Hospice NZ ambassador Jo Seagar at the 10th anniversary of the Mary Potter Strawberry Festival. Photo / Julie Maltby
Meet the experts making our final days more palatable.
"Death is the most denied human condition."
Jo Seagar writes this in her new recipe book on a page that comes after the chocolate fudge brownie bits and before the smoked salmon stacks.
"We are all terminal, yet somehow we think it will cleverly bypass us. But sure as sure can be, we will be catering for a funeral at some time in our lives."
Have you selected your last supper?
Seagar - the cook that television made famous - says hers would be oysters.
"And I'm talking dozens!"
The medical reality? At the end, we may not be able to eat. Because before the death, comes the dying.
An unpalatable statistic: Up to 80 per cent of people near the end of their life lose their appetite. Nausea and taste abnormalities are common. Patients may experience dry mouths or their saliva may thicken. The smell of food may be unpleasant. Fatigue, poor vision, even too much background noise in a room, can all impact on a person's ability to eat. And for families - for whom food is love and living - that can be devastating.
Earlier this year, in an Auckland hotel conference room, hundreds of healthcare workers gathered for the 23rd Hospice NZ Palliative Care Conference. So many people, involved in this business of dying. They heard from experts in grief, resilience, spiritual care and patient safety. On the last day, they watched Jo Seagar cook pikelets. Teeny, tiny pikelets, served with kawakawa-infused tea.
"Orange juice," said Seagar, "Is a bit last year. But iced herbal tea is very smart. You heard it here first."
Did you know that food really pops on a blue plate? That if you add xanthum gum to cold coffee and aerate that drink with a simple fish tank pump, the bubbles become stable enough to apply to the mouth of a nil by mouth patient? That you can steep dried blood oranges, cloves and brandy to make a mist that tastes like Christmas pudding? That a smear of wasabi on a tiny asparagus roll, served on a tiny plate, might stimulate a waning appetite?
Organisers have called this part of the conference "feeding the soul". Seagar is joined on stage by palliative care expert Rod MacLeod, Australian chef Peter Morgan Jones and food stylist and cook, Jane Rangiwahia.
Last year, 32,689 New Zealanders died. The average life expectancy is now 83 years for women and 80 years for men (up, respectively, from 71 and 67 in 1950).
Two decades ago, Seagar's father died at home under the care of the South Auckland hospice. His children were health professionals - radiologists, nurses and doctors. Seagar herself had been a midwife. This was a family who understood the circle of life.
"Hospice allowed us to be our father's children. It allowed my mother to be his darling wife. That was quite a special time for us. I think my father had a really good death."
Afterwards, Seagar got in touch with Hospice NZ.
"I had just got very famous for simultaneously holding a wire whisk and a conversation. We had a lovely lunch, and I think they wondered - were we going to do a 'desserts to die for' cookbook, or something?"
Seager became a Hospice NZ ambassador and patron. Today, she talks up the organisation wherever and whenever she can. Her newest book (Better than a Bought One) is about do-it-yourself weddings and baby showers and office shouts. Home-grown celebrations. In Seagar's book, that includes funerals.
It's strange, she writes, "How we as a society can be so open about so many topics, yet when it comes to the end-of-life experience, elderly parents and adult children particularly often enter into a conspiracy of silence."
Food is one of life's great joys. But how do we deal with it in death? And, more crucially, on the way to death?
"There is no one size fits all," Seagar tells conference-goers. "My father said oysters and I'm immediately thinking dozens, but he actually wanted a quarter . . . I think he felt he invented barbecuing - we're talking smoke and charcoal, no gas bottles here - but he was really at the stage where he didn't want to eat. He loved the fact though, that outside, he could see all the family enjoying food."
In Māoridom, says Jane Rangiwahia, it's all about whakawhanaungatanga - the gathering of family and friends to provide spiritual and practical support - and manaakitanga (broadly translated as hospitality).
"Māori just love to look after each other and what better way to do that than by sharing kai."
She tells a story she has just been told about an elderly man who wanted kererū - the native wood pigeon - for his last meal. So a friend went to the supermarket and bought a number six chicken.
"They stuffed it with miro berries, roasted it and the old man dying was so happy he got his last kererū."
Another time: A man sits with a terminally ill patient feeding him the tiniest morsels of raw mussel, onion and vinegar. "He listened to his stories and he fed him . . . Māori are all about where they're from. Their iwi, where they whakapapa back to. Someone from the deep south, they might want titi, the muttonbird. For someone from the coast, it might be koura . . . it's different being an urban Māori. You might not have crayfish on hand, so you might have to cheat and peel a prawn."
One palliative care size does not fit all. Different cultures have different rituals and different attitudes to end of life care - in one historic 1990 study, for example, researchers surveyed nurses on their approaches to feeding patients with advanced incurable cancer. All of the North American nurses said they never force-feed such a patient - but all of the Chinese nurses said they would.
