Hospices: places of refuge and care

Hospice. The word itself seems to create fear. "He's gone into the hospice. Well, that's it for him."

It's a fear that builds on apprehension. Death is best unacknowledged. Let's try to ignore it.

Certainly, when my partner Robyn Johnson three years ago was diagnosed with terminal cancer, we were ignorant of the reality of how hospices help those with a life-shortening disease.

How important our closest hospice, just 15 minutes' walk away on College Hill, would be to us over the months to come was not apparent as Robyn began a gruelling chemotherapy regime at Auckland Hospital's oncology department.

In those first stressed days it was not even really clear that among the people visiting regularly were thoughtful, practical and understanding hospice outriders, community nurses from Mercy Hospice Auckland.

We'd both heard the words "palliative care" when Robyn was discharged from Auckland Hospital after exploratory surgery showed her tumour was too invasive of vital organs to be removed without killing her on the operating table.

"But remember," said the surgeon, "the palliative care people have a lot of tricks in their toolbox."

We were to find that modern drugs, and increasing knowledge of how to use them, would significantly reduce Robyn's pain and discomfort over the months to come.

Going to the hospice the first time was much more traumatic in prospect than reality. Robyn was particularly reluctant, but I suggested it couldn't hurt to find out.

The handsome building, set among tall trees and colourful gardens, had opened as a hospice only in 2007. The former convent for St Mary's sisters had been extensively remodelled to meet its new specialised needs.

It was a revelation: bright, cheerful, tastefully decorated and with modern art hanging on the walls; on the ground floor support staff offices, public rooms and a large courtyard; upstairs a nurses' station central to broad corridors in an open U-shape, the corridors flanked by 13 light and airy inpatient rooms, each with its own roomy en suite bathroom, and with a kitchen at each end.

Much more important, though, were the people who looked after Robyn, and also did their best to make sure that, as carer, I had the support to ensure I didn't let that job overwhelm me.

The real meaning of hospice, as a shelter, a refuge, came through constantly during those weeks.

Nurses and doctors were unwavering in their warm, concerned and often humorous expression of the hospice movement's aim - to look after the whole person, physically, emotionally and spiritually, to enable each patient to truly live every moment.

I guess I'm a convert. These people are highly trained in the specialised art of palliative care, which really means making the daily life of patients as comfortable as possible.

But what makes them take on such a challenging branch of medicine, in which there's such intense involvement with dying patients?

I asked some of Robyn's carers: senior doctor Pam Jennings, 25-year-old Kate Yeoman and community nurse Jill Bennett. In each case, the short answer was that in spite of the pressures they find deep rewards in their role.

Pam had been a GP, Jill a roving nurse in countries such as Afghanistan and Zimbabwe. Kate, possibly the youngest nurse on staff, put it best : "It seemed like nursing as I'd always imagined it to be." Mary Schumacher, head of Hospice New Zealand, and Jan Nichols, CEO of Mercy Hospice Auckland, are passionate advocates for the work hospices do with the help of thousands of equally passionate volunteers.

The needs, they say, will continue to grow. There is an aging population and pressures on health funding will intensify. Instead of spending huge amounts on advanced equipment to try to keep the terminally ill alive for another month or two, the low-tech, humane hospice model makes increasing sense.

Successive governments have acknowledged the logic in funding support. But while hospice services remain free to users, there's still a 30 per cent shortfall.

Hospice shops and volunteer collections help bring about community involvement, which feeds into better public education.

It's not just cancer, as more patients with other diseases are helped and a more ethnically diverse population has its own demands in education. Hospice: It's not a word to be frightened of.

COST OF GIVING

• While hospices are free of charge, current government funding covers only 70 per cent of the $73 million that hospice services cost nationally to deliver. The 34 individual hospice services make their own appeals to help cover the $20 million shortfall.
• Last year, over 13,300 people were helped. Over 110,000 home visits were made with almost 4500 inpatient admissions.
• A huge part of the success of hospices arises from the dedication and community involvement of more than 7000 volunteers. In 2009 they gave more than 480,000 hours of their time.

Published in the New Zealand Herald 15 May 2010