Nurses deal with the final days

Gwen Singer, a palliative care nurse for South Auckland's Totara Hospice for 15 years, is visiting Enesi Puni, who is dying of prostate cancer. It's a cheerful encounter. "You live until you die," says Singer, by way of explanation.

Some might consider hers a grim, unrewarding, emotionally draining profession. But that's the misconception: it's not about death, but life, about making the most of the time you have left. "I'm not gloomy," says Singer, who can't imagine doing any other job. "You want to make them feel good, so they don't mind the nurse coming: it is a real privilege to go into their house ... an honour to be invited in.

''I love it. Every time I think I could move on to something else, a special patient comes along and I think I want to be there until he goes, be there for him ... and then another patient comes along."

As a nursing student in Timaru, Michaela Davis – who performs the same role as Singer in West Auckland – did a palliative-care placement, and says: "I knewyes, this is what I want to do'. It's odd, isn't it? But it is a privilege to be involved, to make this horrible period of time better for people."

In Chinese, the word hospice roughly translates to mean "death house", says Julie Reid, volunteer co-ordinator for Auckland's Mercy hospice. "So it can be pretty hard to get past that," she adds. "Wouldn't you [be suspicious], if it was the death house?

"People think hospice is a building. It's not. It's a philosophy of care."

Actually, 65 per cent of hospice patients will die at home. The majority of visitors to Mercy are there for pain management or respite care, rather than to die. "It's about living, not dying: we take people whose symptoms need to be managed and get them well enough so they can continue to live," says Mercy's fundraising leader Sandy McGregor.

The concept of hospice has been around since the 11th century, the work often undertaken by nuns; the Sister of Mercy began formal hospice care in Auckland in the 1950s before forming Mercy in 1979. The national body, Hospice New Zealand, was formed in 1986. While hospice staff nationwide will make 155,000 community visits this year and treat around 14,000 patients, the hospice movement still feels deeply misunderstood.

At Mercy, for example, a weekly group session called Open Doors offers patients massage, pedicures, hairdressing, even violin lessons, pet therapy, and today, an accordionist playing in the corner. They've had Paul Potts perform before.

Polly Te Mete, here for the cheese scones before leaving for an oncology appointment, says it's an opportunity to talk to people on the same journey. The Open Doors team offers bucket list requests from trips to Queenstown to last-minute weddings and even a wedding without a groom for a man who wanted to dance with his daughter on her wedding day but knew he wouldn't live long enough. "The sky's the limit," says co-ordinator Viv James.

Many of Mercy's 133 staff began as volunteers, often after a family member had been cared for at the hospice. Former freezing worker Kingi Davis, the hospice's kaiatawhai, who works in Maori liaison, particularly around family disputes and issues of burial and cremation, took that route 11 years ago.

Then again, patient Kaye Pere's partner Alex admits he was once so suspicious of hospice he would wait outside in the car, refusing to go in.

"I think it is not understanding what hospice is truly all about and the extra services," he says. "Ask anyone, and they say `that's where you go when ... ' You find out later there is a lot more to it."

He talks about how Kaye's brother and sister were too proud to ask for help in a similar situation.

These barriers appear particularly strong in minority communities, and not just the Chinese: some Pacific Island communities, for example, don't want to be a burden; some Maori prefer to rely on family networks, however overstretched.

Tina Parata, the kaiawhina at hospice North Shore, who was just the third of her kind when appointed six years ago (now there are over 20 similar roles nationwide), is specifically tasked with increasing awareness of hospice with Maori.

"I want to take hospice into the Maori community: I call it being the friendly face of hospice," says Parata. "They have seen me around at different whanau events so they are not quite so afraid of me any more, and hopefully that translates to them being not so afraid of asking some questions of hospice and what it might be able to do for them."

Parata often sees chief caregivers who are single parents juggling children, work, and a seriously ill parent but scared to ask for help. "There is the fear that if you talk about death, you are encouraging that death – if you don't talk about it or think about it, it won't happen."

A day on the road with the hospice nurses is educative. Death isn't mentioned. First we meet 41-year-old Shona Wilburn, who has an inoperable brain tumour; she has undergone chemotherapy and radiotherapy and is now on steroids.

Her 11-year-old daughter Mackenzie, she says, cannot remember a time when her mother wasn't ill. She sits with Shona, discusses her current medical regimen, a feeling of breathlessness and whether it needs action, and performs a grip test to check a slight weakening of her left side.

"Hospice is there for all of us," she says; the children have art classes and holiday programmes, were given One Direction tickets and met the boy band, while there's a carer's group for husband Sam. "When something like this happens," she says, "priorities change so much. Family becomes so important."

She tires easily, and has to rest during the day, while the steroids keep her awake at night and insatiably hungry, but is reasonably well at present, so Davis, her nurse, has no follow-up work this time; often she will suggest alternative drugs, liaise with GPs, schedule other appointments, even organise Winz visits to ensure patients are receiving all their entitlements.

She will also discuss their final plans – do they want to depart at home, in hospice, surrounded by friends and family or just with their closest relatives?

"I'm always honest with patients, I will tell them things and I will say `time is getting shorter'," Davis says. "People are still themselves even at the end of their lives. If they've always been super-independent, they won't change even when they are unconscious and actively dying – they will still choose to die when they want to. People will wait for people – I've seen them wait for people flying back from London. Sometimes when there's been a vigil for days and days, they go the moment the last person leaves."

Her next patient, Kaye Pere, is unique: there's every chance she could be permanently discharged from hospice care if she secures a lung transplant, a "second breath of life". Without, she will die. For two years, she was bedridden.

Now she has her goal – to walk 250 metres unaided – scrawled on her fridge, with daily updates of her progress. She is, says Davis, the most determined patient she's met.

