AARP North Carolina End of Life Survey

Transcription

Published July 2003
AARP North Carolina
End of Life Care Survey
Report Prepared by
Gretchen Straw, Ph.D. and Rachelle Cummins, M.A.
Copyright © 2003
AARP
Knowledge Management
601 E Street NW
Washington, DC 20049
http://research.aarp.org
Reprinting with Permission
AARP is a nonprofit, nonpartisan membership organization dedicated to making life better for
people 50 and over. We provide information and resources; engage in legislative, regulatory and
legal advocacy; assist members in serving their communities; and offer a wide range of unique
benefits, special products, and services for our members. These include AARP The Magazine,
published bimonthly; AARP Bulletin, our monthly newspaper; AARP Segunda Juventud, our
quarterly newspaper in Spanish; NRTA Live and Learn, our quarterly newsletter for National
Retired Teachers Association members; our Web site, www.aarp.org. We have staffed offices in
all 50 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands.
The Carolinas Center for Hospice and End of Life Care champions the highest quality end of life
care across every stage of life, by providing leadership, partnership, education and resources. In
addition to serving as the association for hospices in the Carolinas, The Carolinas Center
provides resources for consumers and healthcare professionals on advance care planning and
other end of life care. Our Web site, www.carolinasendoflifecare.org, offers brochures and
guides to advance care planning, and information about certified advance care planning
instructors, along with hospice and end of life resources.
Acknowledgements
This study is the result of a partnership between AARP North Carolina and The Carolinas Center
for Hospice and End of Life Care. Special thanks for their leadership and vision go to Suzanne
LaFollette-Cameron, MASA, Associate State Director, AARP North Carolina and Gwynn B.
Sullivan, RN, MSN, Director of NC Community Outreach, The Carolinas Center for Hospice
and End of Life Care. We also express our gratitude to Kaye Norris, Ph.D., Director of
Research, Life’s End Institute, for sharing the Missoula Demonstration Project Community
Survey which we used to design this study. Other contributors we wish to thank for their
comments on drafts of the survey or this report include Dee Leahman, Myra Christopher, Judi
Lund Person, Gwen London, Bill Lamb, Ellen Cameron, Karen Steinhauser, Karen Kaplan, and
Laurie Saxton.
AARP staff from the North Carolina State Office, Life Answers, and Knowledge Management
contributed to the design and implementation of this study. We thank Bob Jackson, State
Director, AARP North Carolina; Scott Melton and Elinor Ginzler, AARP Life Answers; Debbie
Gann, Anu Rawlins, Gretchen Straw, Linda Barrett, Darlene Matthews, Cassandra Cantave
Burton, Cheryl Barnes, and Jennifer Leslie, AARP Knowledge Management. Heather
Woodward of FGI, Inc. managed pre-testing the survey instrument as well as data entry and
tabulation of the final survey results. Rachelle Cummins, AARP Knowledge Management,
managed this study. For more information, contact Rachelle Cummins at (202) 434-6297 or
[email protected].
Highlights
The AARP North Carolina End of Life Care Survey provides a comprehensive view of
the concerns and attitudes toward end of life issues of AARP members age 50 and older
in North Carolina. The survey was conducted in November and December 2002. A total
of 3,586 AARP members responded yielding a 45 percent response rate.
Talking and Thinking About Death
• Eighty-six percent of North Carolina AARP members report being at least somewhat
comfortable talking about death. Most say they are likely to attend funerals or
memorials and to telephone or visit friends or relatives who have lost a loved one.
• However, half indicate they have not talked about their own wishes for end of life
care with anyone other than family.
• Only 11 percent report that they have talked with their physicians about their wishes
for end of life care.
End of Life Concerns
• Members are concerned about various end of life scenarios:
o Almost 90 percent say that total physical dependency would be worse than
death, and 70 percent or more say that not being able to communicate their
wishes or that living with great pain is worse than death.
o Three-quarters of North Carolina AARP members fear dying painfully, and
three-fifths fear dying from a long illness.
o Seventy-one percent are concerned that they will be a burden to family and
friends.
Pain Management
• In spite of concerns about pain, AARP members do not want to take too much pain
medication:
o Three-quarters agree that they would only take pain medicine when the pain
is severe, and seventy-one percent agree that they would take the lowest
amount of medicine possible and save larger doses for later when the pain
is worse.
o One-third fear becoming addicted to pain medicine.
AARP North Carolina End of Life Care Survey; July 2003
1
End of Life Needs
• At least eight in ten AARP members in North Carolina rate the following as very
important when dealing with their own dying or thinking about dying:
o Honest answers from doctors (91%)
o Understanding treatment options (88%)
o Not being a burden to your loved ones (88%)
o Knowing what medicines are available (85%)
o Having things settled with your family (85%)
o Being at peace spiritually (83%)
o Getting your finances in order (80%)
Advance Care Planning
• Although 79 percent of members say it is important to be off machines that extend life
such as life support, reported actions do not always reflect this:
o Only about one-half have an advance directive.
o Fewer than one in ten are aware of the Advance Health Care Directive Registry
in North Carolina, and about the same percentage indicate that they are
unlikely to use it (42%) as say they are likely to use it (39%).
