Living and dying with dignity

THE STAFF AT Northwest Hospice in Sligo town have come to know Gabrielle Gallagher well since she began availing of respite there a year ago. They know the avid reader and classical music fan thrives in a calm, quiet atmosphere. "I don't handle noise or chaos very well," explains the 64-year-old, who has lived with a serious heart condition since suffering a number of aneurisms.

They also know that the well-travelled Dubliner, a former member of the Canadian air force who once ran a pet resort in the Rocky Mountains, has trouble sleeping and that she can often be found wandering the corridors of the hospice in the early hours of the morning. "Nobody bothers me. I can be myself here. It's like a second home," she says.

The hospice staff recognise her quirks and foibles in the manner of a caring family member. They know the things she likes or is able to eat, the times when she appreciates company and when she wants to be left alone. "At home it sometimes takes me four hours to make a salad, and with my swallow gone these days I can only take a couple of bites. Here they know how to whip things up for me that I can manage to eat," she says.

Since 2006, the hospice homecare team has made her life as comfortable as possible in her house in Carrick-on-Shannon, Co Leitrim. The team provides practical support, such as a special electric chair or a hospital bed, and calls her several times a week to check on her needs. But it was a year-long battle to win the trust of this fiercely independent woman - who until recently still managed her daily hour-long walk - and persuade her to come in for much-needed respite care.

Gabrielle admits this reluctance to attend as an inpatient stemmed from her perception of the hospice as a "depressing" place, with "people crying and hovering over beds". The word hospice made her think of facilities designed only to respond to the needs of those with cancer, where patients were "helped along with morphine" until, a short time later, they died.

"I used to think the hospice was just a place to come and die. I thought coming here meant giving in and I felt way too young to give in," she says. "That's why it took them so long to get me through the doors."

The idea that hospices are only for cancer patients is something of a reality in the end-of-life care sector in Ireland, something the hospice movement is working to change. Earlier this week a report titled Palliative Care for All: Integrating Palliative Care into Disease Management was jointly launched by the Irish Hospice Foundation and the HSE. The report was commissioned as part of a project to extend palliative care for patients with conditions other than cancer.

AT THE MOMENT, 95 per cent of the 6,000 people who access hospice or palliative-care services in Ireland each year are cancer patients, despite the fact that in 2006 deaths from conditions such as chronic obstructive pulmonary disease, dementia and heart failure exceeded deaths from cancer by more than 20 per cent.

According to Eugene Murray, chief executive of the Irish Hospice Foundation, there are two things that will guarantee you good end-of-life care in Ireland. "If you've got cancer or if you live in the right place," he says. A study released earlier this year showed that up to December 2007 there was no hospice in three former health board regions, representing 12 counties. The study also revealed a national deficit of 237 palliative beds and 610 care staff, while many non-cancer patients were shown to have no access to hospice services.

"We know that it all comes down to diagnosis or region, and we are trying to change that by actively working with all of the hospices and the Irish Association of Palliative Care and the Irish Cancer society. We can't discriminate on the basis of diagnosis or location; services have to be offered on the basis of need." The report also found that while 19 per cent of specialist palliative care services said they only accepted referrals from people with cancer, motor-neurone disease and Aids, 81 per cent reported that access to services was based on need rather than diagnosis.

Palliative care is defined by the hospice movement as "the total care of patients and families at the stage in a serious illness where the focus has switched from treatment aimed at cure to ensuring quality of life". According to Murray "it caters for a person's entire physical, emotional, psychosocial and spiritual needs."

The aim of this week's report is to ensure equitable access to palliative-care support services to patients with all life-limiting conditions. Originally, the hospice movement in Ireland was set up by voluntary organisations that were driven by the need to care for cancer patients. With the State increasingly involved, there has been a move towards broadening out the services, although changing that culture will take time.

"Some of the hospices are afraid that they don't have the skills to deal with other conditions, such as heart failure or lung failure, so there is a transition that needs to be gone through. It's not going to happen overnight, but it's important that the service is extended," says Murray.

Non-cancer patient Gabrielle was finally persuaded to come in to Northwest Hospice for respite - she attends a few times a year - when one of her homecare team informed her that she was experiencing heart failure. "After a week in here I couldn't get over the change in my attitude," she says. "I had been under the illusion that the hospice was a place to come and die, but it's not - well it can be, and many of us eventually do, but what I am saying is they make it so pleasant and make you feel like somebody cares, and that was really hard for me because I've always been such a loner. Still, you have to lean on people sometimes; that's what they've taught me. Before I started coming here I would never tell anyone if I was in pain, but here they drew me right out. The nurses don't dwell on your condition; of course there is a serious time when you have to discuss medication, but it's not the focus."

DESPITE THE ECONOMIC downturn, those in the hospice movement insist it makes financial sense to address the inequities in hospice services. About 30,000 people die in Ireland every year, with the first national survey in Ireland on attitudes to death and dying in 2004 finding 67 per cent of people wished to die at home, "pain-free, conscious and surrounded by their loved ones". The reality in Ireland today is that two-thirds of people die in hospitals.

The average Irish person's lifetime expenditure on health services is about €300,000 and almost 25 per cent of that sum, €70,000, is spent in the last year of life. More than 40 per cent of that is spent in the final month. Spending on patients in that last year is estimated at 10-15 per cent of a country's total health budget. In Ireland this would amount to €1.6-€2.4 billion of the total health budget of €16 billion. And yet the current budget for hospice care is only €75 million, less than 5 per cent of the entire "last year of life" spend.