She doesn't think too much about the transplant. "I do want to live, but I try not to think about it, otherwise I can't live, can't get on with life; I would be forever holding my cellphone."

Pere has made use of counselling, physio and dietary services – and in particular, art classes. "I used to be a bitch," she laughs, "I would get cantankerous, because I couldn't do the things I used to be able to do. I started going to art class, and it was such a release. I wrote a lot of poetry. I see the transition from someone who was like a prisoner in her own home to someone who is now free.

"You realise it is the small things in life that make it, and you appreciate them now before it is too late." It is, says her partner, Alex, "a happy house: we try to laugh as much as possible".

In a quiet Otahuhu back street, Enesi Puni, a white-bearded Samoan of 63 who served as a New Zealand consulate official in Apia, is contemplative. He has had diabetes since 1990, lost his sight seven years later, causing him to emigrate here; then in 2008 he was diagnosed with prostate cancer, which by 2011 had spread to his shoulders, pelvis and hip.

Calmly, he tells Singer he's sleeping badly, and only managing to walk his guide dog, Simba, to the garden gate once a day. He thinks he's most probably bored, so Singer suggests a weekly day stay visit to hospice, to change his routine and give his wife, Viola, a break. He likes the idea.

Like many, Puni hadn't heard of hospice until he was admitted to Auckland Hospital in January; now he finds them invaluable.

"The life we have is never going to be forever, and I lived 50 years before going blind, and that was good enough for me, I was quite happy," he ponders. "I know that things are not going to get better, but the medical assistance and hospice's assistance enable me to withstand the pain, and to know in my last days I can feel content." `I HAVE DAYS when it sucks and I could easily quit, think I could be a Plunket nurse, give me a smiling baby," admits Davis.

"When we have people with intractable pain, no matter what we try, and we're still not getting them comfortable, that can drive you insane because you want to do your best for your patients and sometimes ... you can't." She has stopped attending funerals, although she is often there for a patient's last moments. "You learn to switch it off. You have to have boundaries. I know if I start dreaming about patients at night it is time to have a break. It's a job, you try and treat it like any other job."

I ask Singer, who says golf is her stress release, what the job has taught her about life. "Make each day a good day," she says. "A bad day at golf is always worth more than a day sick from cancer."

Hospice Awareness Week is May 14 to May 20. If you'd like to help support hospice, become involved or learn more, visit the Hospice website.

'I WOULD DO ANYTHING FOR THESE GUYS NOW'

"She was in the bathroom, saying, 'What are you not telling me? Why am I not dying? I want to die."'

Ross Browne pauses, a long pause. "Unless you've been there ... now I have been there, I want to give back, I want to help someone else, because it was hard, very hard. What do you say when someone says that to you?"

Four days after Ross's wife Katrina, 37, gave birth to their daughter Jayme, she began to suffer migraines and sight loss and was diagnosed with an aggressive melanoma. It was in her lungs, her abdomen, and she had seven brain lesions. Twelve weeks later, Katrina Browne passed away, leaving Ross alone with Jayme, two-year-old Emily, and shared care of their two older boys from previous relationships.

That happened just two months ago, but Ross Browne is happy to talk, because if anything helped him through those incredibly difficult 12 weeks, it was hospice. "I would do anything for these guys now," he says. "It just blew us away really, and my brother who was supporting us at the time said the same thing, he thought it was unbelievable. And neither of us had any idea it existed before that – you hear about it ... but as the ladies from hospice say, you think it's for 80-year-olds."

As his wife's health began to decline and the brain lesions affected her personality, Browne had to juggle her care, his daughters, and trying to maintain his music teaching business. He found his dealings with doctors inconsistent and frustrating, and other charities he turned to offered him nothing. In desperation, he pleaded with his doctor, who suggested Hibiscus Hospice.

Ross and Katrina visited with low expectations, assuming they would see impersonal, shared wards. Instead, they found a small, "calm, peaceful" six-bed unit with golf course views and, two days later, Katrina moved in. They expected it would be a short visit, but she would never leave.

"I kept saying 'imagine the other side of the story, in Auckland hospital, four to a room, can't get a doctor, got to drive in every day, find parking'," Ross says. "They took a lot of the burden away. I didn't know what I was doing: I wasn't a doctor or a nurse, just a guy with a sick wife and two young girls."

Ross visited the hospice again two days after his wife passed away. He says it was an "amazing experience" to go back and have time to think. He's been back three times now. He'd been single for eight years, and never, ever hit on women, but when he saw Katrina at a school sports day and then a fireworks display, he plucked up the courage to approach her.

At their beachside engagement party, he saw whales pass by for the first time in 11 years living in Orewa. Five-month Jayme Browne has the most amazing, ready smile I've seen on a baby. Ross Browne says people tell him it reminds them of his wife.

"She would smile, and it would melt my heart," he says. "Even after four years, that smile did it for me. I miss her terribly. It took me a long time to find someone I really loved. I sit there and give Jayme a cuddle and think she will never know her mum, and that hurts. They [his kids] keep you going, but it is a double-edged sword, they also bring out most of the pain, because it's so unfair. She was 37. So young."

Only half an hour before Katrina told Ross she was ready to die, the hospice chaplain and counsellor had sat with him and discussed what to say to someone in that position – that it is OK to go, and to assure them their children will be cared for. It helped him through the most difficult conversation of his life. Now, he's ready to do that for others. This past week, he met a friend who told him she had advanced-stage cancer. "She messaged me later and said 'I'm so sorry, you don't need that'; I said, 'I am the person you should be talking to, I've been there and I will answer any questions'."

© Fairfax NZ News
Photos by Lawrence Smith & John Selkirk, Fairfax NZ

 

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