History of Coastal Family Hospice
1979 – 2008
Coastal Family Hospice (CFH) came into being the summer of 1979 just 12 years after Dame Cecily Saunders founded the first modern hospice, St. Christopher’s, in London. As a nurse, social worker and physician, working with the dying, Dame Cecily saw how a multi-disciplinary approach could enhance
the quality of the lives of terminally ill patients.
The hospice philosophy arrived in this country in the early 70’s with the first hospice established in New Haven, CT in 1974. The movement spread quickly across the country and when CFH was being formed in 1979 there were already 2 hospices in Maine – Portland, and Bath/Brunswick.
Early organizers of CFH included Val Gates, Rev. Don Henderson, Trudy Worthington, Patty Smith, Brenda Hartt (Squibb), Steve Ross, M.D., Peggy Hamill, Nancy Hanrahan. and Rev. John Inesin.
Steve Hanscom was their legal counsel.
Putting all the services into place was a huge undertaking. There were no instructions, no guidelines to work from and few resources to research? They were starting from scratch – making it up as they went along, so-to-speak.
Along with becoming incorporated and acquiring their non-profit status, there were issues to be addressed such as the training of volunteers, how to inform physicians about CFH’s presence in the community, and how to bring awareness to the public. There were questions about how to receive referrals, what services will be offered and who will receive them as well as the geographic area covered?
Through the early 80’s CFH solved many of these problems while increasing their volunteer corps and developing related programs such as cancer support, volunteer support and bereavement support that included parents, children and spouses.
They sponsored educational events for both the volunteers and the community that included seminars, workshops, lectures and discussion groups. They brought nationally prominent speakers like Joan Borysenko, Sherwin Nuland, Loretta Laroche, Bernie Seigel and Judy Tatelbaum. As well as raising awareness of End of Life issues, these events were an important source of income, some raising as much as $5000.
By October of 1985 there were 70 trained volunteers – 48 active, 33 active w/ patients. In 1988 there were 120 trained volunteers from all over the mid-coast area.
It should be noted that CFH and Belfast worked together for several years, sharing trainings and support groups. This association continued for several years until Belfast formed its own hospice that became associated with Waldo County Hospital.
Until about 1985, Board members took responsibility for everything including the coordination of the patient/volunteer assignments. There was no office space. A dedicated elephone was used for communication.
Brenda Hartt (Squibb) was the first Volunteer Coordinator but was unpaid. In 1985 Jill Charbonneau was hired as Volunteer Coordinator at $5.00/hour for 15 hours/ week. Robin Guist took over when Jill resigned in the fall of 1986 and by 1987 earned $8/ hour and worked a 10-hour week.
In 1986 Paul Charbonneau was hired as Executive Director for a few years. There was considerable attention focused on regulations at both State and National levels and even the local level, with many meetings and decisions to be made, and it was impossible for the volunteer coordinator to fulfill those obligations as well as her patient / volunteer involvement.
In 1989 the budget was $23,546.
Until fall of 1985 meetings were held in Board member’s homes. Their first non-residential meeting space was at John the Baptist Episcopal Church in Thomaston where they paid no rent.
In 1990 they moved to the KWL office on Park Street in Rockland where they paid a fee of $990/ year for a 100sq. ft. cubicle.
In the fall of 1983, the new Federal Medicare Hospice Benefits Program was made available to persons with less than 6 months life expectancy. In the early years it wasn’t well utilized. Throughout the mid to late 80’s KWL and CFH were sharing patients and when both organizations realized their patients could benefit from the professional help of nurses, aids, medicines and equipment offered by the government Hospice program, discussions began about CFH becoming the volunteer component under the new Federal program which mandated that 5 % of the care-giving come from volunteers.
In 1992, CFH joined KWL. Under the agreement, KWL acquired all the business affairs of CHF with the exception of $34,000 in endowment funds that CFH had raised over the years from events and memorials, as well as gifts from grateful families and local friends. The original CFH Board was dissolved and reformed under the name Hospice Volunteer Board with members from both CFH and KWL
The $34k endowment fund was placed under the management of an independent group of 5 CFH volunteers called the CFH Foundation Board, whose purpose was to manage the investments and use some of the interest earned for the education and enrichment of Hospice volunteers and other hospice related educational purposes. Those wishing to receive scholarships for seminars, workshops etc., formally applied by mail and the amounts were given at the discretion of the Foundation Board.
From 1992 through 2001, almost $9000 was awarded for educational purposes. Gifts ranged from $25 for attendance at a local seminar to $500 for a volunteer to attend a Music Therapy workshop in Arizona.
In the late 1990’s government reimbursement wasn’t covering the cost of home health care. KWL realized a financial deficit of several hundred thousand dollars, cuts were made and one of the positions eliminated was that of the Hospice Volunteer Coordinator, the heart of the volunteer program. This job was folded into the Nurse Clinical manager’s responsibilities and it just didn’t work. Hospice patient census dropped to by 70%. The volunteers were underutilized, became disenchanted and many drifted away or cancelled their involvement.
For several years no trainings were held and the program faltered. More sadly, patients were not being given the option of the hospice benefit through Medicare.
In the spring of 2001 a large group of volunteers who felt strongly that the hospice program shouldn’t be
allowed to die, met informally and began the process that would lead to the re-establishment of Coastal Family Hospice as a separate entity, licensed by the State of Maine as a volunteer hospice organization.
In October of 2001 the Board of directors of the Coastal Family Hospice Foundation met and voted to
dissolve and reconstitute itself as the Board of the newly-formed organization called Coastal family Hospice Volunteers. It’s notable that the 35k the Foundation invested had grown to almost 45k over the 9 years, a fund that helped pay for expenses incurred during the reorganization.
Throughout the following months it was necessary to revise the Bylaws, write policies, secure insurance coverage, revise the non-profit status to reflect the new entity and file with the State of Maine for a license which was received in May of 2002.
Throughout this process, KWL was supportive of CFHV’s efforts and in the spring of 2002 a contract was signed whereupon KWL and CFHV became partners in the delivery of hospice care in Knox and
Lincoln Counties. Although the volunteers worked with the Medicare hospice patients under KWL’s program, they were also available to any community client in need of non-medical hospice or bereavement care.
The first Volunteer Coordinator was Mary Beth Hill who served for 1 1⁄2 years. Ann Cole became the next Volunteer Coordinator and ably served until August of 2009 when our current Volunteer Coordinator, Carol des Lauriers Cieri was hired.