Support from Others
• When asked about support they expect to need near the end of their lives, AARP
members in North Carolina report a variety of needs:
o Listen to them (90%)
o Provide transportation (87%)
o Know about the illness (87%)
o Know what they want when they die (86%)
o Help with chores (84%)
o Encourage them when they are down (84%)
o Understand what they are going through (80%)
o Do fun things with them (74%)
o Help care for other relatives (70%)
• At least three-quarters expect their children to provide each type of support, and
almost as many expect their spouse/partner to provide these types of support. Many
members expect support from others as well, including the faith community, friends
and neighbors, and their health providers.
2
Hospice Services
• More than 90 percent say they have heard of hospice, although only a quarter knows
that Medicare pays for it.
• Awareness of hospice usually comes from knowing someone who used hospice
services (71%).
• Among those who know about hospice, three-quarters would want hospice support if
they were dying.
Spirituality/Religiosity
• More than 80 percent of members rate themselves as at least somewhat
spiritual/religious.
o In dealing with their own dying, 83 percent say it is very important to be at
peace spiritually.
o Sixty-two percent say it is very important to have comfort from spiritual or
religious persons.
• However, only six percent have spoken with clergy about their end of life wishes.
3
Background
To improve end of life experiences, AARP engages in education, information, advocacy,
research, volunteer engagement, and partnerships with key external stakeholders. AARP
wants to help people and their families, especially with advance directives, palliative
care, and bereavement support. In 2002, AARP North Carolina and The Carolinas Center
for Hospice and End of Life Care joined together to
•
•
•
•
Educate and help people prepare themselves for end of life
Inform people about legal documentation and sharing their wishes
Conduct outreach within the community on end of life issues
Advocate with legislators and attorneys general about the importance of end of life
issues
To better understand how various people deal with end of life issues both privately and
within their communities, this survey explores AARP members’
• Thoughts about death and dying
• Preparation and planning for death
• Opinions about dealing with the physical, psychological, financial, and spiritual
aspects of dying
• Need for support from people or organizations at the end of life
• Awareness of hospice at the end of life
The survey is based on the Life’s End Institute: Missoula Demonstration Project’s
Community Survey. AARP mailed the questionnaire in November/December 2002 to a
random sample of 8,000 AARP members in North Carolina. More than 3,500 responded
for a response rate of 45 percent. The survey has a sampling error of plus or minus 1.7
percent.
4
Detailed Findings
Talking and Thinking About Death
Most respondents report that during their childhood their families rarely (39%) or never
(12%) talked about death and dying. About one-third says their families had such
discussions occasionally (36%), while only seven percent had them often.
Nonetheless, most North Carolina AARP members say they are at least somewhat
comfortable talking about death (47% very comfortable and 39% somewhat
comfortable), and most are at least somewhat likely to speak freely to loved ones about
death and dying (36% very likely and 42% somewhat likely). More than half (53%) are
very comfortable thinking about life after death.
About 80 percent of members agree that dying is an important part of life and that there is
special value in getting old. Over half agree that caring for people who are dying is a
rewarding experience, and about half disagree with the statement that “I don’t know how
people make peace with themselves before dying.” However, about half (46%) would
not want to know if someone could tell them when they would die.
Opinions on Dying
n = 3,586
Dying is important part of life
54%
41%
Special value in getting older
Caring for dying is rewarding
38%
26%
Would want to know when I'll die
Don't know how people make peace
before dying
30%
21%
34%
17%
8% 22%
0%
Strongly agree
20%
40%
60%
80%
100%
Somewhat agree
5
The survey explored the likelihood that members would engage in a wide range of
actions related to death and dying.
• When a death occurs, the vast majority of members say they are likely to attend
funerals or memorial services and to visit or telephone a friend or relative who has
recently lost a loved one in order to see how they are doing.
• Slightly over half are at least somewhat likely to watch a television program or movie
dealing with the subject of death and dying (55%), although fewer than half are likely
to read a book on the subject (41%).
• Very few members are likely to avoid medical checkups because of fear that the
doctor will find something serious (3% very likely and 7% somewhat likely).
Likelihood of Taking Actions
n = 3,586
Contact bereaved
53%
36%
Attend funeral/svc.
53%
34%
Watch TV/movies
on topic
17%
Read books on
topic
13%
38%
28%
Avoid checkup * 7%
0%
20%
40%
Very likely
60%
80%
Somewhat likely
* Less than 5%
6
100%
Although 86 percent report being comfortable talking about death and dying, family
members are the only people with whom many AARP members in North Carolina have
spoken about their own end of life wishes.
Analysis of the list shows that about half (46%) have talked only with their
spouse/family. A similar proportion (42%) has spoken to someone in addition to his or
her spouse or family.