Rod MacLeod is a palliative care specialist for Harbour Hospice. Post conference, he tells Canvas: "One of the first things that we do is eat. We breathe and then we eat. And the rest of our life is spent sharing these social occasions. The preparation of food ... I think of it as a sort of gift of love, and the receipt of food is the receipt of love. We spend all our lives providing or receiving food and at the end, towards the end, it becomes problematic. Families will often say, 'Well, I've prepared all this food, his favourite food, and he doesn't want it.' It becomes a sociological problem we have to negotiate."
When people are dying, they eat less. They might prefer very small portions (those teeny, tiny pikelets). They might enjoy the ritual of a vase of flowers on a tray. They may no longer follow set mealtimes. The trick? Back on the conference stage, MacLeod quotes the most famous caregiver of all, Florence Nightingale.
"She famously said to her nurses, 'Put yourself imaginatively in the place of the patient.'"
MacLeod, co-author of the book Lobster for Josino: Fabulous food for our dying days, says families and friends may need to demonstrate their love in "new and imaginative ways - including different approaches to food and drink, or introducing craved for tastes and favourite flavours".
Sometimes, he says: "I tell patients is to try and think of something that would be really difficult for the family to find. Just whisper that you'd really fancy a star fruit, and send them off into Auckland looking for a star fruit."
He gets a big laugh from the room full of people who understand the need to make people feel useful in the face of uselessness.
"There is," MacLeod continues, "Absolutely no reason why you can't use somebody's favourite drink to swab their mouth out ... I've suggested people make gin and tonic ice cubes. I think you can use alcohol in whatever way you like.
"We have to find out what tastes remain. Some tastes might suddenly become nauseating. They might not want any food at all. And that's not the end of the world. Families will say, 'Oh no, if they don't eat, they'll die.' Hello. Actually, they're dying already. They are not going to die from starvation, and I think that's the big fear some families have."
Modern journalism dictates journalist insert themselves into stories. That we make a joke or stab you in the eye with our own insights. That we share. Sitting in that conference room? I felt overwhelming gratitude other people were thinking about the things I can't think about. That one day, we die. That one day, we won't have the capacity to eat garlicky paua or a really superb scotch egg. That all the chicken soup in the world won't save the person you love from leaving.
MacLeod says we have to get comfortable with death.
"Palliative care has suffered from the notion that it's all to do with dying. The message we are trying to get out, is that it's about living well - to try to get rid of this idea that it's all doom and gloom and sadness. We can do this well. We should do it well. And we deserve to do it well for the people we love the most."
My father's father had a heart attack on a beach. The only thing I remember about his funeral was the food. Specifically, two large rectangle slabs of cheesecake, one with raspberry topping and the other with passionfruit. I had never had cheesecake before. I was very excited. By the time I got to the table, it was all gone. I was 9 years old and I cried. It took a long time to understand I wasn't really pissed off about the cheesecake.
"The more we use the 'death' word, the more comfortable we will be," says MacLeod.
Australian-based Peter Morgan-Jones, formerly of the Sydney Opera House's Bennelong Restaurant, was inspired to create the recipes in Lobster for Josino when his friend and former second chef was dying.
At the hospital, he watched Josino reject the food that looked and smelled awful. Josino wanted lobster - but the hospital would not allow it.
"When I visited Josino again two days later he was in a coma," writes Morgan-Jones. "He never regained consciousness ... As Josino had said on that rainy Tuesday, even prisoners on death row have the choice of a favourite 'last meal'."
Morgan-Jones, who once cooked for the Royal Family, now works full-time for HammondCare, an Australian organisation specialising in aged and dementia care.
"I'm not feeding people with egos in restaurants like I was used to," he says.
He has learned that sometimes people are overwhelmed by the size of meals, that cutlery can quickly become too difficult to manage - and that if someone is craving bacon, small miracles can happen.
"We had one gentleman, and he had a restricted oesophagus. He loved baked beans, bacon and eggs. He had pretty much been having thick soups and that was all. I made him some scrambled eggs, and some crispy bacon which I put into a nice, clean coffee grinder and turned into a powder. He had these little bowls and he could sprinkle bacon dust on to his eggs. He got that breakfast sensation."
Molecular gastronomy might have earned a bad rep for its deconstructed desserts and faux caviar spheres but in Morgan-Jones' kitchen, it allows the terminally ill to live their last days more pleasurably. Icecreams that don't melt, an "air" made of Guinness, a porcini mushroom dust that gives an umami punch for patients on salt reduced diets - it's hospital food but not as previous generations knew it.
On the stage, that jug of thickened coffee is bubbling away.
"You just use the froth," says Morgan-Jones. "You can smell it, and put it on a person's tongue and it will pop and they won't actually swallow anything. It just gives you that lovely flavour in your mouth. A coffee moment."
Jo Seagar wants to try it. Morgan-Jones scoops a spoonful.
"I can honestly say it tastes like coffee," he tells her.
"Mmmmmm," says Seagar. "And, also, nothing . . ."
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