The Personal Nature of Illness and Dying Palliative

care strives to bring the best of clinical practice to the goals of comfort and quality of life for
individuals and families living with advanced illness. Toward those ends, it has become a
specialty focus within the fields of medicine and nursing. Health care is often critically important
in the lives of dying people. Yet, dying is fundamentally personal. Life with illness spans the
entire spectrum from mundane daily activities, including basic tasks of self-care and family
caregiving, to profound existential or spiritual experiences evoked by dying and grief. In caring
for those whose disease has advanced beyond cure or substantial control, clinicians are wise to
remember the subordinate, albeit essential, role that health care plays in lives of people who are
ill. In palliative care, primacy and priority are rightfully accorded to people’s personal values and
goals. What matters most to seriously ill or injured people is, almost invariably, other people.
Human psychology dictates that the “who” each person experiences himself or herself to be is
inextricably connected to others. Injuries and illness strike individuals, but they affect all who
love the person stricken. In recognition of these features of human life, a tenant of palliative care
is therapeutic focus on each patient with his or her family.1–3 Homo sapiens is a fundamentally
social animal, and families and communities have always been integral features of human life.4
Although families have traditionally been defined by marriage and blood relationships, many
contemporary families are nontraditional. A suddenly incapacitated individual who is unmarried
or lives alone may initially be thought to have no family yet later be found to have a close family
defined by lasting bonds of friendship and love. Similarly, communities need not be defined only
by the borders of cities or towns. Communities exist within neighborhoods, places of work, and
worship sites, as well as within associations formed by common interests and activities such as
schools, social and service clubs, and recreation. These subcommunities form the fabric of
human life. Most efforts to improve the quality of end-of-life care have focused on health care
settings and health care practices.5 To improve the quality of life for seriously ill patients and
families, understanding and efforts must extend beyond the traditional confines of health care
and contribute to building social capital and community responsiveness to the problems of
illness, caregiving, death, and grief. It is not surprising that the recently published Hospice
Access and Values project identified community not merely as an influence, but also as a core
value for end-of-life care.
One Community Offers Itself as a Laboratory of Experience

The Missoula Demonstration Project originated in 1995 when a small group of citizens in
Missoula, Montana, who were concerned about the quality of end-of-life experience met to
discuss ways for improving care and social support of ill people and their families. Missoula
County is situated in the United States western Montana and has a population of approximately
88,000, with approximately 50,000 living within the city of Missoula. Home to a state university,
Missoula has a reputation for having a strong sense of community and for being progressive and
open-minded in its outlook. A series of open meetings occurring over a handful of months drew
individuals from a variety of backgrounds, including medicine, nursing, pharmacy, social work,
funeral and burial services, ministry, aging services, aging advocacy, teaching, and the arts.
Participants shared a belief that grassroots social change was necessary to improve quality of life
for people with incurable conditions and for their families. Through these open meetings, this
group of interested citizens developed a vision for using the geographic community of Missoula,
Montana, as a laboratory of experience. Organizers decided to use their town to explore
community interventions to improve formal, professional services and informal social support
for dying persons and their families that would extend well beyond health care settings. Under
the guidance of a planning committee and founding board of directors, the Missoula
Demonstration Project (MDP) was incorporated in 1996. The organization, which is now called
Life’s End Institute (LEI), was founded with the mission to study and improve the quality of
life’s end. The board of directors believed that research and community-based interventions
could play complementary roles in accomplishing lasting change. Research findings have the
potential for raising public and professional interest while allowing quality improvement efforts
to be focused where they are needed most. Research could also track the impact of those efforts
over time. In 1997, this nascent community organization drew encouragement from an Institute
of Medicine (IOM) report entitled Approaching Death. This influential national report endorsed
“whole community” approaches to end-of-life care.7 While emphasizing professional aspects of
care, the IOM noted that “public and private policies, practices, and attitudes that help
organizations and individuals” were required, including “support systems provided through
workplaces, religious congregations, and other institutions to ease the emotional, financial, and
practical burdens experienced by dying patients and their families.” Additionally, the Institute
called for “public education programs that aim to improve general awareness, to encourage
advance care planning, and to provide specific information at the time of need about resources
for physical, emotional, spiritual, and practical caring at the end of life.”7 Studying end-of-life
experience and care from a community perspective makes sense. Although most medical and
nursing professionals encounter patients in health care settings of clinics, hospitals, or nursing
homes, the people who become clinicians’ patients live in the context of their families and
communities. As the experiences of serious illness, dying, caregiving, grieving, and death
inevitably affect each member of a person’s family, each of these experiences is in part
communal. All communities respond to members who are living through these difficult
experiences in ways that at once reflect and shape community life. Although health care
constitutes an essential component of a community’s response, it cannot address the entire range
of an individual’s and family’s needs, concerns, and challenges. Therefore, it is important to
develop quality improvement programs that include both nonmedical and medical aspects of care
in a community-wide context. The term community often refers to a defined geographic town,
city, or county and its residents. In its most general sense, the community can be defined by (1)
formal associations of people that are valued by one another and (2) informal social structures
and processes (discussions, activities, affiliations, and responsiveness to one another) that reflect
commonalities of history, culture, interests, or perspectives that are valued by the participants.8
Although the noun community conveys stability, by their very nature communities are dynamic,
woven by processes and interactions of their members.

