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Using a Trade-Show Format to Educate the Public About Death and Survey Public Knowledge and Needs About Issues Surrounding Death and Dying
52
Journal of Pain and Symptom Management
Vol. 21 No. 1 January 2001
Original Article
Using a Trade-Show Format to Educate the Public About Death and Survey Public Knowledge and Needs About Issues Surrounding Death and Dying Romayne Gallagher MD, CCFP Division of Palliative Care, Department of Family Practice, University of British Columbia, and University of British Columbia Hospital, Vancouver, British Columbia, Canada
Abstract A public education event on death and dying, based on the design of a commercial trade show, was held to raise the profile of palliative care in the community. Attendees answered a questionnaire designed to assess their knowledge on issues about dying and their anticipated needs if they were to face a terminal illness. Healthcare providers knew significantly more about dying, but there were persistent misconceptions that morphine shortens life, causes addiction, and develops tolerance. The questionnaire revealed confusion about treatment choices available to patients and euthanasia. The anticipated needs questions revealed that increasing age leads to less concern about physical needs, and independence/control. Further public forums on death and dying will be held with attention to education on the identified issues and inclusion of wider education and cultural groups. J Pain Symptom Manage 2001;21:52–58. © U.S. Cancer Pain Relief Committee, 2001. Key words Palliative care, public education, morphine myths, euthanasia
Introduction Our society works hard to deny death. While medical technology has saved many from death due to acute illnesses such as myocardial infarction, it has increased the numbers living with chronic disease. To some extent, this same technology has led our society to believe that death is avoidable. In the last 90 years, life expectancy at birth has increased, but life expectancy at age 60 has changed little.1 However, the culture of death has changed dramatically over that same period. Death now occurs Address reprint requests to: Romayne Gallagher, MD, 5804 Fairview Avenue, Vancouver, BC, V6T 1Z3, Canada. Accepted for publication: February 22, 2000. © U.S. Cancer Pain Relief Committee, 2001 Published by Elsevier, New York, New York
mostly in hospitals, where it can be hidden from day to day life.2 Most people are unaware of what a funeral director does and what happens to bodies after death. Death is seen as an unnatural process and no longer a part of life. With the advent of palliative care, there is a movement to bring death closer to home in both the physical and psychological sense. However, education about palliative care is still lacking in medical and other healthcare professional training,3 and has not significantly reached the general public. A literature search turned up only one report of a public forum on care for the terminally ill—this occurred in the United States in 1985.4 The Division of Palliative Care at the University of British Columbia has a goal of increas0885-3924/01/$–see front matter PII S0885-3924(00)00244-X
Vol. 21 No. 1 January 2001
Trade-Show Format to Educate and Survey the Public
ing public education about death and dying, and raising the profile of palliative care in our community. To accomplish this, the Division held a public forum to promote palliative care and to discuss issues around death and dying. By informing and involving the public, the Division hopes to raise the public’s awareness of what services are available to them and make them better consumers and advocates for improved access and standards of palliative care. As part of the forum, a questionnaire was developed to assess public knowledge and needs about death and dying issues.
Methods The design of the public forum was based on commercial trade shows where both presentations and display booths are featured. A series of oral presentations were given on subjects including what palliative care is, advanced directives, dying at home, and community palliative care services. There was an “audience participation theater event,” during which the audience proposed situations that were then acted out by other audience members. Despite the two-hour duration, there was attention and involvement from the entire audience. At another time, a physician and family member discussed the biological changes of dying. Interspersed with factual information on the changes were the daughter’s comments on how she felt and coped with these changes as she witnessed her mother dying. A chaplain from our children’s hospital spoke of discussing death with children and a grief counselor discussed normal grief reactions and supportive services available in the community. Organizations and businesses pertaining to death and dying displayed information and services at booths set up in large rooms separate from the oral presentations. Funeral service providers, hospice and palliative care organizations, palliative care units, bereavement foundations, legal services, and a bookstore were among those participating. Therapeutic touch was demonstrated and relaxation and guided imagery tapes were available. The bookseller featured books and tapes about death, dying, and caregiving. The non-profit groups were charged a display fee of $100 and the forprofit businesses were charged a fee ranging from 10% of profits up to $500, depending on what they could afford.
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The forum was held at a downtown conference center on a Friday evening and all day Saturday. Community newspapers and radio stations advertised the event and event posters were displayed in hospices, churches, and hospitals. Depending on the level of sponsorship, the company or organization’s name and logo were featured in the printed advertising. Solicited donations from sponsors covered the cost of the forum. Funeral service providers, hospitals, regional health authorities, and pharmaceutical companies were the largest donors. Admission to the forum was by donation so that no one was excluded from attending. The average donation for admission was approximately $5. The small amount of money left after expenses has been set aside to establish a fund for palliative care research. Each attendee was asked to answer the knowledge and needs questionnaire as he or she entered the forum. They were requested to complete the questionnaire prior to entering the oral presentations or viewing the booths. Volunteers were present to ensure that the form was completed and returned prior to the attendee entering the forum. The first part, entitled “Your Experience with Dying and our Healthcare System” consisted of a set of 16 statements to be rated as strongly agree, agree, disagree, strongly disagree and don’t know. The statements were prefaced with the caution that “some statements are true and some are common myths.” Some of the statements were derived from a previous questionnaire administered to health care professionals5 and others were based on common issues that arose in the author’s palliative care practice. The second part was a needs assessment that was prefaced by the question “If you had a terminal illness how important would the following issues be to you?” Seventeen items derived from the experience of a palliative care nurse, physician, and chaplain were listed. The needs could be grouped into issues of physical needs, control and independence, and relationships and beliefs. Each statement could be rated as very important, important, neutral, and not important. The third and final section of the questionnaire recorded information on the age, gender, ethnicity, religion, education, occupation, and previous death experience of the attendee. Finally the attendee was asked how they heard about the forum and why they had come. Or-
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ganizers of the conference were excluded from answering the questionnaire. Frequency tables were prepared for each of the demographic variables and for each individual Likert scale “knowledge” and “needs” item. The “knowledge” and “needs” items were summarized by computing the mean and standard deviation of each item. In order to compare different groups of attendees, a “knowledge score” was developed for the first part of the questionnaire that assessed knowledge about death and dying. The author assigned a “correct” answer to each question, and the respondent was given one point for each “correct” answer. A total knowledge score was computed by summing the number of correct responses among the knowledge items. The total scores were then compared among the different groups answering the questionnaire. The second section of the questionnaire, looking at perceived needs, was analyzed by grouping the statements into issues of physical needs, control and independence, and relationships and beliefs. Those collections of needs were then compared among the different groups attending the forum. Three “importance” scales—Physical Needs, Control/Independence, Relationship/Beliefs—were also computed as the mean of the items comprising each scale. One-way analysis of variance was used to assess the effects of the demographic variables on the derived scale scores, and on selected individual items.
