BY: KAYE NORRIS, Ph.D.; GRETCHEN STROHMAIER, MD, M.Div.; CHARLES ASP, Ph.D.; and IRA BYOCK, MD
Dr. Norris is director of research, Life's End Institute: Missoula
Demonstration Project, Missoula, MT; Ms. Strohmaier is a bereavement coordinator,
Partners Hospice & Palliative Care Services, Missoula, MT; Dr. Asp is research
consultant, Asp Consulting, Blanchard, ND; and Dr. Byock is director, palliative
medicine, Dartmouth Hitchcock Medical Center, Lebanon, NH, and principal investigator,
Life's End Institute: Missoula Demonstration Project.
Religious leaders historically served as both physical and spiritual healers.1
However, by the mid-19th century there was a clear division between science
and religion.2 The division progressively
separated the clergy from significant roles in physical healing, which was relegated
to medicine and its practitioners. The rapid advances of medical science and
technology in the late 20th century widened this division. The ascendance of
medicine and physician dominance over the realms of injury and illness may have
been accelerated by a contemporaneous retreat from the bedside of seriously
ill or acutely grieving people by clergy. Little information exists about present-day
clergy's values and attitudes regarding the provision of spiritual care during
times of illness, dying, death and grief, or about their experience with those
Research indicates that people value spiritual care and spiritual well-being
at the end of life.4 In 1997 the Life's End
Institute (LEI), Missoula, MT, conducted a mailed survey of 1,200 randomly selected
community residents. Eighty-nine percent of the respondents indicated that spiritual
well-being would be important to them at the end of life. In a recent study
that AARP (formerly the American Association of Retired Persons) conducted of
its members in North Carolina, 92 percent said that being at peace spiritually
would be important at the end of life.5
The clinical literature reveals a growing recognition that spiritual care can
contribute to dying persons' quality of life and is an important domain of quality
of medical and nursing care.6 In Missoula,
a structured interview study involving family members of people who died a non-sudden
death in 1996-1997 found that spiritual care can make a positive difference.
As part of the interviews, the researchers used the Quality of Dying and Death
(QODD) questionnaire developed by J. Randall Curtis and Donald L. Patrick. Respondents
reported higher ratings of the decedent's quality of dying and death as a result
of being read to from a spiritual book, talking with a spiritual leader or counselor,
praying together as a family or community, having the support of friends from
a spiritual group, and going to a church or place of worship.7
Not all spiritual care carried the same impact. Religious or spiritual experiences
that were not associated with statistically significantly higher QODD scores
included the patient's identifying with an organized religion or having a spiritual
orientation, talking with the health care team about religious or spiritual
concerns, making amends before dying, having a chance to talk about beliefs,
and participating in final rites of a faith community.8
A 1997 Gallup survey, "Spiritual Beliefs and the Dying Process," suggested
that people may not always receive the level of support and spiritual care they
desire.9 Gallup survey respondents indicated
that, if they were dying, they would want human contact (54 percent), especially
with someone with whom they could share their fears and concerns (55 percent).
Many expressed a desire for holding hands or touch (47 percent). Fifty percent
indicated that prayer would be very important, as would having a person to help
them become spiritually at peace (44 percent). These practices lie within the
traditional domain of the ministry. Yet people currently have low expectations
of clergy. Only 36 percent of the Gallup survey respondents felt the presence
of a clergy person would actually be comforting for them at such a time.
Previous research in the Missoula community substantiates these national data.
Respondents to the 1997 mailed community survey indicated that, as they near
life's end, they would be more likely to rely for support on a spouse (81 percent),
children (71 percent), other immediate family members or relatives (66 percent),
and friends (46 percent) than on a faith community (23 percent). Of note, 68
percent of the survey respondents described themselves as religious or spiritual.
