Coalition for Dialogue on Death and Dying

APPENDIX 1: METHODOLOGY

Data collection for this research was conducted through:

1. Personal Interviews of Dying Persons and their Loved Ones. These interviews were conducted in 1-1/2 hour to two-hour interviews of the dying persons and families with a skilled interviewer. A separate instrument for guiding the interviews was used for each group (see attachment 1a and 1b). These interviews were taped and then transcribed. This enabled the interviewer to tap into the perspectives, personal experiences and issues of the dying person as well as their loved ones.

2. Community Dialogues were utilized to reach out into the area-community to determine expectations, prevailing attitudes, and experiences of individuals and groups. The strategy of the community dialogues was to facilitate conversations on the issues of death and dying in work place settings, service clubs, churches, community organizations, and broad community meetings convened especially for this purpose. This form of qualitative research served to enable the facilitators to probe into the nature of the local culture(s) with response to death and dying and help to asses the current service system from the view point of the general public. Approximately fifty dialogues were conducted by one or two trained facilitators in 1-1/2 to 2 hour sessions with a range of diverse community groups (church groups, elderly, youth, grieving family members, unions, economically disadvantaged, associations, military personnel, school management personnel, and the like). The dialogues, also utilizing a guiding questionnaire instrument (see attachment 1c) were particularly successful in enabling the participants to comfortably share their experiences, concerns, and suggestions as to how the system "should" work.

3. Area-Wide Dialogues were held in two locations. The provider-focus groups and community dialogues were somewhat homogeneous. With a more heterogeneous group, participants for the area-wide dialogues were recruited from provider groups and a range of community members as well. This enabled the participants to explore their own view points as well as those of others which included teens, parents, service providers, practitioners, community groups, individuals from various socio-economic, professional, and personal backgrounds, and the like. These dialogues, involving over seventy participants, were held in two locations for the 2-1/2 hours, facilitated in groups of five to eight participants by eleven, two-person facilitating teams trained by the non-profit Round Table Center. In addition, a detailed Outcome Survey, entitled "What Does the Mid Coast Want?" was administered to the participants after the dialogue report-out (see attachment 1d). This survey was composed of seven issue areas of forty priorities in which participants were asked to identify their desired outcomes regarding priorities on death and dying in the community and ways to best to achieve the outcome.

4. Focus Groups with Providers. Carefully planned discussions were designed to obtain a selected group of providers’ perspectives regarding death and dying. As a form of qualitative research, the goal of these focus groups was to gather perceptions, information, experiences, and comprehension of death and dying in the Mid Coast area. An instrument (see attachment 1e) aimed at facilitating responses by a series of guided, open-ended questions was utilized. It was administered by one or two trained facilitators, to a range of providers (physicians, nurses, social workers, hospice staff and volunteers, bereavement counselors, clergy, police, EMS personnel, funeral home directors, etc.) from a large group of public and private care-giving organizations. Questions were also directed at their perceptions about how the system works and what is needed. Over 30 focus groups have been held thus far.

The Coalition adopted a distinct view that the community discussions were to be of an inclusive nature, that is: obtain as much information from as many distinct parts of the community. In this way, a more comprehensive view of the area-community would be achieved.

5. Organizational Analysis. Another instrument (see attachment 1f) was developed to obtain information about the system of delivery, that is the organizations in the area that have relevance to death and dying in the Mid Coast area. Over 50 organizations have actual or potential relevance, actual being defined as providing a distinct service (e.g., home health agencies, hospice, etc.) and potential as a means of support, referral, information, etc. (e.g., Coastal Economic Development which does not provide a service directly relevant to death and dying, but can serve as a client referral to a distinct service entity.)

Appendix 1a Guide: Interviews With Individuals Who are Dying.