Results A total of 144 participants completed the questionnaire. The audience was 88% Caucasian of European origin, with a mean age of 51.7 years. The range in ages was 21 to 84, with the median age being 51. There were 71% females and 29% males. Almost 50% of the attendees were Christian, with the next largest group (29%) claiming no religion. The education level of the attendees was high, with 83% having post-secondary education. Fifty-eight percent of those coming to the forum did not work in the health care field. Of the 42% that were healthcare workers, the largest group was “other” at 38%. Most of these people were volunteers, many of them from hospices and palliative care units. Of the remaining healthcare workers, 26% were nurses, and 14% were phy-
Gallagher
Vol. 21 No. 1 January 2001
sicians. Thirty-eight percent of all the attendees had experienced a death in the last five years and 24% in the last year. Only 4% had never experienced a death. Thirty-six percent of people came to the forum because they work in this field, either as their occupation or as volunteers. Thirty percent came because of a past death experience. Six percent came because they have a life-threatening illness and 16% came because someone close to them was dying. Newspapers were the most effective media in bringing the forum to the attendee’s attention. However, word of mouth was surprisingly effective, as 25% of those attending heard about the forum by that route. The percentage answers to the statements about death and dying, sorted from least agreement to most agreement, are in Table 1. There was strong agreement on statements about the right to expect pain relief as a treatment goal, uncontrolled pain as an urgent medical situation, home care being as good as hospital care, pain perception being affected by many issues, and a terminal illness offering a chance to grow as a person. However, over 40% of attendees believed that morphine shortens life, 42% disagreed that opioids posed a low addiction risk, and more than 25% felt that early use of pain medication would render it ineffective later in the disease. More than 25% of attendees felt that the dying had little control over their treatment. Forty-seven percent believed that euthanasia included withholding life-sustaining treatment. More than 25% felt that it was common for terminally ill people to want to end their own life. There was no clear agreement over the question of whether people who ask to have their life ended were experiencing uncontrolled suffering. The “don’t know” category was generally less than 10% of the total number of answers for most questions. However, for the questions about opioids (morphine shortens life, addiction risk of opioids, loss of effectiveness over time) 24.3%, 16.7%, and 25.7% of attendees marked “don’t know” as their answer. Of the “don’t know” groups, there were 44%, 42%, and 35%, respectively, of healthcare workers who did not know the answers to the questions about morphine. Almost 15% of attendees didn’t know if it was illegal to refuse treatment and approximately 14% didn’t know if the terminally ill often want to end their own life. The
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Table 1 Your Experience with Dying and Our Healthcare System Questions People who are dying have little control over or choice in their treatment. When using narcotics such as morphine for relieving pain, the risk of becoming addicted to the pain medication is extremely low. Euthanasia involves withholding life-sustaining treatments such as life support machines. Almost all pain can be relieved by medication and other therapies It is illegal to refuse treatment if you have a life-threatening illness. People who ask to have their life ended often have uncontrolled physical symptoms or psychological suffering. Strong pain relievers should not be used to control pain early in the disease as the effectiveness of the medication will wear off and there will be poor pain control later on. Morphine doses sufficient to relieve pain may shorten the life of the person or contribute to their death. The person who is dying wants to know everything about their disease and what is going to happen to them. It is common for people with a terminal illness to want to end their own life. All people who are dying experience pain. Palliative care in the home (planned dying in your own home) provides equally good care as in the hospital. Uncontrolled pain is an urgent medical situation. For some people, their terminal illness offered them a chance to improve relationships and grow as a person. The perception of pain by a person is affected by emotional, cultural, spiritual, and social issues that the person faces. Patients and family members have a right to expect pain relief as an important goal of treatment.
“don’t know” categories were split equally between healthcare and non-healthcare attendees. Comparison of the total knowledge scores between groups of attendees showed a significant difference in age, with the older groups having a lower score (Table 2). There was a significant increase in the knowledge score if the attendee worked in the health care field. Those were the only significant differences. Surprisingly, education or past death experience did not seem to have any effect on the knowledge score. The statements that proved to be most difficult for the attendees were further analyzed in an attempt to understand any variables that might lead to the misperceptions. In the question suggesting that morphine shortens life, the only significant difference between the groups was that health care workers, more than all other groups, answered that morphine did not significantly shorten life. The same was also true for the question suggesting that early use of morphine leads to ineffective pain control later, in that healthcare workers strongly
Strongly Agree
Agree
Disagree
Strongly Disagree
8.00%
18.20%
39.40%
34.30%
3
0.92
18.60%
39.00%
32.20%
10.20%
2.34
0.9
6.10% 12.70% 5.70%
41.20% 47.00% 9.80%
32.10% 28.40% 38.50%
20.60% 11.90% 45.90%
2.67 2.4 3.25
0.87 0.86 0.86
20.80%
50.80%
20.00%
8.30%
2.16
0.85
3.80%
25.50%
42.50%
28.30%
2.95
0.83
3.70%
42.10%
35.50%
18.70%
2.69
0.82
14.90%
42.50%
36.60%
6.00%
2.34
0.8
4.10% 4.60%
22.80% 12.30%
55.30% 60.80%
17.90% 22.30%
2.87 3.01
0.75 0.73
31.30% 61.20%
54.20% 33.80%
12.20% 4.30%
2.30% 0.70%
1.85 1.45
0.71 0.62
36.20%
58.00%
5.10%
0.70%
1.7
0.6
50.70%
45.70%
3.60%
0.00%
1.53
0.57
57.20%
41.30%
0.70%
0.70%
1.45
0.55
Mean
SD
disagreed. However, those people who had a previous death experience also disagreed in significantly greater numbers than other groups. The statement made about low risk of addiction with narcotics was significantly endorsed not only by health care workers but also by older attendees. Health care workers were the only group that felt that dying people had control over their treatment. In the statement proposing that it was illegal to refuse treatment, health care workers rejected this statement significantly more than other groups. However, First Nation groups and older attendees accepted this statement significantly more than other groups. Those who had death experience and healthcare workers rejected the statement that euthanasia involves withholding life-sustaining treatment significantly more than other groups. Only healthcare workers rejected the idea that the terminally ill commonly want to end their own life. The answers to the last statement about those who are suicidal having uncontrolled physical or psychological suffering showed no significant difference among the groups.