These results are similar to the findings of the AARP survey of North Carolina
members, in which 83 percent of the respondents indicated that they considered
themselves religious or spiritual; 54 percent reported attending services regularly;
and 21 percent reported doing so occasionally. Fifty-one percent said they "find
strength in religion or spirituality" one or more times a day and 20 percent
reported doing so a few times a week.10
The importance of religion and spirituality in people's lives and the relatively
low prevailing expectations of faith communities and their leaders have led
researchers at the Institute of Medicine to raise questions about the training
ministers receive.11 Two writers, K. J. Doka
and M. Jendreski, suggest that clergy's lack of education about grief is an
obstacle that prevents them from being of greater solace to the bereaved.12
A Community-Based Study
In 1997 LEI convened a Missoula Faith Community Task Force, composed of
lay people and clergy representing different Missoula local faith communities.
The task force was intended to be the central part of a long-term community-based
effort to improve end-of-life spiritual care in Missoula County.13
The task force determined that before beginning efforts to improve the quality
of end-of-life spiritual care, it must first get information from a broader
representation of Missoula faith leaders. LEI researchers, the authors of this
article, conducted the study, a summary of which is presented here.
Missoula County is in western Montana. It has a population of approximately
88,000 people, some 50,000 of whom live within the city of Missoula. The latter
figure includes more than 10,000 people at the University of Montana. Missoula
County is 96 percent Caucasian and 3.4 percent Native American. The average
annual income is about $20,000.
LEI charged the task force with enhancing individual, family, and congregational
preparation for dying, death, and bereavement. In collaboration with task force
members, LEI developed a Faith Community Leader (FCL) survey as an instrument
with which it could study the levels of training, perceived assets and liabilities,
and experience of local clergy in regard to the provision of spiritual care
to dying people and their families. The FCL survey was one component of a baseline
assessment of the clergy members' prevailing values, the extent of their
training, the patterns established in their spiritual care practice, and their
comfort with that practice.
Methods We hypothesized that faith community leaders who lack training
in areas of illness, death, funerals, and bereavement will:
- Experience lower levels of comfort ministering to people in end-of-life
- Provide end-of-life spiritual care services less frequently
- Provide a narrower range of spiritual care services to people at these times
Instrument We began development of the FCL survey by reviewing the literature.
We then wrote a preliminary draft, which was critiqued by both task force members
and scholars in related fields, and made repeated refinements to it. The survey
was structured as a self-assessment tool. It was designed to gather a range
of information about respondents' backgrounds; education and training;
congregations; personal experience; values; attitudes; and beliefs related to
illness, dying, death, and grief, as well as to their sense of personal and
professional preparation for spiritual care through life's end.
One section of the survey assesses respondents' comfort level with providing
spiritual care for seriously ill and dying people, with bereavement counseling,
and with performing pertinent rituals. The survey asks about the strengths respondents
think they bring to providing this spectrum of spiritual care and about perceived
barriers. Several items inquire about respondents' experiences in working
with other professionals (health care clinicians, chaplains, funeral directors,
nursing home personnel) in the community, and about perceived patterns of communication
related to illness, care, and grief with health care professionals.
Pilot Survey To test the ease with which respondents would comprehend
and complete the survey, we used a late draft of it to conduct a pilot study
involving faith community leaders living outside Missoula County. Pilot questionnaires
were completed and returned by 12 respondents. We then revised the survey in
response to pilot data.
Recruiting Subjects We compiled a list of faith community leaders in
Missoula County, using lists from the two local ministerial associations, the
local telephone directory, a chamber of commerce directory, and newspaper listings.
Task force members and other local faith leaders reviewed the list for possible
Procedures To the people on our list we mailed packets that included
an introductory letter, an LEI brochure, an LEI newsletter, a coded survey questionnaire,
and a postage-paid return envelope. One hundred twenty-two surveys were mailed.
Recipients were asked to complete and return the survey within two weeks. As
an incentive to do so, we offered each a copy of A Handbook for Busy Parish
Pastors on End-of-life Discussions and Decisions by Carol Garman, a pastor
in Minneapolis. We made a single follow-up phone call to recipients who were
delayed in returning the survey.