1. When did you learn about your condition?
2. Who told you about your condition (and that you are dying)?
3. Tell me how that felt for you?
4. How did the rest of your family and friends learn of this? How did they respond?
5. How did the medical staff respond to you at the time?
6. Please tell me how you understand your condition today.
7. What are the most important things that concern you now?
8. Are there people that you can talk to about your concerns?
9. Do you find that you can talk to your family about your condition and about death and dying? Is that hard? How does that feel?
10. What kinds of help do you need now?
11. Who are the people or groups that you have found most helpful? What kinds of help do they provide?
12. What kinds of things that other people do are not helpful to you? What did you find least helpful?
13. Are there supports or assistance that you wish that you would like to have, but do not?
14. Tell me a little about how physicians have helped you or have not helped you deal with this situation? How about family? Clergy? Nursing staff? Friends? Neighbors?
15. If you had something you would like to change about this experience of dying that would make it better for other people, what would it be?

Appendix 1b Guide: Interviews With Family Members Who are Grieving

1. Please tell me about _______
2. When did you learn about his/her condition?
3. Who told you about his/her condition (and that s/he was dying)?
4. Tell me about how that felt for you.
5. How did the rest of your family and friends learn of this? How did they respond?
6. How did the medical staff respond at this time to you as family members?
7. What are the most important things that concerned you at the time that _______ was dying?
8. Were there people that you could talk to at that time about your concerns?
9. Did you find that you could talk to _______ about their condition and about death and dying? Was that hard? How did that feel?
10. What kinds of help did you need then?
11. Who are the people or groups that you found most helpful at that time?
12. What kinds of help did they provide?
13. What kinds of help were least useful? Who did you find least helpful?
14. Are there supports or assistance that you wish that you had, but did not?
15. Tell me a little about how physicians have helped you or have not helped you deal with this situation? How about family? Clergy? Nursing staff? Friends? Neighbors?
16. If you had something you would like to change about this experience of dying that would make it better for other people, what would it be?

In your experience with someone dying:

1. What was it like? Where did it happen?

2. What kinds of needs did they have, and were they met? And were they met?

3. What happened after the death?

4. What were the most difficult or negative aspects of the experience?

5. What do you feel best about the experience?

6. Who were the people or groups that were more supportive and helpful?

7. When you think of dying, what frightens you?

8. If you had something you would like to change about the experience of dying that would make it better for people, what would it be?

Appendix 1d Area-Wide Dialogue Outcome Survey

1. Dying persons and their families
2. Providers
3. Relationships between dying persons, loved ones, and providers
4. Institutions/Organizations
5. Economics
6. Community
7. Other

1. DYING PERSONS AND THEIR FAMILIES
1. Increase the control that people have over the treatments that they receive at the end of life.
2. Decrease the number of people who fear being a financial and emotional burden on their families.
3. Lower the number of people who die in pain and unnecessary suffering.
4. Increase the number of people who die in familiar surroundings, e.g. at home, with their loved ones.
5. Increase the number of people who plan for their end-of-life care.
6. Increase the opportunities of survivors to benefit from bereavement/grief support groups.
7. Decrease the isolation of both dying persons and their survivors.
8. Other:
2. PROVIDERS

9. Increase the professional training of all providers in the area of death and dying.
10. Decrease the barriers to medical providers in using pain management for the dying.
11. Increase providers' access/knowledge to the available services in the community.
12. Develop provider education programs regarding communications skills, cultural diversity, more meaningful responsiveness and practices to patient's / family's needs, and referral resources.
13. Increase accessibility to respite assistance for providers themselves within and without their organizations.

