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The primary mission objectives of the HEAL Project can be divided into three major
areas:
Improving Hospice Awareness in
the Community at Large
Nearly every family that has had firsthand experience with hospice expresses such
heartfelt gratitude for the support they received while their loved one was dying.
There is nothing more important to the HEAL Project than to give every family the
same opportunity by increasing public awareness of hospice care and its benefits.
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Since hospice came to the U.S. in the 1960's the focus has been on serving the adult
population. This focus on hospice care is broadening to include children, as medical
and hospice professionals have stressed the need for adequate palliative care for
children. On March 15, 2004 the George Mark Children's House (GMCH) opened
its doors in San Leandro, California. This is the first freestanding residential
children's hospice in the United States. This facility offers 24/7 respite support,
transitional care (between hospital and home), and end-of-life care for children
with life-threatening or terminal illnesses. There are several other communities
in the U.S. that are also developing residential children's hospices.
In early 2004 the HEAL Project initiated its first program to support families that
have a child with a life-threatening illness. Our
Hannah's Friends program uses experienced hospice volunteers to emotionally
and spiritually guide families through their most difficult journey.
Advancing Hospice Volunteerism
The National Study of Hospice Volunteers & Staff by the University of
Virginia Health Sciences Center (1998) noted that the role of the hospice volunteer
may be changing due to competitive pressures between hospice organizations:
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Hospices, which provide care for 16% of the approximately 2.5 million people who
die in the United States annually, traditionally rely on donated services for administrative
tasks, direct interaction with patients, and for the sense of mission that was a
defining characteristic of the early hospice movement. As hospices move closer to
the medical mainstream - increasing in size, complexity, and competitiveness - and
with the entry of for-profit chains, the traditional role of the hospice volunteer
may be changing. |
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This study finds that many hospice volunteers find their work extremely rewarding
and that hospice professionals agree that they are essential to the mission of hospice:
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- The majority of volunteers (more than 70%) have provided direct care in patient
homes, with each serving a mean of more than seven dying patients. Volunteers provide
a mean of 10 hours of service per month, and over half of them also volunteer with
another community group.
- A large majority of hospice volunteers are satisfied with their work and a significant
percentage (36%) found their work extremely satisfying.
- Over 90% of volunteers and professionals agree or strongly agree that volunteers
are essential to the mission of hospice, citing as a primary value the fact that
they provide companionship, support, and respite for patients and families in times
of crisis.
- While agreeing that volunteers improve the quality of hospice care, volunteer managers
and hospice leaders were concerned about the scarcity of the traditional hospice
volunteers (middle-aged, educated white women) and the difficulty of recruiting
nontraditional populations (minority and male volunteers).
- Hospice leaders assert that maintaining a strong volunteer program requires a significant
investment of human and other resources at a time of flat or declining revenues
and increasing medical and pharmaceutical costs. While the responses indicate a
broad commitment to volunteerism in the hospice industry, the researchers concluded
cost concerns are likely to induce hospices to reduce future investments in volunteer
programs.
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The HEAL Project is committed to advancing the cause of hospice volunteerism. Since
its inception, hospice has used volunteers very effectively in a variety of roles.
Economic pressures that force hospice organizations to reduce investments in volunteer
programs will ultimately reduce the quality of care that the dying will receive.
Volunteers give of themselves to the dying without concern for their time or receiving
a pay check. As a result they are not subject to the same pressures that limit a
physician or a nurse's ability to spend quality time with a hospice patient. The
need for hospice volunteers will never diminish.
The HEAL Project created the Hospice Volunteer Assocation
(HVA) to better address these issues at a higher level, to complement hospice
volunteer programs by offering training alternatives like HVTI, to better serve
the needs of the hospice volunteer and advance hospice volunteerism in general.
Preparing Families to Care for
Terminally Ill Loved Ones
A grassroots public education effort is needed to help families make informed and
compassionate decisions with regard to end of life care. The general public usually
receives their cue to seek hospice care from a medical professional, typically the
dying person's physician. If families knew more about hospice care, perhaps they
would choose to stop curative care techniques earlier and opt for palliative care
which focuses more on quality of life. Often patients are admitted to hospice and
die within days. It may have been more beneficial for those patients and their families
to have had more quality time together by entering hospice care earlier.
The HEAL Project seeks to better prepare families in the following ways:
a) To offer public educational programs to teach the families & friends of dying
loved ones through a Community Outreach Program in Education (COPE). The curriculum
will focus on:
- options for end-of-life care
- how to create an environment of mindfulness and compassion that will
promote harmony between caregivers, family & friends while preserving the dignity
of the dying loved one
- the dying process and nearing death awareness
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comfort management
b) To offer COPE programs at no cost to the community through a publicly funded
community volunteer program.
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c) To develop a comprehensive COPE curriculum that is grounded in the fundamental
concepts of wisdom and compassionate care. Curriculum development will be progressive
with additional curricula being added based upon public feedback. Planned curriculum
progression is:
- publish free educational materials with broad access such as through
the Internet
- create innovative family caregiver education programs so families
can better serve their dying loved ones
- free public lectures by community volunteers
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develop workshops on high-interest topics identified from the public lectures
d) To establish a network of volunteer hospice educators to teach the core COPE
curriculum to the public in their own communities.
e) To increase public dialogue about death and dying through its COPE curriculum.
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