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Gallagher
Table 2 Knowledge Scores Analyzed by Characteristics of Attendees Variable Age (F ⫽ 4.12, P ⫽ .0035) Under 40 40–49 50–59 60–69 70⫹ Gender (F ⫽ 619, P ⫽ .014) Female Male Gender/Healthcare (F ⫽ 6.28, P ⫽ .0005) Female/Not Healthcare Female/Healthcare Male/Not Healthcare Male/Healthcare Ethnicity (F ⫽ 1.39, P ⫽ .25) Asian First Nations Indo-Pakistani White European Religion (F ⫽ 2.14, P ⫽ .064) Buddhist Christian Jewish Moslem Other None Education (F ⫽ 2.01, P ⫽ .14) Less than high school High School College/University/Post-Secondary Work in Healthcare? (F ⫽ 15.44, P ⫽ .0001) Yes No Type of Healthcare Work (F ⫽ 1.39, P ⫽. 24) Nurse Physician Pharmacist Spiritual care Social work Physio/OT Other Experienced Death of Loved One? (F ⫽ .43, P ⫽ .73) Never In last year In last five years In distant past
Cases Mean
SD
26 33 36 23 26
5.58 6.61 5.5 4.01 3.88
2.55 3.3 2.94 2.31 3.43
100 40
5.64 3.32 4.26 2.19
47 53 33 7
4.62 6.55 3.97 5.43
2.81 3.49 1.86 3.26
11 4 1 125
4.73 3.5 10 5.33
2.53 1.29 0 3.11
7 70 8 1 14 41
7.29 4.73 4.63 6 7 5.56
2.81 2.79 1.99 0 3.21 3.49
4 20 119
4.5 2.89 4.05 3.12 5.5 3.08
83 61
6.37 3.44 4.42 2.53
15 8 1 4 5 3 22
6.13 8.63 4 4.75 5.8 9.33 5.64
3.91 4.03 0 2.63 2.59 3.05 3.08
6 35 54 48
5.67 5 5.59 5
3.72 3.01 3.32 2.9
The importance rating of anticipated needs in a terminal illness are listed in Table 3. Analysis of the rating of needs among different groups of attendees found that increasing age resulted in a lower importance rating of physical needs. Control and independence issues were also significantly less important with age. Women attendees rated control and independence issues as significantly more important
Vol. 21 No. 1 January 2001
than men. No other significant differences were found between the groups. A comments box at the exit of the forum yielded suggestions for future topics, including different funeral traditions and near death experiences. The presentation commented on most positively was “Dying is a Natural Process,” in which a physician and a patient’s daughter interwove the biological changes of dying with the story of her mother’s death.
Discussion Although the forum attendee demographics did not match the average demographics of the Vancouver population, they were similar to other “health fairs” in that most of the attendees were female and older.5 Another study of health fair demographics revealed that attendees perceived themselves as having greater internal control of their health and reported more behaviors consistent with health responsibility when compared to a community comparison group.6 It would be interesting to compare attendees of a death and dying forum to attendees of health fairs to see if their attitudes differed with respect to perception of control over their own health and their attitudes towards health responsibility. As expected, those with a health care occupation had a greater overall knowledge about death and dying. Occupations within the healthcare field did not seem to make any difference. This contrasts with Furstenberg et al.,7 who showed nurses to be the most knowledgeable. However, the numbers within the different health care professions in this study were quite small and cannot be statistically analyzed. Another predictable difference was that there was a significant increase in knowledge among younger age groups. This may indicate a trend that old myths and fears around dying, pain management, and opioids are gradually receding. However, there was an interesting exception to this, in that the oldest age group of seventy plus believed, significantly more than any younger group, that addiction as a result of morphine was a low risk. It was surprising that there was no significant difference in the knowledge score with education level. However, only 16% of the attendees had less than a post-secondary education and likely do not represent an adequate sample of
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Trade-Show Format to Educate and Survey the Public
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Table 3 Anticipated Needs in a Terminal Illness Statements Physical Issues Control of pain. Control of symptoms such as nausea, vomiting, constipation. Being alert and comfortable enough to talk with family and friends. Control and Independence Issues Being able to walk, feed and dress yourself for as long as possible. Having your financial affairs in order before you die. Knowing everything about your disease. Discussing each treatment with your doctor or nurse. Being able to plan your own funeral arrangements before you die. Being able to die in your own home. Not being dependent on family members to provide your day-to-day care. Having family members that provide your day-to-day care. Having a doctor who is willing to participate in physician assisted suicide. Relationship Issues Being able to talk about spiritual issues with friends, family and caregivers. Having a family doctor who has known you over a number of years. Having the same home care nurse throughout your illness. Having healthcare providers who will participate in resolving family issues. Having caregivers that share your religious beliefs.
those with high school education or less. Future public forums should have more media coverage and perhaps involvement of celebrities who may attract people with all levels of education. Religion and ethnicity did not make any difference in the knowledge scores, even though there were questions that may have been influenced by different cultures and belief. However, the forum did not reflect the broad crossection of ethnicities that makes up Vancouver, as only 11% of the attendees were not Caucasian of European origin. Vancouver has a large Asian and Indo-Canadian population. The forum presentations were all given in English and there was minimal involvement of ethnic businesses and multicultural groups in display areas. Future forums need to involve multicultural groups in the forum planning. The need for ongoing professional and public education is demonstrated by the lack of knowledge about opioids and how they are used in terminal illness. There still remains the belief that the use of morphine for pain shortens life and that early use of pain medications leads to tolerance and poor pain control—despite increasing medical literature refuting this.8 It is disturbing that a sizable number of healthcare providers incorrectly answered these questions or did not know the answer. Although many of those in the healthcare field were volunteers, they have received some training in palliative care.
