LIVE BY DESIGN | Do we make our frail and elderly ‘die twice’?

It’s remarkable what confidences people choose to talk about to their hairdressers. I wonder what conversations you’ve overheard. It’s hardly a private and confidential setting. There is the sporadic sound of running water as assistants wash hair and the whirr of the hairdryer as the stylist does a blow dry.

For conversations to happen, the voices of stylists and customers are quite loud. You get to hear stuff whether you want to listen or not: someone’s fertility challenges, another’s divorce settlement. On one occasion, I remember, the woman next to me in her late sixties told the stylist the latest story about Marcia, her mother-in-law and her recent heart attack.

Marcia, aged 99, had dementia and no longer recognised her family members. Years earlier, Marcia had the foresight to complete her last wishes, including a Do Not Resuscitate order. She hoped this would save both her and her loved ones unnecessary pain and suffering in the event of any life-threatening crisis.

It didn’t.

When Marcia’s heart attack happened, panic prevailed. Everyone forgot the DNR order. The caregivers called the family and the ambulance. Code 10! Code 10! That’s the health workers’ call-out for all hands on deck, every resource possible to be made available to save a life.

Medical technology and health worker skills triumphed. Marcia was successfully resuscitated, and two weeks later (with hospital bills of a few hundred thousand rands settled by medical aid), she was well enough to return home, albeit considerably frailer and needing 24/7 nursing care.

Now she must wait for a second opportunity to die.

I remembered this story because I recently listened to a friend discuss a similar experience of death being faced twice over. The friend’s 95-year-old mother had lived in a retirement home for several years.

Her faculties were intact, she enjoyed her daily life rhythms, tea with friends and card games, and treats purchased online by her children, who emigrated years ago. Late last month, she became seriously ill and collapsed.

The health workers at the retirement village rushed her to the hospital. She arrived on the cusp of death, but in-time medical technology secured her initial resuscitation. Then she faltered. The next nine days of medical interventions were an emotional roller coaster for her adult children, up, down, up, down, faltering, down, down, slowly down, hours of bedside sitting in limbo, oh so slowly faltering – until that last breath. Nature took its course slowly.

Apparently, there had never been a discussion about end-of-life preferences or the pros and cons of having a Do Not Resuscitate order in place. How I wish this were part of Standing Operating Procedures for such institutions. It is so difficult for families to have these conversations; they need all the support and help they can get. They need help from the healthcare professionals they encounter. It is hard to have such discussions during a crisis – it’s better they happen way ahead of any crisis occurring.

That is what they do in La Crosse, Wisconsin. Over the last four decades, ethics professionals have worked and trained healthcare professionals to have such discussions. Consider this fact: in La Crosse, Wisconsin, of those members belonging to the Gundersen Health Care System, 98% of adults, i.e. everyone over the age of 18, has completed an Advance Directive that includes their DNR preference. Comparative statistics show significantly less money spent on end-of-life interventions, and yet their longevity is a year longer – could it be that early DNR discussion reduces anxiety?

A professional mindset shift secured this achievement.

Medical practitioners need to be both healers of life and easers of death. Unfortunately, the second half of this professional responsibility, to assist end-of-life transition, has been relegated in our society. Instead, what gets centre stage is the medical technology intervention that prolongs life and often prolongs suffering. Research data is available on the expense and limited success of medical interventions that take place in the last year of life.

Kudos to my mom, who taught me about the two sides of her work. She was a nurse who commanded enormous respect for her technical proficiency. Her colleagues told me how closely my mother observed patients under her care, noticed how they responded to different drugs or doses, and how she gave detailed feedback to the doctors. My mother’s reverence, however, for what medical intervention could achieve included respecting limits. She shared stories with me of occasions when her role was the compassionate caregiver, the gentle easer of death.

My mother also gave me and my brothers a huge gift. She had one instruction to be followed above all others, “Do not hospitalise me.” It is a marvellous instruction to receive – because it’s so unequivocal. You don’t ever need to be anxious about engaging with health professionals in the hospital who may well recommend invasive interventions and your worry about the weak position that you, as a layperson, are likely to find yourself in if you try to suggest otherwise.

My mother had already demonstrated her preference earlier in her eighties. One harsh Johannesburg winter, she was coughing badly. Her amazing GP paid a house call, diagnosed double pneumonia and offered her hospitalisation. “Hospital, no thank you,” she said. “They are noisy places. You’re continuously disturbed. It’s hard to rest, and no home comforts. If I am to die, I’d rather be here in my own bed. Please, doctor, give me the strongest antibiotics you can prescribe – and I’ll take my chances.”

She survived and lived another few years. She died a few weeks short of her ninetieth birthday. Her last year was challenging. Her well-being deteriorated, and there were fewer activities that gave her pleasure. She time-travelled as dementia took hold.

She faded slowly. Her gift to me as death approached? I never faced any decision-making dilemma. Thank you, Mom.

It’s a gift I want to offer to my loved ones. And I so wish that caregivers in retirement homes and nurses in hospitals would be trained to facilitate these conversations. In last week’s column, Mapi wrote about initiating end-of-life care conversations with her Aunt Nancy. Mapi, a question for you, “Does Aunt Nancy have a DNR in place?”

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