CONSUMER and provider VIEWS This section summarizes the views that emerged from five sources of Mid Coast residents:
Each of these sources articulate, in the participants' own language, a discussion of their opinions on issues surrounding death and dying in the Mid Coast region.
PART 1: DYING PERSONS AND THEIR LOVED ONES
One on one personal interviews were conducted with individuals who had been diagnosed with a terminal condition. Some were in remission, others actively dying. Interviews were also conducted with a family member who was currently caring for a dying individual; others shared their past experiences of caring for a loved one until the time of death. The interviewer was guided by a set of open ended questions designed to get individuals to talk about their experience (see Appendix 3). In reality, all that was needed was the opening prompt of "Tell me about how you first learned of your illness," and the story unfolded, often without the need for any further prompting by the interviewer. While the total number of interviews was small the discussions were candid and in depth, some interviews lasting over two hours. It should be noted that the majority of the interviews were conducted with hospice clients, which may bias the findings. As individuals talked about their experiences common themes emerged from their stories. While differing in depth or degree of concern for a particular individual or family all of the following themes were touched upon at some point by the interviewees.
Dying persons and their families do not know about resources for physical, emotional and spiritual care and how to access these services. When help was forthcoming it was often late in the dying process. One woman, the caretaker for her dying mother related:
Some type of general resource directory available to the community would have been helpful as a starting point for them. In addition there was consensus that health care and allied professionals should take a more active role in assisting individuals to find and initiate the use of resources. A family member stated:
People who are dying and their families see the doctor as the coordinator of care. A woman caring for her dying mother explained how she thought the process should unfold:
In the eyes of those depending on physicians, they believe that doctors should be aware of all resources and should initiate the process of making referrals and obtaining assistance. Once started, supports should then fall into place, and a team emerge that would help the individual and their family journey through this final stage of life.
Several patients commented that current health care is so focused on a cure that health care providers have difficulty recognizing the point at which it is no longer appropriate to "cure" but rather to "care," to comfort. This lack of recognition was thought to be due to a combination of a lack of basic educational preparation about end-of-life issues and a psychological or emotional inability to face death because to do so would be to admit to failure on the provider’s part. One woman with cancer stated:
Individuals also questioned whether or not practitioners recognize the degree of physical, emotional, and spiritual suffering that is occurring.
According to many individuals interviewed, our current health care system is incomprehensible to the individual and their family. It is a system that is cold, overwhelming and seemingly all controlling. A dying woman told the interviewer:
Another woman diagnosed with cancer relates:
Current staffing patterns in many of today’s health care facilities concern family members. They fear that their loved one will not receive quality care if institutionalization is required.
Individuals fear becoming a physical and financial burden to their families. An elderly dying woman said:
Others voiced similar thoughts and caregivers guiltily admitted to worrying about finances. One caregiver had given up a well paying job in another state to come home to care for her mother. When asked about the emotional toll of the dying experience most interviewees did not see this as a problem. All those interviewed who were involved from a hospice perspective viewed the emotional relationships that had developed as being largely positive and as growth experiences.
This quote captures the frustration and despair that often accompany the gradual debilitation and increased dependence on others in the dying process. The effect was especially noted by those who had led relatively independent lives.
Family members and dying individuals talked about feeling shut out by others. A daughter relates:
In the dying process the individual who is dying often becomes more introspective and less communicative with those around them. A husband told the interviewer:
A woman with end stage cancer shared what it feels like to be alone sometimes:
Despite loss of control and a sense of isolation many commented that some type of support developed through the experience of dying. Several talked of the support and strength gained from their spiritual faith:
Others talked of the support received from professionals:
Some utilized formal support groups and felt the process was helpful; others expressed that being in a group was restrictive. A young woman dying of cancer stated:
A young widow describes a different experience:
Repeatedly, the lack of support and the sense of isolation was attributed to a loss of meaningful communication.
On the other hand, dialogue was often initiated by a desire on the part of the dying individual to want to ease the emotional and spiritual suffering of their families as well as to help them physically prepare for the death and bereavement.
Individuals with end stage disease feared that their degree of suffering may not be fully comprehended and thus not relieved. The ability to meet the comfort needs of their loved ones was the over-riding concern of all the caregivers. Concerns about physical comfort and being able to spend meaningful time with each other was foremost on the list of concerns for dying individuals and their families. One patient told the interviewer:
A young widow talked about the last few months of her husband’s long struggle with cancer:
A husband/caregiver is grateful for the help he has received so that his promise to his wife will not be broken:
Systems problems and dealing with an illness can be overwhelming. Dying individuals and their families often feel powerless to change "the way it is." A daughter helping her father care for his dying wife at home commented:
A woman battling cancer stated:
The dying process can bring positive experiences, not just negative ones. Unfinished business was attended to, rifts were repaired, unspoken feelings revealed. As one young woman put it:
These interviews revealed foremost that individuals (and their loved ones) feared that they would not be allowed by "the system" to die comfortably and with dignity. As a group, the solutions they proposed were education and communication. Education of individuals and families as to resources and information to prepare for death physically, emotionally, and spiritually, is of utmost importance. In being prepared they felt the journey would be easier. Sensitivity to the potential for needless suffering of body, mind, and spirit and ways to provide adequate palliation for these discomforts can be achieved by education of and communication with health care providers, spiritual leaders, friends, and family. Communication is a vital part of education and preparation. It is also seen as a means of healing and comfort. The lesson learned is the need for compassion, support, empowerment and team work.
