September 2022 – Page 5 – The Amateur's Guide To Death & Dying

Experience provides fortitude, equanimity and perspective. Not everyone wants to live forever

‘The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient.’

“We are happy and sad to see you again. You looked after Dad years ago.”

I kick myself for not registering the connection, although I only met him during a brief and disastrous stint in hospital.

The complications of cancer treatment had kept mounting until his wife was forced to admit her 85-year-old husband to hospital despite his protestations. His memory had faded and his moods turned volatile. He died in hospital, captious and discontent. I now recall the exhaustion of the family and their guilt-ridden attempts to reconcile with his end.

Some of my work involves seeing cancer patients in their 80s and 90s. The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient; while it can be said that all cancer care ought to share this mission, elderly patients are a particularly vulnerable group, with little margin for misadventure. Since two in five people will receive a cancer diagnosis by the age of 85, there have been several occasions when I have treated both husband and wife.

Here are three things that I have learnt from looking after my most elderly patients.

1. Their goals differ

While younger patients compare their treatment to what someone else is having or bring in an overseas recommendation, and (understandably) want to leave no stone unturned, even at the cost of significant toxicity, my oldest patients often have a different goal – to preserve quality of life and maintain independence, even at the cost of survival.

This is especially true when a person is both patient and caregiver.

Co-dependant elders can get by happily in their own home but the moment one stumbles, both are in jeopardy. I frequently meet people who base decisions on combined harm rather than individual good. Interestingly, the people who sometimes struggle to comprehend this are their doctors who are taught to focus on cure.

Many patients who have accompanied a spouse through cancer and end-of-life care have used the opportunity to reflect on their own choices.

I met an octogenarian who declined chemotherapy after caring for his wife who endured recurrent hospitalisation before dying. The same day an elderly woman insisted she would rather “die on the table” than live a life of regrets, as her husband did after he rejected surgery.

One of my most memorable patients was a 90-year-old man who refused an operation because the resulting diarrhoea would involve him negotiating a steep staircase to use the bathroom more frequently. Given the choice of moving out of his beloved home and living longer, he didn’t think twice. I have seldom seen a happier man exit the hospital without a cure.

I also meet overwhelmed patients who relinquish decisions to professionals but, when given the chance (more on this later), most patients will explicitly state what matters to them and make concordant decisions. A long life, necessarily including experiences of sadness and mortality but also inspiration and hope, has given them fortitude, equanimity and perspective. Not everyone wants to live forever, especially if the life is messy.

2. It’s hard on the children

Elderly patients have middle-aged children in the prime of their careers or out of the workforce for important reasons. Apart from tackling a mortgage, navigating workplace tensions and looking after themselves, they are juggling dependent children and vulnerable parents. They are carers, cooks, interpreters and drivers. In a multicultural community the “blessings and curses of filial piety” are on full display, and I worry that I am rarely useful.

Often, there is sibling conflict, usually because one sibling is doing “all the work”. Then there are the expectations of the carer that are hard to meet.

Can I see their parent on their day off? No, the system is inflexible. Can I organise transport? No, there is no funding. Can I avoid issuing last-minute appointments? No, it’s out of my control. Can I expedite aged care services? No, they must join the queue.

I wish the system understood the toll that illness exacts on the whole family.

One of the hardest things is to witness children seeing one parent succumb to cancer, only to repeat the experience. The despair of anticipatory loss is palpable but, if there is one glimmer of hope, it is the benefit of hindsight.

Families who insisted on intensive care at the end of life acknowledge its futility, those who doubted palliative care recall its worth. There is irony in the hope that the next time will be “better”.

3. We must do better

When illness is regarded as an anomaly, the emphasis is on fixing the problem, averting loss and restoring normality.

Every patient deserves optimal care but, when the conversation begins and ends with response rates and survival curves, it is a missed opportunity to respect the whole person, honour their wisdom, longevity and contribution to society and let them contemplate a twilight that contains dignity and comfort.

The power imbalance between doctors and elderly patients is especially pronounced.

I find it confronting to hear these patients lament that they are undertaking onerous surgery or toxic chemotherapy because they don’t have a choice. Some are confounded to learn that they always have a choice, even if doctor and patient agree to disagree. For many people of their generation, advocating for their right to be heard is unthinkable. For those who come from culturally and linguistically diverse backgrounds, this feels impossible.

No doctor who recommends an intervention in good faith wants to hear that a patient feels coerced, so we must choose language that opens the door to shared decision-making and correct the dismal lack of research on the needs of elderly patients. It is an indictment of medicine if the patient who really wants to say no ends up saying yes.

My elderly patient decides against treatment but requests periodic consultation to allow her to change her mind. All things considered, she says her work on Earth is done and she greatly misses her husband. At this, the daughter sheds a tear, but I can already see that this deliberate decision-making is better than what went before.

We won’t cure the patient but we will have honoured the person. A victory for the patient is a victory for medicine.

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Study finds most people over 95 are simply grateful for every day

People well into their 90s are often willing to talk about death, but they’re rarely asked about it, a new British study finds.

“Despite the dramatic rise in the number of people living into very old age, there is far too little discussion about what the ‘oldest old’ feel about the end of their lives,” said study leader Jane Fleming. “We know very little, too, about the difficult decisions concerning their end-of-life care.”

Fleming is with the University of Cambridge’s public health and primary care department.

The researchers interviewed several dozen people over 95 years old — or their relatives or caregivers if they were too frail — about their attitudes on death and end-of-life care.

According to the study, published April 5 in PLOS ONE, most had outlived their peers. Many felt they were living on “borrowed time.” They also felt grateful for each passing day, and didn’t worry too much about the future.

“It is only day-from-day when you get to 97,” said one participant.

The researchers noted that most of the older people interviewed felt prepared to die. “I’m ready to go,” said one woman. “I just say I’m the lady-in-waiting, waiting to go.”

In some cases, the participants felt as if they had become a burden on others or were anxious to finally reach the end of their long lives.

Many were more concerned about how they died than when. They hoped they would “slip away quietly” in their sleep and that their death would be painless. “I’d be quite happy if I went suddenly like that,” said one.

Few participants said they would want to be hospitalized if they became sick.

When asked if they would prefer lifesaving medical care or treatment to help them remain comfortable, most opted for comfort. Most were also not afraid of dying. For some, witnessing the peaceful death of others helped them manage their fears.

One woman recalled her parents’ deaths, saying, “They were alive, then they were dead, but it all went off as usual. Nothing really dramatic or anything. Why should it be any different for me?”

Funeral planning among the very old is more common than open discussions about death, the researchers found. Some had even made arrangements for themselves in advance.

“Death is clearly a part of life for people who have lived to such an old age, so the older people we interviewed were usually willing to discuss dying, a topic often avoided,” Fleming said in a university news release. To best support men and women dying at increasingly older ages, she said, “we need to understand their priorities as they near the end of life.”

Most participants had had end-of-life discussions with their doctor. But, rarely did these conversations take place among family members, said Fleming and her co-author Morag Farquhar, a senior research associate in the public health and primary care department at Cambridge.

“Having these conversations before it is too late can help ensure that an individual’s wishes, rather than going unspoken, can be heard,” Farquhar said in the news release.