Community: A Social Compact with Entwined Self Interests and Mutual Responsibilities

The primal social compact is founded on offering cooperation and accepting responsibility—
self-interest rooted in mutual obligation.9 The behaviors of people in communities reflect a sense
of belonging and recognition of a shared “stake” in life. Although this tendency may be latent
and not always obvious, when disaster strikes, such as a flood, fire, or hurricane, the sense of
belonging and mutual responsibility becomes readily apparent in the behaviors and interactions
of community members who are otherwise strangers.10 Acute grief has a similar effect of
revealing a shared sense of life. In the days following the death of a beloved community figure or
a bus accident that claims the lives of young children or the tragedy of a school shooting, people
acknowledge a commonality of grief. This impulse toward community occurs spontaneously, but
it can also be cultivated. LEI engaged the population of Missoula in exploring how people might
live in community with one another—rather than merely in proximity to one another—with
regard to issues of illness, caregiving, dying, death, and grief.11 Questions were posed in
community forums and through focus groups and surveys: What responsibilities do we have to
those who are seriously ill or dying—our family members, friends, neighbors, and those we
don’t know? What responsibilities do we have as individuals, and collectively as a society? And
what, if any, responsibilities do dying people—eventually all of us— have to those we leave
behind?

Community Culture: Shared Values, Assumptions, Expectations, and Patterns of Behavior

At the heart of every community is its culture. Culture refers to the set of attributes that
collectively characterize a community: commonly held values, attitudes, assumptions, history,
expectations, hopes, fears, and customary modes of professional, social, and personal
interactions. Dominant cultures, as well as subcultures, can be discerned. Culture encompasses a
constellation of attributes that apply both to the community as a whole and to component
subcommunities. Cultural values, attitudes, expectations, and modes of behavior are deeply
rooted and instilled individually early in childhood. They are then reinforced in the home, in
schools, and in community life. The mutually reinforcing influences of values, attitudes, and
expectations create a synergy that gives a local culture its power. Yet, for all its strength and
durability, culture is dynamic. Spontaneous shifts in culture tend to occur slowly. Substantial
changes in attitudes and patterns of behavior can span generations; however, spurts of cultural
change can occur. At times, national news, such as the death of a well-known civic figure or
respected celebrity, brings media and public attention to issues and contributes to a shift in
cultural expectations. Contemporary American examples include Richard Nixon’s refusal of
further life-prolonging treatment, Jackie Onassis’s choice to be cared for at home as she died,
James Michener’s decision to discontinue renal dialysis and allow death to occur, and Nancy and
Ronald Reagan’s acceptance of his life with dementia and eventually a natural death at home.
Such accounts gave rise to heightened awareness of end-of-life options and, at least transiently,
increased requests for living wills and interest in home care services. Community members’
willingness (or resistance) to address end-of-life issues within formal, professional interactions
as well as in informal social settings can strongly influence endof-life outcomes. People are at
once a product of their culture and participants in its ongoing evolution. Cultural attitudes,
assumptions, expectations, and patterns of behavior are based in part on the collective previous
experiences of its members. These attributes are malleable. Indeed, well-planned, multifaceted
interventions can have mutually reinforcing effects on shaping cultural change. Because word of
mouth spreads quickly within communities, a significant change in one arena such as a hospital
and nursing home program to routinely assess and treat pain, can give rise to measurable shifts in
expectation on the part of patients and their families.