The utilization of community dialogues proved to be very valid, valuable, and insightful by providing participants both an opportunity to discuss as well as have a platform as to how they relate to issues at the end of life in Mid Coast Maine. During the dialogues, participants were asked to share their thoughts on issues associated with the end of life: how and where did death occur; what kinds of needs did dying persons and their survivors have and were they met; what were the most difficult aspects of the experience and what was best; who was or was not supportive; what is personally frightening about death; and what changes are need to better experience for people. Approximately 53 dialogues have been held thus far. Over 420 participants, an average of 7-8 per session, actively participated. A number of common themes emerged:
Throughout the community dialogues, a large number of participants expressed concern about the relationship between health care providers and the patient and loved ones. A Bath woman commented strongly on "the aloofness of the medical personnel, so factual, but no sense of feeling for what we were going through." Another woman commented that "I worried about what I was being or not being told. Physicians soft-pedaled the health problem … why?" A Brunswick middle-aged mom said the system and the practitioners "must build respect for the dying person so his/her wishes are recognized and done on their terms." The respect theme returned again and again, "increase the belief and practice that patients and families wishes be respected by health care institutions and care-givers." Further advice was in the area of what providers need regarding the handling of patients:
The relationship area also touched on competence. A number of participants believed that medical people are not sufficiently educated to provide needed care for dying patients. For instance in regard to pain, one participant noted "the providers have to get with it. What’s needed is the education of health professionals about pain management," and again, "educate all medical personnel and other care-givers like social workers, clergy, and the like about pain relief, working with the patient and family in an educational, open, communicative, caring way." In similar vein, a former educator said, "we need to do two things: increase the professional training of physicians, nurses, social workers, clergy, aides, and any other providers in the area of death and dying, and make it required and updates; and secondly develop provider education programs regarding communication skills, cultural diversity and referral sources in the community." Interestingly, sympathy was accorded to health providers as well. A participant’s comments echoed a number of others:
Additionally, police, nurses, and funeral home personnel were cited in a positive way for their caring and helpfulness. Simply stated by one participant on the sudden death of her husband, "thank God for the police and the funeral home person. They were so sensitive and seemed to anticipate my needs." Similarly, hospice nurses and volunteers were of strong support as seen by a large number of participants. One wife whose husband was dying commented with great feeling:
Being (or the fear of being) uninformed at a crucial time was a common theme. A daughter, whose father recently died, commented that "my father had to fight the doctor until he received an honest diagnosis of having five months to live." Again, a husband responded "some doctors and nurses really worked at keeping the family informed as to what was happening; some seemed too busy to care." Similarly, a middle-aged man whose wife was dying noted, "I felt out of the loop with the medical staff, didn't know who to turn to, nor who was in control." These types of commentaries were stated in varying ways, many participants said their needs were not met. A dying woman commented to her daughter that "my needs are not being met. I feel uninformed, without support, need relief -- but what's going on?" A son commented:
Contrast the above with the positive comments such as the middle-aged woman who stated, "the oncologist took a great deal of time to deal with my husband's concerns and discussed everything in an open manner with the family." Similarly, a daughter noted:
Thus, adequacy of information, presented in a user-friendly way, and supported with caring health care providers were the major elements cited in helping people deal with the end of life. The more these elements were present, the more positive the patient and their families felt about the difficult decisions they made.
They, the participants, do recognize the natural reluctance to talk about impending death and acknowledge their uncomfortableness with the subject. "My father died three years ago, and during his last six months we never talked about what was going on: he did not want to know, my mother did not want to know. Looking back, the doctor was really frustrated in trying to get them and the rest of us [family] to acknowledge the seriousness of my father's illness [cancer]." Similarly, a husband noted, "by the time my wife and I were really ready to listen to the medical staff, it was already too late." Time and again, the message arising from this research is that many people have a natural reluctance to talk about death, do not want to face the issue. However, most felt that once death was discussed openly and candidly, it was a great relief. Additionally, a large majority of respondents felt a major lack of information, at critical points in time, plus bewilderment about medical terminology.
Closely aligned to the inadequacy of communication and information during the dying process, is the need for support and informative sources in the community. This need was continually expressed by participants as they related their stories of the dying process and what happened after death. Isolation was cited as a major problem. Not only did they feel they were grieving alone and that people did not understand what they were going through, but they felt their social circles all but disappeared. A common feeling was expressed by a young widow: "families and friends were especially good at the beginning. However, down the line, around 6-12 months, I could have used more support but I did not know where to go." Similarly, a woman noted, "after the death, my friends stopped coming around -- I felt like I was the one who died." A teen-age boy said:
Another woman noted, "when my sister's husband was dying and for a while thereafter, my sister always fell behind and then, much later, she would find out that there were support services available." A Freeport man commented "that people cannot access care and bereavement services if they don't know where to go. Clergy and social workers are O.K. However, we need to education them, also, about what services are available in the community because I'm not sure they know. We need a services directory for everybody." Finally, a clergyman noted that community forums or meetings are necessary as a means of getting the word out that death and grieving are basic processes in living and people would not have to be alone.
The community dialogues, in particular found common comments on the importance of the community in caring for the dying and helping the survivors. One man commented: "I can see a real role for the community and community organizations. It can take the lead role in encouraging more bereavement groups, developing a link between patients and other service providers, bring organizations together to work cooperatively towards better care." A woman added, "let's bring churches, community groups, workplaces and other groups together to discuss death openly." "Community groups can help churches and schools cope when a parishioner or child dies," said a child advocate. "There is a need for continued consciousness-raising and I believe community dialogues are a great idea. The dialogues should be ongoing and involve all ages. We learn from each other and these [dialogues] are powerful ways to get the issue on the table," offered another participant. A young participant added, "we need information, we need training classes, we need to talk, and we need to know where to go. We also should learn about death in school, in all grades."
When people were asked what frightened them most about dying, the following themes were noted continually at every dialogue: — the fear of isolation and dying alone; — the fear of being out of it, not dying with dignity, having no control; — the fear of dying in pain; — the fear of being an economic and social burden on one's family. Most participants were in agreement that the "ideal" death would be at home, without pain, cognizant of what was going on, and surround by their loved ones. A common thought expressed by a 17-year-old made was "I cannot imagine anything worse than dying alone in a cold place without my family." The feeling of isolation was noted by a grieving daughter, "my mom had physical and spiritual needs, some hospital personnel were excellent but once the prognosis was known, my mom was isolated." Many participants talked about the dignity of death. Concerns were raised as to having lost control, being "hooked up to machines -- just living without knowing," as one participant said. The fear of loss of control was common to all age groups in the dialogues and as one person stated, "the way health care is today, is that we just keep prolonging without any hope, keep spending without any reason, and many of us die without any control for a ‘good’ death." Participants were concerned about dying in pain, in fact, pain control continually came up as one of the needs to be addressed by the health care system. A number of participants were indignant that the 'system' and its practitioners were not in agreement that pain management is a basic need. "I worry about pain -- why should I have to suffer needlessly when I know that pain can be managed," said a 60-year-old man.