People Talked to about End of Life Wishes
(multiple answers allowed)
n = 3,586
Family other than spouse-partner
62%
Spouse-partner
60%
Lawyer
23%
Friends
20%
Primary MD
11%
Clergy
6%
Other
3%
Nobody
11%
0%
20%
40%
60%
80%
100%
7
End of Life Concerns
Members were asked whether three potential health problems were worse than death
itself. Eighty-seven percent say total physical dependency on others, such as being in a
coma, is worse than death. Seventy-three percent indicate that not being able to
communicate their wishes or care to family and friends is worse than death, and 70
percent say that living with great pain is worse. Only six percent said that none of those
problems was worse than death.
Indeed, when asked about fears related to death, a similar picture emerges. Seventy-four
percent of members fear dying painfully, two-thirds fear dying from a long illness, and
half fear dying in an institution. In contrast, only 21 percent fears dying suddenly.
Fear
n = 3,586
Dying painfully
39%
Dying from a long illness
23%
Dying in an institution
21%
Dying alone
41%
30%
13%
Dying suddenly 5%
35%
28%
16%
0%
20%
40%
Very afraid
60%
80%
Somewhat afraid
Member concerns about the end of life are not limited to concerns about the process of
dying. Over half of members are concerned about being a burden to family and friends
and about financial issues.
Concerns
n = 3,586
I'll be a burden
38%
My money won't last
27%
My family's money
won't last
36%
23%
0%
32%
20%
Very concerned
8
33%
40%
60%
80%
Somewhat concerned
100%
100%
Pain Management
If they could choose how and where they would die, a majority of AARP members in
North Carolina say they would prefer to die while sleeping (64%) and at home (59%).
The second most often selected option of “how” would be a sudden death (17%), and the
second most often selected option for “where” would be a hospital (11%). Relatively few
members say they have no preference (11% as to how, and 15% as to where).
One of members’ biggest fears, as already noted, is that of dying painfully. However,
many indicate that they might restrict their pain medications.
• Three in four say they would only take pain medication when the pain is severe.
An equally large number say they would take the least amount possible, saving
larger doses for when pain worsens.
• Thirty-five percent of members fears becoming addicted to pain medications.
Opinions on Pain Management
n = 3,586
39%
Would take only when pain is severe
Would take lowest dose possible and
save the rest
Fear MD might not believe I'm in pain
36%
13%
Fear addiction to pain meds. 11%
Fear getting too much pain medicine
36%
35%
32%
24%
8% 21%
0%
Strongly agree
20%
40%
60%
80%
100%
Somewhat agree
9
End of Life Needs
The survey asked members to rate the importance of numerous other aspects of their own
dying.
• Several of their most important issues relate to the medical aspects of death, such
as getting honest answers from their doctors, understanding options for treatment,
and knowing about the available medicines.
• Also among key issues are family and finances: not being a burden, having things
settled with the family, and getting finances in order.
• Spiritual peace also is very important to a large majority of members.
Very Important Aspects of Dealing
With or Thinking about Dying
(For at Least 80% Members)
n = 3,586
91%
Honest answers from MDs
Not being burden
88%
Understanding treatment options
88%
Knowing what meds. available
85%
Things settled with family
85%
At peace spiritually
83%
80%
Finances in order
0%
10
20%
40%
60%
80%
100%
A second set of issues is rated very important by about 60 to 80 percent of AARP members.
• Freedom from pain and being physically comfortable are very important to
three-quarters of members.
• Seven in ten emphasize the importance of having family and friends visiting
them and knowing how to say goodbye.
• Six in ten emphasize the importance of being able to stay at home, getting
comfort from religious/spiritual persons, and having a sense of self-worth.
Very Important Aspects of Dealing
With or Thinking about Dying
(For at Least 60% - 80% Members)
n = 3,586
Free from pain
76%
Physical comfort
76%
Visits from family/friends
70%
Knowing how to say goodbye
69%
Ability to stay home
62%
Comfort from spiritual persons
62%
Sense of self-worth
61%
0%
20%
40%
60%
80%
100%
Other aspects of the end of life are at least somewhat important to a majority of AARP members;
however, they are not rated ‘very important’ as frequently as the aspects just mentioned.
• Eighty-six percent indicate that it is at least somewhat important to give to
others in time, gifts, or wisdom – half (55%) rate this very important.
• Eighty-six percent say that having in-home visits from healthcare professionals
would be important; 55 percent say very important.
• Three-quarters want to be able to fulfill personal goals and pleasures; almost
half (46%) say this would be very important.
• The ability to review their life history with their family is important to 60
percent, with just over one-quarter (28%) rating it very important.
11
Advance Care Planning
As noted earlier, many AARP members in North Carolina have clear end of life wishes. For
example, 79 percent say it is very important to be off machines that extend life, such as life
support. But, many have not translated end of life wishes into action through advance
directives.
• Just over half (51%) say they have completed a living will and a similar proportion
(47%) has completed a health care power of attorney (HCPA). Since most people
who have done one of these also have done the other, the net is that a slim
majority (55%) has a living will or HCPA or both.