Very Important
Important
78.30% 72.90% 73.60%
21.00% 24.30% 25.00%
0.70% 2.80% 0.70%
0.00% 0.00% 0.70%
72.20% 69.00% 62.20% 51.00% 52.10% 45.50% 32.60% 14.70% 27.70%
25.70% 26.80% 32.90% 44.80% 36.80% 26.60% 45.40% 31.50% 19.90%
1.40% 2.80% 3.50% 4.20% 9.00% 20.30% 19.10% 45.50% 32.60%
0.70% 1.40% 1.40% 0.00% 2.10% 7.70% 2.80% 8.40% 19.90%
61.80% 43.40% 35.70% 27.00% 24.50%
28.50% 39.20% 42.70% 43.30% 21.70%
8.30% 13.30% 19.60% 17.70% 35.70%
1.40% 4.20% 2.10% 12.10% 18.20%
Neutral
Not Important
The other two confusing issues to the attendees concerned euthanasia and the nature of suicidal desires in the terminally ill. Almost 50% of the attendees thought that euthanasia involved withholding life-sustaining treatment. The healthcare professionals did not answer significantly differently from the general population. Although it is possible that there may have been confusion about the question, there is more likely confusion about the issue, as other local studies have shown similar problems. In a public poll of adults in British Columbia, 54.1% of respondents agreed that euthanasia was refusing medications or treatment that prolongs life. Of those who expressed support for legalized euthanasia in the same poll, 67% agreed that euthanasia is refusing medication or life-prolonging treatment.9 The public appears to be agreeing that patients should have choice in their treatment, not necessarily agreeing with actions which have as their sole intent killing the patient. Twenty-six percent of attendees at the forum agreed that dying people had little control over or choice in their treatment. Although health care workers disagreed with this significantly more than other groups, it is perhaps because those of us in the field know how the system works. Considering that this is a highly educated group, it is sobering that so many feel that they have little control over how they are treated. Only 15% of
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the attendees agreed that it was illegal to refuse treatment, but a similar number of people did not know the answer to this. There is an urgent need for more public education around the issues of choices in treatment, refusing treatment, and what euthanasia is. Majority support for euthanasia may be confused with those who merely support the right to refuse treatment. Forty-seven percent felt that having a doctor who would consider assisted suicide was important to very important. It is hard to interpret this in the face of the confusion about what euthanasia is. Perhaps it is the desire to have a physician who will offer them choice in treatment should they have a terminal illness. Analysis of the anticipated needs of attendees at the time of a terminal illness showed that meeting physical needs, and control and independence needs became less important with increasing age of the attendee. Perhaps this reflects the adaptation that all of us make as we age, develop health problems and have increased reliance on others. It also could reflect the maturation of the personality with age. The author’s general perception is that those actually facing a terminal illness have a greater interest in relationship and belief issues—if their physical symptoms are adequately controlled. A further study could compare the answers of people actually facing a terminal illness with those who attended the forum. The lack of significant differences between the groups attests to the fact that there are fundamental needs common to all people as they approach death. Assessment of the effectiveness of the public forum will be difficult, as there is no one health behavior in the community than can be measured before and after the forum as one can do in single-issue health promotion events. Surveying future attendees of the forum to note a change in attitude and knowledge would be helpful. However, health education research has shown that providing information to the public is only effective if there is accompanying behavior change in organizations and providers that reinforce the new attitudes and behaviors.10 Therefore, ongoing education of healthcare professionals and policy makers is essential.
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Vol. 21 No. 1 January 2001
More public education about what palliative care has to offer, what euthanasia is, and choices already available in treatment is clearly needed. This education must be attractive to those of all education levels and should involve the different cultural groups of the community. Specific education to dispel myths and fears about the use of opioids in terminal illness is needed for both the public and healthcare workers. Further explanations of the definition of euthanasia and what choices are already available to patients must be discussed.
References 1. Russell P, Sander R. Palliative care: Promoting the concept of a healthy death. Br J Nursing 1998;7: 256–261. 2. Iserson KV. Dying to know: Introduction. In: Iserson KV, ed. Death to dust: What happens to dead bodies. Tucson, AZ: Galen Press, 1994. 3. Billings JA, Block S. Palliative care in undergraduate medical education: Status report and future directions. JAMA 1997;278:733–738. 4. Bronstein JM, Jones CA. Ethics, technology, and the high cost of dying: A public forum. South Med J 1986;79:1485–1488. 5. Heath JM, Kucic KS, Hollifield D, Kues JR. The health beliefs of health fair participants. J Community Health 1991;16:197–203. 6. Waller PR, Crow C, Sands D, Becker H. Health related attitudes and health promoting behaviors: Differences between health fair attenders and a community group. Am J Health Promotion 1988;3: 17–23. 7. Furstenberg CT, Ahles TA, Whedon MB, et al. Knowledge and attitudes of health-care providers toward cancer pain management: A comparison of physicians, nurses, and pharmacists in the state of New Hampshire. J Pain Symptom Manage 1998;15: 335–349. 8. Wall PD. The generation of yet another myth on the use of narcotics. Pain 1997;73:121–122. 9. Public Opinion Poll of 603 residents of British Columbia done by TTI Market Explorers June of 1997 for the Euthanasia Prevention Coalition of British Columbia. 10. Green L. Prevention and health education in clinical, school, and community settings. In: Wallace RB, ed. Maxcy-Rosenau-Last’s public health & preventive medicine, 14th ed. New York: Appelton & Lange, 1998.