Being an economic and social burden to one's loved ones was a major consideration for dialogue participants. Many expressed concern for the cost of care, and unnecessary care, falling on their families and at the same time reflecting concern that their families did not have to watch them deteriorate or have a loss of faculties. "I don't want to be a drain, money-wise or emotionally. I like my independence and I love my family and I don't want to put them in a tight spot," said a 55-year-old father of three. The economic aspect kept rising in comments regarding how to handle the costs of dying. A number of comments illustrate their economic fears: "I'm worried about health insurance -- is there dying insurance? There has to be a way to spread costs or have them covered." We need "a way to have people die without breaking the mint...." and "I would hate to be poor and dying, or have someone dying in my family. How would I pay for the process: would I have access to services and what about funeral costs?" Finally, a very recent widow commented that she was "worried about what happens now and not having enough money for a good send-off." The economic factor was especially cited by participants who are economically disadvantaged, union members, blue collar workers, and middle-aged white collar workers. However, this factor was raised in every dialogue regardless of gender or age. Dialogue participants also had suggestions for overcoming the economic barrier to good care at the end of life. Many suggested, as did this man, "what we need is a concerted push at analyzing end-of-life financing issues, look for incentives for providing adequate coverage on the part of insurance companies and providers." Another said, "it seems worthwhile to me, if somehow we could get the Feds, providers, businesses and consumer groups together, lock them in a room, don't let them out, until they figure ways to come up with equitable financing mechanisms."
The state of Maine requires hospitals to have instruments for advance directives available. Most dialogue participants acknowledge the seemingly pervasive resistance to talking about death as a determinant in why there is a lack of planning for death and the use of advance directives and living wills. A husband, in talking of his wife's death noted, for example, "despite knowing early that she was dying, we did not plan and we regret it so." Another participant commented that "my family did not talk about the present or future, and I felt so unprepared." Another stated that there was such a "lack of planning, [I] felt always trying to catch-up but didn't know what 'up' was." One participant in describing what frightens him about death shared, "I fear sudden death without an opportunity go 'get my house in order’." Another person's fear was that there would be "no respect for my living will or my wishes." On the other hand, a participant noted, "we were fortunate. When my father was dying, he, my mother, and the rest of our family sat down and discussed my father's wishes, his concerns about pain and being out of it. We came up with, respecting his wishes, a common-worded advance directive. I know my father was pleased and so were we." A number of persons, in discussing needed changes, commented "let everyone know and understand what a living will is ..." and "more discussion is needed to translate advance directives into something that anyone can understand and be comfortable with...."
Similar to participants’ concerns about consumer and provider relationships is the feeling of a large majority of participants that the health care system does not enhance the care of dying people nor is supportive of families. Continually, participants discussed the need for system change, continuity and integration of services, and patient and family needs being the starting point in care. "It seems simple to me," said one man, "the whole system should be based upon the patient: medical, psychological, social, whatever. Instead, it starts with affordability, the need to keep me alive no matter what -- strict adherence to the medical practices."
"It seems to me that we need to overcome barriers to service by finding a way to integrate them in a holistic way," stated a woman who was a retired nurse. One man pleaded for a system that "somehow coordinates care between personnel, health care teams and different settings and, importantly, involves the patient in all decisions...." Most participants indicated a preference for dying at home with families and friends as opposed to dying in a hospital or nursing home. A large number of participants believed that hospices, and a hospice-philosophy should be more integrated into the health care system. "My husband and I seem to have had a great deal of experience with death in the last ten years. We both feel that our relatives or friends that died had warmer and caring experience in being in a hospice program. Everyone was able to take part, the load was shared, and the services were all about caring for the patient and the family. It's the only way to go," said a 70-year-old woman. A man stated, "I wish we could all get together to promote the hospice philosophy and encourage insurance and other players to extend hospice coverage." Finally, a young woman noted:
The community dialogues were a major success. In most instances, the dialogues offered the participants their very first opportunity to discuss, and express their concerns, experiences and recommendations for change. Each group recommended follow-up dialogues as being very important to the community.
The purpose of the area-wide dialogues was to provide a process for gathering information and ideas from a heterogeneous community population about how death and grief affects all of us. In each community meeting, a select group drawn from health care providers, business, government, education, social service, clergy, civic organizations, and people with economic and age diversity joined to discuss these issues. A collaboration was established with The Roundtable Center, a non-profit organization that exists to create community through dialogue and aid in the process of democratic and civic renewal. The Center trains facilitators in the use of study circles, small-group democracies in action, that provide a non-adversarial method for collaborative education, empowerment, and problem-solving through discovering and building upon common ground. Twenty-two facilitators were trained in two distinct 3-1/2 hour sessions by the Center; during the dialogues, there were eleven pairs, one acting as facilitator, the other as a scribe. The majority of those trained have facilitated other groups, such as hospice, but all felt the training was very beneficial, and enjoyed the process.
