We need to talk about death

Geraldine Johns

Advances in medical technology and the rise in secularity are increasing our anxieties about dying. But a new approach to end-of-life care, driven by medical practitioners and their patients, is being successfully rolled out across New Zealand, enabling people to discuss this taboo subject and plan their future care.

A new initiative being introduced nation­wide is giving New Zealanders the oppor­tunity to discuss their biggest fears – death and dying. The scheme, known as Advance Care Planning (ACP), offers people the opportunity to list preferences for their end-of-life care while they are still able to articulate their wishes. It can cover every­thing from the straightforward – delineat­ing a person’s faith or belief system – to the more complex – for example, whether or when they would like life-prolonging medical interventions and what constitutes an unacceptable quality of life.

ACP is only two years old in New Zea­land, but is already being hailed a success. “Its implementation is quite advanced and quite wide in its geographical scope. It’s been able to be picked up to this degree because of the size of the population (4.4 million) and because of New Zealand’s integrated health networks,” explains Pro­fessor Rod MacLeod, director of palliative care at Auckland’s North Shore Hospice.

People need to talk about death, says MacLeod. Last year, he and his colleagues conducted a survey into public perceptions of death and dying and of hospice and pal­liative care. The results: 70 percent of re­spondents said they get anxious or uncom­fortable when they think about a loved one dying, and 35 percent said they get anxious or uncomfortable when they think about their own death.

MacLeod has some personal observations on why ACP is being widely embraced. “Talking about death used to be the clergy’s job, but now we’ve medicalised death and we’re medicalising the approach to the end of life,” he says. “That’s partly because we’re increasingly secular – and also be­cause we expect medicine to have answers to questions we do not have the answers to.”

Leigh Manson is facilitator for the Nation­al Advance Care Planning Cooperative. She believes one of the reasons the initiative is working so well is because it’s being driven by clinicians and the general population, not the government. New Zealand has been able to benchmark best practice from other countries, which, she adds, “highlighted the importance of training the health care work­force, increasing public awareness around end-of-life planning – and lifting the taboo”.

Already there’s a well-defined core of groups working on ACP. A pilot training pro­gramme that teaches health care professionals how to introduce and facilitate conversations about the end of life with patients is currently under way in Auckland. Participants come from around the country and it is hoped that 170 people will be trained by the end of May. Once fully implemented, ACP will be offered at GP clinics and hospitals throughout New Zealand, and regarded as a standardised part of health care management.

Manson explains that ACP involves the patient and their family, as well as their health care professional, and is based on a person’s value systems and beliefs, their understanding of their current and likely future health, and the treatment options available. Even before formal plans are re­corded, there should be a process of discus­sion and shared decision-making, she says.

Manson and her colleague, Dr Barry Snow, head of adult medicine at Auckland Hospital, have been key players in the introduction of ACP. Snow says it’s partly driven by ethical imperatives, but also by a sense that “we’ve got so many treatment possibilities that you can overuse them when the patient is dying”.

Cost has a lot to do with it. A report in the New Zealand Medical Journal noted that people are likely to spend at least some of their last year of life in hospital. Deci­sions about the appropriate use of high-cost health services towards the end of life can be extremely challenging, the report’s au­thors say. “These decisions are resource-allocation decisions as well as clinical decisions, and should be based on clinical factors, cost utilities and patient, family and society’s expectations.”

Another factor that’s aided the country’s wide acceptance of ACP is the influence of the Maori and Pacific Island population. Talking about death while still being able to articulate one’s needs is part of their culture of developing relationships. To illustrate that approach in a rural context, there are the ef­forts of the tribally based Maori health care organisation Te Korowai Hauora o Hau­raki (The Cloak of Wellness for Hauraki) – a health care provider serving the Thames- Coromandel-Hauraki region, which lies on the North Island. Chief executive Hugh Kin­inmonth explains the organisation is midway through a three-year pilot scheme aimed at providing end-of-life care to Maori in their homes surrounded by their whanau (extend­ed family). “The goal is for every patient to be free of pain and discomfort; to not die in isolation and ideally to be at home,” he says.

To cover the wide area that Te Korowai encompasses, there is a service team com­prising two registered nurses with pallia­tive care experience, a social worker and a cultural advisor. In addition, a team of 130 home-based support workers is on hand, operating in concert with GPs, district health board palliative care teams, occupa­tional therapists and district nurses.

Te Korowai‘s efforts may be as simple as connecting water to the home of a terminally ill patient so he or she can can die at home with family, as they wished, rather than in hos­pital (for which the bed cost – at a minimum NZD700 a day – would be much higher).

“To date, we have only had four of our 32 patients die in hospital,” says Kinin­month – a New Zealand-born Pakeha (Eu­ropean New Zealander). Although the pilot is aimed specifically at Maori, there is a lot the non-indigenous population can learn from it, he believes. “As a Pakeha, I’d like to die like that.”

About the author:

Geraldine Johns is an Auckland-based freelance journalist and former staff writer for the New Zealand Listener


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