Since the year 1900, Americans have, on average, added an incredible 30 years to their lifespans, up from an average of 47 years to 77. But give or take 30 years more, die a human being must.
In Kingston, a non-profit called Circle of Friends for the Dying has set out to create and oversee a safe and comforting residence for people in need of a home and primary caregiver during their final months. Jim & Lisa’s Circle Home, the house on Wurts Street in the Rondout, was donated upon his passing to the foundation by the owner, a client of a cancer oncology support program, to provide for those unlucky souls without resources, often without family, who find themselves standing under the threshold between life and death without a place in the world to call their own.
Lisa was Jim’s wife.
“It’s a home for the person with the most need,” explains Ann Hutton, secretary for the foundation, “and the least resources”
A hip-high wrought-iron fence borders the property, and a Juliet balcony stands on a portico roof over the main entrance, a half-circle supported by stone columns. The entrance is grandly appropriate for the residents it hopes to welcome.
Off to one side, a wide, flat porte-cochere projects over the driveway. One can imagine a time when, sheltered from the rain, horse-drawn carriages stopped underneath to let passengers out onto the mortared and flagstoned driveway.
In the back yard, a painted wooden pergola has been erected. There are plans in the works to build a small fish pond.
The house is stately, and if the time is right there exist many worse places to die.
Because of zoning regulations, the entire home can only provide for two residents at a time. The bedrooms are spacious, each near 15 feet wide and a dozen feet long. Residents will have the use of a sitting room and library. A common area will be set off to the side from a kitchen so that the residents can cook and mingle with visiting family members or friends, who will be able to stay over in a guest bedroom.
The organization is raising money to install an elevator large enough to fit a wheelchair or small gurney, to be available for those who would rather be done with climbing the stairs entirely. An ADA-compliant ramp allows wheelchair access to and from the back yard to the elevator.
The place can be designated a resident’s primary home, a legal distinction allowing hospice services through their local agency. “We’re so lucky to have this property,” says Hutton. “It will be volunteer-run 24-hour care. The residents will not be charged.”
Pain treatment ladder
How did all this all come about?
While much attention is focused in the United States on prevention and cure, paltry little by comparison is focused on what can be done to ease the passage for those suffering where the possibility of a cure is waning.
For those thus afflicted, there exists palliative care, which the National Institute of Aging defines as “specialized care for those living with a serious illness .…” This shorthand is understood to mean that drugs are now prescribed to manage the side effects brought on by a course of treatment.
Chemotherapy is the prime example. A drug regimen is introduced intravenously into the blood stream in hopes to cure potentially terminal cancer. While the treatment attacks a tumor’s cancerous cells, because the regimen is cytotoxic its poison is indiscriminate. It also kills off healthy cells. The World Health Organization recommends a “cancer pain treatment stepladder” to help doctors decide what strength of pain-relief medication should be prescribed. Opioids are at the top rung of the ladder, and other medications known as adjuvant analgesics are used to balance or enhance effects.
Offered in the process of trying to cure a dying patient, a cloak is thrown over the pain. This is palliative care.
When medical science can no longer be counted upon to manage illness, when all that can be done has been tried, the patient’s condition is recognized finally for what it has become. Terminal.
The option of hospice care alone remains.
In practice, hospice care becomes available to the terminally ill when they are expected to have six months or less remaining to live.
Local pioneers
Physical, psychological, social, emotional and spiritual, hospice care attempts to address these areas of a vital life well lived. It is the only Medicare benefit that covers the cost of pharmaceuticals, medical equipment, and 24- hour access to care.
Hospice care can be administered at the patient’s home, or at a facility such as a hospital or nursing home. Or at a separate hospice center.
There are currently no hospice facilities or hospital-based hospice units in Ulster County. Admittance to a home is by referral from a hospice program, when the patient has less than three months to live.
The brainchild of Elise Lark, the Circle of Friends for the Dying (CFD) was co-founded in 2012 with Laurie Schwartz and Barbara Sarah. Recognizing the need for alternative end-of-life care settings in her community, Lark’s experiences as a clinical social worker at the HealthAlliance Hospital oncology support program and a member of its palliative care team informed her realization.
Schwartz was one of the early leaders of the hospice movement in the United States. Also a co-founder and director in her own right of what is now Hudson Valley Hospice, she has trained hundreds in the arena of dying, death, and bereavement.
Barbara Sarah launched the oncology support program at HealthAlliance Hospital in Kingston, when she started a breast cancer support group following her own diagnosis in 1992.
Compassionate solutions
As impressively as these women figure in modern end-of-life care, they are just the latest iterations of a trend that runs like a long, empathetic thread throughout the history of compassionate solutions.
They are the spiritual successors to Woodstock native Gale Brownlee and Sister Mary Charles, who together chartered the first hospice program with the aid and support of Benedictine Hospital.
At present, there are approximately 30 Homes for the Dying statewide, each independent.
Elise Lark will soon retire from the foundation board and become home director, a paid position. Her job will be to get the home open and to direct its operations.
Ann Hutton hopes is to get the operation up and running in the latter half of this year.
Circle of Friends for the Dying is supported by fundraising, grants, endowments, and contributions from community members, local businesses, and residents and their families. Information about the home and the “Lift Us Up” fundraising campaign to get the elevator installed is online: https://www.cfdhv.org/
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