Life’s End Institute’s Research and Continuous Quality Improvement Paradigm

Missoula’s whole-community approach toward improving the quality of end-of-life experience

flows from a conceptual framework that supports research and program evaluation and
contributes to community dialogue and action. Stewart and coworkers12 developed a conceptual
model that identifies key concepts and domains of clinical end-of-life care and related patient
and family health care experiences. Using the structure-process-outcome framework pioneered
by Donabedian,13,14 the goal of the Stewart model was to integrate quality of life and quality of
health care indicators (Figure 63–1). LEI identified relevant characteristics, structures, processes,
and outcomes of community life for the purposes of (1) developing an evidence base regarding
current practices and patterns of behavior, (2) identifying areas in need of quality improvement,
(3) determining effective interventions, and (4) supporting ongoing evaluation. Toward these
ends, LEI conducted a series of quantitative and qualitative studies. This research and quality
improvement model encompasses nonclinical as well as clinical aspects of end-of-life
experience. It incorporates individual experiences from surveys, interviews, chart reviews, and
ethnographic research with aggregate data from regional vital statistics and national Medicare
databases. This approach adapts the continuous quality improvement (CQI) model developed in
manufacturing and widely used in clinical institutions, expanding the scope and response cycle
of the CQI model to fit whole-community applications.15–17 The unit of analysis and target of
interventions are determined by the specific characteristic, structure, or process that is being
measured or affected. For example, geographically bounded areas such as counties, health care
institutions, social service agencies, or faith communities each may serve as the unit of
analysis.18 LEI’s framework incorporates two dimensions of evidence that correspond to two
types of interventions: individual focused and community focused.8 The community-focused
dimension addresses environmental features, collective experiences, and common expectations.
Examples of relevant community evidence include (1) a matrix of pertinent resources and
services within the geographic community, such as various health care facilities, hospice and
home health services, “medicab” transportation, senior housing, and meals on wheels; (2) a
public survey of attitudes and behaviors regarding pain medication and related to advance
directives; and (3) focused descriptions of attitudes and behaviors regarding illness, family
caregiving, dying, and grief within subcommunities of workplaces, neighborhoods,
congregations, and social organizations. Whole-community interventions can affect individual
and family experiences in indirect but tangible ways, by creating more supportive milieus

of community and subcommunity life in regard to illness, dying, caregiving, and grief. This
community-based quality improvement framework emphasizes commonly held values and
expectations (including hopes and fears) and assesses the degree of concordance or variance
between generally held values or hopes and experienced or observed outcomes. A community’s
cultural values are often deeply rooted and difficult to change. Yet preliminary findings indicated
that the large majority of Missoula’s population valued aging, dying, comfort and quality of life
during illness, emotional and spiritual support of ill and dying people, and family support during
caregiving and during grief. LEI’s board of directors, researchers, and advisors recognized that
other attributes of culture are more malleable and, if targeted specifically, could lead to a critical
mass, or tipping point, and core cultural change.19 By reinforcing prevailing values, correcting
misconceptions, and calling attention to patterns of interaction that are inconsistent with stated
values and hopedfor outcomes, it may be possible to change common behavior patterns.
Community-based quality improvement efforts operate on—and test—these assumptions. LEI
crafted a platform of research that was carefully designed to examine experiences of illness,
caregiving, dying, death, and grief. A set of general questions guided the research plan:

• How do people view death and dying? What is most important to them? What do they hope
for—and what do they fear?