The Survey's Results
Of the 122 mailed surveys, 41 were completed and returned, for a response
rate of 34 percent.
Demographics The median age of respondents was 51; 80 percent were male
and 20 percent female. Fourteen percent had been ministers for 10 years or less,
56 percent had been such for between 11 and 30 years, and 22 percent for more
than 30 years. Respondents identified their religious affiliations as Lutheran
(20 percent), Catholic (15 percent), other mainline Protestant churches (23
percent), evangelical churches (40 percent), and the Church of Jesus Christ
of Latter-Day Saints (2 percent).
Training The majority of respondents had a college degree or higher
(69 percent). Of these, 17 percent had bachelor's degrees, 12 percent master's
of arts, 32 percent master's of divinity, and 10 percent doctorate of ministry.
Of the remainder, 29 percent had other types of training, ranging from classwork
in college or Bible school to experience in missions or on-the-job training
with ministers. A majority had some training in spiritual care pertinent to
end-of-life situations. Sixty-one percent reported training in ministry during
times of death. Slightly fewer indicated that they had received training in
illness (54 percent) and bereavement support (54 percent). Forty-nine percent
of survey respondents received training in funerals or memorials. Only one-third
(34 percent) indicated that they had no training in any area of end-of-life
ministry: illness, death, funerals, or bereavement.14
Values Clergy respondents held strong values with regard to end-of-life
experience and care. On a seven-point scale, 98 percent strongly agreed (6 or
7 rating) with the statement, "Dying is an important stage of life."
One hundred percent agreed (6 or 7 rating) with the statements, "Caring
for people who are dying is beneficial for those giving care" and "The
end of life can be an important time for spiritual growth."
On items with an 11-point scale, from 0 to 10, 80 percent of respondents strongly
agreed (at a rating of 8, 9, or 10) that "the presence of a spiritual caregiver
is comforting to those who are ill and their family members." Ninety percent
indicated (8 or higher) that "talking with a dying person and the family
about death is more helpful than disturbing." Without exception, responding
faith community leaders felt that "listening is a powerful ministry of
spiritual caregivers who work with the ill and dying," and that "giving
spiritual care at the end of life is a meaningful experience for the spiritual
Personal Experience All of the respondents indicated they had personal
experience with one or more end-of-life experiences and situations. Illness
(95 percent) and death (95 percent) were the areas of experience most frequently
reported. Personal experience of funerals or memorials was reported by 90 percent
of the respondents, whereas 83 percent reported personal experience with bereavement.
Personal Practice Most of the respondents had discussed their end-of-life
wishes with their immediate families (95 percent). A smaller majority (66 percent)
indicated that family members had a clear understanding of each other's
wishes. A minority of 29 percent had signed advance directives. Twenty-four
percent (24 percent) had preplanned their funeral or memorial service.
Professional and Personal Preparation Professional preparation for assisting
others with end-of-life issues and personal preparation for dealing with end-of-life
issues were assessed using an 11-point scale from "worst possible"
(0) to "best possible" (10). Slight majorities felt that their professional
education had prepared them well (designated as a rating of 8 or above) for
assisting others with issues of bereavement (51 percent) and death (54 percent).
Sixty-three percent felt their education had well-prepared them for dealing
with funerals and memorials. In contrast, a minority (34 percent) gave a high
rating (8 or above) to their professional preparation for assisting others with
Larger percentages of respondents highly rated their personal preparation for
dealing with issues of bereavement (63 percent), illness (66 percent), death
(76 percent), and funerals or memorials (83 percent).
