AM J HOSP PALLIAT CARE OnlineFirst, published on January 9, 2009 as doi:10.1177/1049909108328700
Beyond Polarization, Public Preferences Suggest Policy Opportunities to Address Aging, Dying, and Family Caregiving
American Journal of Hospice & Palliative Medicine1 Volume 000 Number 00 Month 2009 1-9 # 2009 SAGE Publications 10.1177/1049909108328700 http://ajhpm.sagepub.com hosted at http://online.sagepub.com
Ira R. Byock, MD, Yvonne J. Corbeil, and Martha E. Goodrich, MS Despite well-documented deficiencies and widespread suffering experienced by millions of elderly or ill Americans and their families, politicians rarely address end-of-life issues. Citizen Forums in New Hampshire surveyed 463 people regarding aging, serious illness, and caregiving. More than 80% indicated it was very or extremely important to have their dignity respected, preferences honored, pain controlled, and to not leave family with debt. Less than half strongly endorsed being kept alive as long as possible, prayed with or for, or having assisted-suicide available. Over 80% strongly
endorsed palliative care requirements clinical licensure and reimbursement, expansion of family caregiver leave, respite care, and bereavement support. By avoiding actions which elicit strong divergence of opinion and focusing on actions on which consensus exists, public officials and candidates can respond to problems and improve care and experience for frail elders, dying Americans, and their families.
Introduction
Noncovered expenses are large and can erode a family’s financial security.6,7 As challenging as the situation is today, demographic trends suggest that the situation may worsen without substantive response by health care systems, state and federal governments, and broad aspects of society. Another hallmark of attractive political issues is that potential solutions and policy options exist which are backed by respected, non-partisan bodies. In this case, an array of governmental agencies and expert panels, including the Institute of Medicine and the Congressionally-mandated Citizens Working Group on Health Care,8-11 have put forward specific recommendations for correcting current deficiencies and avoiding future crises related to aging, dying, and caregiving. Two decades of public and philanthropically funded academic efforts have yielded novel health service delivery and assisted living models that improve people’s comfort, function, and quality of life.12-16 The science and clinical disciplines of pain management and palliative care have experienced rapid progress.17-19 These developments would seem to provide bases for public policies and proposals for
Care for people during the final phases of life has hallmarks of a hot political topic. It affects nearly everyone at various points in life, as an adult child and, eventually, as someone who is ill and needing care. And the mainstream systems of care are broken. At any given time, millions of Americans struggle to obtain care and support services for aging or ill grandparents or parents, siblings, or children.1 Although access and quality are both below expectations, costs exceed reasonable expectations. Nearly one quarter of Medicare and Medicaid expenditures occur during the last year of life,2,3 with no relationship between dollars spent and quality received.4,5 From the Department of Anesthesiology, Dartmouth-Hitchcock Medical Center, Lebanon, (IRB, YJC); and Department of Community and Family Medicine, Dartmouth Medical School, Hanover (IRB, YJC, MEG), New Hampshire. Address correspondence to: Ira R. Byock, Palliative Medicine, Dartmouth Hitchcock Medical Center, One Medical Center Dr, Lebanon, NH 03756; phone: (603) 650-5402; e-mail:
[email protected].
Keywords: family caregiving; palliative; aging; dying; policy; end of life; public opinion
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2 American Journal of Hospice & Palliative Medicine1 / Vol. 000, No. 00, Month 2009
addressing immediate, personal priorities of millions of Americans. Yet elected officials and candidates for public office rarely invoke issues related to end-oflife care and when asked to discuss them in debates or forums, tend to answer in platitudes and change the subject. It is not hard to surmise why politicians might be averse to avoiding these issues. Subjects of illness, dying, and death seem daunting and depressing. They are not just political; they are personal and evoke issues of morality with religious overtones and emotions of sadness, anger, and even shame. The related problems of professional care and social support are multidimensional and substantial improvements are likely to be complex and costly. In the contemporary public arena, matters having to do with dying and end-of-life care are most often associated with the assisted-suicide debate,20 the case of Terri Schiavo, and related social chasms between prolife and right-to-die movements. In this study, conducted during spring and early summer 2007, we examined public opinion in New Hampshire, the first-in-the-nation presidential primary state, regarding (1) what people believe is important during the last phases of a person’s life and (2) what changes in policy they support for improving the lives of frail elders, people living with serious illness, and their family caregivers. Participants expressed opinions that are pertinent to health care and social services. The results identify specific changes with policy implications that are likely to garner broad public support in efforts to diminish the social and public health challenges that aging, dying, and caregiving present.
