Palliative care for non-cancer patients has been mooted for more than a decade now. While budgets are tight, some inroads have been made in recent years. James Fogarty assesses progress
In 2001 the Report of the National Advisory Committee on Palliative Care recommended extending access to palliative care to patients with conditions other than cancer, a recommendation that was later adopted as Government policy. According to the Irish Hospice Foundation (IHF), central to this would be collaboration between disease specific specialists and specialists in palliative care.
Over the last four years the IHF has invested more than half a million euro in the development of palliative care for non-cancer patients. As part of this the Foundation, with sponsorship from the Alzheimer Society of Ireland, the Baxter Foundation (a US-based healthcare charity), the Irish Heart Foundation, and the Department of Health, invested €300,000 in a number of action research projects. These projects targeted palliative care in heart failure, dementia and COPD.
The IHF’s conference next week is entitled ‘Palliative care for all: Bridging the gap for all those with life-limiting diseases’. At the conference, the results and recommendations of these three action research projects will be presented.
Dr Karen Ryan, Consultant in Palliative Medicine at St Francis Hospice and the Mater Hospital, is the HSE’s clinical lead for palliative care. At the conference she will speak on ‘Putting theory into practice: Findings from palliative care action’ seminar.
“In Ireland, palliative care has focused on the care of people with cancer, but other patients, those with heart failure and dementia to name but a few, also need assistance in their journey and in many cases their needs are just as great. It’s very important that we get into the area of providing palliative care for these people and their families,” she told the Medical Independent (MI).
During the action research project, the first thing the researchers examined, Dr Ryan explained, was how to modify the traditional model of palliative care used for the treatment of cancer patients.
“One of the earliest parts of the project was a review of past cases and critical reflection on what the care was like, looking at the strengths and the weaknesses. It was from that kind of discussion that we started to tease out the areas where quality improving projects might be focused,” she said. “One of the things we found was that palliative care wasn’t something that was spoken about openly.”
In heart failure, the project found that there was a lack of communication between cardiology staff and those working in the hospice. According to the preliminary results of the action group, which were released in January, 98 per cent of cardiology staff had not had any palliative care training in the last two years, while 69 per cent were not familiar with the principles of palliative care.
In order to address these issues, the action projects observed the day to day actions in places already providing care and assessed the care that was being given. Mutual understanding and communication were identified as critical. Dr Ryan told MI that one of the strongest messages the conference will hear is that partnerships in care are critically important as the needs of end-of-life patients are complex.
To try to improve dialogue between specialties, the researchers developed information leaflets for both staff and patients on heart failure, something which benefited everyone, said Dr Ryan. The results have been encouraging. Better communication and more information, has allowed people to prepare for all possible eventualities in a considered manner, rather than having to react in crisis situations, she added.
“There was huge uptake of the communications sessions. People found it very valuable and integrated it into their practices. That is something I’ve seen on the wards; the quality of communication with patients and families is changing for the better,” she said.
Cooperation and communication with primary care has also been very positive, Dr Ryan added.
For cardiologists too the dialogue with palliative care staff was very beneficial, said Dr Niall Mahon, Consultant Cardiologist at the Mater Hospital.
“The Mater Hospital sees many of the most advanced and complex cases of heart failure. The therapeutic options for heart failure have improved dramatically in recent times, and many patients do very well,” he said. However, these advances unfortunately have their limits.
“There comes a point for some patients where it is clear that the patient is entering the end-of-life stage and it is time to change strategy and focus on comfort measures and quality of life rather than quantity of life,” said Dr Mahon.
“We have therefore been keen to partner with the palliative care services in the provision of end-of-life care to heart failure patients. It was fortuitous that the Irish Hospice Foundation was thinking along the same lines and broadening their activities from cancer into other chronic diseases. It funded an action research project looking at providing palliative care to heart failure patients both in the hospital and the community level, and we were successful in obtaining that grant with Dr Karen Ryan, Consultant Palliative Care Physician, Dr Jim O’Neill, Consultant Cardiologist at Connolly Hospital Blanchardstown, and North Dublin GP, Dr Mel Bates,” Dr Mahon explained.
The action research project has provided startling results.
“One of the many tangible outcomes of the project, and one that I had personally been very keen to see come about, has been the ability to look after a number of end-stage patients in the hospice environment, a move which benefited the patients and their families, but was not feasible only a few years ago,” Dr Mahon said.
“A particularly striking example of this is the case of a patient with a ventricular assist device who ultimately required end-of-life care. From the viewpoint of hospice staff, this is about as technical and complex as it gets in heart failure and it is a tremendous credit to all involved that he could be cared for in the hospice in his final days.”
Another target of the action research project, according to Dr Mahon, is to investigate the possibility of managing some end-stage patients in the community, although he added that this is still a work in progress.
“We’ve certainly had patients who were at end stage and dependent on various complex supports and wanted to go home, at least for a time. And up until recently that hasn’t been possible. But now, through this action research project and in partnership with the community intervention team, we’re drawing up protocols where end-stage patients can be managed at home,” he said.
The results of these action research projects will not only provide a blueprint for the introduction of palliative care for all, the IHF hopes they will also create an impetuous for its introduction too. The conference will be attended by a number of international experts and will take place on Friday 14 September at the RCPI.