I want to begin this essay with an acknowledgment: I believe hospice performs extraordinary work in life’s final stage. I know that hospice care varies from place to place, but I personally have never seen a dissatisfied customer – and by that, I don’t mean only the patients, but also the families and friends who hover respectfully and sensitively around a soul about to make that most universal and singular of journeys. Hospice provides a gentle, humane and dignified death, almost always without pain, agony or struggle. This may not be everyone’s experience, but it surely is mine.
Still, I have some deeply seated emotional reservations about hospice and I share them with you simply to spark conversation, not to effect conversion.
First, we must concede that going into hospice is a one-way trip, next stop: eternal rest in the shelter of God’s wings (or so the prayer tells us). They will keep the patient comfortable and at the request of the family, hydrate and even feed the patient (but not intravenously), but most of their care is palliative and the “cocktail” of pain killers usually hastens what they call “the transition” from life to death. It really isn’t a bad way to go. I have been at hospice bedsides many times as people expired and believe me: it wasn’t in any way awful. Still, I have never counseled hospice care unless all of the ducks were in a row. By that I mean: the patient is terminal, the family, the nursing facility or hospital are not up to the task and the patient is ready.
I offer three vignettes – all from my reservoir of memories – which are illustrative:
When my mother went into severe congestive heart failure, I hesitated to turn to hospice. She had already expressed her disinclination to go. We had discussed it (she was completely sentient until the last three days of her life) and she was in the hospital where they were “doing everything” for her. In retrospect, this was a decision that she made and I breathed a sigh of relief because I wasn’t ready to admit the inevitable. I slept in her room for three days, called the nurses when they were needed and tried to be a “good son.” She had one bad night which the nurses took care of quickly. She slipped away, her breathing more and more labored, until finally I said, “Let go, Mom, we’re all here and we love you.” Rather dramatically, she took her last soft breath and died – in my embrace and in the embrace of her grandchildren. It was not a bad death, accomplished without hospice. It was the way she wanted it. Honestly, it was the way I wanted it. The ballet between holding on and letting go is a tour de force of emotion, doubt, resignation and improbable, naïve hope.
I was called to the hospital to see an old congregant and friend who had suffered a debilitating stroke. I met with his wife and primary care physician. Both were of the same opinion: it was time for hospice. Already compromised by failing kidneys (he was by then in dialysis) and a baker’s dozen of other maladies, there really didn’t appear to be any more options. But, he was also a very tough, old guy, a survivor who had seen Kristallnacht with his own eyes and went on to be one of ABC’s top sound technicians. I entered his hospital room and as soon as he saw me, there poured forth a steady stream of gibberish, except it had a familiar ring to it. What initially appeared to be incomprehensible babble turned out to be slurred French. At that moment, I silently thanked Miss Turowski, my high school French teacher, who gifted me with the ability to speak rudimentary French, albeit with a Polish accent. In what would have brought a smile to the face of anyone who speaks the language, there began a fractured conversation between a stroke-impaired patient who hadn’t spoken the tongue since he was eight and a barely conversant Rabbi who actually produced either giggles because of my linguistic ineptitude or scowls because I wasn’t making any sense. How rapidly the shoe moved to the other foot is still a source of amazement and amusement. The conversation went something like this:
“Tomorrow, they’re going to move you to hospice”
“If I go there, I’ll die.”
“They tell me there are no treatments left that will be helpful”
“I still do not wish to go.”
I reported this back to his wife – who didn’t even know he spoke French – and there was a “hold” placed on his entry into hospice. Instead, he went into a long rehab regimen and to make a long story much shorter, he died three years later with a bite of Hamantaschen in his mouth (it was Purim). I know that the three+ years were not easy on his wife, but I would see him occasionally at the Temple and in restaurants around town. He reclaimed some of his speech, but when he encountered me, he would playfully revert to French. One who saves a life, it is as if he/she has saved the entire world (Talmud Sanhedrin, 37a).*
The “Golden Years” sometimes glow with a patina of dazzling proportions. Other times they are a travail of declining health and ever eroding independence. As autonomy, self-sufficiency and freedom of movement wear away, living sometimes becomes an assisted affair. From a home or apartment one can move to an adult congregant living facility. The next station on this odyssey may be a nursing home. The last destination may be hospice. Save for the final stop, there are still positive and enduring quality of life dimensions to be had. After all is said and done, I have found that people who possess the oft-quoted “clean hands and a pure heart (Psalm 24)” make these passages with greater ease than those who “rage against the dying of the light (Dylan Thomas).”
I had known one woman for eighteen years, always ill in some way or another and her years kept piling up. With them came moves as described above while age and illness conspired to constrict her life and narrow her horizons. Still, I never heard her once complain. I never saw her hands idle or her spirit diminished. Whether I visited her in assisted living, the nursing home, the hospital or hospice, the first words out of her mouth were always the same: I love you. Hers was a special soul, fully cognizant of what life can randomly and inexplicably deliver, but unwilling to surrender to either despair or hopelessness. When she went into hospice, she did not go kicking and screaming – and resignation was not a part of the equation. She went with the full knowledge that this was where a long life had taken her. She went with no bitterness or regrets and she died the same way.
By its very nature, all experience is anecdotal. These are but three of mine surrounding and informing an issue from which there is no escape. As “boomers” these are among the decisions and experiences we will have to negotiate. Please give this looming inevitability some thought now; there are enough surprises – always – on the horizon.