• How do people interact with one another concerning end-of-life issues?

• How do people prepare for death, dying, and caregiving?

• How do people die in Missoula? Where do they die?

• What is the quality of end-of-life care?

• How do people care for and support one another— clinically, informally, and socially—during
serious illness, dying, and grief?

• How do people perceive care at the end of life?

A variety of methodologies were used to assess pertinent domains of personal and family
experience and quality of care. Both objective and subjective data were gathered from mailed
individual or family surveys, structured and semistructured interviews, surrogate after-death
interviews, and medical chart reviews.20–24 Study designs were both prospective and
retrospective and gathered either epidemiological or ethnographical information. LEI’s
participant-observer study used an anthropological perspective that culminated in a book, A Few
Months to Live.25 Knowledge, attitudes, and skills among professionals were assessed by
structured interviews, surveys, and standardized tests. Comprehensive community assessment
enabled descriptions of patterns of care across institutions or provider groups within a
community, levels of quality among available services, and aggregate personal experiences of
community members.

Key Findings

Findings from the series of baseline research studies conducted during 1997–2000 informed and
focused LEI’s community engagement and quality improvement interventions. These studies
were funded by a variety of private foundations, including the Nathan Cummings Foundation,
the Robert Wood Johnson Foundation, the Arthur Vining Davis Foundations, the Kornfeld
Foundation, and the Mayday Fund. Although a detailed report of the study results is beyond the
scope of this chapter, key findings that helped shape Missoula’s community-based interventions
are presented.

Values Study data revealed overall broad agreement among the general adult population of
Missoula and subcommunities of professionals with respect to values and expectations of endof-
life experience and care, albeit with some differences in frequency and intensity of attributes. For
instance, there was general accord in response to the statement, “Dying is an important stage of
life,” in a series of surveys. Seventy-five percent of respondents from a sample of 596 members
of the general public endorsed the statement. In a separate survey of 41 faith community leaders,
98% strongly agreed.26 A subsequent survey of practicing attorneys found that 87% of those
most experienced with advance directives and 83% of those less experienced concurred with this
statement.

Misconceptions

Misconceptions can impede the best efforts to improve people’s comfort and quality of life.
Fully 50% of respondents among the general public expressed some to extreme worry about
dying painfully, yet significant proportions harbored beliefs that would complicate effective pain
management. Thirty-two percent agreed with the incorrect statement that “Most people taking
pain medicines will become addicted over time.” Similarly, 36% erroneously thought that “Pain
medicines should only be taken when pain is severe”; 42% agreed that “It is important to take the
lowest amount of medicine possible to save larger doses for later when the pain is worse”; and
42% agreed that “People are often given too much pain medicine.”

Gap Between Expectations and Outcomes

“Being able to stay in your home” was rated as important in helping to deal with one’s own
dying by 85% of respondents in a survey of the general public. However, in-depth chart reviews
of 207 people who died “nonsudden” deaths revealed that only 22% were in a private residence
during the last moments of life, and only 18% received hospice services. “Freedom from pain”
was important to 92% of community respondents, yet medical chart reviews of 207 decedents
indicated that 78% experienced pain during the last week or month of their life. Eighty-eight
percent of community respondents prospectively indicated that “spiritual well-being” was
important during the dying process, but in a separate, retrospective study, 21% of bereaved loved
ones rated the help they received from their church as the worst it could possibly be. Indeed, only
34% of faith community members in a multicongregational study said their church does a good
job of providing support for families during illness. And even fewer congregants (29%) indicated
that their church does a good job providing support for families at the time of death. Although
“not being a burden” to loved ones was rated as important in the dying process by 88% of
general community respondents, respondents often did not engage in activities that prepare those
who are likely to make decisions for them. For instance, 72% of this general public sample did
not have advance directives, which allow individuals to express their own health care
preferences, designate someone to speak for them, and are widely acknowledged as a way to
reduce the emotional burden on families at times of medical crises. Further, 41% of this general
public sample said they were unlikely to speak freely to their loved ones about death and dying.
Hospice services can also reduce the family burden in caring for a dying loved one, yet 39% of
surveyed local residents had never heard of hospice or had heard only a little about it.

