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35 years of hospice care

SARANAC LAKE — Last Friday, Ann Merkel and other original High Peaks Hospice founders gathered at The Saranac Village at Will Rogers, where filmmaker Jim Griebsch began to create a video to document the story of High Peaks Hospice’s beginnings.

High Peaks Hospice’s 35th Anniversary celebration will be held on Thursday, June 2 from 5 to 8 p.m. at the Saranac Waterfront Lodge in Saranac Lake.

The new video will be shown and Ann Merkel and other founders will be there.

Starting end-of-life care

Merkel grew up in New Haven, Connecticut where the first hospice in the United States started in 1974.

In 1986, Ann and her husband, the late Dr. C. David Merkel, lived in Saranac Lake. That year, Medicare determined that dying was no longer a diagnosis that warranted a hospital admission.

Families were struggling to manage the death of their loved ones unsupported at home. The Merkels keenly felt the lack of compassionate care options for the dying. So, Ann and David decided to do what they could to start hospice services locally.

“It’s a very exciting event for a group of people that started the hospice,” Ann Merkel said.

“It has helped many, many people in the North Country here.”

From the ground up

In 1982, Medicare authorized reimbursement for hospice care. The program was unique, providing family oriented comprehensive services which included medical, nursing, social work, spiritual care, volunteer support, bereavement services as well as the availability of specialty care by physical therapists, nutritionists and speech therapists.

It would cover all medications related to comfort and symptom management as well as durable medical equipment and oxygen. There are no co-pays or deductibles, no bills to process. Care could be provided anywhere, at home or facilities, and available to any person, with any diagnosis with a prognosis of six months or less.

In 1986, the Merkels went to work. Their first step was to reach out to Katrine Krester, director of Franklin County Public Health Department.

As a state health agency, it had the authority to provide hospice services but the Tri-Lakes spanned multiple towns and two counties, so an independent hospice would need to be formed.

Katrine worked hand in hand with the Merkels to learn about hospice and understand the regulations. They contacted the New York Department of Health to begin the process of becoming a certified hospice program. The message they received from the DOH was that it would be impossible to organize such a comprehensive program in such a small community. It was too complicated and required so many services. It was out of reach for such a rural area.

Ann and David Merkel were not discouraged. They began the process by completing a Certificate of Need providing statistics on the number of deaths and the lack of available care options for the dying.

Merkel hand carried 27 copies of the certificates to the Department of Health in Albany delivering each to the appropriate office.

The Merkels then proceeded to rekindle the health care spark from Saranac Lake’s legacy as a haven for tuberculosis care. With that spark and the extraordinary volunteer spirit of Tupper Lake, Lake Placid and Saranac Lake a local hospice movement was underway.

Team building

Ann and David gathered a team.

Merkel engaged with his partner Robert Kasulke to spearhead the medical care.

Kasulke became the first High Peaks Hospice Medical Director, and today he continues to serve as Medical Director for the Hospice in Jefferson County.

“When we initially founded the hospice, the organization was in its formative stage, obviously, from day one,” he said.

“Our service area was the Tri-Lakes area. Of course, now it has morphed into something much larger area wise, and the coverage is much larger. In those days, the federal government, Medicare specifically, decided that unlike in previous years, hospitals were not going to get reimbursed by Medicare for patients who went in there to die. It’s just as plain and simple as that. They sort of decreased the funding for that particular event, and they stopped paying for it. Well, most people in those days had no idea what hospice was, the patients and the families didn’t. It was a radical change for them, and they are not comfortable taking care of someone who was actively dying not at home, not in a medical situation.”

One by one professional and lay volunteers stepped up to commit their time and expertise to provide all the necessary services required to receive hospice certification.

Jimmy Bevilacqua served as the required compounding pharmacist available 24 hours per day.

Sr. Camillus, director of Uihlein Mercy Nursing Home in Lake Placid, worked to ensure hospice services would be available to nursing home residents. She also provided an opportunity for new hospice volunteers to be introduced to working with the infirm. Alice Scollin, with masterful organizational skills, recruited and coordinated volunteers for family support or office work.

Funeral director Andy Fortune started the bereavement program, supporting families for 13 months following the death.

Father Rick Dennis took charge of the spiritual care and coordinated with other ministers, to provide end of life comfort in patients’ homes.

Fr. Dennis’s wife Connie Dennis, who was the Executive Secretary at the Saranac Lake Voluntary Health Association, facilitated the loan of medical equipment from SLVHA to hospice.

Home office

The original office for Hospice was a den in the Merkel’s home. But the community helped here too, and initial offices spaces were provided free by the Trudeau Institute and the American Management Association. Madden’s Storage donated office furniture.

“It started on in a small office on the second floor of our house on Park Avenue,” Ann Merkel said.

Most projects of this magnitude take years to come to fruition, but in less than a year High Peaks Hospice opened on a strictly volunteer basis, providing home care in the Tri-Lakes. In 1988, they received their license from the state Department of Health and became eligible for reimbursement through Medicare.

Two years later, a small hospice support group in Elizabethtown asked if High Peaks Hospice could extend their reach and soon all of Essex County was added.

In the early 1990’s the Hospice of Warren County joined in. What started as a mission of two people quickly became a triumph of volunteerism and community spirit.

“What our initial impact was, of course, was when we we started admitting patients and treating patients at our hospice,” Kasulke said.

“We took the place of the hospital. The patients were allowed to stay at home. They had comfort care. We had nurses that were specifically trained in hospice, volunteers that were specifically trained in volunteering for patients who were more likely than not would be a typical patient on a hospice, and with social workers that would take care of the families who are in hospice. Because the families were sort of thrown off balance by this terminal diagnosis of their loved one. You don’t really feel like filling out papers for Medicaid, and Medicare, etc., etc. They helped with all of that. and if they had spiritual needs, of course, which many of them do, we had people who would help with that need also.

“We had all of that going from day one. The need was that, again, patients could not be admitted to the hospital. We took care of them at home. Gave them comfort and interacted with their personal physicians or other situations they had. That was the main thrust of how we affected our Tri-Lakes area patients.”

High Peaks Hospice provides dignity, comfort and peace at the end of life. It serves 5,400 square miles including all of Essex and Warren counties, southern Franklin County and parts of Washington, Hamilton and St. Lawrence counties.

“Early on when we started, the Hospice Movement was pretty much mature in England and Canada,” Kasulke said.

“It wasn’t really a well-known entity in the United States in the early ’80s. Of course as time went on, it has become sort of a household word, hospice, and the whole movement if you want to call it a movement, has matured to the modern area.”

Hospice movement

Dr. David Merkel served as Medical Director of Hospice until his death in 2012.

For many years, Ann Merkel remained very active in High Peaks Hospice, serving as the initial Executive Director and then president of the board of directors.

She has also served as past president of The Hospice and Palliative Care Association of New York, where she worked to expand access to hospice care in rural areas throughout the state.

“It was wonderful in two areas,” she said.

“First of all, all the volunteers that came out from just everywhere wanting to help start a hospice in the North Country. Secondly, for all the medical professionals that wanted to donate their time as volunteers at no charge at all to help us start the hospice. That was just extremely exciting for me. It was something I had never experienced or seen before in the various places that I had lived.”

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