Journal of Pain and Symptom Management
Vol. 21 No. 1 January 2001
Original Article
Using a Trade-Show Format to Educate the Public About Death and Survey Public Knowledge and Needs About Issues Surrounding Death and Dying Romayne Gallagher MD, CCFP Division of Palliative Care, Department of Family Practice, University of British Columbia, and University of British Columbia Hospital, Vancouver, British Columbia, Canada
Abstract A public education event on death and dying, based on the design of a commercial trade show, was held to raise the profile of palliative care in the community. Attendees answered a questionnaire designed to assess their knowledge on issues about dying and their anticipated needs if they were to face a terminal illness. Healthcare providers knew significantly more about dying, but there were persistent misconceptions that morphine shortens life, causes addiction, and develops tolerance. The questionnaire revealed confusion about treatment choices available to patients and euthanasia. The anticipated needs questions revealed that increasing age leads to less concern about physical needs, and independence/control. Further public forums on death and dying will be held with attention to education on the identified issues and inclusion of wider education and cultural groups. J Pain Symptom Manage 2001;21:52–58. © U.S. Cancer Pain Relief Committee, 2001. Key words Palliative care, public education, morphine myths, euthanasia
Introduction Our society works hard to deny death. While medical technology has saved many from death due to acute illnesses such as myocardial infarction, it has increased the numbers living with chronic disease. To some extent, this same technology has led our society to believe that death is avoidable. In the last 90 years, life expectancy at birth has increased, but life expectancy at age 60 has changed little.1 However, the culture of death has changed dramatically over that same period. Death now occurs Address reprint requests to: Romayne Gallagher, MD, 5804 Fairview Avenue, Vancouver, BC, V6T 1Z3, Canada. Accepted for publication: February 22, 2000. © U.S. Cancer Pain Relief Committee, 2001 Published by Elsevier, New York, New York
mostly in hospitals, where it can be hidden from day to day life.2 Most people are unaware of what a funeral director does and what happens to bodies after death. Death is seen as an unnatural process and no longer a part of life. With the advent of palliative care, there is a movement to bring death closer to home in both the physical and psychological sense. However, education about palliative care is still lacking in medical and other healthcare professional training,3 and has not significantly reached the general public. A literature search turned up only one report of a public forum on care for the terminally ill—this occurred in the United States in 1985.4 The Division of Palliative Care at the University of British Columbia has a goal of increas0885-3924/01/$–see front matter PII S0885-3924(00)00244-X
Vol. 21 No. 1 January 2001
Trade-Show Format to Educate and Survey the Public
ing public education about death and dying, and raising the profile of palliative care in our community. To accomplish this, the Division held a public forum to promote palliative care and to discuss issues around death and dying. By informing and involving the public, the Division hopes to raise the public’s awareness of what services are available to them and make them better consumers and advocates for improved access and standards of palliative care. As part of the forum, a questionnaire was developed to assess public knowledge and needs about death and dying issues.
Methods The design of the public forum was based on commercial trade shows where both presentations and display booths are featured. A series of oral presentations were given on subjects including what palliative care is, advanced directives, dying at home, and community palliative care services. There was an “audience participation theater event,” during which the audience proposed situations that were then acted out by other audience members. Despite the two-hour duration, there was attention and involvement from the entire audience. At another time, a physician and family member discussed the biological changes of dying. Interspersed with factual information on the changes were the daughter’s comments on how she felt and coped with these changes as she witnessed her mother dying. A chaplain from our children’s hospital spoke of discussing death with children and a grief counselor discussed normal grief reactions and supportive services available in the community. Organizations and businesses pertaining to death and dying displayed information and services at booths set up in large rooms separate from the oral presentations. Funeral service providers, hospice and palliative care organizations, palliative care units, bereavement foundations, legal services, and a bookstore were among those participating. Therapeutic touch was demonstrated and relaxation and guided imagery tapes were available. The bookseller featured books and tapes about death, dying, and caregiving. The non-profit groups were charged a display fee of $100 and the forprofit businesses were charged a fee ranging from 10% of profits up to $500, depending on what they could afford.
53
The forum was held at a downtown conference center on a Friday evening and all day Saturday. Community newspapers and radio stations advertised the event and event posters were displayed in hospices, churches, and hospitals. Depending on the level of sponsorship, the company or organization’s name and logo were featured in the printed advertising. Solicited donations from sponsors covered the cost of the forum. Funeral service providers, hospitals, regional health authorities, and pharmaceutical companies were the largest donors. Admission to the forum was by donation so that no one was excluded from attending. The average donation for admission was approximately $5. The small amount of money left after expenses has been set aside to establish a fund for palliative care research. Each attendee was asked to answer the knowledge and needs questionnaire as he or she entered the forum. They were requested to complete the questionnaire prior to entering the oral presentations or viewing the booths. Volunteers were present to ensure that the form was completed and returned prior to the attendee entering the forum. The first part, entitled “Your Experience with Dying and our Healthcare System” consisted of a set of 16 statements to be rated as strongly agree, agree, disagree, strongly disagree and don’t know. The statements were prefaced with the caution that “some statements are true and some are common myths.” Some of the statements were derived from a previous questionnaire administered to health care professionals5 and others were based on common issues that arose in the author’s palliative care practice. The second part was a needs assessment that was prefaced by the question “If you had a terminal illness how important would the following issues be to you?” Seventeen items derived from the experience of a palliative care nurse, physician, and chaplain were listed. The needs could be grouped into issues of physical needs, control and independence, and relationships and beliefs. Each statement could be rated as very important, important, neutral, and not important. The third and final section of the questionnaire recorded information on the age, gender, ethnicity, religion, education, occupation, and previous death experience of the attendee. Finally the attendee was asked how they heard about the forum and why they had come. Or-
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ganizers of the conference were excluded from answering the questionnaire. Frequency tables were prepared for each of the demographic variables and for each individual Likert scale “knowledge” and “needs” item. The “knowledge” and “needs” items were summarized by computing the mean and standard deviation of each item. In order to compare different groups of attendees, a “knowledge score” was developed for the first part of the questionnaire that assessed knowledge about death and dying. The author assigned a “correct” answer to each question, and the respondent was given one point for each “correct” answer. A total knowledge score was computed by summing the number of correct responses among the knowledge items. The total scores were then compared among the different groups answering the questionnaire. The second section of the questionnaire, looking at perceived needs, was analyzed by grouping the statements into issues of physical needs, control and independence, and relationships and beliefs. Those collections of needs were then compared among the different groups attending the forum. Three “importance” scales—Physical Needs, Control/Independence, Relationship/Beliefs—were also computed as the mean of the items comprising each scale. One-way analysis of variance was used to assess the effects of the demographic variables on the derived scale scores, and on selected individual items.