14. Other:

2. RELATIONSHIPS BETWEEN DYING PERSONS, LOVED ONES AND PROVIDERS

15. Increase the number of physicians who will initiate discussions about end-of-life planning.
16. Increase the acknowledgement of health care providers towards people's spiritual, social and psychological needs being met at the end of life.
17. Increase the ability of dying persons and their loved ones to discuss openly issues with medical staff, insurance personnel, clergy, and funeral personnel at the end of life.
18. Increase the ability of patients, families, and physicians to communicate openly and trustingly in health care at the end of life.
19. Other:

3. INSTITUTIONS / ORGANIZATIONS

20. Improve the process of continuity of care in the provision of services to dying persons.
21. Increase the belief and practice that patients / families wishes be respected by health care institutions and caregivers.
22. Decrease the technical language used in end of life planning issues.
23. Improve information and communication vehicles between delivery systems, service providers, and people in need.
24. Expand the number of Hospice-type options for people at the end of life.
25. Develop benchmarks, standards of care, quality and appropriateness of care at the end of life.
26. Other:

4. ECONOMICS

27. Develop innovative approaches to economic standards of care regarding reimbursements, follow-up, and counseling.
28. Increase the adequacy of insurance coverage so people have the supports they need to care for their loved ones at the end of life.
29. Increase the number of businesses who desire their health insurance plans to provide coverage for the dying.
30. Decrease the barriers of provider economics in providing care at the end of life.
31. Other:

5. COMMUNITY

32. Increase the conscious level of the public around end of life issues through community dialogues and other programs.
33. Increase the ability of schools, work, church groups, and community groups to actively participate in helping people discuss death as a natural process.
34. Develop, over the age continuum, community education programs about death, dying and bereavement.
35. Develop and implement additional grief and bereavement supports in the area's communities, work places, spiritual communities, and other community gathering places.
36. Increase funeral information and available options for individuals and families prior to the actual death of the person.
37. Raise the number of volunteers who can play a role in helping dying persons and their families.
38. Other:

7. OTHER:

39. Other:
40. Other:

Personal Priority Form

I would most like to see the following three outcomes in my community over the next few years:

First Priority Outcome: (Please use numbers from the outcome survey)

How best to achieve this outcome:

Second Priority Outcome: (Please use numbers from the outcome survey)

How best to achieve this outcome:

Third Priority Outcome: (Please use numbers from the outcome survey)

How best to achieve this outcome:

1. How do you think patients and family experience dying?

2. How do we meet the needs of patients and family?

3. What are your struggles or problems in your work with dying persons and their families?

4. What are your perceptions on how the system works or doesn’t work?

5. What is the relationship to other parts of the system?

6. What is your perception of the resources "out there?"

1. Does your organization currently offer programs which assist individuals and families/significant others with death, dying, and bereavement? If yes, what are they?

2. Are there other programs not designed to address death, dying, and bereavement, but have an impact? If yes, how?

3. What types of patients/clients does your organization serve?

4. How many patients/clients (unduplicated) are served by each of your organization’s programs?

5. How does your organization determine patient/client needs?

6. How and by whom are patients/clients referred to your organization?

7. How and to whom does your organization refer patients/clients?

8. Within each patient/client group, how many (%) of those are able to pay, have contract eligibility, unable to pay?

9. Are there significant numbers of patients/clients unable to receive services from your organization?

10. Has your organization targeted any new patient/client groups for services within the last five years?

11. Is your organization contemplating any new patient/client groups for services?

12. Are there any other organizations providing services to the same patient/client groups as your organization? If yes, in what ways?

13. With what organizations does your organization compete?

14. With what organizations/groups does your organization cooperate? If yes, in what ways?

15. What are the funding sources for your organization (public, private)?

16. What amounts (%) are received from each of the sources?

17. Are those funding sources earmarked to certain programs?

18. What are the key publics (e.g. funders, constituents, other organizations, etc.) and how are the relationships?

19. Does your organization use and work with volunteers?
If yes, how many and in what capacities?

20. Is your organization classified as private non-profit, private profit, public, other?

21. Does your organization receive any tax privileges?

22. Are there any regulatory or accrediting bodies that have an impact upon your organization?

23. Have there been any changes that have recently affected your organization and in what way?

24. What is your perception on how the system works/doesn’t work in the area of death, dying, and bereavement?

25. What would you like to see in these areas?

A Call To Action

Appendix 2

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