Advance Directives
n = 3,586
HCPA
47%
Living will
44%
51%
0%
20%
7%
45%
40%
60%
80%
*
100%
Completed
Heard of but haven't completed
Haven't heard of
* Less than 5%
The survey also described the North Carolina Advance Health Care Directive Registry
that is available online or by contacting the Secretary of State. Eight percent of members
say they are aware of it, and reactions to using it are mixed overall. When told that it
costs $10 per document to register, as many members say they might not use it (42%) as
might (39%).
• However, further examination reveals that half (52%) the members who do not
already have an advance directive express some likelihood of using the Registry,
compared to one-third of those who have already completed an advance directive.
12
The survey also included other aspects of advance planning, such as having a will,
registering to donate organs and tissue, and preplanning of funerals and purchasing of
burial plans.
• As noted earlier, over three-quarters of members (78%) say wills are very
important, and a similar proportion says they have completed one.
• Four in ten members say they have signed up to donate organs/tissue for use by
others in need of transplants.
• One-fourth report having a funeral or burial preplan in which they plan or
purchase in advance any goods or services.
Wills, Donate Organ/Tissue, Burial Preplan
n = 3,586
Will
74%
Signed up to donate
organ/tissue
39%
Burial Preplan
0%
Completed
*
56%
24%
*
72%
20%
40%
*
23%
60%
Heard of but haven't completed
80%
100%
Haven't heard of
*Less than 5%
13
Support from Others
The survey asked respondents which of nine types of support they expected to need near
the end of their lives, ranging from helping with chores to encouragement to listening
when they talk. Then, for each type of support, we asked members who should provide
it. The provider list included eight possibilities, again with a wide range from family to
community to faith organizations.
At least seven in ten expect to need each type of support: ranging from a “low” of 70
percent who expect to need help caring for other family members to a “high” of 90
percent who say they need someone to listen to them.
Support That Members Expect to Need Near End of Life
n = 3,586
Listen when I talk
90%
Provide transportation
87%
Know about my illness
87%
Know what I want when I die
86%
Help with chores
84%
Encourage me when I'm down
84%
Understand what I’m going through
80%
Do fun things with me
74%
Help care for other fam. members
70%
0%
20%
40%
60%
80%
100%
Some of the sources of support are seen as playing many different roles, while others are
seen as more specialized:
• As expected, the vast majority of members expect each type of support from their
immediate family.
14
• Beyond this, members typically expect most types of help from friends/neighbors
and other family members. Knowing what they want when they die and caring
for other family members are more family-based than non-family-based.
Conversely, doing fun things with the dying person is expected somewhat more
from friends and neighbors than other family members.
• At least four in ten say the faith community should support them through
listening, encouragement, and understanding – along with ‘knowing about my
illness.’
• Approximately half the members say that health providers’ roles are listening,
understanding what the person is going through, and knowing about the illness.
• One-fourth say community organizations should support them through
transportation services and help with chores.
• Few expect any of these supports from work associates.
Who Should Provide Various Types of Support
Listen when I talk
(n=3,236)
Transportation
(n=3,129)
Know my illness
(n=3,115)
Know my desires
when I die
(n=3,063)
Help with chores
(n=2,999)
Encourage me
(n=3,024)
Understand what
I’m going through
(n=2,869)
Do fun things with
me (n=2,657)
Help care for my
family (n=2,515)
Children
Spousepartner
Other
family
Friends/
neighbors
Faith
cmty.
Health
providers
Community
orgs.
Work
assoc.
84
74
44
40
41
53
7
6
77
72
37
44
27
27
25
4
84
74
55
47
41
51
9
8
84
74
37
22
26
23
3
2
79
74
39
42
25
24
24
4
82
74
55
62
53
36
12
9
78
73
51
47
42
46
10
6
83
76
50
61
30
10
11
6
77
63
51
38
36
25
17
4
15
Hospice Services
Reported awareness of hospice services is widespread, with 58 percent indicating that
they have heard a lot about hospice and another 35 percent reporting they have heard a
little.
• Nonetheless, only 24 percent are aware that Medicare pays for hospice services,
and 56 percent say they are not sure whether it does.
• Members who heard about hospice typically say they learned about it from
someone who used hospice services (71%). About half (53%) say they heard about
it from others. A large minority – 44 percent - indicate that the media or literature
were their sources of awareness, but fewer mention other sources such as health
care professionals (17%), using hospice themselves (6%), or being hospice
volunteers (3%).
• Three-quarters of members who have heard of hospice report that they would want
hospice support if they were dying. When asked where they would want to receive
the hospice support, 88 percent who would want hospice support indicate that they
would want it in their own home.
• Forty-three percent say they would be interested in hearing more about hospice
services, and an additional 23 percent say they are not sure if they would. Twentynine percent express a lack of interest in more information.
