Imagine your beloved life partner is suddenly diagnosed with a terminal illness. Treatments fail, and you are unprepared to face the process of their dying. With all its uncertainties and complexities, you just don’t know what will happen. And you probably don’t know what your loved one will need in the way of support through this transition.
You probably would rather not think about it. You are not alone in this, but death happens daily, hourly, constantly. Ignorance may be blissfully comfortable in the short term. Forever ignoring the inevitable circumstances surrounding death, however, may exacerbate discomfort in the end.
When Dr. William Gooch experienced this exact scenario, he was not unfamiliar with death. A neurologist whose 30-year practice was based in Kingston, he knew from a medical perspective what dying looks like. Up to 80% of med students have had medical issues in their family.
“The reaction is that you want to fix it in life,” Gooch explained. “That was true for me. Both my parents had medical problems. Then when you start being subject to the ongoing illnesses in people, your soul is being rubbed against suffering. I’d chosen neurology, which is a discipline that specializes in a lot of things you can’t fix. You just support and treat some, but many things you can’t fix. That’s another rubbing of your soul against the inevitable.”
From a practical perspective, he was familiar with what our community has to offer in terms of post-treatment care, hospice services, and beyond. He also understood how important it was for his whole family’s well-being that his wife be allowed the comfort of dying in her own home.
When the time came — too soon, naturally — for her to be enrolled in hospice, Gooch quit his medical practice and stayed home to take care of her. He had the means and the will. For this neurologist, that choice was a no-brainer.
Many of us don’t have such a choice, either for financial reasons or simply because we’ve outlived anyone who could provide us with an alternative. Most of us don’t know that a requirement for hospice care is that a dying individual must be under round-the-clock supervision by a capable caretaker, be that a family member, a hired nurse, or the employees of a nursing facility.
Hospice professionals don’t provide this 24/7 sort of care. They drop in on a regular schedule to help with palliative measures, but they won’t even undertake this service if the dying person is alone or is being tended by someone incapable of adequate, full-time assistance.
“Hospice is helpful,” said Gooch, “and clearly there are some people who can manage this at home. But many people can’t afford to do it, and actually, sometimes they’d like to but are not emotionally mature enough to do it.”
This is why Gooch is involved in the non-profit Circle of Friends for the Dying (CFD), an organization chartered to open a comfort care home for the dying in Kingston. The plan for Circle Home includes caring for two individuals at a time in their last few months of life. Providing basic care in a homey environment will allow for death to take place in a less stressful way, particularly for family members or other loved ones of the individual.
The combination of professional and trained volunteer caretakers in Circle Home will give community members the opportunity to become accustomed to serving the needs of the dying among us. It will break apart the influence of the great death taboo under which we, as youth-oriented, always-forward-thinking people, operate. It will offer us all access to the realization that death is not failure. It is the natural progression of life.
Most Americans say they want to die in their homes, surrounded by loved ones. For reasons beyond their control, the vast majority of terminally ill patients die in hospitals or nursing homes. Comfort care homes for the dying have been in operation in northern New York State since 1984. There are nearly 85,000 seniors in Ulster and Dutchess counties, but currently there is no hospice facility, either private or hospital-based.
A dedicated physician who has always played a bigger game, Gooch served on the board of the Kingston Hospital and was Medical Director of Benedictine Hospital’s Acute Rehabilitation Unit. He also served as Stroke Program Director at both Benedictine and Kingston Hospitals (now merged as HealthAlliance of the Hudson Valley).
A resident of the Hudson Valley since 1988, he is invested in bringing safe and comforting end-of-life care to people in need. His participation on CFD’s board of directors has been invaluable. His generous financial support made it possible for CFD to purchase a home in a quiet neighborhood in Kingston.
It’s a local move in a more compassionate direction. The thing about death is that many of us no longer know how to die. In our contemporary culture, it’s all so dreadful and unpredictable. Any plans we might have had the foresight to make may become moot in the end, anyway, based as they are in a far-off and unimaginable future. With no control over how or when death happens, we protect ourselves with denial — which is no way to live fully.
Gooch realizes that everyone deserves the option of dying in as much security and familiarity as possible. His vision for a good death is aligned with CFD’s founders’ vision, which is grounded in the philosophy that as a community we all should take care of each other. It makes us, the living, better people.
Gooch’s commitment to promoting the mission of CFD comes from recognizing what is needed now — and what is most often unavailable to those community members who in their last days cannot afford expensive private care or who simply prefer to die in a safe, home-like setting.
“In the end my wife died in the best way possible — on our bed with all of us around her,” Gooch said. “That is why I’m doing this. The ones who can do it are not the ones we’re worried about. It’s the ones who end up getting sent to an ER for two days, then get taken upstairs, and then plans are made for them to go to a nursing home. A home for the dying is a supreme contrast to that.”
To that end, a capital campaign with the goal of opening the doors to the Hudson Valley’s first comfort care home for the dying in 2020 is under way.
This interview was written by Ann Hutton and was originally published in Healthy Communities, a special section of Ulster Publishing’s Almanac Weekly. (Photo by Dion Ogust)