Life Is Precious. Does That Mean We Have to Prolong It At All Cost?
Rose‘s skin seems to be transforming into implausibly thin, mottled parchment. She was never a big woman, but now that dry, once-soft outer shell lies draped over her slowly-wasting bones. Her memory is failing. Her hair is reduced to white wisps that barely cover her scalp. She can’t walk, and can’t stand up without the help of two people — often family members, often members of the nursing home staff. Every transfer from her bed to her wheelchair, and back again, is fraught with the possibility of another fall and more broken bones. Conversing is difficult for Rose and her visitors, because her mind is fuzzy and her hearing half-shot. She sleeps 22 to 23 hours a day. On and off, she’s in pain.
She’s my wonderful mother-in-law, and she’s dying.
Not even a dozen years ago, she accompanied my wife and me and our three-year-old daughter on a trip to China, where we adopted our second girl (Rose helped pay for the adoption, and she was our rock on that difficult trip). A couple of years before that, I remember playing tennis with Rose on the hard courts of her Virginia hometown. She was already past 70 then. Still feisty. Still lovely in her own way.
Time took that away from her.
Now she seems halfway gone mentally, though her husk of a body lingers. Her husband, Dan, my father-in-law, is scared at the thought of losing her, and is trying to keep her alive. Rose is too weak, and too meek, to protest, although she has said in so many words that she’s ready to die. When she says she doesn’t want food, Dan tries to coax her to eat. Sometimes, when she expresses a desire to sleep, he does what he can to keep her awake, hoping she’ll watch the game with him, like old times.
Their five children are at peace with letting Rose die and have quietly planned her funeral, but no one quite dares tell the family’s patriarch how to proceed. Maybe no one truly knows what’s best. Maybe it isn’t their place. Who gets to decide these things? Shouldn’t Rose?
It may not matter that my in-laws are fundamentalist Christians; I imagine these dynamics sometimes play out in secular families, too. In any case, Rose and Dan see life as a sacred gift from God. But it’s clear that Rose’s current life is a burden to her more than a gift. And for once, I find myself quietly cursing science and medical advances — or at least, I bristle at how thoughtlessly we apply them. We use them to prolong the exits of millions of people every year, keeping them alive up to and past the point of indignity. A generation or two ago, Rose might have expired with quality of life more or less intact — sooner, but arguably better.
Her long decline, surrounded by beeping, whirring technology that monitors her and beeps rhythmically and always wants access to her half-collapsed veins, is not something I’d want for myself. I reject the all-too-common ending described in a gut-wrenching recent article by Dr. Louis M. Profeta, an emergency physician in Indiana:
[ We] can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip. You see, now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in cage of bed rails and soft restraints meant to “keep her safe.”
She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew. She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up exposing the underlying bone, which now becomes ripe for infection.
Almost half of the elderly population in the U.S. dies in nursing homes or hospitals. When they do, Profeta says,
… they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways. We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heartbeat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”
Me, I keep coming back to this. After Rose dies, people will say they hope she’ll rest in peace. Shouldn’t more of us have considered giving her peace sooner, when it still mattered, before she passed away?
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Talk about a horrible fate. Imagine being in such bad condition, but so guarded that you couldn’t even end your own miserable existence even if you wanted that more than anything else in the world. That is hell on earth.
Thanks for the article, Hal, I've been a strong advocate for the right to die for many years now.
I watched my mother die of cancer in the palliative care ward. When she was too weak to respond and couldn't push the button for another shot of morphine, they cut back her morphine to almost nothing and I believe she was suffering for the last two days before she expired. As far as I'm concerned, the palliative care ward is a torture chamber. There's no damn way they will ever do this to me.
If a person wants to end their life, for any reason, they should be supplied a pleasant way out, an overdose of painkillers perhaps. I recall a story from years ago about a woman who wanted to die with her terminally ill husband. They wanted a painless potion so they could decide together when to check out. There is nothing wrong with this. Life is just temporary, and the medical community needs to start respecting people's autonomy over their own lives.
Also, in a related thought, we can easily end a person's life painlessly, yet we choose to torture people to death when we execute them. This is one of the most sickening things about our society.
Situations such as this highlight the necessity of having Advanced Directives and making one's wishes regarding the prolongation (or not) of life known to family members. It also demonstrates why we should have assisted suicide laws. Allowing or helping a person to die on their own terms and wishes is more paramount than keeping them alive in pain just for the sake of keeping them alive. Never mind the lack of any quality of life. When an animal or pet is sick or injured, we put them down and call it humane. But when it's a person, we do whatever we can to keep them alive, regardless of their prognosis or quality of life. Why are humans treated differently and less humanely?
My mother died of brain cancer when I was still in high school. My father was already remarried after a messy divorce. Despite the difficulties, my step-mother and I came to appreciate each other, and then to have real affection.
She developed a rare form of leukemia, that the doctors simply could not control. Her last years were slow, miserable decline.
My father loved her deeply, and could not imagine or accept losing her. As her chemotherapy became more and more debilitating, she finally decided that she did not want to go on. My father was dumbfounded. "But... no! You can't go... I can't imagine life without you... I love you..." And then he understood that the kindest thing he could do was accompany her on that last short trip.
He was devastated.
He lived another forty years, and remarried twice.
Dear Friend Hal: I am available for you and yours in whatever way(s) you and they need and want me during this time of travail, and afterwards when voids need to be addressed.
My private notes, and personal email always open to you.
As ever, all communications remain confidential.
As always, your values and perspectives will be respected.
May peace, comfort, and solace come to you, so you can be strong for those you love who need that fomr you now and going forward.
Enoch.
I appreciate the offer, but to be clear this is just a seeded article that I found noteworthy. I don't know these folks, but I can understand the horror of being kept alive against your wishes - like some kind of lab experiment.
Not for me as a fan of Doctor Jack.
When my hourglass is empty my time is up, whether it be by my choice or natures. But it is a choice many will have to make when the final grain drops (but let us hope, not today). Something we all handle in our own manner.
Several states and DC have variations of a "death with dignity" law. I'm glad I live in one. It should be a right everywhere.
My late husband he did not suffer or linger.
He had pancreatic cancer......the last weekend of his life he was still functioning.
We had an appt. on Monday at Roswell to see how the last round of chemo did, that day even before we left the house I could tell at times he was altered.....the chemo did not do what it was supposed to, I was told he may have delusional moments (and yes he did) and don't take to heart what he was saying. Before we left I had contact with Hospice to come to my house.
The rest of Monday went fine.
Tuesday he was okay.
Wednesday was when Hospice brought the supplies to my house, by the afternoon he was completely altered, thankfully many family members were at the house helping me.
Thursday he only woke up a few times but was very incoherent. He died at 8:08 pm in my arms. The hospice nurse told me by the look on his face he went peacefully.
Pancreatic Ca is one of the most lethal types. I'm very glad for him (and you) that your husband didn't suffer or linger and that you were able to comfort him to the end.
I only wish that assisted suicide was an option and that I'd had the courage to say yes when my wife passed many years ago instead of her living through the 11 months of hell she, I and to a lesser degree the kids (they were very young) had to endure. There is definitely a time when death is a better option than life.