Where They Would Want Hospice Support
(multiple answers allowed)
base = 2,484 who want hospice support
Own home
88%
Hospice residence
41%
Resid. facility such as assisted living
29%
Hospital
28%
Nursing home
20%
0%
16
20%
40%
60%
80% 100%
Spirituality/Religiosity
Members report a high degree of spirituality/religiosity. Just over one in three rate
themselves as very religious/spiritual, and about half say they are somewhat
religious/spiritual.
It is not surprising then that 83 percent say it is very important to be at peace spiritually
when you think about dying. Furthermore, 62 percent think that comfort from
religious/spiritual services or persons would be very important when dealing with their
own dying.
Importance of Spiritual/Religious Peace and Comfort
n = 3,586
Comfort from
relig/spirit
services/persons
62%
Being at peace
spiritually
21%
83%
0%
20%
40%
Very important
9%
60%
80%
Somewhat important
100%
Nevertheless, only six percent of members have talked with clergy about their wishes for
care at the end of their life.
17
Conclusions
This survey of AARP members in North Carolina indicates that many of them have
thought about and talked to their immediate family about end of life issues. However,
fewer have taken the steps that could help to ensure that their end of life concerns and
desires are addressed. Only a slim majority has completed an advance directive, and
only 42 percent have talked about their end of life wishes with someone in addition to
a family member. While many say they will want their health providers or faith
community to listen and understand when they near the end of life, few have talked
about their wishes for care with their physicians or clergy. Many report that they are
afraid of dying painfully but, at the same time, many also indicate that they are afraid
of over-medication and/or addiction to pain medicines. Another observation is that
while over half have heard a lot about hospice only a quarter know that Medicare pays
for hospice. In summary, what this survey shows is that AARP members are willing
to think and talk about end of life issues, but they need some help to start
conversations and understand end of life care issues. Therein lie the opportunities for
AARP and The Carolinas Center for Hospice and End of Life Care.
Methodology
In November 2002, AARP conducted a mail survey of AARP members age 50 and older
in North Carolina. Each respondent was contacted four times receiving the following
pieces of mail: a pre-notification postcard, the survey, a reminder postcard, and a second
survey. From a random sample of 8,000 members selected from AARP’s membership
database, a total of 3,586 completed surveys were returned by the cutoff date of
December 6, 2002, yielding a 45 percent response rate.
The survey has a sampling error of plus or minus 1.7 percent. This means that in 95 out
of 100 samples of this size, the results obtained in the sample would fall in a range of +
1.7 percentage points of what would have been obtained if every North Carolina member
age 50 and older had been surveyed. Minor weights were applied to the survey results to
reflect the distribution of age in the membership of North Carolina. All percentages in
this report and the annotated survey are based on the weighted data.
For more information about this study, contact Rachelle Cummins, AARP Knowledge
Management, at (202) 434-6297 or [email protected].
18
Annotated Questionnaire
19
North Carolina End of Life Survey
This survey is about end of life issues such as the kind of care you want, the wishes
you have, and the choices you’ll make regarding end of life care. We understand that
some of these topics may be sensitive, and we greatly appreciate your participation in
this study. Your responses are critical in helping the state of North Carolina and
AARP support people like yourself when dealing with these issues.
UNWEIGHTED N = 3,586 AARP MEMBERS, RESPONSE RATE = 45%
SAMPLING ERROR = +/- 1.7 %
(Data were weighted by age. Percentages may not add to 100% due to rounding or multiple responses. A
“*” means less than 1%.)
Thoughts about Death and Dying
1. During your childhood, how often were death and dying talked about in your
family?
%
7
36
39
12
6
1
Often
Occasionally
Rarely
Never
Can’t remember
No Response
2. Below are concerns relating to end of life that have been expressed by people age 50 and older.
How comfortable are you with…
a. Talking about death
Very
comfortable
Somewhat
comfortable
Not very
comfortable
Not at all
comfortable
Not
sure
No
Response
47%
39%
10%
1%
1%
2%
65%
20%
6%
2%
3%
4%
53%
27%
7%
2%
8%
3%
b. Writing my own will if I
thought my death would
occur soon
c. Thinking about life after
death
20
3. How likely are you to…
Very
likely
Somewhat
likely
Not very
likely
Not at all
likely
Not
sure
No
Response
a.
Attend funerals or
memorial services
53%
34%
9%
2%
*
2%
b.
Read books that deal
with the subject of death
and dying
13%
28%
35%
20%
2%
3%
Watch television
programs or movies that
deal with the subject of
death and dying
17%
38%
28%
14%
1%
3%
Avoid medical checkups
because I am afraid the
doctor will find
“something serious”
3%
7%
18%
70%
1%
2%
Speak freely to loved
ones about death and
dying
36%
42%
14%
5%
1%
2%
Visit or telephone a
friend or relative who
has recently lost a loved
one in order to see how
they are doing
53%
36%
7%
2%
1%
2%
Preplan my own funeral
37%
32%
16%
9%
3%
4%
Very
afraid
Somewhat
afraid
Not very
afraid
Not at all
afraid
Not
sure
No
Response
c.
d.
e.
f.
g.
4. How afraid, if at all, are you of…
a.