Results A total of 144 participants completed the questionnaire. The audience was 88% Caucasian of European origin, with a mean age of 51.7 years. The range in ages was 21 to 84, with the median age being 51. There were 71% females and 29% males. Almost 50% of the attendees were Christian, with the next largest group (29%) claiming no religion. The education level of the attendees was high, with 83% having post-secondary education. Fifty-eight percent of those coming to the forum did not work in the health care field. Of the 42% that were healthcare workers, the largest group was “other” at 38%. Most of these people were volunteers, many of them from hospices and palliative care units. Of the remaining healthcare workers, 26% were nurses, and 14% were phy-
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sicians. Thirty-eight percent of all the attendees had experienced a death in the last five years and 24% in the last year. Only 4% had never experienced a death. Thirty-six percent of people came to the forum because they work in this field, either as their occupation or as volunteers. Thirty percent came because of a past death experience. Six percent came because they have a life-threatening illness and 16% came because someone close to them was dying. Newspapers were the most effective media in bringing the forum to the attendee’s attention. However, word of mouth was surprisingly effective, as 25% of those attending heard about the forum by that route. The percentage answers to the statements about death and dying, sorted from least agreement to most agreement, are in Table 1. There was strong agreement on statements about the right to expect pain relief as a treatment goal, uncontrolled pain as an urgent medical situation, home care being as good as hospital care, pain perception being affected by many issues, and a terminal illness offering a chance to grow as a person. However, over 40% of attendees believed that morphine shortens life, 42% disagreed that opioids posed a low addiction risk, and more than 25% felt that early use of pain medication would render it ineffective later in the disease. More than 25% of attendees felt that the dying had little control over their treatment. Forty-seven percent believed that euthanasia included withholding life-sustaining treatment. More than 25% felt that it was common for terminally ill people to want to end their own life. There was no clear agreement over the question of whether people who ask to have their life ended were experiencing uncontrolled suffering. The “don’t know” category was generally less than 10% of the total number of answers for most questions. However, for the questions about opioids (morphine shortens life, addiction risk of opioids, loss of effectiveness over time) 24.3%, 16.7%, and 25.7% of attendees marked “don’t know” as their answer. Of the “don’t know” groups, there were 44%, 42%, and 35%, respectively, of healthcare workers who did not know the answers to the questions about morphine. Almost 15% of attendees didn’t know if it was illegal to refuse treatment and approximately 14% didn’t know if the terminally ill often want to end their own life. The
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Table 1 Your Experience with Dying and Our Healthcare System Questions People who are dying have little control over or choice in their treatment. When using narcotics such as morphine for relieving pain, the risk of becoming addicted to the pain medication is extremely low. Euthanasia involves withholding life-sustaining treatments such as life support machines. Almost all pain can be relieved by medication and other therapies It is illegal to refuse treatment if you have a life-threatening illness. People who ask to have their life ended often have uncontrolled physical symptoms or psychological suffering. Strong pain relievers should not be used to control pain early in the disease as the effectiveness of the medication will wear off and there will be poor pain control later on. Morphine doses sufficient to relieve pain may shorten the life of the person or contribute to their death. The person who is dying wants to know everything about their disease and what is going to happen to them. It is common for people with a terminal illness to want to end their own life. All people who are dying experience pain. Palliative care in the home (planned dying in your own home) provides equally good care as in the hospital. Uncontrolled pain is an urgent medical situation. For some people, their terminal illness offered them a chance to improve relationships and grow as a person. The perception of pain by a person is affected by emotional, cultural, spiritual, and social issues that the person faces. Patients and family members have a right to expect pain relief as an important goal of treatment.
“don’t know” categories were split equally between healthcare and non-healthcare attendees. Comparison of the total knowledge scores between groups of attendees showed a significant difference in age, with the older groups having a lower score (Table 2). There was a significant increase in the knowledge score if the attendee worked in the health care field. Those were the only significant differences. Surprisingly, education or past death experience did not seem to have any effect on the knowledge score. The statements that proved to be most difficult for the attendees were further analyzed in an attempt to understand any variables that might lead to the misperceptions. In the question suggesting that morphine shortens life, the only significant difference between the groups was that health care workers, more than all other groups, answered that morphine did not significantly shorten life. The same was also true for the question suggesting that early use of morphine leads to ineffective pain control later, in that healthcare workers strongly
Strongly Agree
Agree
Disagree
Strongly Disagree
8.00%
18.20%
39.40%
34.30%
3
0.92
18.60%
39.00%
32.20%
10.20%
2.34
0.9
6.10% 12.70% 5.70%
41.20% 47.00% 9.80%
32.10% 28.40% 38.50%
20.60% 11.90% 45.90%
2.67 2.4 3.25
0.87 0.86 0.86
20.80%
50.80%
20.00%
8.30%
2.16
0.85
3.80%
25.50%
42.50%
28.30%
2.95
0.83
3.70%
42.10%
35.50%
18.70%
2.69
0.82
14.90%
42.50%
36.60%
6.00%
2.34
0.8
4.10% 4.60%
22.80% 12.30%
55.30% 60.80%
17.90% 22.30%
2.87 3.01
0.75 0.73
31.30% 61.20%
54.20% 33.80%
12.20% 4.30%
2.30% 0.70%
1.85 1.45
0.71 0.62
36.20%
58.00%
5.10%
0.70%
1.7
0.6
50.70%
45.70%
3.60%
0.00%
1.53
0.57
57.20%
41.30%
0.70%
0.70%
1.45
0.55
Mean
SD
disagreed. However, those people who had a previous death experience also disagreed in significantly greater numbers than other groups. The statement made about low risk of addiction with narcotics was significantly endorsed not only by health care workers but also by older attendees. Health care workers were the only group that felt that dying people had control over their treatment. In the statement proposing that it was illegal to refuse treatment, health care workers rejected this statement significantly more than other groups. However, First Nation groups and older attendees accepted this statement significantly more than other groups. Those who had death experience and healthcare workers rejected the statement that euthanasia involves withholding life-sustaining treatment significantly more than other groups. Only healthcare workers rejected the idea that the terminally ill commonly want to end their own life. The answers to the last statement about those who are suicidal having uncontrolled physical or psychological suffering showed no significant difference among the groups.