Insufficient Preparation Among Professionals

Professionals from clinical disciplines as well as education, ministry, and law acknowledged
that they have an important role to play in serving clients who are dealing with illness, death, or
grief, either themselves or in their families. In each discipline, significant proportions of
respondents reported less than adequate training and professional preparation to do so. Among
attorneys, 36% had little or no training in advance care planning. Among member of the clergy,
34% had no training in issues related to illness and death, and 66% said that what training they
did have had not prepared them well for ministry related to illness. Seventy-six percent of school
teachers were either unaware of end-of-life curricula or not familiar enough to use them, and
44% were unprepared to initiate a conversation with a student about the student’s serious,
potentially life-threatening illness. Even with suboptimal formal training, personal experience
with advance care planning would improve professionals’ ability and comfort in assisting others.
However, in proportions similar to those of the general public, local professionals did not prepare
for their own end-of-life experiences and care. Only 27% of physicians, 29% of attorneys, and
30% of clergy reported having named a power of attorney for health care to convey their wishes
and help ensure that their preferences were followed.

In summarizing key findings to the Missoula community, LEI reported the following
conclusions:

• We don’t adequately prepare for end-of-life experience and care.

• Many of us have misconceptions that can adversely affect our care and increase the variance
between what we hope for and what occurs.
• What we value and hope for is not always what we get.

• How we act is often inconsistent with what we value, desire, and hope to provide or receive.

Community Engagement and Quality Improvement

LEI’s quality improvement strategy reinforced widely-held affirmative values and focused on
identified gaps between what people value and hope for and actual outcomes—what people
receive or experience. Where a gap existed between expectations and outcomes and patterns of
behaviors were inconsistent with existing values and aspirations, LEI attempted to bring these
patterns of professional and informal social interaction into alignment with widely held values
and desired outcomes. Similarly, research data were used to identify prevalent expectations that
might be raised in ways that improve the quality of care and end-of-life experiences in the
community. In summary, LEI focused on three specific targets for quality improvement: (1)
formal services and care that are documented to be at variance from recognized standards for
professional practice; (2) prevalent misconceptions by the general public and professionals that
potentially contribute to adverse outcomes, inconsistent with widely-held values and hopes; and
(3) common patterns of professional practice and informal social interaction that are incongruent
with prevailing values and hopes and consequently contribute to undesirable outcomes.
Recognizing that community-wide quality improvement would not be achieved by single
program or by a “top-down” approach alone, LEI chose a strategy of community engagement.
Research and feedback proved essential to this approach. In addition to general public surveys
and outcomes research, pertinent subcommunities provided information from their own
experiences and professional practices. Once collected and analyzed, these findings were
reported back. When professional groups, whether clinicians, teachers, clergy, or attorneys,
reviewed their data and observed the discrepancies between what they value and hope to provide
in their service and what occurs, the result was an immediate and deepened sense of ownership
of the issues and expressed resolve to improve practice patterns and outcomes. Professional
groups responded with education efforts and quality improvement activities by and for their
members. As a center for expertise in end-of-life content, on request, LEI remained available to
offer assistance to groups within Missoula, as well as to consult with other communities across
the nation.
Quality Improvement Initiatives and Programs

From 1999 to 2004, a wide array of quality improvement initiatives and programs emerged from
this approach to community engagement. Examples of initiatives organized by sub-communities
and topic foci are presented here, with recognition that activities are rarely discrete and that
overlap and synergy of efforts are desirable.