ComTec Audience Response Systems; Synthesis Xpw 250 Software, ComTec XPw – Elect XPw), participants responded to items related to their values, and rated specific programs and actions with implications for policy makers and leaders of health care and social services. Questions regarding personal values and priorities were adapted from items within previously published surveys and opinion polls. The approaches to increasing access and quality of care presented in these items were drawn from models of care, service delivery, and supported living arrangements that have been developed as demonstration projects.12-14,21 Items presenting specific suggestions for changes in laws, regulations, reimbursement criteria, and requirements for education, licensure, and accreditation were drawn from recommendations of professional associations and expert panels, such as the Institute of Medicine and Citizens Health Care Working Group, and policy proposals of citizen or patient advocacy groups.9,12,22 Items rating personal values employed a response scale of importance: from Not at All Important (1) to Extremely Important (5). Items rating changes with policy implications used an agreement scale: from Strongly Disagree (1) to Strongly Agree (5). All data were collected anonymously. Participants were informed and aware that pooled results would be made public. The complete data item set and results for this report are available at http://www.ReclaimTheEnd.org.
Results Profile of Participants
Methods In spring 2007, during the presidential primary season, Citizen Forums were conducted in 8 communities throughout New Hampshire. Forums were held in early evenings at accessible public venues, such as senior centers. The events were announced through notices in newspapers, posters distributed by local collaborators, and through bulletins of local health care institutions. The notices emphasized that opinions were being sought to inform presidential candidates during the New Hampshire primary campaigns. No prior registration was required. Using touchpad technology (Communications Technology Int’l Inc, Mahwah, NJ, http://www.comtec-ars.com;
A total of 463 participants attended 1 of 8 Citizen Forums. Table 1 describes the demographic characteristics of the participants.
Personal Values and Concerns for Waning Phase of Life Participants were asked a series of questions designed to identify what was most important to them when they think about the waning phase of life for themselves or someone they love. The Forum facilitator (IB) explained that the phrase ‘‘waning phase of life’’ pertained to a period in which a person needs assistance to accomplish routine tasks of daily life, including basic self-care, not due to a stable or long-term
Public Preferences to Address Aging, Dying, and Family Caregiving / Byock et al
percent indicated it was very or extremely important not to leave their family with debt (Table 2).
Table 1. Profile of Participants Demographic Characteristics Race White Black Asian Hispanic Mixed race Gender Male Female Age Under 25 25-44 45-64 Over 64 Method of payment for health care (primary) Employer-based insurance Self-purchased insurance Medicare Medicaid Veterans benefits Other None Method of payment for health care (secondary) Employer-based insurance Self-purchased insurance Medicare Medicaid Veterans benefits Other None Education Grade school High school Some college Vocational school Bachelor degree Graduate degree
Number of Responses 443 429 3 1 2 8 451 108 343 456 16 43 252 145 453
3
%
Important Attributes of Care 97 1 0 0 2 24 76 4 9 55 32
267 32 120 3 8 15 8 315
59 7 26 1 2 3 2
65 38 9 1 11 23 168 454 3 28 55 50 139 179
21 12 3 0 3 7 53 1 6 12 11 31 39
disability, but rather as a consequence of chronic, progressive illness, or frailty of advanced age.
The highest rated attributes of care and personal experience included having pain controlled (91%); ‘‘making sure I don’t suffer’’ (87%); a smooth transition from curative treatments to care directed at quality of life (89%); not being abandoned by health care professionals (86%); and having ‘‘help making medical decisions that are true to my values’’ (88%; Table 3).