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Table 2 Knowledge Scores Analyzed by Characteristics of Attendees Variable Age (F ⫽ 4.12, P ⫽ .0035) Under 40 40–49 50–59 60–69 70⫹ Gender (F ⫽ 619, P ⫽ .014) Female Male Gender/Healthcare (F ⫽ 6.28, P ⫽ .0005) Female/Not Healthcare Female/Healthcare Male/Not Healthcare Male/Healthcare Ethnicity (F ⫽ 1.39, P ⫽ .25) Asian First Nations Indo-Pakistani White European Religion (F ⫽ 2.14, P ⫽ .064) Buddhist Christian Jewish Moslem Other None Education (F ⫽ 2.01, P ⫽ .14) Less than high school High School College/University/Post-Secondary Work in Healthcare? (F ⫽ 15.44, P ⫽ .0001) Yes No Type of Healthcare Work (F ⫽ 1.39, P ⫽. 24) Nurse Physician Pharmacist Spiritual care Social work Physio/OT Other Experienced Death of Loved One? (F ⫽ .43, P ⫽ .73) Never In last year In last five years In distant past
Cases Mean
SD
26 33 36 23 26
5.58 6.61 5.5 4.01 3.88
2.55 3.3 2.94 2.31 3.43
100 40
5.64 3.32 4.26 2.19
47 53 33 7
4.62 6.55 3.97 5.43
2.81 3.49 1.86 3.26
11 4 1 125
4.73 3.5 10 5.33
2.53 1.29 0 3.11
7 70 8 1 14 41
7.29 4.73 4.63 6 7 5.56
2.81 2.79 1.99 0 3.21 3.49
4 20 119
4.5 2.89 4.05 3.12 5.5 3.08
83 61
6.37 3.44 4.42 2.53
15 8 1 4 5 3 22
6.13 8.63 4 4.75 5.8 9.33 5.64
3.91 4.03 0 2.63 2.59 3.05 3.08
6 35 54 48
5.67 5 5.59 5
3.72 3.01 3.32 2.9
The importance rating of anticipated needs in a terminal illness are listed in Table 3. Analysis of the rating of needs among different groups of attendees found that increasing age resulted in a lower importance rating of physical needs. Control and independence issues were also significantly less important with age. Women attendees rated control and independence issues as significantly more important
Vol. 21 No. 1 January 2001
than men. No other significant differences were found between the groups. A comments box at the exit of the forum yielded suggestions for future topics, including different funeral traditions and near death experiences. The presentation commented on most positively was “Dying is a Natural Process,” in which a physician and a patient’s daughter interwove the biological changes of dying with the story of her mother’s death.
Discussion Although the forum attendee demographics did not match the average demographics of the Vancouver population, they were similar to other “health fairs” in that most of the attendees were female and older.5 Another study of health fair demographics revealed that attendees perceived themselves as having greater internal control of their health and reported more behaviors consistent with health responsibility when compared to a community comparison group.6 It would be interesting to compare attendees of a death and dying forum to attendees of health fairs to see if their attitudes differed with respect to perception of control over their own health and their attitudes towards health responsibility. As expected, those with a health care occupation had a greater overall knowledge about death and dying. Occupations within the healthcare field did not seem to make any difference. This contrasts with Furstenberg et al.,7 who showed nurses to be the most knowledgeable. However, the numbers within the different health care professions in this study were quite small and cannot be statistically analyzed. Another predictable difference was that there was a significant increase in knowledge among younger age groups. This may indicate a trend that old myths and fears around dying, pain management, and opioids are gradually receding. However, there was an interesting exception to this, in that the oldest age group of seventy plus believed, significantly more than any younger group, that addiction as a result of morphine was a low risk. It was surprising that there was no significant difference in the knowledge score with education level. However, only 16% of the attendees had less than a post-secondary education and likely do not represent an adequate sample of
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Table 3 Anticipated Needs in a Terminal Illness Statements Physical Issues Control of pain. Control of symptoms such as nausea, vomiting, constipation. Being alert and comfortable enough to talk with family and friends. Control and Independence Issues Being able to walk, feed and dress yourself for as long as possible. Having your financial affairs in order before you die. Knowing everything about your disease. Discussing each treatment with your doctor or nurse. Being able to plan your own funeral arrangements before you die. Being able to die in your own home. Not being dependent on family members to provide your day-to-day care. Having family members that provide your day-to-day care. Having a doctor who is willing to participate in physician assisted suicide. Relationship Issues Being able to talk about spiritual issues with friends, family and caregivers. Having a family doctor who has known you over a number of years. Having the same home care nurse throughout your illness. Having healthcare providers who will participate in resolving family issues. Having caregivers that share your religious beliefs.
those with high school education or less. Future public forums should have more media coverage and perhaps involvement of celebrities who may attract people with all levels of education. Religion and ethnicity did not make any difference in the knowledge scores, even though there were questions that may have been influenced by different cultures and belief. However, the forum did not reflect the broad crossection of ethnicities that makes up Vancouver, as only 11% of the attendees were not Caucasian of European origin. Vancouver has a large Asian and Indo-Canadian population. The forum presentations were all given in English and there was minimal involvement of ethnic businesses and multicultural groups in display areas. Future forums need to involve multicultural groups in the forum planning. The need for ongoing professional and public education is demonstrated by the lack of knowledge about opioids and how they are used in terminal illness. There still remains the belief that the use of morphine for pain shortens life and that early use of pain medications leads to tolerance and poor pain control—despite increasing medical literature refuting this.8 It is disturbing that a sizable number of healthcare providers incorrectly answered these questions or did not know the answer. Although many of those in the healthcare field were volunteers, they have received some training in palliative care.