On November 4 and 5, 1997, two area-wide community dialogues were held on Brunswick and Bath, Maine, respectively. There were over seventy participants in groups of five to eight persons in each study circle. The study circle questions used to elicit discussion within each group were:
Following the study circle dialogues, the groups reported findings back to the whole population present, and then completed an outcome survey that was distributed to all participants, including facilitators, at the end of each dialogue. In the survey, respondents were asked to rank 40 items, categorized into six issue areas (See Attachment 1d). First, they were to rank each within the six categories. Second, they completed a personal priority form, listing their first, second, and third choice from all 40 items (or any they chose to add to the list) and explained how best to achieve their selected outcome. The six issue areas on the survey are: A) Dying Persons and Their Families; B) Providers; C) Relationships Between Dying Persons, Loved Ones, and Providers; D) Institutions/Organizations; E) Economics; F) Community. Extraordinarily rich exchanges were the result of these dialogues, where incredible interchanges of experiences, ideas, culture, beliefs, and recommendations resulted. The heterogeneity of the group, particularly intergenerational, varied occupational backgrounds, and socio-economic variances, were the most stimulating for participants. One facilitator observed that there was "a good flow and interaction of participants with wide backgrounds". Many groups had an interest in continuing the dialogue, even though one night was the extent of the Coalition’s requested commitment from participants, as expressed by one participant: "Feel that this one session was very successful in opening up discussion, but that follow-up sessions are important to reach a deeper level." Findings from the area-wide dialogues somewhat mirrored the findings from the interviews with dying persons and their loved ones, community dialogues, and focus groups. Dying persons and their families are by far the greatest concern to the respondents of the survey; economics of dying (amongst this group), the least. Based on data both from the actual dialogues and the outcome survey, the following are the most important issues identified by this group:
A theme that emerged throughout the dialogues was the desire to increase the control people have over the treatments they receive at the end of life and the need to decrease the number of people who die in pain and unnecessary suffering. Not only were participants concerned about this area for their loved ones, it was also one of the greatest fears expressed about their own deaths. As one participant explained, "I want to control my death as I do my life". A story about a physician dying in a western state as a result of a stroke and being kept alive for a time by his doctor despite his wishes not to, was not an uncommon one. Over and over again, the Coalition has heard people address the need for decisions about their health care to be in their own hands. "The importance of taking responsibility to make decisions, and having them be honored," as one community member stated, is a critical message. One participant explained, "empowerment of consumers" is critical for a positive death and dying experience. Suggestions on how to achieve control and decrease pain, include: Develop an informed medical community; increase insurance coverage making more options affordable/available; increase understanding; educate people over the decisions they do have control over; training and education of health care providers; eliminate barriers to help receive adequate support and pain medication; education of providers and family; advocacy and empowerment of individuals and family; increase research in pain control medications and train all doctors; medical training.
Communication and trust within the health care system are themes that have appeared throughout the work of the Coalition, and certainly during the dialogues. A substantial level of fear surrounds the concept that one’s individual or family member’s wishes will not be fulfilled at the end of life. "We need to somehow address the underlying issue of mistrust that pervades our culture ... leads to bad care and disregard of wishes ..." expressed one participant. Some found the exchanges to be educational, as one explained that he is now "more aware that the medical profession is still less responsive than I thought." There is also a strong perception that the "medical profession is not ready to buy in on terminal patients dying at home," a wish of many of the people with whom we have spoken. As one community member stated, "hospitals are not where we want to die." A health care provider offered that "it is the dying persons and their families that is most important ... we all end up the dying person or their loved ones and family. How do we want to be treated?" Another dialogue participant observed that "...at times, even trained professionals don’t know what to say." It was expressed that there is a "need for better respect for patient wishes," such as with the experience of someone who shared that when one of her loved ones was dying there was "intimidation to have a test done that was not wanted." Perhaps the following comment sums up this concern the most eloquently: "I hope that some day a group effort will be made by doctors, nurses, and all caregivers to listen directly to patients and let them participate more in their own care and treatments to bring a more human experience to death and dying." Ideas of how to achieve this include dialogues and round tables; education and community programs; time to talk; teaching providers about communication; taking care of the providers’ needs to allow them to help others; rearranging focus from documents and money to service; mediation style advocacy; having hospice and other groups work along with doctors and hospitals.
Participants clearly felt that to increase the control individuals have when dying, decrease pain management, and increase communication, health care providers need to get professional training. This item, although separate in the discussion and the survey tool, really appears to be a means to an end. Comments included "medical professionals are not able to handle death and dying adequately" to the question of "where do doctors and other medical people get their support?" It is also apparent that the training is needed for professionals not only in health related fields: "We need to educate medical providers, clergy, funeral directors, institutions, and organizations," offered one participant. Although many people referred to professional training in relation to #1 above, participants felt it important in many areas of death and dying, including awareness, grief, and the "naturalness" of the process. More information on community organizations follows in the next area. Ideas concerning implementing the training include having hospice do national trainings for health care providers; finding money to do training; including death and dying education in medical school curriculum; in-house training in hospitals and houses of worship. Perhaps one respondent summed it up the most succinctly by suggesting that "seminars/workshops should be given for all providers - mandatory - and paid for by employers."
Again, areas of importance tend to overlap. A topic that received significant attention during the dialogues was the need to increase the ability of schools, work, church groups, and community groups to actively participate in helping people discuss death as natural process. There is a strong need to "educate within community as well as health care professionals" suggested a participant. One community member shared that the dialogue gave a "greater awareness of how little the community relates to the subject of death, dying, and bereavement," and another agreed that "community support is important whether it’s through their church, job, or neighborhood." Several individuals commented on the importance of community grieving.
"More public awareness ... especially in our school systems and places of employment is needed," expressed one individual, and many agreed that public awareness is a key component. Another participant, in discussing the work of the Coalition, stated "awareness is being raised - training needs to happen and be implemented." One of the strongest messages that came out of these dialogues was the tremendous necessity for schools to be able to respond to the needs of its students. During the sessions, there was good representation from the teen population, particularly individuals who had personally experienced death of a loved one in the recent past. The most moving, and perhaps most educational, conversations took place around the needs of these younger members of society. As one group member expressed, the conversations "gave me an increased awareness of the needs of young people in schools." It became apparent that many schools do not have the ability to appropriately respond to the needs of their students: "Schools seem ill-equipped to deal with death and grief..." A common vision is that "the subject of death and dying will become a part of the educational life process in future schooling." One participant even went as far as to suggest that the "Department of Education should mandate teaching death and dying at appropriate levels - health educators could do community-wide education." As was pointed out by a school administrator, one challenge is that adding extra curriculum items is difficult with full plates, but perhaps with planning this hurdle could be overcome. Indeed, another community member stated that "schools need to be supportive and educate themselves on grieving and death." Ways to achieve this item include having churches and other groups facilitating meetings such as the dialogue held tonight; giving hospice and grieving centers federal and state funding; education from the base level of community; mandating education within schools.
Another concern people have is the adequacy of insurance coverage and access so people have the supports they need to care for their loved ones at the end of life. Although there may be appropriate care available, it may not be accessible due to lack of coverage and/or access. Nationally, this subject has received considerable attention over the last several years, and this group falls within the national trend. A statement was made that "people need to feel they are not a burden economically for their families." This was a fear that many participants expressed during the dialogues. One participant blended this issue with the one of trust; "...families don’t access care because they mistrust the system or fear losing insurance benefits." As one individual stated, access includes "marketing and educating the community about services available for patients and families." Many participants were surprised to learn of certain resources available in the Mid Coast region. Ways to accomplish this ranged from frustration - "haven’t a clue"; "blow insurance companies up"; to more active ideas such as lobbying and influencing legislation; consumer advocacy; national health coverage.