Points of Divergence Not all items garnered strong support from a large majority of participants. Less than 7% of respondents felt that it was very (4%) or extremely (3%) important to be kept alive as long as possible, while 46% felt it was not important at all. A minority of respondents felt that being prayed with was very important (14%) or extremely important (30%). Similarly, being prayed for was very important to 13% and extremely important to 28%. ‘‘Having physician-assisted suicide available if I am suffering’’ was very important to 13% and extremely important to 27%, while 39% said it was not important at all.
Preference for Last Days of Life The large majority of participants want to be at home or in a hospice setting as they die. A total of 71% said they want to spend their last days at home and 7% at a friend’s or family member’s home; 15% expressed wanting to be in a hospice facility and 4% in an assisted living environment. Less than 1% indicated they would want to be in a hospital. No participant chose a nursing home as their preferred location. In a follow-up item, 71% indicated that spending their last days in the place they chose would be very or extremely important; 82% felt it is very (22%) or extremely (60%) important to have a residential hospice available if needed.
Personal Concerns and Values Asked to contemplate the ‘‘waning phase of life,’’ a large majority of these New Hampshire residents said it is very or extremely important to them to have their choices honored (85%), their dignity respected (94%), and to have honest and clear communications with doctors and health care providers (96%). Ninety-one
What Citizens Want Policy Makers to Know A set of items asked participants to rate the extent to which they agreed or disagreed with specific actions or changes in policies intended to improve care for
4 American Journal of Hospice & Palliative Medicine1 / Vol. 000, No. 00, Month 2009
Table 2. Personal Concerns and Values Not at All
Honest, clear communications with doctors and health care providers Having my choices honored Respecting my dignity Not leave my family in debt
A Little Important
Important
Very Important
Extremely Important
n
%
n
%
n
%
n
%
n
%
1
0.2
1
0.2
17
3.8
69
15.4
359
80.3
2 4 8
0.4 0.9 1.8
1 3 3
0.2 0.7 0.7
19 20 32
4.2 4.4 7.1
32 62 51
7.0 13.7 11.3
402 363 357
88.2 80.3 79.2
Table 3. Important Attributes of Care Not at All n
%
Having pain controlled 4 0.9 "Making sure I don’t suffer" 7 1.5 Smooth transition from curative treatment 5 1.1 to care directed at quality of life Not abandoned by health care professionals 3 1.9 Help with making medical decisions that are 3 0.7 true to my values Keeping me alive as long as possible 208 46.3 Having someone to pray with me 107 23.7 Having someone to pray for me 90 22.8 Having physician-assisted suicide available 176 39.1
A little Important n
Important
Very Important
Extremely Important
%
n
%
n
%
n
%
4 8 6
0.9 1.8 1.3
34 45 39
7.5 10.0 8.7
59 81 127
13.0 17.9 28.3
353 311 272
77.8 68.8 60.6
2 11
1.3 2.4
17 40
10.7 8.9
42 95
26.4 21.1
95 302
59.7 67.0
130 71 54 45
29.0 15.7 13.7 10.0
80 78 86 50
17.8 17.3 21.8 11.1
16 61 53 59
3.6 13.5 13.4 13.1
15 139 112 120
3.3 29.7 28.4 26.7
frail elders and ill people, and support for family caregivers. The following items were rated agree or strongly agree by 80% or more of the participants.
Health Care Participants affirmed the pervasiveness of problems and desired changes. Asked to rate the overall state of the nation’s health care, 97% of participants indicated that the US health care system has major problems (47%) or is in a state of crisis (50%). Ninety-one percent believed it should be public policy to provide affordable health care to all Americans and 88% indicated willingness to pay a modest percentage of income across their working life for appropriate, timely, comprehensive care from conception to death. Ninety-four percent would revise or revoke federal and state regulatory barriers to effective pain prescribing. Ninety-seven percent expressed wanting to see improved collaboration between mental health and public health programs to meet the needs of frail elders. Eighty-eight percent said they want Medicare and Medicaid to cover basic dental care, including dentures.