"It doesn't make sense when all the international studies show people who go into hospice care programmes consume significantly less medical resources and live longer than people in hospital," says Murray. As well as the financial savings, studies show improved length of life, symptom control and increased patient and carer satisfaction when hospice programmes are accessed.

One American study last year compared a group of patients in palliative care with a group in hospital care. The palliative group had a 50 per cent shorter length of stay and their daily medical costs were lower by 33 per cent. The HSE's five-year national action plan for comprehensive palliative care - which includes the building of nine new hospices - has not yet been officially published, but it is understood that implementing the full plan would cost an additional €75 million, about half the cost of running a large acute hospital for one year.

ANOTHER AREA THOSE in the hospice movement hope will be expanded is palliative care services for children. A needs assessment for this sector, carried out jointly with the Department of Health and Children and the Irish Hospice Foundation three years ago, highlighted the need for a review of all paediatric palliative-care services. The assessment concluded that the preferred place of care, and ultimately death, was at home, and yet when it comes to children, the specialist staff and supports are not yet in place to facilitate this service.

Based at Temple Street Children's Hospital in Dublin, Bevan Ritchie is the only children's outreach nurse in the country, although there are plans to recruit seven more. His job is to care for children with life-limiting illnesses in the community, and earlier this year he became involved in the care programme of baby Sam Nolan, who was born with a rare and complex brain disorder.

"It was decided at a multidisciplinary meeting that it was no longer fair on Sam to continue to actively treat him in hospital when it wasn't going to prolong his life. It was felt the emphasis should be on making him comfortable at home for as long as possible while continuing to manage his care," he says.

Sam had a variety of complex needs and his homecare involved linking several different professionals and accessing support from organisations such as the Jack and Jill Foundation and the Children's Sunshine Home. (The home has advanced plans for a dedicated children's hospice in conjunction with the Laura Lynn Foundation.) The Blackrock Hospice homecare team was referred early on in the case in order to assess Sam's needs and ensure the correct support was available.

Sam spent three months being cared for at home before he died in May shortly after his first birthday. Ritchie visited the family regularly and liaised with the support team, ensuring there was continuity of care. Sam's parents, Jo Sinnott and John Nolan, say his and the team's support during those three months provided their son with "so much more comfort and far less loneliness" than if he had been in hospital.

"The hospital was fantastic, but there was nothing more that could be done for Sam and it made sense to bring the services to him instead of the other way around," says Jo. "Security was the most important thing - to be able to pick up the phone and know there was somebody at the end of the line who knew about Sam who would be there almost before you put the phone down to administer whatever Sam needed. He had the best three months of his life. We took him everywhere, we started to forget he was sick, we still concentrated on the treatment but we didn't constantly think about his condition or think 'he's going to die today'. We woke up and thought 'Sam is going to have a great day today' and that's what being at home allowed us to focus on. We got to know him for the first time without the constant interruption of panicked trips to hospital. We had him to ourselves and he was free to be himself, for three whole months, which was a lifetime for us."

During this time, the couple received an education in the true meaning of palliative care. "If I heard the word hospice before I would have thought it meant headstone, but it's not like that at all. Dying was never mentioned," Jo says. "The true meaning of palliative care is comfort. Whether you are an old man or a baby, nobody should have to die in pain and nobody should have to end their days in hospital."

The hospice movement in Ireland is on the verge of significant expansion, but only if the appropriate funds are committed where they are needed. A national audit of end-of-life care is currently being carried out. Fifty deaths in 24 acute hospitals are being examined in detail using feedback gathered from the deceased patients' relatives, doctors, nurses and other hospital staff. This will provide a detailed picture of end-of-life services in hospitals, which, despite the best efforts of staff, can often lack the dignity and privacy patients and families desperately need at this time. The Hospice Friendly Hospitals Programme, introduced by the hospice movement last year, also aims to improve the provision of palliative care in hospitals.

FROM NEXT MONTH, a year-long forum on end-of-life issues in this country established by the hospice foundation will facilitate a national conversation around death, dying and bereavement. It is expected that the forum will shape future public policy on end-of-life issues.

In the meantime, palliative care, where available, continues to improve the quality of life of people such as bone cancer patient Mary O'Duill, wife of the late actor Brendan O'Duill, who attends Our Lady's Hospice in Harold's Cross, Dublin, for respite about once a year. For the past four years, the hospice homecare team has attended to her needs and adapted her home so that her painful condition can be made as comfortable as possible with hospice-friendly facilities.

"At first, when I was approached about palliative-care services, I found it very upsetting because I thought it meant it was the end," says Mary.

"My husband had to push me out the door to go there. But I got so much from it. Many years ago, as a member of Al Anon, the support group for family and friends of alcoholics, I learnt to live one day at a time, and this philosophy helps me to live with cancer rather than die with cancer." Of course there are bad days too. "And on those days I ring the hospice, a nurse is here within the hour and by the time she leaves I am laughing," she says.

For non-cancer patients such as Gabrielle Gallagher, whether at home or taking time to recuperate in the hospice during the most challenging periods of her illness, the hospice services have provided a level of comfort and care she could only have dreamed of while she was looking after herself at home alone. She believes these services should be available to everyone.

"You should be able to get care like this in every town and county in the land, whatever your illness, wherever you live . . . If you want a second home where people genuinely care for you and want to make you comfortable when coping with your illness becomes too difficult, then this is as close as it gets."