Dying from a long-term
illness
23%
41%
19%
10%
5%
2%
b.
Dying suddenly
5%
16%
34%
39%
3%
3%
c.
Dying alone
13%
28%
28%
22%
6%
3%
d.
Dying in an institution
such as a nursing home
or hospital
21%
30%
25%
17%
5%
2%
Dying painfully
39%
35%
13%
7%
5%
2%
e.
21
5. How strongly do you agree or disagree that…
Strongly
agree
Somewhat
agree
Somewhat
disagree
Strongly
disagree
Not
sure
No
Response
a.
There is a special value
in getting old
41%
38%
11%
5%
3%
2%
b.
Dying is an important
part of life
54%
30%
6%
4%
4%
3%
c.
If someone could tell me
when I would die, I
would want to know
21%
17%
14%
32%
14%
3%
Caring for people who
are dying is a rewarding
experience
26%
34%
17%
11%
10%
2%
I don't know how people
make peace with
themselves before dying
8%
22%
20%
31%
17%
3%
d.
e.
6. When you think about death and dying, how concerned are you that…
Very
concerned
Somewhat
concerned
Not very
concerned
Not at all
concerned
Not
sure
No
Response
My (or my
spouse/partner's) money
won’t last
27%
36%
21%
12%
1%
3%
b.
My family’s money
won't last
23%
32%
24%
15%
3%
4%
c.
I will be a burden to my
family or friends
38%
33%
16%
9%
2%
2%
a.
7. Which of the following health problems, if any, do you think are worse than
death? Check ALL that apply
%
70
87
73
6
22
Living with great pain
Total physical dependency on others, such as being in a coma
Not being able to communicate my wishes and/or care to family and friends
None are worse than death
Advance Planning and Preparation
8. Advance directives allow people to make their health care choices known in
advance of an incapacitating illness or death. Which of the following advance
directives and other pre-plans have you heard about and completed?
a.
b.
c.
d.
e.
Have heard
about and
completed
Have heard
about but not
completed
Have not
heard
about
No
Response
A Health Care Power of
Attorney (HCPA) in which you
name someone to make
decisions about your health care
in the event you become
incapacitated
47%
44%
7%
3%
A living will in which you state
the kind of health care you want
or don’t want under certain
circumstances
51%
45%
2%
2%
A will or last will and testament
that controls how your assets are
to be distributed
74%
23%
1%
2%
Funeral or burial pre-plans in
which you plan or purchase in
advance any goods or services
for yourself
24%
72%
2%
3%
Signing up to have your organs
and/or tissue donated after you
die for use by others in need of
transplants
39%
56%
2%
3%
23
9. Whether you have completed any advance directives/pre-plans or not, with
whom have you talked about your wishes for care at the end of your life?
Check ALL that apply
%
60
Spouse/partner
62
Family
20
Friends
23
Lawyer
11
Primary physician
6
Clergy (such as minister, rabbi, etc.)
3
Other
11
Have not talked with anyone
10. The North Carolina Secretary of State has established an Advance Health Care
Directive Registry that is available by contacting the North Carolina Secretary of
State or online via a computer at www.NCLifelinks.org. It allows North
Carolinians to obtain and file up to four different advance directives: a living will, a
Health Care Power of Attorney, an advance instruction for mental health
treatment, and a declaration of organ donation. The documents are secure and
password protected.
Were you aware that North Carolina has an Advance Health Care Directive Registry?
%
8
86
5
2
Yes
No
Not sure
No Response
11. How likely would you be to file your advance directives through this system that
costs $10 per document to register?
%
15
24
24
18
16
3
24
Very likely
Somewhat likely
Not very likely
Not at all likely
Not sure
No Response
Dealing with Dying
12. How important would each of the following be to you when dealing with your own
dying?
Very
important
Somewhat
important
Not very
important
Not at all
important
Not
sure
No
Response
a.
Family/friends visiting
you
70%
21%
4%
1%
1%
3%
b.
Being able to stay in your
home
62%
25%
7%
2%
2%
3%
c.
Honest answers from
your doctor
91%
6%
*
*
1%
3%
d.
Comfort from
religious/spiritual
services or persons
62%
21%
8%
6%
1%
3%
e.
Knowing medicine was
available to you
85%
10%
1%
1%
1%
3%
f.
Planning your own
funeral
38%
32%
18%
6%
3%
3%
g.
Being able to complete
your will
78%
13%
2%
2%
1%
5%
h.
Fulfilling personal
goals/pleasures
46%
31%
13%
4%
2%
4%
Reviewing your life
history with your family
28%
32%
26%
8%
3%
3%
Having health care
professionals visit you at
your home
55%
31%
7%
2%
2%
3%
Getting your finances in
order
80%
14%
2%
1%
*
3%
Understanding your
treatment options
88%
8%
1%
*
*
3%
Giving to others in time,
gifts, or wisdom
55%
31%
6%
2%
2%
3%
i.
j.
k.
l.
m.