Medical and Nursing Education Citizens indicated they want their doctors and nurses to be well-trained and skilled in care of elders and dying people. Ninety-seven percent said they believe medical and nursing students must be taught basic knowledge and skills of geriatrics and palliative care (such as medical decision-making, pain and symptom management, communication, care for frail elders, nursing home management, home visiting, estimating life-expectancy.) Furthermore, 97% agreed—including nearly 83% who strongly agreed—that faculty of medicine and nursing schools should be required to possess knowledge and skill in geriatrics, palliative, and end-of-life care. Ninety-four percent of participants would require medicine and nursing schools to teach the health effects of caregiving and support for family caregivers. More than 90% agreed (20%) or strongly agreed (70%) that passing tests of basic knowledge and skills in pain management should be a condition for physicians, nurse practitioners, and physician assistants to obtain a license to practice. Similar percentages agreed (20%) or strongly agreed (69%) that passing such tests should be a
Public Preferences to Address Aging, Dying, and Family Caregiving / Byock et al
5
Table 4. Medical and Nursing Education Strongly Disagree Disagree No Opinion
Require basic medical and nursing education include knowledge and skills of geriatrics, palliative and end-of-life care Require faculty of medicine and nursing schools to have knowledge and skill in geriatrics, palliative and end-of-life care Require medicine and nursing schools to teach knowledge, attitudes and skills regarding the health effects of caregiving and support for family caregivers Require physicians (NPs & PAs) to pass tests of basic knowledge and skills in pain management as a condition for receiving (or renewing) a license to practice Require physicians (NPs & PAs) to pass tests of basic knowledge and skills in pain management as a condition for receiving (or renewing) a license to prescribe medications
n
%
1
0.2
2
n
%
n
%
0 0.0
10
2.3
0.5
2 0.5
10
0
0.0
3 0.9
4
0.9
7
1.6
Agree n
%
Strongly Agree n
%
89 20.8
327
76.6
2.3
62 14.1
363
82.7
12
5.2
103 37.7
163
56.2
15 3.5
21
4.8
88 20.3
305
70.4
16 3.7
24
5.6
86 20.0
298
69.1
Table 5. Long-term Care Strongly Disagree Disagree No Opinion
Expand assisted housing alternatives for elders unable to live independently but not needing skilled nursing care Minimum staffing requirements for nurses and aides in nursing homes and assisted-living facilities Require a ‘‘living wage,’’ including health care coverage, for nurses aides Expand Eden and Greenhouse models of long-term care facilities
n
%
n
%
n
%
0
0.0
3
0.7
13
3.0
3
0.7
11
2.6
11
2
0.5
4
0.9
2
0.5
4
1.0
condition for being issued a license to prescribe medications (Table 4).
Agree n
%
Strongly Agree n
%
147 33.6
273
62.7
2.6
94 21.8
312
72.4
13
3.0
90 21.0
319
74.5
47
11.2
129 30.7
238
56.7
comprehensive attention to resident quality of life and living environments which include plants and regular involvement of children and pets (Table 5).