Health Care Community

A 23-member Advance Care Planning Task Force with representation from most clinical settings
as well as attorneys, chaplains, disability advocates, social workers, faith community leaders, and
retirees developed My Choices, an advance directive form that combines a power of attorney for
health care and a living will.28 The consistent availability of this form has bred familiarity
among health care providers, who are able to more quickly locate and understand the information
it contains. A companion booklet was developed to provide information about exploring and
expressing one’s health care preferences in situations of life-threatening illness and injury. To
further improve the accessibility of advance directives, nine Missoula organizations collaborated
to develop the Choices Bank, which stores scanned advance directives on a secure Internet site
(http://www.ChoicesBank.org) and makes them available to authorized individuals 24 hours per
day.28 The Choices Bank uses relatively simple and inexpensive technology, which facilitates its
replication by other communities. Choices Bank evaluations to date reveal a dramatic increase in
depositors’ confidence that their advance directives will be found when they are needed. Not
only are 82% of depositors “extremely satisfied” with the Choices Bank, but almost 80%
reported that they had recommended the Choices Bank to their families and friends. What is
more, 94% of depositors had discussed the health care choices they made with their families,
65% with their doctors, and 59% with close friends. To assist patients and their doctors and
nurses in assessing physical discomfort, a community-based Pain Task Force printed pain rating
scales in bookmark formats. More than 4400 pain scales have been distributed throughout
Missoula. Pain is now monitored as a vital sign in the two hospitals, one home health agency,
and a local hospice program. Across acute and long-term care facilities and hospice and home
care programs, pain management is now a routine focus for continuous quality improvement.
Three of the largest local health care institutions have begun to regularly monitor performance
with pain assessment and management and have developed interdisciplinary teams to evaluate
and monitor pain management. The teams monitor the quality of the pain management process,
including staff competency, effectiveness of treatment, and outcomes such as satisfaction, cost,
readmissions, and length of stay. Both local hospitals were awarded commendations for their
pain management programs by the Joint Commission on Accreditation of Health Care
Organizations. To improve spiritual care at the end of life, 12 health care institutions assessed
their current services and implemented quality improvement interventions. A home health
agency developed a Spiritual Care training module for all nursing staff. One hospital adapted a
referral card,29 a tool staff members can use to know when to call a spiritual advisor (see Table
63–1).

Faith Community

Fifteen local faith communities assessed their capacity to provide spiritual care at the end of life,
reviewed their results, and implemented quality improvement interventions. One church formed
a Health Cabinet that works with their parish nurse and includes a focus on end of life; another
collated bereavement materials as a first step in addressing grief issues in their congregation; and
a third started an education series on endof-life issues. A home-based volunteer program, Caring
Friends, was developed by one faith community to assist family caregivers within their
congregation. A nondenominational Caring Circles program was developed with support by
parish nurses and community volunteers. Caring Circles helps family caregivers by recruiting
and training teams drawn from individuals within a caregiver’s network of family, friends,
neighbors, coworkers, or congregants who are then prepared and coordinated in providing
assistance with routine tasks such as shopping, cleaning, mowing, and cooking, as well as
transportation for appointments or errands. The program informs families and Caring Circle
volunteers about available resources such as hospice, topical health issue information, advance
care planning, and other avenues for reducing the burden of family caregiving. The program is
partially self-supported by volunteers who make and sell “Wearing Caring” jewelry. An added
advantage to this strategy is that the distinctive jewelry itself provides an opportunity for the
wearer to explain and promote the Caring Circle program.