25
13. How important are each of the following to you when you think about dying?
Very
important
Somewhat
important
Not very
important
Not at all
important
Not
sure
No
Response
a.
Being physically
comfortable
76%
20%
1%
*
*
3%
b.
Being free from pain
76%
19%
1%
*
*
3%
c.
Having things settled
with the family
85%
10%
1%
*
*
3%
d.
Being at peace
spiritually
83%
9%
3%
2%
1%
2%
e.
Not being a burden to
loved ones
88%
8%
1%
*
*
2%
f.
Knowing how to say
goodbye
69%
20%
5%
1%
2%
3%
g.
Having a sense of
your own worth
61%
24%
8%
2%
2%
4%
h.
Being off machines
that extend life such
as life support
79%
11%
2%
1%
4%
2%
14. If you could choose the ONE way you die, what would your choice be?
Check ONE answer only
%
17
Sudden death
1
Long-term illness
64
Death while sleeping
*
Other (specify)_________________________________
11
I have no preference
3
No Response
15. If you were terminally ill and could choose where to die, where would you
MOST want to die? Check ONE answer only
%
59
3
11
1
10
15
3
26
At home
In an assisted living facility
In a hospital
In a nursing home
In a residential hospice (hospice services provided by a hospice owned facility)
I have no preference
No Response
16. Below are some statements related to pain near the end of life that have been
expressed by people age 50 and older. How strongly do you agree or disagree
with each statement?
a.
b.
c.
d.
e.
Strongly
agree
Somewhat
agree
Somewhat
disagree
Strongly
disagree
Not
sure
No
Response
I am afraid my doctor
may not believe I am
in pain and treat my
pain
13%
32%
25%
20%
7%
3%
I would only take pain
medicines when the
pain is severe
39%
36%
12%
9%
2%
2%
I am afraid I will
become addicted to the
pain medicines over
time
11%
24%
25%
33%
5%
3%
I would take the
lowest amount of
medicine possible to
save larger doses for
later when the pain is
worse
36%
35%
12%
10%
5%
2%
I am afraid I would be
given too much pain
medicine
8%
21%
31%
30%
8%
2%
27
Support from Others
17. When people near the end of life, they may need support from others. Which of
the following types of support do you expect to need when near the end of your
life, and who should provide it to you? Please check whether you will need the
type of support or not, and if you need the support, who should provide it.
a.
b.
c.
28
Listen when I talk
%
90 Yes
4 No
If YES, who should provide this type of support?
Check ALL that apply (based on Yes to item 17a. n=3,176)
%
%
74 Spouse/partner
7 Community organizations
84
Children
53 Health providers
44
40
6 Work associates
Other family
Friends/neighbors 41 Faith community
Provide transportation
%
87 Yes
Check ALL that apply ((based on Yes to item 17b. n=3,073)
4 No
%
%
72 Spouse/partner
Help with chores
%
84 Yes
6 No
77
Children
27 Health providers
37
44
4 Work associates
Other family
Check ALL that apply (based on Yes to item 17c. n=2,946)
%
%
74 Spouse/partner
79
Children
24 Health providers
39
42
4 Work associates
Other family
17. Continued -- When people are near the end of life, they may need support from
others. Which of the following types of support do you expect to need when near the
end of your life, and who should provide it to you? Please check whether you will
need the type of support or not, and if you need the support, who should provide it.
d.
Do fun things with me
%
74
18
e.
Yes
No
Check ALL that apply (based on Yes to item 17d. n=2,610)
%
%
76 Spouse/partner
83 Children
10 Health providers
50 Other family
61 Friends/neighbors
6 Work associates
30 Faith community
Know what I want when I die
%
86
6
f.
Check ALL that apply ((based on Yes to item 17e. n=3,007)
%
%
74 Spouse/partner
Yes
No
84 Children
23 Health providers
37 Other family
2 Work associates
26 Faith community
Help care for other family members
%
70
18
g.
Yes
No
Check ALL that apply (based on Yes to item 17f. n=2,473)
%
%
63 Spouse/partner
77 Children
25 Health providers
51 Other family
4 Work associates
36 Faith community
Encourage me when I’m down
%
84
8
Yes
No
Check ALL that apply (based on Yes to item 17g. n=2,968)
%
%
74 Spouse/partner
82
Children
36 Health providers
55
62
Other family
Friends/neighbors
9 Work associates
53 Faith community
29
17. Continued -- When people are near the end of life, they may need support from
others. Which of the following types of support do you expect to need when near the
end of your life, and who should provide it to you? Please check whether you will
need the type of support or not, and if you need the support, who should provide it.
h.
Understand what I’m going through
%
80 Yes
Check ALL that apply ((based on Yes to item 17h. n=2,813)
12 No
%
%
73 Spouse/partner
78 Children
46 Health providers
51 Other family
6 Work associates
47 Friends/neighbors 42 Faith community
i.
