Moderated by Rachel Stein / rachels83@gmail.com

Becky, a hospital volunteer, shared her dilemma in the July 1 column about ALS patient Jerry’s plan to pull the plug on his life support.

Becky struggled with his choice and with her decision to call in a rabbi against the patient’s wishes. Readers had plenty of advice for her.

Faith vs. Intellect

The column “Pulling the Plug” provides a forum for Becky, a speech pathologist wrestling with her patient’s election to pull the plug and escape his physical suffering. Becky states that “even if we don’t understand the value of lying in bed, helpless and suffering, there must be a purpose.”

Whoa! If we are not the afflicted, upon what rightful basis do we deny the self-aware afflicted person the moral authority to decide if there is a purpose sufficient for him to elect life? We often fail to walk in a stranger’s shoes regarding matters of life and death, as well as matters of the mundane.

Little effort is required to self-assuredly conclude that our life experiences adequately equip us to make moral decisions for others. It takes work, though, to gain perspective outside our comfort window, a prerequisite to confirm the validity of someone else’s contrary moral resolution.

I am speaking of something greater than empathy. Respect for other people’s decisions, where those decisions do not directly intrude upon others, is a value that is absent from the article.

Becky is unable to see beyond her religious perspective; she is certain that Jerry made the wrong decision. She assuages her own conscience by summoning rabbinical intervention, which Jerry understandably greets with a “wall of obstinate silence.” She acknowledges that Jerry has been given a death sentence but concludes that “it is not within our jurisdiction to decide how to resolve these dilemmas.”

I respectfully disagree, Becky. It is a matter exclusively within Jerry’s moral jurisdiction.

Becky, you ask readers to share what they would have done had they been in your place. I would have consoled Jerry and maybe even entered an inappropriate place by probing whether ending his life is what he really wants to do; after all, his plan followed through is final. But in the end I would respect his decision and the humanity to which he is entitled and wish him a peaceful exit.

Jerry is paralyzed with ALS, able only to move his eyes to direct a computer to speak for him. Not everyone would choose as Stephen Hawking chose. Not everyone would choose life when confronted by such daunting physical challenges.

You believe Jerry’s condition is G-d’s plan. Jerry doesn’t (or he deems that inquiry irrelevant), and your values do not trump Jerry’s. Note that I speak of moral values, not rights, which are determined according to secular law and provide the avenue for Jerry to follow through with his ethical resolution.

You reference two instances in which patients’ organs were shutting down and you conclude, “In a remarkable display of divine providence, both people experienced a full recovery.” Your implication is clear: Maybe Jerry will make a remarkable “divine providence” recovery if given additional time.

That the biology behind your “full recovery” anecdotes may be unknown does not equate to divine providence. Faith and belief are clearly the foundation for your thought process, as well as the driving force behind your fight with your conscience concerning Jerry.

To be a person of faith is not a mandate to abandon the brain G-d gave us and the free-choice corridors contained therein. Our brains give us the gift of thought and the commensurate ability to reason in a rational and logical manner. I am confident you would confess that there is no rational or logical basis for your conclusion that divine providence saved the two patients.

For you, faith and belief fill the void. I ask you to consider that our universe contains more unknowns than knowns. As each decade passes, we learn more about what makes us tick.

Maybe we will soon learn the scientific and biologic reasons why dying people sometimes unexpectedly recover and receive the gift of life for a short while longer. Until then, such unknowns are met with declarations of “divine providence.” That is the lazy way out.

Respect Jerry. Let him go peacefully (which you do in the end). Your deep belief in G-d is admirable; just remember that we were created with the power of intellect.

G-d and the power to think are not mutually exclusive concepts. The gift of intellect was not intended to be quietly stored on a shelf, unused and catatonic, alongside our appendix.

— Albert Sacks

Respect Wishes

I think people too often have an opinion of others’ situations when all we really should be doing is listening and being there. Unless we’ve been in someone’s exact situation — and even then nothing is exact — we need to respect the decisions of others.