Very Important
Important
78.30% 72.90% 73.60%
21.00% 24.30% 25.00%
0.70% 2.80% 0.70%
0.00% 0.00% 0.70%
72.20% 69.00% 62.20% 51.00% 52.10% 45.50% 32.60% 14.70% 27.70%
25.70% 26.80% 32.90% 44.80% 36.80% 26.60% 45.40% 31.50% 19.90%
1.40% 2.80% 3.50% 4.20% 9.00% 20.30% 19.10% 45.50% 32.60%
0.70% 1.40% 1.40% 0.00% 2.10% 7.70% 2.80% 8.40% 19.90%
61.80% 43.40% 35.70% 27.00% 24.50%
28.50% 39.20% 42.70% 43.30% 21.70%
8.30% 13.30% 19.60% 17.70% 35.70%
1.40% 4.20% 2.10% 12.10% 18.20%
Neutral
Not Important
The other two confusing issues to the attendees concerned euthanasia and the nature of suicidal desires in the terminally ill. Almost 50% of the attendees thought that euthanasia involved withholding life-sustaining treatment. The healthcare professionals did not answer significantly differently from the general population. Although it is possible that there may have been confusion about the question, there is more likely confusion about the issue, as other local studies have shown similar problems. In a public poll of adults in British Columbia, 54.1% of respondents agreed that euthanasia was refusing medications or treatment that prolongs life. Of those who expressed support for legalized euthanasia in the same poll, 67% agreed that euthanasia is refusing medication or life-prolonging treatment.9 The public appears to be agreeing that patients should have choice in their treatment, not necessarily agreeing with actions which have as their sole intent killing the patient. Twenty-six percent of attendees at the forum agreed that dying people had little control over or choice in their treatment. Although health care workers disagreed with this significantly more than other groups, it is perhaps because those of us in the field know how the system works. Considering that this is a highly educated group, it is sobering that so many feel that they have little control over how they are treated. Only 15% of
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the attendees agreed that it was illegal to refuse treatment, but a similar number of people did not know the answer to this. There is an urgent need for more public education around the issues of choices in treatment, refusing treatment, and what euthanasia is. Majority support for euthanasia may be confused with those who merely support the right to refuse treatment. Forty-seven percent felt that having a doctor who would consider assisted suicide was important to very important. It is hard to interpret this in the face of the confusion about what euthanasia is. Perhaps it is the desire to have a physician who will offer them choice in treatment should they have a terminal illness. Analysis of the anticipated needs of attendees at the time of a terminal illness showed that meeting physical needs, and control and independence needs became less important with increasing age of the attendee. Perhaps this reflects the adaptation that all of us make as we age, develop health problems and have increased reliance on others. It also could reflect the maturation of the personality with age. The author’s general perception is that those actually facing a terminal illness have a greater interest in relationship and belief issues—if their physical symptoms are adequately controlled. A further study could compare the answers of people actually facing a terminal illness with those who attended the forum. The lack of significant differences between the groups attests to the fact that there are fundamental needs common to all people as they approach death. Assessment of the effectiveness of the public forum will be difficult, as there is no one health behavior in the community than can be measured before and after the forum as one can do in single-issue health promotion events. Surveying future attendees of the forum to note a change in attitude and knowledge would be helpful. However, health education research has shown that providing information to the public is only effective if there is accompanying behavior change in organizations and providers that reinforce the new attitudes and behaviors.10 Therefore, ongoing education of healthcare professionals and policy makers is essential.
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More public education about what palliative care has to offer, what euthanasia is, and choices already available in treatment is clearly needed. This education must be attractive to those of all education levels and should involve the different cultural groups of the community. Specific education to dispel myths and fears about the use of opioids in terminal illness is needed for both the public and healthcare workers. Further explanations of the definition of euthanasia and what choices are already available to patients must be discussed.
References 1. Russell P, Sander R. Palliative care: Promoting the concept of a healthy death. Br J Nursing 1998;7: 256–261. 2. Iserson KV. Dying to know: Introduction. In: Iserson KV, ed. Death to dust: What happens to dead bodies. Tucson, AZ: Galen Press, 1994. 3. Billings JA, Block S. Palliative care in undergraduate medical education: Status report and future directions. JAMA 1997;278:733–738. 4. Bronstein JM, Jones CA. Ethics, technology, and the high cost of dying: A public forum. South Med J 1986;79:1485–1488. 5. Heath JM, Kucic KS, Hollifield D, Kues JR. The health beliefs of health fair participants. J Community Health 1991;16:197–203. 6. Waller PR, Crow C, Sands D, Becker H. Health related attitudes and health promoting behaviors: Differences between health fair attenders and a community group. Am J Health Promotion 1988;3: 17–23. 7. Furstenberg CT, Ahles TA, Whedon MB, et al. Knowledge and attitudes of health-care providers toward cancer pain management: A comparison of physicians, nurses, and pharmacists in the state of New Hampshire. J Pain Symptom Manage 1998;15: 335–349. 8. Wall PD. The generation of yet another myth on the use of narcotics. Pain 1997;73:121–122. 9. Public Opinion Poll of 603 residents of British Columbia done by TTI Market Explorers June of 1997 for the Euthanasia Prevention Coalition of British Columbia. 10. Green L. Prevention and health education in clinical, school, and community settings. In: Wallace RB, ed. Maxcy-Rosenau-Last’s public health & preventive medicine, 14th ed. New York: Appelton & Lange, 1998.