Dying is a natural part of life, like updating your Wof or seeing your hairdresser, but without the word-of-mouth recs that help guarantee a good service. What if we changed that?
Dying Reviews received by The Spinoff have had the names of organisations redacted while Hospice NZ collects further data.
Even when you or a loved one is dying, regular life and all the admin it entails (paying the bills, going to work, doing the laundry) persists. And somehow, losing a life means more responsibility, and this admin – to some, “deathmin” – piles up with hospital visits, trips to the bank, calls with insurers and endless online forms yet not enough energy to keep up with it all.
We all experience it firsthand and secondhand, but death has no consumer guarantee. Google and other review sites make it easy for us to know whether a service such as a hairdresser or lawn mower will suit our needs, but when it comes to finding the right professional aid in dying, it’s harder to predict the obstacles. You could go to a trusted care home and receive the best service you hoped for, but you or a loved one might still end up in meetings with significantly less equipped or empathetic transport agency or bank workers, for instance, where the death of a client is only a small slice of the work they deal with.
In what it believes to be a world-first, Hospice NZ launched Dying Reviews in May, a website which is exactly what it says on the tin: a Yelp for death. Reviewers can submit entries for themselves or on behalf of a loved one who is dying or has already passed, on any service experienced in the stages of dying. “When you have a terminal diagnosis and you’re tired, you don’t have the energy or the time to do all these complicated forms, and going into places [away from home, for your health] makes it difficult,” Wayne Naylor, CEO of Hospice NZ, says. “So this is a way of giving a voice to people who are dying – and the people who look after them, because they also experience the challenges – and then using that as a way to say to our society, ‘we can do this better’.”
New Zealand currently has no way of measuring how effective the care we provide in the final stages of someone’s life is, but in 2015, our nation ranked third in the Lien Foundation’s Quality of Death and Dying Index, before dropping to 12th place in an updated 2021 report. The latest index ranked countries based on 20 indicators across five categories, including palliative and healthcare environment, human resources, affordability of care, quality of care and community engagement. Dying reviews collected so far range from critiques of airlines and banks to care homes and insurers, with some positive, though the majority of reviews shared with The Spinoff show the quality of death in Aotearoa leaves plenty of room for improvement.
“My wife had been in contact with [redacted] over a year ago in preparation for her passing. She wanted to donate her corneas as she knew they wouldn’t be affected by her cancer. They said to contact her closer to the time of passing. She did so and they said there is now a series of questions that need to be completed but by then she was too exhausted to do so, therefore the donation could not proceed.”
“My dad was unable to concentrate and too weak to hold the phone or iPad in his last few months. As everything is done online, it’s not helpful to someone who is dying!”
“Even after approvals from a lawyer, I had to get my dying husband to come with me to a Justice of the Peace to get his signature witnessed. It was the last time he left the house.”
“[Redacted] are dreadful to deal with – no empathy or understanding.”
“Airlines need to advise points owners how and when the timeline is to claim a loved one’s points. After my husband died the airline said bad luck lady. That needs to be done before the person passes away!”
“I have bile duct cancer and have been advised to keep away from red meat and animal fats. The retirement village considers this is a personal preference.”
“Difficult to resolve banking issues without prolonged time on phones with a partner with dementia. Processes for seeking assistance need to be simplified as the people needing support are under stress and often overwhelmed, even a simple task can feel like a mountain to climb.”
Other reviews submitted share positive experiences, such as one five-star review from a widow who wrote of their late husband’s workplace, highlighting their “kindness and support” as his death neared: “They checked in with my husband regularly and colleagues came to visit him at home. He was given the opportunity to contribute and work from home when he felt able. There was no pressure on him and it was his choice when he felt he should stop work.”
“Each person at [redacted] that my mum and I spoke with was consistently kind and effective in getting Mum’s finances in order and they were very respectful of that goal.”
“Claiming the life cover in advance was simple. I believe this helped put my husband’s mind at ease knowing we would be okay.”
Some reviews sit in the middle, such as one which praised a dementia care home with four stars, but felt there was more specific support needed: “A lack of kaupapa Māori respite care was hard. Māori space with Māori kai, carers and residents would have been beautiful for our mother.”
“I really appreciated that my father had a [redacted] card, which enabled him to receive half-price taxi fares. Having access to this was essential when it was difficult for him to move in and out of a car. However, the fares are still astronomically expensive.”
With the data collected from the reviews, Naylor says Hospice NZ will release a report into our nation’s quality of dying, offering recommendations to organisations and government and creating a foundation for other services which do not directly deal with death (such as banks) to consider introducing compassionate training to their workforce.
He hopes New Zealanders will continue reviewing their dying experiences long after the report is released, to provide future annual reports akin to the Salvation Army’s State of the Nation, which would reveal the progressions and regressions of Aotearoa’s quality of dying year on year, and how we can improve. “This shining a light on the experience of people who are dying and hearing from them directly is a way of helping to show the government that a really important part of our society are missing out [on meaningful care] and something needs to be done about it,” Naylor says. “It’s a public health issue, and it’s a national health issue as well.”
Death can be a difficult subject to discuss, particularly in a reserved, non-confrontational culture like New Zealand’s. “The challenge with death and dying being a taboo subject is that people don’t really want to talk about it, because when you talk about it, it brings your own mortality to mind,” Naylor says. But if we don’t talk about dying, nothing changes.
Naylor previously served as the director of nursing at Hospice Waikato for nine years. He remembers visiting the home of a patient, who asked not to have the Hospice-branded car parked in the driveway, for fear of the neighbours finding out that someone in the house was dying. It’s this lack of open communication around death with our community that also negatively impacts the quality of dying. “That’s not how it should be. It should be that the neighbours know that someone is dying and help,” Naylor says. “Communities [should] step up and help people, rather than just relying on government agencies and government systems or health professionals.”
To lessen the weight of deathmin, Naylor recommends creating an advanced care plan detailing the wants and needs for the final stages of your life. “If you have a chronic or terminal illness, it’s a good way to get close family and maybe friends to talk about, ‘when I’m dying, these are the things I want: the people I want around me, the type of music I’m playing, where I want to be, what sort of funeral I want’. You can do other things like advanced directives that are really clear and legally binding decisions on what you do and don’t want so that you’re not doing that last minute, and so that people know what you want.”
A New Zealand with a high quality of dying would look something like this, says Naylor: more action from local government focused on improving community-level health care, a revamp of the New Zealand Palliative Care strategy (which hasn’t been updated since it was introduced in 2001), and a compassionate communities approach with community-based support for the dying. As New Zealanders are living longer, frailty and the presence of multiple chronic health conditions in old age is increasingly prevalent. Death is a promise we all face, and its landscape is changing, yet many attitudes around dying remain the same. Talking and reading about dying is just one way to make sure we receive the care we deserve.