The Value of Palliative Care, from a Former Patient

In the early ‘90s, I was a home hospice chaplain for Samaritan’s patients living in Mercer County. Though my own health issues forced me to cut my association short, I did appreciate those with whom I worked.

There I met Ted Taylor — a saint! 

Also, listening to two experts on palliative care – Joanne Rosen & Stephen Goldfine, MD, on the podcast posted on the Seekers of Meaning reminded me of a time long ago! 

The podcast brought back many memories, some I usually choose to not recall, and others I just choose to ignore.

When I became the hospital’s frequent flyer/revolving door patient, I gained firsthand experience with most every point made.

Laying alone, hour after hour, in a sterile room, with only my repetitive thoughts of what will be, leaves much to be desired, and tramples any hope for change.   

Now that my illness progressed to the point where I lost more and more functions and became a paraplegic, with poor vision and no voice, how could I not dwell on what is in the future for my family!!

The rabbi of my shul paid me a visit. Upon seeing ventilators and heart monitors, wires everywhere and IVs in my arms, he loudly proclaimed, “What happened to you?”

I was already apprehensive, worried, concerned and angst-ridden. Trust me when I say that reaction was NOT helpful. And, to put more salt on an open wound, he asked how I can possibly care for my kids!

Let it be known, his caring only went so far. He allowed my daughter – an A student – to NOT graduate from Hebrew school. 

Why? 

Because she missed too many Friday night services. The fact that she was visiting her mother meant nothing. She sat in the audience and watched her classmates graduate.

Needless to say, that rabbi’s visit was not pastoral, supportive, comforting or helpful.

By chance, the next day, the rabbi of the synagogue where I had taught Sunday school came to visit. I was barely over the trauma of MY rabbi’s visit, but I was determined to remain civil. 

Wait! From the moment this rabbi entered my room his concern, caring and humor were medicinal, as if they be magic pills.   

When he left, my spirits were palpably higher, I felt deep in my kishkas, that no matter what, “what will be will be,” and that is my philosophy to this day. When he left, he left such an impression that it was my defining moment.

“When, not if,” I recovered, I wanted to do for others what his pastoral care, chaplaining (I made it a verb) did for me.

Well, palliative care, which only really came about in 1990 — the World Health Organization (WHO) recognized palliative care as a distinct specialty dedicated to relieving suffering and improving

quality of life for patients with life-limiting illnesses or serious injuries) — really stepped in and helped me.

This group of involved experts gave me hope. I am not sure exactly for what, but hope was kindled.

Cardiologists’ suggestions, pulmonology recommendations, occupational therapists’ fabulous helpful gadgets, ophthalmologists who came with prisms to make the world one again, and primary care providers keeping everyone on the same page was a tremendous help to make life bearable.

Everyone seemed to know what the other advised. That was, in and of itself, so helpful and calming.  

​As a hospice chaplain, I understood thoroughly not to give false hope to a hospice patient. But I learned the hard way not to take that intangible sense of hope away from anyone. Ya never know. 

G-d works in mysterious ways. 

Who would have ever thought that in one 24-hour period someone could go from being paralyzed to 85% improved.

A spontaneous remission!

Ya never know, keep the faith!!