Isolation is a fear and reality in which participants in all of the Coalition’s efforts share concerns. During the area-wide dialogue, one person said it "helped to focus on an important concept - isolation of the dying person and their families and how to help identify this phenomenon." People get physically isolated; as one participant observed, "not everyone can get to a bereavement group..." But it also goes deeper: "People often feel isolated with their feelings about death - discounted as children, left out because family won’t talk, etc."
Suggestions for change here include community education; more dialogues and public talking; training of providers; increasing acknowledgment of people’s spiritual, social, and psychological needs. It was clear that people felt the study circle dialogues were a safe format that helped them feel less isolated and alone in their concerns, fears, thoughts, and experiences. "There was a great exchange of thoughts and ideas," expressed one participant; "I liked the personal approach - telling our stories," shared another. And a comment we should all take to heart: "Death itself is not the enemy; it can be quite beautiful." pART 4: Focus Groups of Providers
Focus groups are small homogeneous groups of health care and support practitioners gathered to discuss death and dying. These groups include clergy, doctors, nurses, service groups, grief groups, and hospice volunteers. Each group was facilitated by trained facilitators, and utilized a focus group instrument (see Appendix 1e). Each group has a unique perspective on the dying process. Doctors are trying to prevent death and may not always have the best knowledge of their patient’s needs. Nurses must administer care but are often caught between the needs of the patient and family, and the demands of doctors and administrators. Service groups seem to work well with the people who attend, but they need to expand their scope to include more people. The clergy and funeral home directors are often very important to the patient and family, but are left out of the "care team" by medical professionals. These differences in perspective provide a wide view of the system, and when viewed together show places where the system can be improved. When these perspectives are placed next to community dialogue results and interview results, the reader will see quite clearly when and how the system works, and when and how the system fails. This review of the focus groups is based on excerpts of group discussions.
Empowering individuals to take seriously their roles as consumers of care at the end of life provided material for considerable discussion. Opinions varied from feeling more emphasis and decision making should be placed in the hands of the consumer, to the more traditional opinion that medical consumers want the medical professional to take care of them, decide what is best, and provide that care. There was much discussion about how "medical" dying has become--and the burden and responsibility that this places on our medical community.
There was sentiment among participants that death had become a medical event and was no longer part of everyday life. Instead, the dying are moved to hospitals and nursing homes and cared for by teams of competent professionals using the latest and greatest that modern medicine provides. Mention was made of the natural childbirth/home childbirth movement which brought about great change in the way people experience birth; perhaps a similar "revolution" is needed to change the way people experience death. Some expressed the feeling that families only want the best for their loved ones, and currently perceive that "the best" care is provided by trained professionals. This contrasts with the way people died a century ago, at home in the care of family.
Those with experience in caring for the dying at home, found that given education and support, most families are quite capable of providing care and in fact relish the private, home environment they are able to provide their loved ones.
Areas of conflict over who made medical and other end of life decisions were common. Many medical professionals voiced support for a more informed and empowered consumer, but doubted that this could actually be accomplished.
Communication was of utmost importance. Most participants expressed the need for more help with communication. The challenge of dealing with difficult families was discussed many times.
Many participants voiced concerns about knowing (or not knowing) how to talk with people about death and dying issues. From difficulty initiating conversations about funerals and advanced directives, to actually giving someone "bad news". Most focus group participants feel we need to talk more openly about these things, but are uncertain about how to begin.
This legislated Medicare regulation has gone a long way toward "normalizing" discussions about end of life decision making. There has, however, been some confusion about what a living will, an advance directive, a will, and a power of attorney are, and how they differ.
A lack of sensitivity to cultural differences was noted during several of the focus groups. The Mid Coast community encompasses several different ethnic groups, especially French Canadian and Russian. It is common to find households where English is not the primary language, and in fact, some households where English is not spoken. Many cultures approach death and dying from different perspectives. The different traditions and practices should be accepted and encouraged -- but they must first be known by those who provide the care.
Another universal theme was the need for more education on the topic of death and dying. Many professional participants (nurses, doctors, clergy) voiced dissatisfaction with the amount of education on death and dying they received in their various training programs. A group of nurses aides trained to provide hospice care felt that additional education in boundaries would be useful to all.
It is difficult for professionals to determine "When is enough ... enough?"
Many expressed uncertainty about knowing when and how treatment is stopped. There was a fairly clear consensus that the decision making rested with the physician--by some this was seen as positive, by others as negative. This speaks to the need for more education and open discussion. Similarly, participants also voiced a need for support for those doing the work.
Opinions varied on the availability and need for support. However, it was clear that most professionals working with the dying looked to their coworkers for informal support.
While many providers express a need for more support, they don’t seem to avail themselves of support that is offered.
Overcoming the impulse of professional caregivers to put the needs of others ahead of their own has always been a challenge. Alternative approaches to providing support and improving utilization must be explored.
The need for public education was frequently discussed. There were suggestions for a clearing house for referral and resource information, to more specific written information or classes on what happens to people as they die, and how to talk to the doctor--what questions should be asked. The need for information and education extended past the time of death to include the bereavement period. In addition to informing people about grief and bereavement, information for the public on what is and is not helpful to someone grieving was advocated.
People spoke of needing ready access to simple, straight forward information. Some thought a guide or advocate to help the dying person and family navigate the "system" was the best option. Discussion also focused on how scattered and overwhelming resources can be, especially for those coping with catastrophic illness. Caregivers; i.e. hospice volunteers, ICU and medical/surgical nurses, clergy, etc. are not totally aware of the resources "out there," and expressed a need for networking between agencies. Frustrations were aired about lack of knowledge about the resources available and the difficulty tapping in to them.
Services for the poor were targeted by a local home-health agency as being less than impressive.
