Mercy Hospice is not a place people wait to die

By DITA DE BONI

From Gwen Gray's window, a clear day provides a vista of Auckland Harbour, the genteel, moneyed slopes of Mt Eden and a bustling city centre.

The harbour view has a special meaning for Gwen. A terminally ill patient at Newmarket's St Joseph's Mercy Hospice, the 85-year-old wants her ashes to be combined with her late husband's and scattered on the water.

"We were boating people. It's a bit poetic, but I believe the sea goes round the Earth eternally, forever, and it would be lovely for us to be a part of that," she says.

Her words are a raspy croak, the legacy of inoperable cancer of the oesophagus, central chest and breast. Gwen reckons she sounds like Minnie Mouse.

One might think of hospice patients as sad or depressed, waiting to die in stuffy hospital rooms as numb family members shuffle in and out in shifts. Both Gwen and St Joseph's defy this maudlin image. St Joseph's - part of the picturesque Mercy Hospital complex - is modern, comfortable and decorated with fresh flowers. While frail, Gwen is sprightly, easily rattling off a list of complicated medical procedures she has endured as part of her illness.

"I had completely the wrong idea of hospices - I thought they were the last places anyone would die peacefully at," she says. "But not at all. This place is so peaceful. The staff are loving and caring. No one is impatient, they put fresh flowers in your room and everyone calls you by your Christian name. I cannot say enough good things about them."

Gwen was admitted 11 days ago when she had a painful fall at her son's house. She will return there shortly. Her prognosis is unclear - she will undertake radiation therapy - but she says she has been told previously she has "months" to live.

"I don't feel like I should be fighting. I think I should be conserving my energy to use it in other ways," she says, adding she is lucky enough to have a son to look after her, as well as the hospice to come to when she wants a rest.

Happy, lucky or privileged is also the way the staff at St Joseph's describe their work with the dying. Far from being a depressing place to work, the nurses, doctors and volunteers report feeling "emotionally and spiritually" rewarded by the task of allowing terminally ill patients as much freedom from pain - as much "normalcy" - as possible.

"Normalcy" is a relative concept when dealing with the last stages of cancer, HIV, renal failure and other terminal conditions that keep the hospice close to full occupancy all year, every year. Around 500 patients pass through the hospice each year. But the medical staff who have come from other backgrounds to work there say it is the best place they can be.

"Our focus is professional - we are not angelic, but very mortal," says Jan Nichols, hospice manager. "It is not an easy area of work. We have only a short time to make people feel at ease. The people are dealing with the knowledge that they are not going to be cured and it's a real crisis for most. We do need to be very empathetic."

She says dying is a reflective time, when patients wonder about the meaning of their lives, whether they were important to people and what it all means. These are not especially religious sentiments, although often "spiritual", she says.

The movement's origins are religious, however. In medieval times, a "hospice" - usually attached to a monastery - hosted travel-weary crusaders, many of whom were terminally ill, on the way to the Holy Land. In the 1960s in Britain, the word was commandeered to describe a system of home care and in-patient facilities for the dying - mostly cancer patients who were adrift in a community largely ignorant and frightened of the condition and its symptoms.

In Auckland around the same time, the Sisters of Mercy had also wanted to establish a hospice but their "place for the dying" unnerved the City Council. However, in 1979, after a determined campaign, the Sisters closed their maternity wards and opened St Joseph's Mercy Hospice, the first in the city. It takes patients referred from Central and West Auckland - and they do not have to be religious.

There are now eight hospices in the Auckland area, all part-funded by the Government. But community goodwill is still vital to their survival.

At St Joseph's, 180 volunteers provide everything from aromatherapy, massage, art therapy, tea and biscuits to, perhaps most important, an ear for patients who want to talk about their hopes and fears.

For all the pain relief and comfort medical staff, family and volunteers can offer, Nichols says the last days or moments of life can still be a struggle, especially if people are leaving behind long-time partners or have unresolved issues with their families.

In some cases, family members of a patient will quit jobs and upturn their lives on hearing of a "terminal" prognosis, only to realise they have put their lives on hold too soon. Advances in medication and pain relief have, in some cases, extended the time and quality of life of terminal patients, and many are justifiably anxious about their part in the upheaval of their family's lives.

"So much is happening for the patient," says Susie Watkin, a palliative care nurse with 20 years' experience at St Joseph's. "Sometimes there is not enough time, and sometimes just not the ability to get issues fully resolved, which is their choice. But it can be hard to watch."

But she says she has "never felt the slightest hint of depression ... every day I go home richly rewarded by even just a moment of connection. It's that connection that you make on a deeper level with a patient that is such a privileged position to be in."

Another difficulty is when a patient's body is racked with illness, which can change both the patient's perception of his or herself and their relationship with their partner. For many patients, who are accustomed to being in control of their lives and their bodies, the change can be debilitating physically and emotionally.

Community nurse Carol Thornbury tells a wrenching tale of a man who had a huge cavity in the middle of his chest, as a result of cancer, which left him reluctant to hug his beloved wife. Viewing the distress the physical distance from his wife was causing, Thornbury decided the man needed affirmation that his life and work had been meaningful and worthwhile - and that he was still a lovable, rather than repugnant, person. Shortly after talking to him while dressing his wounds, she walked by his room to see the man holding his wife. He died that night.

Just a day of listening to the stories, reading the tributes to former patients written by grief-stricken family members and interviewing the hospice workers is emotionally exhausting. How do the staff cope with the relentlessness of death? Clinical charge nurse Margaret Goldsmith ponders the question, then tells how hospice workers find strength in talking about their work with each other. As part of their coping mechanism, the staff light a candle for those who have died. Regular holidays are also important.

"We need to be comfortable ourselves with death. That doesn't mean we don't struggle sometimes. About 40 per cent of our patients are under 65, meaning that we are often dealing with people our own age, in similar situations to ourselves."

Dr Bruce Foggo, medical team leader at St Joseph's, says he felt more isolated in the community as a GP than he does at the hospice, although medically and emotionally the work is more challenging. As he says, "There have been some significant advances that allow people to be managed more easily, with novel medication and novel ways of delivering [that medication]."

Morphine, for example, can now be delivered in long-acting tablets or capsules that deliver continuous pain relief. He says most people's pain - often a result of a complication of secondary cancer - can be handled with the drugs available.

He and the other staff agree that despite perceptions, euthanasia is not considered by many terminal patients. Certainly hospital staff interviewed seem adverse to the idea: most patients have a will to live and often keep themselves alive until milestones such as weddings or birthdays. Also, euthanasia is anathema to both the Catholic faith and the values established by the Sisters of Mercy.

"In reality, more than half our patients are up and about and independent, and we encourage that," says Foggo. "But our philosophy here is neither to shorten nor prolong a life in its final stages."

Some patients do fight against death as they fought in life. Others are so accepting they decorate their own coffins (a growing trend). For Gwen Gray, hope still flickers in the form of radiation therapy, but she says she has no regrets and is not bitter.

"I've had to accept I may not have long and feel I should make the most of it. I've had a fantastic life, a wonderful husband and son, I've been able to travel, we had a boat and a caravan to go on holiday. I've been very lucky, very lucky."