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The Hospice Educators Affirming Life (HEAL) Project was founded in 1999 by
Founding Director Greg Schneider to initiate a grassroots effort to educate the
public about hospice and its benefits. The HEAL Project was incorporated in the
State of California as a non-profit corporation in January 2004. In May 2004 the
corporation received a 501(c)(3) federal income tax exemption from the Internal
Revenue Service and a 23701d state income tax exemption from the State of California
Franchise Tax Board. All donations to HEAL Project are
fully tax deductible in accordance with IRS regulations.
The HEAL Project is guided by a volunteer Board of Directors
that has a long term vision of making the care of the dying and support of their
families the best it can be. The HEAL Project's evolution since its inception has
been primarily driven by the educational needs of those individuals who are acting
as caregivers to the dying. While the primary mission focus was on public education,
the scope has now broadened to include education for hospice volunteers. We believe
that compassionate care begins with an intimate knowledge of the caregiving journey.
Our educational focus falls into three general categories:
Each of these categories is discussed in detail below.
Educating the public
The impetus for creating the HEAL Project came about as a result of Greg Schneider's
personal volunteer experience with the
Zen Hospice Project in San Francisco, CA. His experience demonstrated time
and time again that many families were simply unaware that hospice even existed.
Families were also unaware of the nature of the care offered to the terminally ill
by hospice organizations.
Hospice is a concept of health care that came to the U.S. in the 1960's and has
proven itself to be an effective means of serving the needs of the terminally-ill
and their families. Unfortunately many people, including some in the medical profession,
are unaware of hospice and its benefits. The long-term survival of hospice in America
depends on a public that is fully aware of the benefits of hospice and palliative
care services. According to a survey conducted by the National Hospice Foundation, 75% of Americans do not know
that hospice care can be provided in the home, and 90% did not realize that hospice
care can be fully covered through Medicare.
This situation is producing scenarios where the terminally-ill loved one is not
being released to hospice care until very late in the end-of-life care process.
On many occasions the death of the loved one occurs before the ink is dry on the
hospice admission forms. This is unfortunate for both the loved one and their friends
and family because the hospice experience can transform the end-of-life experience
from one of desperation and fear to one of hope and healing.
There comes a time in a person's terminal illness when quality of life should become
the primary consideration. Hospice does exactly that by taking the focus from curative
care to palliative care. This focus brings comfort to the forefront of care, offering
the dying the opportunity to spend quality time with those they love. Often such
care intimately takes place in the comfort of their home as opposed to a hospital
environment.
The HEAL Project's goal is to impart sufficient information to family caregivers
to allow them to make compassionate and informed choices about end-of-life care
for their loved ones. By doing so, we hope to facilitate a transformative healing
process between the dying and their family and friends as all involved try to understand
and process the impending loss.
Innovative hospice education programs
The face of hospice is changing. Economic pressures are affecting the ability of
hospices to maintain a strong volunteer force. The HEAL Project believes that these
economic pressures could have a devastating impact on the ability of hospice organizations
to continue to offer optimal care to the dying.
In 1998 the Robert Wood Johnson Foundation funded the National Study of Hospice Volunteers
& Staff by the University of Virginia Health Sciences Center. One of
the key findings of this study was:
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While more than 90% of volunteers and professionals agree that volunteers are essential
to the hospice mission, many see structural pressures as hospice care expands and
enters the medical mainstream. Hospice leaders also expressed concern about meeting
the expenses of a strong volunteer program when medical and pharmaceutical costs
are rising and revenues are flat or declining. While survey responses indicated
a broad commitment to volunteerism in the hospice industry, the researchers concluded
that cost concerns are likely to induce hospices to reduce future investments in
volunteer programs unless their effects on patient outcomes are documented more
accurately.
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Economic pressures have increased significantly since this study was completed.
The tragic 9/11 incident and the economic repercussions that followed resulted in
the non-profit sector being hit hard by a reduction of funding to charitable organizations.
This has further compounded the difficulties mentioned in the study relating to
flat or declining revenues by hospice organizations.
One of the key elements of a successful hospice volunteer program is an effective
training program for new volunteers and the continuing education of existing volunteers.
Presently there is not an independent educational facility or program that focuses
on educating hospice volunteers for the hospice community. Each hospice independently
develops and administers its own volunteer training program. This philosophy of
"training our own", practiced by nearly every hospice in the U.S., results
in a significant duplication of effort and expenditure of resources to do such training.
The HEAL Project created the Hospice Volunteer Training
Institute (HVTI) with the goal that such an institution can reduce the costs
of maintaining a strong volunteer force through more efficient training methods.
Pediatric hospice care
In 2001 the Institute on Medicine issued a report on end-of-life cancer care
which called for a stronger focus on children. With the advent of the field of palliative
medical care, whose primary focus is easing the physical pain of death for adults,
most children who die of chronic illness do not receive this state-of-the-art care
at the end of their lives.
A pediatric oncologist, Joanne Hilden, co-chairman of the End-of-Life Sub-committee
for the Children's Oncology Group and Director of Pediatric Hematology/Oncology
at the Cleveland Clinic, said:
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"Kids are suffering. The ones who are sensing they are dying and haven't been
told are suffering from loneliness, from a lack of permission. Kids are suffering
pain because people are reluctant to give narcotic pain relief to children."
Palliative care must also address the emotional and psychological needs of the ill
child and the family … especially the issue of fear. Parents need to be better
informed on the palliative care issues, so that they know, for example, that the
use of morphine will not hasten death, that their child will not become addicted
to it, and that it does not necessarily mean that the child is dying soon.
When children are so ill that they may die, parents need information to help them
prepare, and make decisions they won't regret later. "Parents are hard-wired
not to let in the concept of death until the very end. So we must integrate palliative
care into the overall plan of care," says Hilden.
She adds, "We want these children to survive, and we continue to have that
as our goal. But if that is not going to happen, our goal becomes this: to help
children have the best 'life before death' that they can, and to help their parents
feel as empowered and hopeful as possible throughout the process."
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The 5-year-old daughter of a pair of physicians in New York City was dying of leukemia
in a hospital. No one at the hospital could bear to discuss death with this child.
Even though the child asked her oncologist directly "What will happen when
I die? How will I know I'm dying?", the doctor failed to inform the family
when death was imminent as promised.
Fewer than 10% of children who die in the United States receive formal hospice care.
This statistic is changing. On March 15, 2004 the George Mark Children's House (GMCH) opened 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.
There is a need to train qualified hospice volunteers to effectively address the
issues already mentioned in support of this relatively new area of pediatric hospice
care. The HEAL Project's HVTI plans to address this
area in its planned course curriculum.
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