Know about my illness
%
87 Yes
Check ALL that apply (based on Yes to item 17i. n=3,056)
5 No
%
%
74 Spouse/partner
84 Children
51
Health providers
55 Other family
8
47 Friends/neighbors 41
Work associates
Faith community
18. Have you heard of hospice services?
%
3
35
58
5
I have never heard of hospice services
I have heard a little about hospice services
I have heard a lot about hospice services
No Response
SKIP TO QUESTION 23
19. How did you learn about hospice services? (n=3,263)
%
71
6
3
17
44
53
2
30
I know someone who used hospice services
I have used hospice services myself
I am/was a hospice volunteer
I heard from a health care professional
I read literature/newspaper/TV/radio/other media
I heard from others
No Response
20. If you were dying, would you want hospice support? (n=3,263)
%
75
4
18
3
Yes
No
Don’t know/not sure
No Response
SKIP TO QUESTION 22
SKIP TO QUESTION 22
21. Where would you want to receive hospice support? (n=2,441)
%
41
28
20
29
88
2
In a hospice residence
In a hospital
In a nursing home
In a residential facility such as assisted living
In my own home
No Response
22. To the best of your knowledge, does Medicare pay for hospice services?
[*Although asked only of those aware of hospice, we re-calculated below to total
base.]
%
24
10
56
3
7
Yes
No
Not sure
No Response
*Not asked
23. Would you be interested in hearing more about hospice services?
%
43
29
23
5
Yes
No
Not sure
No Response
31
Spiritual Well-being
24. Do you consider yourself…?
%
36
47
10
4
2
Very religious/spiritual
Somewhat religious/spiritual
Not very religious/spiritual
Not at all religious/spiritual
No Response
25. How often do you attend religious or spiritual services?
%
54
21
16
5
2
3
Regularly
Occasionally
Rarely
Never
Not religious/spiritual
No Response
26. How often do you find strength in your religion or spirituality?
%
51
20
9
8
4
5
0
One or more times a day
A few times a week
A few times a month
Once a month or less
Never
Not religious/spiritual
No Response
About You
The following questions are for classification purposes only and will be kept entirely confidential.
27. In general, how would you rate your own health right now?
%
15
34
27
16
3
5
32
Excellent health
Very good health
Good health
Fair health
Poor health
No Response
28. How many times in the last 12 months have you received services for yourself at
an emergency room?
__________number of times visited emergency room in last 12 months
%
73
12
6
10
None
One
Two or more
No Response
29. How many overnight stays have you had in a hospital over the last 12 months?
__________number of hospital stays in last 12 months
%
76
7
8
10
None
One
Two or more
No Response
30. Do you or any member of your household have a serious chronic illness?
%
14
9
3
62
6
7
Yes, I have a serious chronic illness
Yes, a member of my household has a serious chronic illness
Yes, both a member of my household AND I have a serious chronic illness
No
Not sure
No Response
31. Are you currently covered by any health care insurance or program including insurance
through work/retirement, the military, Medicare, or some other government program?
%
91
4
*
5
Yes
No
Not sure
No Response
32. Are you…?
%
48
47
5
Male
Female
No Response
33
33. What was your age at your last birthday?
%
30
42
22
6
50-59
60-74
75+
No Response
34. How many people, including yourself, live in your household?
%
22
54
14
10
One
Two
Three +
No Response
35. What is your current marital status?
%
4
61
2
1
10
17
6
Single, never married
Married
Living together as if married
Separated
Divorced
Widowed
No Response
36. What is the highest level of education that you completed?
%
5
18
32
20
19
7
Less than high school
High school graduate or equivalent
Some college or technical training beyond high school
College graduate (4 years)
Post-graduate or professional degree
No Response
37. Which of the following best describes your current employment status?
%
28
10
49
5
2
7
34
Employed or self-employed full-time
Employed or self-employed part-time
Retired and not working
Other, such as homemaker
Unemployed and looking for work
No Response
38. Are you Hispanic, Spanish, or Latino?
%
1
91
*
8
Yes
No
Not sure
No Response
39. What is your race? Check ALL that apply
%
87
11
*
2
*
1
0
White or Caucasian
Black or African American
Asian
Native American or Alaskan Native
Hawaiian or Pacific Islander
Other
No Response
40. What was your annual household income before taxes in 2001?
%
5
11
12
13
11
9
8
22
9
Less than $10,000
$10,000 to under $20,000
$20,000 to under $30,000
$30,000 to under $40,000
$40,000 to under $50,000
$50,000 to under $60,000
$60,000 to under $75,000
$75,000 or more
No Response
41. What is your 5-digit zip code? (WRITE IN YOUR ZIP CODE) __ __ __ __ __
%
32
26
17
7
7
6
Raleigh Durham
Charlotte
Greensboro
Ashville
Greenville
Wilmington
Thank you for completing this survey. Please use the postage-paid envelope and return it
to State Member Research, AARP, 601 E Street, NW, Washington, DC 20049, by
DECEMBER 6, 2002.
35
AARP
Knowledge Management
For more information please contact Rachelle Cummins (202) 434-6297

AARP North Carolina End of Life Survey

Transcription

Similar documents