Legal Community
The Wise Counsel project developed as a collaborative effort between LEI and representatives of
the State Bar of Montana, the University of Montana School of Law, and the Montana
Association of Legal Assistants. A national advisory panel of accomplished legal, medical, and
ethics experts helped shape the research design. All four District Court judges in Missoula
County signed a letter encouraging recipients to complete the Wise Counsel survey. Seventy-one
percent of attorneys did so, an impressive response rate. After reviewing survey results, a
statewide elder law continuing legal education seminar with the State Bar of Montana was
developed, and law professors at the University of Montana included end-of-life curricula in
their elder law classes

Spiritual care referral card

Spiritual Assessment

Listen for verbal clues:

• Patient refers to God or higher power

• Patient talks about church, prayer, worship, or a religious or spiritual leader

• Patient makes comments such as “It’s in God’s hands now,” or “Why is God letting this
happen?”

Look for visual clues:

• Religious or spiritual books: Bible, Torah, Koran, etc.

• Symbols in room: cross, star of David, etc.

• Articles: prayer beads, medallions, crosses, pins, etc.

Assess for religious concerns such as diet, special observations, or refusal of blood.

Listen carefully to your patients’ life stories: who they are, who they have been, for this is the
key to understanding their unique spirituality.

Spiritual Diagnosis
These are some cues that a patient may be experiencing spiritual distress or despair:

• Anticipatory grief

• Unable to participate in normal religious services

• Severe depression, suicidal ideation

• Concern about their relationship with God

• Feeling abandoned by God, unable to pray

• Anger toward God or established religion

• Loss of hope or spiritual beliefs If you assess spiritual distress or despair, please contact the
Chaplain right away. Interventions

• Joining with the patient in prayer or scripture reading if you are comfortable doing so.

• Being with the patient in respectful silence can be comforting.

• Referral to the patient’s own religious leader and/or hospital chaplain.

School-age Education Community

Schools are a microcosm of the existing community, yet there was no system in place to support
students with issues of death and bereavement. The Schools Task Force, consisting of local
teachers, administrators, librarians, secretaries, counselors, parents (including those who home-
schooled), and students, developed an age-appropriate bibliography of books on grief for local
teachers and a literature kit and resource list for teachers and parents that featured extended
activities on bereavement and coping after the death of a grandparent or other significant loss.
The task force continues to collaborate with the American Hospice Foundation to conduct its
annual Grief at School Workshops.

Arts Community

Community engagement employing the arts moves beyond merely placing artwork in hospitals
and other clinical settings. The arts can play an active role in stimulating introspection,
discussion, and community-based efforts. In Missoula, visual and performing arts have proved to
be powerful means for arousing emotions, raising awareness, and stimulating conversation,
especially among those who may not otherwise seek conversation about the end of life. A variety
of art forms, from paintings and photography to poetry, literature, live theater, and music, have
engaged the public in exploring illness, caregiving, death, and grief. Programs have involved
cultural organizations, such as museums, symphonies, and drama groups, as well as community
organizations of schools, churches, and the local Area Agency on Aging. The staged reading of a
play, Vesta, by Bryan Harnetiaux, about an elderly woman’s struggle with progressive frailty,
loss of independence, and extended family dynamics, was presented to a full high school
auditorium. Students invited their grandparents to attend and participated in a discussion session
after the performance. A reception and exhibit of evocative self-portraits by a well-known
Canadian artist, Robert Pope, created while the painter was living with progressive cancer, was
hosted at the Missoula Art Museum and drew record numbers of attendees. Since then, the art
museum has exhibited various works on themes of illness, dying, and grief. In conjunction with
the local University repertory theater group, LEI produced the Pulitzer Prize–winning play, Wit,
to high attendance for five successive nights. After each performance a “talk-back session” was
moderated by one or more local professionals, including chaplains, social workers, doctors,
nurses, and ministers. Participatory and experiential art activities have taken a number of forms.
To assist individuals and families in honoring a deceased loved one, local artists have conducted
Images and Objects of Remembrance workshops. Participants are instructed to bring
photographs and small symbolic objects to transform into memorials that recall and celebrate the
person who has died. Those who wish can have their image or object of remembrance displayed
in a local cafe or gallery. These workshops have typically preceded Missoula’s annual Festival of
the Dead celebration, a week-long calendar of activities culminating in an evening, downtown
parade on All Saints Day. A collaborative project with KUFM, a public radio station, produced
32 radio programs or segments with end-of-life themes that were broadcast over 5 days. The
content was varied and was tailored to a diversity of audiences listening at times throughout the
broadcast day. These programs reached a potential audience of 300,000.