Long-term Care Over 95% of Citizen Forum participants would develop or expand assisted housing alternatives for elders who are unable to live independently but are not in need of skilled nursing care. Ninety-four percent supported setting and enforcing recommended minimum staffing requirements for nurses and aides in nursing homes and assisted-living facilities. Over 95% would require long-term care to pay nursing aides a ‘‘living wage,’’ including health care coverage. Eight-seven percent said they want to see wide adoption of models of long-term care (such as the Eden Alternative, Green House, Wellspring, and Pioneer Network) characterized by higher staffing levels and
Hospice and Palliative Care Participants in the New Hampshire Citizen Forums expressed a desire to expand access to hospice and palliative care. Ninety-four percent would mandate coverage for adult and pediatric hospice and palliative care through all private insurers, state Medicaid, and state employee-based coverage. Ninety-one percent supported making palliative care available in all residential long-term care and acute clinical settings as a condition for licensure and accreditation. Over 80% endorsed expanding access to hospice under Medicare for life-threatening conditions by removing current requirements of a 6-month life-expectancy
6 American Journal of Hospice & Palliative Medicine1 / Vol. 000, No. 00, Month 2009
Table 6. Hospice and Palliative Care Strongly Disagree Disagree No Opinion
Mandate coverage for adult and pediatric hospice and palliative care through all private insurers, state Medicaid, and state employee-based coverage Palliative Care must be available as a condition for licensure and accreditation Expand access to hospice under Medicare for lifethreatening conditions, remove current restrictions of: 6 month life expectancy and give up treatment directed at the disease or intended to prolong life Require the National Institutes of Health to spend at least 1% of annual appropriations on pain management and palliative care
Agree
n
%
n
%
n
%
n
7
1.6
3
0.7
16
3.7
10
2.3
12
2.8
16
8
1.9
40
9.4
4
0.9
14
3.2
Strongly Agree
%
n
%
99 23.0
305
70.9
3.7
80 18.6
311
72.5
36
8.5
84 19.8
257
60.5
47
10.9
102 23.6
266
61.4
Table 7. Support for Family Care Givers Strongly Disagree Disagree No Opinion
Expand family leave for caregiving Extend Medicare coverage to individuals who lost employerbased health insurance due to caregiving responsibilities Expand respite care for frail elders or physically ill for up to two weeks in assisted living or nursing home Provide Medicare and insurance coverage to support hired aides to enable respite care in a person’s or family’s home Bereavement support to spouse and family through health care system and aging services
and the need to give up treatments directed at the disease and intended to prolong life. Eighty-five percent would require the National Institutes of Health to spend at least 1% of annual appropriations on pain and palliative care research (Table 6).
Support for Family Caregivers The need to support family caregivers was clearly recognized as high priority by Citizen Forum participants. Eighty-seven percent would expand employee benefits for family leave to encompass caregiving for an ill parent or other relative. Eighty-one percent supported extending Medicare coverage to individuals who lose employer-based health insurance due to caring for a Medicare-eligible family member. Eighty-seven percent favored extending respite care for frail elders or physically ill people for up to 2 weeks in an assisted living or nursing home; and 81% would favor Medicare and insurance support
n
%
n
%
n
%
9 1
2.1 0.6
17 11
4 7
31 18
7 12
4
0.9
17
4
33
11
3.0
31
8
4
2.7
3
2
Agree n
%
Strongly Agree n
%
125 29 47 31
251 77
58 50
8
151 36
217
51
27
7
115 31
187
50
23
15
41 27
79
53
for hiring aides for respite care in a family’s home. Eighty percent of participants favored providing bereavement support to spouses and grieving family members through health care system and aging services (Table 7).
Rural Care for Seriously Ill People and Their Families Citizen Forum participants said they want to direct attention of policy makers to the special challenges of aging, caregiving, and dying in rural communities. The vast majority (97%) of participants indicated they would require pharmacies serving rural communities to carry basic medications needed for pain management and palliative care. Eighty-seven percent favored having Medicare and Institutes on Health fund and test regional models of hospice care for rural residents (Table 8).