Many issues of turf came up during the focus groups. Physicians feeling threatened, nurses feeling like they were not allowed to make suggestions, volunteers feeling undervalued, clergy feeling excluded from hospital decision making. Many participants fell back to looking at communication in general, while others felt it was up to patients and families to be more involved in determining care decisions. Someone pointed out that nurses and doctors are trained separately and then expected to work together effectively. This illuminates the need for education geared at all team members -- not just certain sectors. The goal being those educated together would then be able to work effectively together.
Medical professionals need to work together to meet the needs of the patient and family. Too often bureaucratic rules and "turf issues" get in the way of optimal patient care. Breaking through this culture will be difficult, but flexibility and team building seem to be at the heart.
Insurance companies are not an obvious source of support. However, they can, and often do provide certain support. They can also create conflict, confusion and worry. Coverage can be confusing, costs high, and they may not advocate for the patient. Hospice is a benefit not always covered, and long term care for Alzheimer’s and Parkinson’s is questionable.
Not only is hospice care not covered under Medicaid, the state of Maine Insurance Commission does not require that hospice care be a covered service (as in some other states). Many private insurance companies have lifetime caps for hospice care of $2,000-$3,000--money that is quickly eroded on medications and equipment. Furthermore, the length of time it takes to hear about whether or not a Medicaid application is accepted can be longer than the patients life expectancy.
Everyone expressed concern about the skyrocketing cost of care and the ease with which technology was used. There was consensus that health care costs must be controlled and the use of invasive, "high tech" care reconsidered.
The transient nature of our society, and the fact that many people live removed from family and friends, triggered concern. While the Mid Coast area has many established social support structures, many people "from away" come and go without taping into local groups. Concern about how these individuals experience death and dying was voiced.
According to the Maine Funeral Directors Association, most Americans have their first experience with death at age 35. This remarkable statistic illustrates the point that people do not learn about death and coping with death while growing up. Instead, individuals are faced with learning new coping skills as adults. Many provider participants voiced concern about how people cope not only with death and dying, but with grief and bereavement. More education and normalization of the grief and bereavement process was encouraged. It became clear that family members with unresolved issues have the hardest time dealing with grief and guilt. These are also the ones least likely to agree to carry out living wills and advance directives. If there is unfinished business between family and friends of the dying, this obstructs the dying process. Families grieve differently depending upon the situation of the death. When there is an opportunity for closure (the patient was terminal for some time) and the families knew and understood the prognosis, grieving for the most part was not excessive and was copeable. However when the death was unexpected, especially of a young person, grieving was considerably stronger and the families and friends less able to come to grips with the situation. Geographic distances also create problems for closure. Family members and friends who are unable to visit the dying person before death have a harder time with guilt and grief than those who are able to see the patient before death. Grief support groups provide a safe place to cry, vent and talk. All too often, the only people willing to talk about grief and death are those who have had similar experiences. A common question asked of people suffering from grief or terminal illness is "how are you doing?". Unfortunately, the answer most people are looking for is "I’m fine," or "OK" . People do not want to know about the problems associated with death. It’s almost as if acknowledging the problem, or listening to another persons problems of grief or dying will bring the listener closer to their own mortality or unresolved issues of grief. This is a cultural problem and should be addressed on a cultural level, preferably starting with children in schools and churches. Though support groups seem to be very effective, and professionals acknowledge they are a valuable source of support for families after a death, the problem seems to be that most people will not avail themselves of this resource.
Children and their grief is something not generally handled very well by schools, though some schools do this better than others.
A common theme in the discussion groups centered around grief and bereavement. Participants wanted more information on what to expect when someone died (what is grief like). Most felt unprepared for the feelings associated with the loss of a loved one. In addition, participants voiced concern over how society copes with those left behind--avoiding the subject of the person who had died, etc. A pretty clear consensus emerged that individuals with spiritual support of some kind were able to cope with the experiences of death and dying in a more positive fashion. Those with a faith in a life after death seem to be accepting of death and are more peaceful. Those without faith seem to struggle. For those with faith, it plays an important role. Most people of faith have a built in support structure which applies itself to them when needed -- the church. There was a real sense of openness on the part of the providers in the focus groups. Most commented that it was rare to discuss death and dying in a focus group setting and it was very rewarding. The participants encouraged continuation of the practice and recommended initiating multidisciplinary provider and provider-consumer focus groups.
pART 5: Organizational Analyses There is a range of organizations that provide direct or indirect services around death, dying, and bereavement in the Mid Coast area. Varying methods were utilized to elicit information: a one to one-and-a half hour survey (see Instrument, appendix 1f) was administered by the Coordinator with the key organizational operating officer; an informal-structured discussion; and other means of communication (e-mail, telephone, materials exchange, etc.) Very early in the Coalition’s work, it became quite apparent that there was a need to identify/describe existing programs/services specifically related to the needs of dying persons and their loved ones. This array can be viewed as the operating system of care-giving organizations. Despite respondents’ general view that the system is not working or needs help, the concept of a non-system is not valid here. But the reality of a system, carrying a special caring role(s) for services at the end of life, needing to work better is valid and every respondent so agreed. There are 25 Mid Coast organizations that can be depicted as providing direct services to dying persons and their loved ones, in addition to two area hospitals, Mid Coast Hospital and Health Services, and Parkview Hospital. The provided services can be divided into topic areas of service. Some of these organizations serve more than one topic area. There are 13 organizations which provide indirect services to dying persons and their families in the form of referrals, financial assistance, food, nutrition, and volunteer services, and seven organizations which provide senior services. In addition, there are seven nursing homes in the area and nine funeral homes. Appendix 3 depicts the array of Mid Coast services and further classifies the organizations as to auspice: private, private-non-profit, and public. The major sources of financial support are: Medicare and Medicaid, private insurance, and in the case of private organizations, fees for service. Non-profits for the most part have a sliding fee-for-service scale based upon one’s income. Public finding (i.e. Medicare) is the major source of funding followed closely by insurance. Many of the non-profits depend upon public funding, insurance, municipal funding, private sources in addition to fees, such as United Way, fund-raisers, donations, memberships and the like. In the case of some non-profits, a purchase of service contract with another provider (funder) is in place. This section represents the information obtained from the survey, analysis, and perceptions of the participants. Four key areas are delineated:
These problems related to issues of integration, continuity of resources, access to services, and lack of joint planning. All of the respondents acknowledge that the system of care, as such, had many good features, but that the system was not functioning as well as it should. Each commented, to the effect, that there was a pressing need to work towards an organizational capacity to perform.