General Community
In recognition of the value that life review and storytelling in the experiences of seriously ill
individuals and their friends and families, a group of community members joined together under
the auspices of LEI as the Life Stories Task Force. They created a storytelling newspaper insert,
“Everyone Has a Story, Share Yours!” which was a collection of end-of-life narratives, many
both poignant and humorous, and emphasized the value of storytelling, especially as the end of
life approaches. This tabloid was distributed to 20,000 households via the local daily newspaper.
The Life Stories Task Force also designed a project to elicit and help individuals record their
stories with the intention of contributing a meaningful experience and enhancing the quality of
life for dying persons. A short set of guidelines and suggestions were developed into a
booklet,Gathering Life Stories of the Dying (available at http://www.lifes-end.org/gathering_
life_stories.phtml). A collection of life stories is available in the public library. This task force
proved so successful that members chose to develop a separate nonprofit, community-based
organization called StoryKeepers, Inc. (http://www.mystorykeepers.org/mystorykeepers/). This
new organization holds two workshops a year to improve skills in writing life stories and
sponsors an annual storytelling festival. LEI seeks to involve many segments of the community
and people from all walks of life—because all are stakeholders. Although it is premature to
assert that the community of Missoula has been transformed, it is safe to say that the 5 years of
intense activity have heightened awareness of living with illness, family caregiving, dying, and
grieving. These subjects are no longer relegated to the periphery of awareness or actively
avoided. Instead, they have become matters for discussion in professional groups, as well as
organized social and informal discussions, and are recognized as important aspects of
community life. For example, the local newspaper regularly prints editorials pertaining to end-of-
life issues, the art museum continues to display exhibits that address chronic illness and loss, and
philanthropic organizations as well as small businesses regularly request LEI staff to speak to
their members about advance care planning and caregiving. Topics pertaining to life’s end are no
longer uncommon in public discourse. Although organizations often resist change, because
people’s values were affirmed and achievable goals were highlighted, individuals from many
walks of life and various segments of the community recognized their own and their
organization’s self-interest in quality improvement. Thus, resistance to LEI’s efforts has been
minimal. The history of LEI is still being written. As with most community-based, nonprofit
organizations, funding remains a constant challenge and the future is never secure. But whether
or not LEI remains active, the process of cultural maturation concerning end-of-life issues cannot
be reversed. Interest is high, and professional and cultural activities to advance peoples’ values
and meet their expectations will continue. This “genie” has been released and will not be forced
back into the bottle. o]

Conclusion

Citizen and consumer efforts to improve end-of-life experience are necessary complements to
initiatives in health care and can enhance general social support as well as the quality of practice
among professionals in law, ministry, and education.30 An understanding of strategic approaches
that are rooted in community and culture expands the realm of effective advocacy and activism.
Community-based research and social change efforts have been successful in other areas of life.
Public health interventions and campaigns have focused on a variety of social problems,
including unmet needs of the chronically ill,31 primary prevention of cardiovascular
diseases,32–35 reduction of tobacco use, preventing low birth weight,36 eliminating child
abuse,37 and diminishing drunk driving,38 to name a few. matters of illness and dying provide
them with invaluable opportunities for cultural leadership. Although a national crisis surrounds
the ways people are cared for and the ways they die, aging and dying happen to one person and
one family at a time. Palliative care providers can act clinically and culturally. In taking the best
care possible of each patient and family, clinicians can contribute to the health of their
communities. In so doing, they can contribute to a maturation of the culture and affirm a social
covenant to care for one another through the very end of life.