Public Preferences to Address Aging, Dying, and Family Caregiving / Byock et al
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Table 8. Rural Care for People With Serious Illness and Their Families Strongly Disagree
Require pharmacies serving rural communities to carry basic medications needed for pain management and palliative care Medicare and Institutes on Health should fund and test regional models of hospice care for rural residents
Disagree
No Opinion
Agree
n
%
n
%
n
%
n
4
1.0
3
0.8
8
2.1
4
0.9
8
1.8
45
10.3
Discussion and Implications Issues that affect vast majorities of our population, such as health care reform and the economy, often have clear policy implications and command attention of policymakers and candidates for state and federal offices. Despite well-documented deficiencies of health care and social services people experience during serious illness, the frailty of advanced age and in caregiving for family members, and the virtually universal relevance of these issues, to date these topics have commanded little attention among candidates for public office. Cultural aversion may partially underlie the reluctance to engage these problems. Issues that surround aging, dying, and caregiving understandably evoke anxieties and negative emotions. Corresponding deep-seated cultural tendencies lead people to avoid subjects of this nature, particularly in public discussions. Policymakers may feel that the issues are too depressing to address in open forums. Additionally, despite formal recommendations by the Institute of Medicine and other expert panels, agencies and advocacy groups, the challenges of delivering reliable, high quality services to these vulnerable populations may seem daunting and overly complex to address in campaigns in which candidates seek to deliver clear, uncomplicated and upbeat messages and policy agendas. This study challenges those assumptions. Audience-response technology and item prompts enabled participants to readily engage in substantive consideration of issues pertinent to aging, end-of-life care, and caregiving. Once engaged, participants expressed clear values and concerns they have about the types and quality of care and support that they or their family members will receive, and the impact the frailty of their age or illness will have on their children and others. Participants endorsed specific changes in laws, regulation, and policies to expand
%
Strongly Agree n
%
73 19.2
293
76.9
194 44.6
184
42.3
access to and improve quality of health care and social services. These included changes in medical and nursing education, licensure of clinical professionals, revision of Medicare hospice eligibility, staffing in long-term care, expansion of assisted-living alternatives, support for family caregivers and attention to the special challenges of rural residents. Methodological constraints limit the interpretation of these findings as population-based research or as a broad survey of public opinion. However, characteristics of participants are consistent with attributes of likely voters. Participants were selfselected and sufficiently motivated to invest mote than 2 hours of time in these public meetings. As a group they were well-educated, mostly middle-aged or older. More than 75% of participants were adult women. Given the subjects of the Citizen Forums, the preponderance of women is not surprising. The majority of family caregivers are women. By and large, women outlive men and are, therefore, also more likely to live alone, without a spouse to care for them, and are more reliant on social services. (US Centers for Disease Control and Prevention [CDC], Accessed March 27, 2008.) Candidates for public office may avoid end-oflife issues because the circumstances in which people age, are cared for and die, and the improvements in access to and quality of care, family support envisioned are beyond the scope of legislation and executive orders. Indeed, the problems that confront aged and ill people and their families have far-reaching social and cultural dimensions. However, politicians and their policies can exert substantial influence on the political and regulatory climate in which services to frail elders and chronically ill people are provided, paid for, and overseen by public and private sectors. In setting policy and the tone of government, elected officials also influence the tenor of their times and can contribute to social and cultural maturation related to aging, dying, and caring.
8 American Journal of Hospice & Palliative Medicine1 / Vol. 000, No. 00, Month 2009
Conclusion The information provided in this report suggests that the public is both interested and able to engage these topics in ways that may make them attractive for policy makers and candidates for elected office. These findings can assist candidates and policymakers in translating these culturally charged and complex problems into meaningful and actionable policy proposals. The findings of these Citizen Forums indicate that segments of the public may be ahead of political leaders in being eager and able to engage issues of aging, illness, and caregiving in substantive ways that carry health care and social policy implications. By acknowledging and deliberately avoiding discrete, divisive issues such as physician-assisted suicide and religious beliefs and practices regarding end-of-life care, substantive policy initiatives can be crafted to address deficiencies in clinical training, licensure, staffing, and access to services that affect millions of American families. Data of this nature illuminate a potential path around polarizing issues, enabling candidates and elected officials to advance substantive, readily understandable specific actions with broad support for expanding access and improving quality of services to people facing life’s end. Candidates for office seek to identify issues they can advance that have broad relevance and can be translated into concrete, actionable policy initiatives with achievable results. Matters of aging, end-of-life care, and family caregiving fulfill these criteria and provide candidates with opportunities to assert political, social, and cultural leadership.
Acknowledgments We thank James E. Tracy, MT(ASCP), MPH, for his steadfast assistance in data collection.
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