Comfort with Ministry As shown in Table 1, a majority
of respondents indicated high levels of comfort (8, 9 or 10 rating) for all
listed aspects of care associated with illness, death, and bereavement, in all
health care settings, as well as with interactions with professionals. The sole
exception was medical terminology, in which a sizable minority of 44 percent
reported comfort. A slight majority, 56 percent, said they felt comfortable
dealing with issues of physical symptoms of illness. Comfort providing spiritual
care varied by setting. Respondents were more likely to feel comfortable ministering
to people who are seriously ill at home with hospice care (85 percent) than
in the hospital (80 percent), a hospice house (76 percent), at home without
hospice (76 percent), or in a nursing home (71 percent). Fewer respondents expressed
high levels of comfort interacting with doctors (66 percent) than with hospice
staff (76 percent), nursing home staff (78 percent), funeral home staff (78
percent), or hospital staff (80 percent).
Relationship between Training and Ratings of Professional and Personal Preparation
The survey asked respondents to evaluate how well training and personal experience
had prepared them to deal professionally with illness, death, funerals or memorials,
and bereavement support. The responses showed that, in general, Missoula County
clergy felt they had been well-prepared in these areas by both training and
However, responses differed when it came to specific practices. When respondents
were asked, for example, to "indicate how frequently you provide spiritual
care for those within your faith community who are at the end of life?"
they revealed that those possessing a higher level of education were likely
to provide end-of-life spiritual care more frequently than those with a lower
level. Respondents who were trained to deal with issues of illness, death, and
bereavement support reported providing prayer and quiet presence more frequently
than those who did not have these types of training. Respondents trained to
conduct funerals also provided prayer more frequently than did those not trained
in this area. Those trained in bereavement support were more likely to report
frequently practicing "holding hands or appropriate touch" than those
who were not trained in that area. Respondents who were not trained in any of
these areas were less likely to engage in holding hands or appropriate touch,
prayer, offering quiet presence, or providing sacrament of the sick than those
who were trained in at least one of the areas.
Of the 12 ministerial practices specified during times of bereavement (see
Table 2), visitation by clergy (95 percent) and cards
and letters expressing sympathy (93 percent) were provided most frequently.
Grief support (17 percent), financial counseling (22 percent), and education
about grief (37 percent) were provided the least frequently.
Personal experience also had an impact on professional preparation. Respondents
who had personal experience with funerals showed a higher level of professional
preparation for conducting funerals or memorial services than those who lacked
such experience. Respondents who had personal experience with death showed a
higher level of professional preparation for extending bereavement support than
those who did not have similar experience.
What Did We Learn?
Before reporting the study's conclusions, we should say a word about its
limitations. One limitation was the small sample size. Subgroup analyses are
not possible in situations in which there are a small number of respondents
per group. Thus it was not possible to examine the impact of all of the variables
in this survey on clergy comfort or practice. Further research on larger samples
would be required for more rigorous analyses. This, in turn, would contribute
to a better understanding of the relationship of clergy training, comfort, and
However, the findings of this small study do indicate that leaders of faith
communities value end-of-life experience and care and recognize they have a
role in supporting ill and dying persons and their families. The study reveals
discrepancies between several aspects of ministerial practice that faith community
leaders' value and the frequency and extent of services they routinely
perform. Our findings emphasize the importance of clerical training in these
aspects of spiritual care and highlight current deficiencies. Strong positive
associations were found between training and perceived professional preparation
and personal preparation for dealing with illness, death, funerals or memorials,
and bereavement support. Importantly, we also found direct relationships between
levels of training and the range and frequency of services ministers provide.
The relationship between training and comfort is less straightforward. Clergy
generally reported high levels of comfort whether or not they had training in
end-of-life spiritual practices. Although no significant relationship was found
between training and comfort in four broad areas of illness—dying, funerals
or memorials, bereavement support, and comfort with specific ministerial services—overall
those respondents who had training tended to have higher levels of comfort with
end-of-life spiritual care practices than did those who lacked training.
Several statistically significant associations and trends were found between
areas of comfort and specific spiritual care practices. This is an area that
warrants further study. It is possible that a larger sample would have revealed
additional direct correlations.
