Cruel and all too usual

There’s a good, long piece in the Huffington Post by Lloyd I Sederer, a doctor, describing his mother’s decline and death. He describes a problem which is going to become more and more common.

Longevity is not all it’s cracked up to be. If we are lucky enough live into ripe old age, our dying may well be a protracted and unbearable ordeal prolonged beyond humanity and reason by attentive medics. That’s why more and more people are going to Switzerland to swallow hemlock.

It’s something society needs to address with some urgency. The problem is already big and it’s going to get huge.

Here are some extracts from the Huffington piece. I’m sure they’ll impel you to read the whole thing.

My mother died on a Monday a few weeks ago. We buried her, in the Jewish tradition, the next day. But we lost her more than a year before when a cardiac event she survived robbed her brain of the oxygen that sustains it and ushered in a dementia that took her away well in advance of her death.

The mental torment of dementia is what gives it its unique cruelty. As horrific as the psychic pain of dementia is, I wonder if it gets the recognition it warrants. Medical care has come to appreciate the crucial importance of mitigating physical pain but mental pain, no less agonizing, has yet to receive its proper due. Psychic pain is equally distressing as physical pain, and to make things worse, for dementia it has few good remedies.

I know death was a relief for my mother — a desired end … She also had made her wishes perfectly clear years before in her health care proxy and power of attorney. She understood, though never used the term, what dying with dignity meant.

…decisions abound during the process of first declining then dying. Not to mention the often tortuous decisions about money, there are decisions about treatments: how should someone be treated for their illness as well as the cascade of complications that frequently befall someone as their immunity diminishes and their infirmity increases. There are decisions about care taking … the most well known decision is whether to DNR (Do Not Resuscitate), but the questions are far more nuanced, as a rule. Here is where a living will or health care proxy is a blessing.

My mother’s time was ushered in after she fractured her hip trying to climb out of bed during a night of terror we could only infer was from her distress. But here is a story about American medicine that needs to be told.

The fracture was discovered some days after it occurred when she was rushed to the hospital with trouble breathing. I received a call from the physician’s assistant to the chief of orthopedic surgery. My mom had a hip fracture but the bone had not been displaced from its socket … She was in no pain. The PA said they wanted to operate, to place a set of screws in her hip … I called back to say no and soon received a call from the surgeon himself to urge me to proceed with the surgery.

That moment was a wake up call for our family. We asked ourselves what would give mom the best moments of life and experience in the time she had left? We realized that goal would be best achieved if we placed her in hospice care. This may sound oxymoronic, but when the time comes give it a try. Fundamental to hospice, contrary to common understanding, is how to make the most out of what time remains, not how to deny care or bring life to a rapid conclusion.

Fighting death and disability at the end too often steals what few moments of actual life remain for someone facing imminent passing. For my family, it was human kindness and eschewing aggressive and dubious treatments that enabled our mother to savor at least a few good moments while still on this earth. But thankful as I am for that I still wonder, until we have more miracles in medical care, is there a better way than the path we are so stubbornly now on?

Find the entire article here.

The terrible price of longevity

Here’s an incredibly powerful and superbly written account from the New York Times about the consequences of life-extending interventions by medics.

It begins:

One October afternoon three years ago while I was visiting my parents, my mother made a request I dreaded and longed to fulfill. She had just poured me a cup of Earl Grey from her Japanese iron teapot, shaped like a little pumpkin; outside, two cardinals splashed in the birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. “Please help me get Jeff’s pacemaker turned off,” she said, using my father’s first name. I nodded, and my heart knocked.

It’s a gruelling read, and worth every word. You can find it here.

Cash for corpses

You can tell how developed a society is by the price it puts on life. Could, rather. In the most developed societies there’s a re-evaluation going on. The Office of National Statistics calculates that death is now preceded by the unendurable prospect of an average 10 years’ chronic illness or dementia. It scares the hell out of us. No one wants to go there.

So there’s a national conversation about assisted suicide and self-deliverance. We read about Debbie Purdy and lovely Omar and we say, “If that was me… Yes, of course she should be allowed to. It’s what I want for me, too.”

What price life, now?

What price keeping all our old people alive, too? Can we afford it? Can we not incentivise them in some way to sign up to an accelerated end-of-life care plan? Yes, we’ve got ADRTs, a thin end of the wedge, but something faster? Because if we don’t, there’s going to be a heck of a doubly-incontinent lot of them when the baby boomers start their final, slow descent. And I don’t know who’s going to look after them. And I don’t know where the money’s going to come from. No one does.

So we’ve identified a brand new human right: the right to die. There’s been remarkably little fanfare about that.

But with rights come responsibilities. Have not the old a duty to vacate the stage, leave the building?

We’re getting our heads around it, this de-sanctification of human life. We’ll get our heads around the eu-word. We’ll have to. We have our abortions, after all.

So it’s interesting to see the Nuffield Council on Bioethics talking today about ways to incentivise organ donation. In the words of Management in Practice:

Under the Nuffield Council on Bioethics’ plans, organ donors would be put on a transplant priority list and their families would be helped with funeral expenses.

The priority list proposal would see donors at the front of the queue for kidney, heart and other organ transplants, while contributions would be made to the funeral expenses of dead donors’ relatives.

Financial incentives, “presumed consent” systems, personal “thank you” letters and certificates and souvenirs such as T-shirts and mugs could also be considered. The financial incentives may range from payments to the regulated selling of organs, eggs or sperm and a fully-fledged free market or just modest expenses.

Today’s Guardian quotes Dame Marilyn Strathern, professor of social anthropology at Cambridge University, who is leading the consultation working party: “We could try to increase the number of donors by providing stronger incentives, such as cash, paying funeral costs or priority for an organ in the future, but would this be ethical?”

Ethical? Cash for corpses? Leave it out, Dame Marilyn. You are the future.