Developing our palliative care for all who need it

Dr Liam O’Síoráin writes that investment in palliative care is not only in the best interests of patients, it is also cost-effective.
It is almost a national sport today for people to comment on how we squandered our wealth during the Celtic Tiger era. But the development of palliative care in Ireland in recent years is an example of money well spent.

In 1994, there were two consultants in palliative care, Dr Michael Kearney at Our Lady’s Hospice in Dublin and Dr Tony O’Brien of Marymount Hospice in Cork. There were only three inpatient units or hospices in the country. Palliative care had yet to become a recognised specialty and there were only a few hospice home-care teams.
h4. Structured development
In the autumn of 1994 the Minister of Health, Brendan Howlin launched a strategic plan, ‘Shaping a Healthier Future’. For the first time, palliative care was identified as an area for ‘structured development’.
Over the following years, successive plans on cancer strategy were published, culminating in the 2001 report from the National Advisory Committee on Palliative Care that laid out a blueprint for palliative care development in Ireland. This report was adopted as Government policy.
This internationally praised report continues to be the reference document for palliative care. Successive Ministers of Health supported the implementation of the plan and the Department of Health worked hard to ensure that hospice care would be available to everyone who needed it countrywide.
There have been enormous improvements in the delivery of hospice care and the continuing investment has paid dividends. In December 2007, there were 686 staff and 153 specialist palliative care beds.
Over 20 home-care teams nationwide were supporting patients in their own homes. A total of 25 palliative medicine consultants, leading multi-professional teams in acute hospitals, hospices and the community brought specialist palliative care to 6,000 patients last year.
New hospices have been built, often with huge community fundraising involvement. More people are cared for at home by their GP, supported by the palliative care community teams. The annual palliative care budget has reached €75 million.
An indication of what can be achieved by a visionary and universally accepted palliative care strategy, political leadership on a local and national level and goodwill in the community is the reality that Ireland’s palliative care service was ranked second in Europe last year.
The current centralisation of cancer services in large ‘centres of excellence’ is well under way, but there also needs to be investment closer to home for patients with advanced disease who are too sick to travel long distances.
The argument for critical mass and focused expertise has been well made and will lead in time to improved survival and remission in the centres of excellence. This is not in dispute, but the improved survival and longer remission does not translate into less work for palliative care services.
h4. Increased demand
As our ageing population’s cancer prevalence rises, palliative care services will be accompanied by the rising numbers of people dying with cancer and other non-malignant conditions. This demographic wave will mean that by 2016, up to 13,000 people will need hospice care. This leaves only a short time to plan for this increased demand.
In addition, specialist palliative care services have been looking after more people with non-malignant diagnoses, such as heart failure, chronic lung conditions, renal failure and progressive neurological conditions such as motor neurone disease and multiple sclerosis.
The importance of having an inpatient specialist palliative care hospice unit to allow admission of patients with complex problems at any stage of their illness, occasional respite admissions when families need a break, and admissions at the end of life for those who cannot be cared for at home is clear. The inpatient unit itself is a ‘centre of excellence’ supporting the home care teams and outpatient/day hospice facilities.
Currently there is a significant gap in inpatient hospice care in the north east, the midlands and the south east. Some 12 counties have no access to this specialist inpatient service.
h4. Urgent need
There is an urgent need for a hospice in Waterford, Tullamore and Drogheda. Units are also needed in Kilkenny, Castlebar, Wicklow, Roscommon, Tralee, Blanchardstown and Cavan.
These specialist units need to be built and staffed as recommended in the 2001 report to a defined standard to ensure delivery of specialist care as close as possible to the regional acute hospitals serving their local communities.
Figures in 2007 revealed there was a palliative care staff shortage of 610 and a bed deficit of 237 compared to the standards set in the 2001 report. Regional spending on palliative care varied from a high of €35 per head of population to just €7.90 per capita.
These huge regional variations mean some of our citizens are well served with palliative care services while others are not. This is unjust and unacceptable.
h4. Equity of access
There has been a strong commitment to continue the development of palliative care, and the Minister for Health and Children Mary Harney has committed to publish the National Framework for Palliative Care Services 2009-2013. This prioritises areas for development in an attempt to improve equity of access for all and to remove the current regional differences.
It is very difficult in the current economic crisis to argue for investment in services when the prevalent focus is on significant cutbacks. One argument for investment in palliative care is simply a value-for-money argument.
There is a growing body of literature showing just how cost-effective palliative care can be. Care at home, in particular, is not only better for the patient and their family, but is also more cost-effective.
h4. Greater comfort
International studies have found that patients using palliative care services have greater comfort and dignity and use 25 per cent less resources than those receiving ‘usual care’ who die in hospital. Research in the USA indicated that savings were made within 18 months when there was a reallocation of resources and structures in favour of palliative care.
One area where it is hard to deny investment is in the provision of palliative care for children. Some 1,369 children in Ireland have life-limiting illnesses. Over 350 children die each year. The Irish Hospice Foundation (IHF) has identified the provision of palliative care to children as an absolute priority.
h4. €2 million in funding
In the context of the current economic difficulties, the IHF has committed over €2 million in funding to allow the employment of a paediatrically trained palliative care consultant and a number of outreach nurses in Dublin, Cork, Galway, Limerick, Offaly, Waterford and Louth, who will support families to care for their children at home.
At present, this whole initiative is stalled in the current freeze on recruitment in the HSE. It beggars belief that, given that the funding will last for three years, there is not the confidence to give this project the go ahead. If nothing else, it creates employment and allows improved specialist care at home to vulnerable children and to families who are already dealing with the impending loss of a loved child.
The IHF is reviewing other ways of recruiting the outreach nurses but the paediatric palliative care consultant must be recruited by the HSE.
h4. Enormous increases
Palliative care services face enormous increases in workload in the coming years. Most services are already stretched and some areas of the country have limited or no access to specialist palliative care hospice beds.
It is a challenge to ensure that funding intended for these specialist services are correctly spent in the areas needed. The National Council on Palliative Care, which was set up on the recommendation of the 2001 report, performed this overseer function but its term has come to an end. There is a need to have a representative body to continue to advise and to plan the development of services.
h4. Fundraising support
It is also a challenge to continue to grow essential services in the current climate and communities can play their part, both in advising their local politicians of their importance and in practical fundraising support.
Local communities have shown their support for hospice care over the years — and this week on June 12 and 13, Sunflower Days will allow people to support the development of local hospice services.
Every one of us, irrespective of our age, diagnosis or where we live, should have access to the best palliative care available at our time of need.
* Dr Liam O’Síoráin is a Palliative Care Consultant and Chairman of the Irish Palliative Medicine Consultants Association.