Review of the data suggests, although this was not captured in formal statistical
analysis, that respondents were more likely to feel comfortable with and provide
more discrete ministerial services, and immediate, short-term types of support,
such as visitation, or sending cards and letters. They were less likely to report
convening grief support groups and participating in education about grief. Illness
and grief are complex issues and present unpredictable challenges. Because society
has extended the length of the dying processes—today fewer people die
suddenly—the contemporary dying experience means more "in between" times:
more waiting, more chronic illness, and more disability.15
Ministering to people with life-threatening illness and to family during months
of grief may be less well defined and require a more intensive level of training
than do rituals at funerals or memorial services.
The values that clergy hold regarding illness, dying, death, and grief are
consistent with those of the general population. It is reasonable to expect
the training of clergy to be aligned with these values. At present, apparent
discrepancies exist between the roles clergy feel are important and accept within
the purview of ministerial practice, on one hand, and the scope of their training,
on the other. These discrepancies appear to contribute to constrictions in clerical
practice. As a result, the range of services many faith community leaders provide
is narrower and less inclusive than their own values and those of the public
they serve would suggest.
Our study's findings highlight the importance of training and continuing
education of clergy with regard to end-of-life spiritual care. The findings
suggest specific areas for attention. Comfort with medical terminology was comparatively
low. This is an area that lends itself to simple education. Participating clergy
were relatively less comfortable talking with physicians than with other clinicians,
which suggests that interdisciplinary training or continuing education may improve
collaborative practice to the benefit of the patients and families both professions
It is tempting to posit a causal chain linking clerical training in issues
of illness, dying, death, and grief, on one hand, to a clergy person's
sense of preparation, his or her sense of comfort with those phenomena, and
to the frequency and range of spiritual care that he or she practices, on the
other. Although such a chain is plausible and intriguing, our study's size
and design do not allow for examination of all the links in it. At present,
the existence of a causal chain remains a hypothesis that warrants further study.
Studies are warranted to examine whether enhanced training of clergy in end-of-life
matters can expand the scope of clerical practice and raise expectations and
satisfaction among congregants regarding spiritual care they receive during
times of illness, dying, and grief.
Discrepancies between what clergy clearly value and their patterns of practice
may reflect an aspect of the cultural medicalization of dying that occurred
during the 20th century. Personal and social aspects of dying have been subordinated
by medicine, and medical terminology has come to dominate the language of dying.
Health care remains essential for people who are dying or in grief, but by itself
cannot meet all of people's needs during these difficult times in human
life. Technology-based care cannot provide spiritual comfort and peace. The
time may be right for clergy, drawing encouragement from surveys of public attitudes
and values, to reclaim and renew their traditional roles in attending to the
needs of patients and families during illness, dying, death, and bereavement.
Faith community leaders have an historic—and still valued—role for
care and family support during the times of illness, dying and grief.
Funding for this research was provided in part by the Robert Wood Johnson Foundation.
For information concerning the statistical methodology used in the FCL survey,
contact Kaye Norris.
- C. C. Kuhn, "A Spiritual Inventory of the Medically Ill Patient,"
Psychiatric Medicine, vol.6, no. 2, 1988, pp. 87-100.
- H. G. Koenig, "A Commentary: The Role of Religion and Spirituality
at the End of Life," The Gerontologist, vol. 42, special no. 3,
2002, pp. 20-23.
- C. Kennedy and S. E. Cheston, "Spiritual Distress at Life's End:
Finding Meaning in the Maelstrom," Journal of Pastoral Care Counsel,
vol. 57, no. 2, 2003, pp. 131-141.
- K. H. Abbott, J. H. Sago, C. M. Breen, et al., "Families Looking Back:
One Year after Discussion of Withdrawal or Withholding of Life-Sustaining
Support," Critical Care Medicine, vol. 29, no. 1, 2001, pp. 197-201;
George H. Gallup Institute, "Spiritual Beliefs and the Dying Process,"
Princeton, NJ, 1997; and L. K. George, "Research Design in End-of-life
Research: State of Science," The Gerontologist, vol. 42, special
no. 3, 2002, pp. 86-98.