If they ask for advice or guidance, then offer it. If they share their last wishes, we need to respect those also.
It sounds as if Jerry, being an adult and having lived his life, made a difficult decision for himself. Do we then go around and not listen to what he requested to make ourselves feel better? Perhaps, and that is something we need to reflect on.
As difficult as it may be, we need do the job given and respect the patient and his wishes.
It was his decision to make, his decision to decline a rabbi, his decision to end his life. It is the job of the caregiver to respect that. What a gift that he was able to communicate exactly what he wanted when so many others in similar situations are deprived of that ability.
A caregiver is there to attend to the needs of the patient and to respect his wishes, even though the caregiver may not agree.

To have the rabbi show up when Jerry said he didn’t want to speak to him? That upset the man’s last hours.

Hashem gave us the gift of communication; we need to respect Jerry’s powerful words. In short, I don’t feel that the rabbi should have been called because Jerry requested that he not be called.

I so respect what you do and cannot judge you, as I’m not in your shoes. Thank you for sharing your experience and asking for our feelings.

I pray Jerry has found peace.

Debbie

Unethical Choice

I’m a physician, and I would never impose a religious belief system in any medical situation, but especially in this instance.

How dare you refer a rabbi, ostensibly foreign to the patient? That’s not your job or your place; it’s highly unprofessional at the least.

Imagine you were Catholic instead, and you had a priest make a surprise visit to someone who had thought out his life for days or months — no difference. I actually might call the ethics department at the hospital and have a quality-of-care discussion.

Dan Roth

Failure of Care

I believe it is not up to us to judge others in their end-of-life decision-making. However, as a disability rights advocate and a Jew who believes in tikkun olam, I cannot sit by idly and do nothing to help when I am confronted with the suffering of others.

I must ask a question, though, regarding the nature of Jerry’s suffering. Is he suffering because he believes he will soon die or because he has a disability? Or, perhaps more likely, is he suffering because he is stuck doing nothing but lying in a hospital bed, isolated from family and friends?

Indeed, life in a hospital is not much of a quality life at all. Hospitals are not for people with disabilities; they are for sick people who need constant, skilled medical intervention.

People with disabilities and chronic conditions belong in the community with me and you. They have the right to access the medical services they need just as we do, as outpatients or through home care.

You mentioned Jerry’s communication device, but where was his motorized wheelchair and portable ventilator? And environmental control unit? Thanks to technology, people with significant disabilities can live safely and happily in homes or apartments with the right personal care and support.

I lost a dear friend three years ago. He broke his neck doing gymnastics at age 17 and went on to get his Ph.D. in psychology from the seat of a motorized chair in the 1970s. He married, had a son, got divorced and later remarried.

He developed a cyst in his spinal column and chose to lie on his back in a “wheelbed” rather than risk surgery and lose the remaining function in his arms and hands for the last 25 years of his life.

He remarried in his wheelbed, traveled and worked at home independently in his wheelbed, survived bladder cancer in his wheelbed, and was transported to the hospital, only when necessary, in his wheelbed.

However, he lived in another state and was given choices and the personal care assistance necessary to make his independent and productive lifestyle possible. Why can’t that be a choice in Georgia too?

I don’t have enough details about Jerry’s life, so I can only wonder, if he had been given more options and more support early on in the progression of his disease, might he have been able to preserve more of his quality of life? Might he have chosen to live at home until the natural progression of his disease took his last breath?

— Jana Zwerner

Becky Responds

Rachel warned me that this would be a volatile topic, and she didn’t mislead me! Thank you for taking the time to respond to my dilemma.

Most of you share the view that I should not have called the rabbi — that by doing so, I wasn’t respecting Jerry and his wishes.

I beg to differ. By calling the rabbi with the hope of getting Jerry to reconsider his decision, I showed the ultimate respect because I believe in the immortality of the soul and that this life in our physical world is not the sum of our existence. I wanted to do what would ultimately be the best for Jerry, not in his last few days, but for eternity.

You say belief in G-d and the use of intellect need not be mutually exclusive, and I agree. We are enjoined to use the mind endowed in us by G-d to the best of our abilities.

But in consideration of the fact that neither I nor any other human is capable of creating a human being, much less an entire universe, I humbly bow my head to the intellect of a supreme Master of the Universe and defer to His wishes. And His wishes are stated unequivocally in our holy Torah, the guidebook for every Jew: Life-and-death decisions are not in our hands.

I, too, hope Jerry found peace, and I wish all of you the best.

Becky

Shared Spirit is a column in which people write in to share personal dilemmas. Readers are encouraged to assist by offering meaningful advice.