By Kara Ulasewicz-Travis, President/CEO, Mountain Valley Hospice

When I arrived at Mountain Valley Hospice and the Nancy Dowd Hospice Home campus in June of 2017 as the newest team member, one of the first things I asked the staff was why there weren’t defibrillators located around the facility.  After all, stressful times call for preventive measures.  The staff collectively shook their heads and whispered loudly enough for me to hear, “She’s got a lot to learn…”

A year and a half later, I have a much better understanding of the Hospice philosophy.  We are focused on symptom management so our neighbors can focus on living.  Our work is to save souls, not lives.  There is much confusion and misconception around our industry.  We are not the Grim Reapers, death squad, or Dementors.  We are the harbingers of Quality of Life (QOL) at a time when patients and loved ones feel hopeless, exhausted, disempowered, and often without choices.

Awareness and choice are two primary goals of the Hospice team.  Many people I talk to have no idea our eight-bed inpatient facility exists in the foothills of the Adirondacks in unassuming Gloversville, New York.  I say “facility,” but it’s an architecturally magnificent home that houses eight beds where 24-hour nursing care is available for patients who have six months or less to live if their chronic illness or combined ailments were to follow their natural course – lots of medical leeway there, to be sure.  We feature home-cooked meals at all hours of the day, as well as round-the-clock visiting hours.  Our other motto: we’re happy to serve you in our home or yours.  It truly is like coming home for many of our patients – and for some, better than home.

In addition to our fully licensed Registered Nurses, Licensed Practical Nurses, Certified Home Health Aides, Masters-prepared Social Workers, and Medical Director, our MVH team also includes a variety of support services like Massage, Occupational, and Physical therapies.  Our Volunteer team also incorporates music and pet therapy into the mix.  We are truly holistic in our approach to customize patient goals and patient care.  It’s all about you – in your home or ours.

I subscribe wholeheartedly to this amazing health care that is severely underutilized across the country, particularly in New York State.  Our impoverished, rural communities suffer the most isolation and resource malnutrition.  Maintaining payment models that sustain our business and ongoing ability to serve these rural communities we call home is a crucial message that must be cried from the rooftops to our local, state, and federal government officials.  We are all about living (and defraying high health care costs in hospitals and emergency departments where our patients would rather not spend their last days).

I’ve come a long way in my Hospice onboarding to not only understand, but advocate, for our care model and the unparalleled staff who carry it out daily – at all hours of the day, in all corners of our coverage area.  However, the one Hospice tag line I can’t seem to wrap my patient-centered head around is “a good death.”  There’s this concept that we should each be able to define what we want our death to look like, and a death that’s choreographed to the best of our ability and under our personal terms will essentially equate to what the industry has coined, “a good death.”  Controversial articles abound about the opioid crisis and its impact and intersection with the Hospice industry.  There are even more controversial arguments for and against “assisted suicide” as the ultimate choice in “a good death.”  Some say that will put Hospices out of business.  Others say it’s a service line that may be adapted by some Hospices in some states.

Whatever your personal opinion and political bent, one thing has become crystal clear to me: End of Life Care is an emerging and necessary branch of health care that is not only overlooked and underserved but incredibly needed and valuable.  We meet patients too late in the process, if we meet them at all.  I often reflect sadly and regretfully on my lack of knowledge and access several years ago when my father-in-law was dying.  The family had no idea how sick he was – his choice – but remained uninformed when he landed in the Emergency Department and subsequently the ICU.  We thought he had a bad infection; in fact, his vital organs were shutting down.

Our family was ill prepared, ill supported, and ill at ease that we were in an ICU waiting room instead of our living room surrounded by pets and creature comforts. We were discussing his End-of-Life wishes over loudly beeping equipment at the hospital bedside without his voice to guide us.

Our lives would have transitioned much more peacefully and meaningfully if we had access to Hospice services in the months leading up to my father-in-law’s ultimate demise.  Instead, his passing was traumatic, horrific, and tragic.  It took months for us to sort through the experience afterwards, again without the support of the experts.

At my father-in-law’s funeral, I read an excerpt from Garth Stein’s The Art of Racing in the Rain, a story about a race car driver’s dog who is dying and reflecting on life with his human: “There is no dishonor in losing the race.  There is only dishonor in not racing because you are afraid to lose. To live each day as if it were stolen from death, that is how I would like to live.  To feel the joy of life.  To separate oneself from the burden, the angst, the anguish that we all encounter every day.  To say I am alive, I am wonderful, I am.  That is something to aspire to.”

Whatever your affiliation with MVH, be it a donor, an event goer, an employee, a patient’s family member, a recipient of grief counseling, a dedicated volunteer, or someone interested in help but afraid to ask for it, we exist to enhance the lives of those we serve by honoring what matters most.  Quality of Life (QOL) and End of Life (EOL) are interchangeable for us.  We may not be focused on curing what ails you, but you can rest assured that we will focus on how you feel so you can focus on living.  After all, we are in the business of saving souls.