- K. Garloch, "Hopes, Fears in End-of-life Care," Charlotte Observer,
Charlotte, NC, July 15, 2003, p. 1-A; information on the AARP survey can be
found at http://research.aarp.org
- E. B. Clarke, J. R. Curtis, J. M. Luce, et al., "Quality Indicators
for End-of-Life Care in the Intensive Care Unit," Critical Care Medicine,
vol. 31, no. 9, 2003, pp. 2,255-2,262; T. A. Rummans, J. M. Bostwick, and
M. M. Clark, "Maintaining Quality of Life at the End of Life," Mayo
Clinic Procedures, vol. 75, no. 12, 2000, pp. 1,305-1,310; K. E. Steinhauser,
E. C. Clipp, N. McNeilly, et al., "In Search of a Good Death: Observations
of Patients, Families, and Providers," Annals of Internal Medicine,
vol. 132, no. 10, 2000, pp. 825-832; M. W. Rabow, K. Schanche, J. Petersen,
et al., "Patient Perceptions of an Outpatient Palliative Care Intervention,"
Journal of Pain Symptom Management, vol. 26, no. 5, 2003, pp. 1,010-1,015;
A. Stepnick and T. Perry, "Preventing Spiritual Distress in the Dying
Client," Journal of Psychosocial Nursing and Mental Health Services,
vol. 30, no. 1, 1992, pp. 17-24; C. M. Puchalski and D. B. Larson, "Developing
Curricula in Spirituality and Medicine," Academic Medicine, vol.
73, no. 9, 1998, pp. 970-974; and J. R. Staton, R. Shuy, and I. Byock, A
Few Months to Live, Georgetown University Press, Washington, DC, 2001.
- J. R. Curtis, D. L. Patrick, R. A. Engelberg, et al., "A Measure of
the Quality of Dying and Death: Initial Validation Using After-Death Interviews
with Family Members," Journal of Pain Symptom Management, vol.
24, no. 1, 2002, pp. 17-31.
- Gallup Institute.
- M. J. Field and C. K. Cassel, eds., Approaching Death: Improving Care
at the End of Life, National Academies Press, Washington, DC, 1997.
- K. J. Doka and M. Jenreski, "Clergy Understanding of Grief, Bereavement
and Mourning," Research Record, vol. 2, no. 4, 1985, pp. 105-112.
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- For the survey data, see www.lifes-end.org/faith_community_leader.phtml
- Field and Cassel.
|Table 1: Clergy Comfort Level
|How comfortable respondents are with:
Number who said they were comfortable
Illness and Death:
- Being with a dead body
- Physical symptoms of illness
- Performing rituals for people who are dying
- Discussions about imminent death
- Being with the family of a dying person at the time of death
- Providing quiet presence with people who are dying)
- Performing a memorial service (without the body present)
- Performing a funeral (with the body present)
- Visitation of bereaved friends and family
- Being with the family of the deceased after the funeral
- Referral support for bereaved friends and family
- Providing grief support for family and friends
- Ministering to seriously ill people in hospice care in their homes
- Ministering to seriously ill people in the hospital
- Ministering to seriously ill people at the hospice house
- Ministering to seriously ill people at home without hospice care
- Ministering to seriously ill people in a nursing home
- Ministering to families at a funeral home
- Interacting with hospital staff
- Interacting with funeral home staff
- Interacting with nursing home staff
- Interacting with hospice staff
- Interacting with physicians
- Understanding medical terminology
| Table 2: Services Provided
to Bereaved Families
|The clergy members who responded to questions about the
following services were free to define the services as they wished.
| Types of Services
Number who provided them
|Visitation by clergy
|Cards and letters
|Visitation by lay members
|Meal preparation and delivery
|Plant or flower donations
|One-on-one support from a fellow bereaved member of your faith
|Referral to support groups or counseling
|Special invitation to faith community functions
|Education about grief
Grief support group
Copyright © 2004 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.