Data from the survey, supported by interviewee comments, indicated the need both to integrate services and develop continuity of services more fully. Many of the organizations were operating in fairly strict autonomous units with minimal contacts to other units, both internal and external to their own organizations. Services are now provided by a range of independent organizations. The result is that dying persons and their loved ones as well as service providers often find it difficult in finding and securing resources needed. The concept of area-wide integration of services, respecting autonomy, was viewed as a way to improve the service delivery system. The consensus of thought was that a shared system, of serving dying persons that would produce increased joint efforts, promote more effective and efficient service, prevent slippage, and reduce costs, was a desired goal. A number of organizational representatives acknowledged potential "turf" issues but expressed hope that some integration of services was a strong possibility. Continuity of services was looked upon as complementary to integration. The data reflected a problem in the ability to assure relevant services at each point of need: from activation of life-threatening illness, to treatment, to acknowledgement of impending death, to the need for support for both dying persons and loved ones and in follow-up. In many instances, services were in place but not fully activated. The participants, for the most part, were in favor of developing a better mechanism(s) for not only patient/family flow through organizations of care, but developing better mechanisms for shared continuity between organizations depending upon patient’s/family’s needs. Lastly, there was a need for improving the follow-up process in services.
Coordination of resources is present but is not fully functioning, according to the respondents. Positive examples are organizations’ use of interdisciplinary teams that work toward a comprehensive program of service delivery. These examples are dependent upon knowledge of resources, consensual shared responses to patients’ needs and accountability. However, the majority of respondents do not have, nor feel, that coordination is fully present. They, as a group, viewed the coordination of services, medical and supportive (i.e.: medical, institutional, home health, bereavement and care-givers support, mental health, and the like) as needing improvement because of the complex nature of the system. Coordination also should include spiritual support, education, transportation, nutrition, and survivor supports. Of note, is the interest of the respondents to take a re-look at present formal working agreements or formalizing present agreements and developing inter- and intra-organizational goals along with joint organizational meetings. This was looked upon as a step to providing improved integrated, continuous, and coordinated services and resources. In fact, a number of organizations suggested the concept of centralized point for exchanging information, assessments, referrals and conferences. As such, a potential shared information system that would assist organizations to maintain data, assist in case management, and serve as a database for program development, monitoring and evaluation, even policy change – was seen as very desirable.
Access was universally held to be a problem, due to geography, transportation, entitlements and financial issues, organizational protocols for admission, consumer perceptions and lack of knowledge, and the like. Each of the organizations mentioned one or more of these access problems. Most felt that such problems could be somewhat resolved but consumer education and financial issues would take a great deal of time and effort.
The analysis revealed few examples of joint inter-organizational or comprehensive planning. The majority of organizations engaged in some form of strategic planning. The participants noted that they could identify their competition (if any), their present cooperative problems, and who they referred clients to and, in turn, who referred to them. But, the large majority could not identify, nor did they believe there were any examples of joint organizational planning regarding end of life issues. All agree that joint planning initiatives were becoming increasingly a priority for organizations but had a concern for the time involved.
Again, each organization was able to identify who it referred to and whom it referred, presently. Potential referral publics had not been addressed. The participants noted the lack of knowledge and information about referral publics. Each expressed surprise at the number, type, and services offered in the Mid Coast region. Common expressions were: "I didn’t know that organization did that....", "my perception was that they did not handle that kind of case...", "we have always referred to (organization) but I was not aware of their other services." On the other hand, the respondents were in agreement that "the organizations really do not know what we do" This lack of knowledge/information was pervasive among the participants. Of note, all agreed that a local guide to resources was not only necessary for dying persons and their loved ones, but also for the organizations in the system. Further, the majority favored a means to set up a system to exchange information about resources and centralized referral process. Smaller organizations and larger organizations felt their organizations would benefit from this exchange and, further, that it would breakdown barriers to service that were based upon lack of knowledge or perceived as against actual facts regarding services. Even when the referral system was formally in place, it was not being used properly because of perceptions. For example, some organizations had reduced their referrals to the community mental health agency because of perceptions of long waiting lists and eligibility and financial constraints. The agency itself indicated that they are experiencing an increased demand for services, that financial constraints due to state policies was a basic fact and that there was a need for referral groups to re-visit such problems. The need for nurturing the referral process is clearly evident. The participants, as a group, viewed re-visiting and re-energizing the referral system as very important. Both top leadership and line staff needs to have new and updated sources of information and acquire a deeper knowledge of existing services. A last point is the need for an adequate follow-up and joint accountability system once the patient was referred. The present system was felt to be lacking in this area.
Organizational leadership unanimously agreed that there is a basic need for education initiatives for both consumers and providers. In sum, their services led them to note that actual or potential consumers of end of life resources were at a distinct disadvantage by not knowing their rights, the responsibilities of providers, the medical problem itself, who is responsible, where the resources are, or how then can be accessed. They called for increasing community education programs, increasing and continuing community dialogues, acknowledging their own responsibilities to respond. They believe the community education approach, coupled with an information and referral system, would enable patients and families to be more aware and thus more able to maximize the benefits of the system. Similarly, such approaches would enable providers to become more aware of the array of services. But the organizations stated the pressing need is for provider education regarding updating of skills and knowledge around caring for dying patients. Providers are viewed as including: physicians, nurses, social workers, administrative staff, clergy, EMT personnel, supportive staff, and community support staff such as police and fire personnel. Most commented that many providers did not have a basic grounding in compassionate care for dying persons and their loved ones.
A majority of the organizational respondents believed that current financing mechanisms impeded end of life care and supportive services. They believed that what service is provided is related to what is fundable and thus influences the ability of their organizations to render more comprehensive care. Such mechanisms may limit interdisciplinary care and may well work against service continuity and integrated systems of care. As such, all of the respondents called for exploring new models of financing care at the end of life and stated that this activity be conducted at national, state, and local levels. Some respondents believed that financing mechanisms impeded or limited nursing home and home health programs by inadequacy in the levels of payment for physicians’ visits. Respondents also noted that the Medicare hospice benefit was a step in the right direction to increase hospice access. However, the financing policy is such that it is based on the premise that the patient must be certified as having a life expectancy of six months. The respondents noted that this may work fairly well with some cancer patients, but it is much more difficult to have a six month expectation with other illnesses (i.e. heart disease or Parkinson’s). The respondents further commented on insufficient funding for bereavement and grief supportive services nor alternative medical care. These services are not financed by public funding but are covered by some means such as purchase of service agreements, United Way funding and/or other charitable giving. State financing mechanisms are of concern to the respondents in two areas: cuts in state funding for outpatient mental health services thereby affecting counseling and therapeutic services for dying persons and their families; and the lack of Medicaid coverage for hospice care. Further, potential funding or state funding is of concern as well. Municipal funding has seemingly plateaued as well as other funding sources, which may eventually impede the ability to provide services. Finally, a large number of respondents expressed concern that increasing managed care will have a major effect on what services are covered, and how much care is offered. The organizational representatives welcomed the opportunity to discuss issues surrounding death, dying, and bereavement in the Mid Coast. They noted the system had already-existing strengths but acknowledged that the system was not functioning as well as it should. They believed that their organizations needed to work together in developing positive change.
This study has produced the first look at Mid Coast residents’ perceptions and experiences regarding end of life care. In analyzing the data, a number of points emerged from the five sources:
A number of seeming paradoxes or issues emerged as well. Consumers and providers both continually cited the need to talk about dying, to be educated about the process, and to overcome the lack of knowledge about end of life resources in the Mid Coast region. While acknowledging the need to talk about death, share feelings and not be isolated, the fact is that people still have the inability to talk and share feelings and they feel and are isolated in death. This may be a cultural and personal phenomenon. Mainers do have a strong sense of independence, individuality, and privacy. Further, there is a strong sense of not talking about problems because of a desire to not be perceived as being weak and also not wishing to be a burden to others. In regard to the need for more education about and use of resources, providers cite the fact that in many instances, the information is available and there seems to be an underutilization of resources. An example is the lack of participation in of a number of bereavement, grief, and respite services. This may also be attributed to the culture and personal preference and the feeling that asking for help is a weakness. It may also be attributed to not wishing to be a burden, and in some instances a belief that talking will not help and that such groups are only for those who cannot cope adequately. It may also reflect that such services are more effective for some individuals but not preferred by others. Additionally, providers and consumers will not avail themselves of services, such as hospice, until late in the process. This may be due to both the dying person’s and the health care practitioner’s personal belief in not giving up. On the dying person’s part, this may be due to inadequate knowledge about the severity of the illness, and/or a personal unwillingness or avoidance to the face the fact of dying. On the providers part, the unwillingness to give up, is often based upon the fear of failure. The end result is that referral to appropriate resources is late or not at all. In both the public and providers’ view the physician plays the gatekeeper role: the coordinator and initiator of the process of care, making referrals and obtaining assistance. Medical care practitioners will voice an uncomfortability with this perception. The majority cited that it may be too much to expect at present, citing their own lack of education regarding death and dying, lack of knowledge of resources, demanding workloads, and the feeling that they do not do a good as job as they wish. Finally, both the general public and providers expressed concern over the ever-increasing cost of end of life care. However, how to deal with this concern was very problematic. At this point in time, it does seem that the system does not seem to value such services and it indicates that there are no rewards or incentives as yet, to pay for such services.
IV. RECOMMENDATIONS: A CALL TO ACTION This section is, in fact, a "Call to Action" to bring the area-community, general public, consumers, providers, and care-giving organizations together to mutually work on a series of actions to improve end of life experiences and the system. It is a call for involvement at all levels in the Mid Coast to act in concert on a comprehensive approach. It is a proposal for a collaborative effort based upon joint community problem solving, overcoming barriers and resistance to positive change, and finding the means and resources to strengthen and change the system. Building upon already existing assets, opportunities for change efforts can be identified and pursued. Further, it is based upon a focusing of the change effort on two areas: the target system – those individuals, groups, organizations or communities, that need to be changed in order to achieve the objectives of the change effort; and the action system – those individuals, groups, organizations, and communities, that participate in the change effort. Often, there is an overlap between the two. On the basis of this study, the Coalition recommends the formation of five action task forces: Task Force One Patient and Family Empowerment Task Force Two: Health Care Organizations Task Force Three: Providers Task Force Four: Economic Of Care Task Force Five: Community Each of these task forces is derived from the findings of this study. Each task force is charged with realizing a series of opportunities that have been identified in the study. This task force relates to patients’ and families’ lack of knowledge, information, communication with providers, options and feelings of isolation, fear regarding death and dying. The charge of this task force is to realize the following opportunities:
Recommendations for task force involvement: Patients/families, hospitals, HMOs, home health agencies, hospices, clinics, bereavement support groups, advocates, nursing homes, AIDS groups, mental health agencies, senior programs, insurance companies, employers, employees, providers, (e.g. physicians, nurses, social workers, clergy, attorneys, funeral home personnel, schools, etc.), general public. This task force relates to health care providers responsibilities regarding developing, maintaining, and improving "user-friendly" systems regarding death, dying and bereavement. The charge of this task force is to realize the following opportunities:
Recommendations for task force involvement: Patients/families, general public, hospitals, home health agencies, hospices, nursing homes, providers. This task force relates to health care providers’ responsibilities regarding patient/family and other providers. The charge of this Task Force is to realize the following opportunities:
Recommendations for task force involvement: Patients/families, general public, providers, educators, colleges/universities, administrators. This task force relates to the cost of care and how and what is available to consumers. The charge of this Task Force is to realize the following opportunities:
Recommendations for task force involvement: General public, legislators, insurance companies, health care organizations, providers, employers, employees, municipalities.
Task Force Five: The Community This Task Force relates to the community and its responsibilities toward death, dying, and bereavement. The charge of this Task Force is to realize the following opportunities:
Recommendations for task force involvement: Patients/families, general public, schools, colleges/universities, places of worship, United Ways, community action agencies, social agencies, senior programs, health care organizations, places of employment, employers, employees, service clubs, municipalities, legislators, advocates. See Appendix 4 for a delineation of recommendations for task force involvement. V. Appendices |