Dr. Margaret Clifford:

I thank the Chairman and members of the committee for inviting me here today, as chairperson of the Irish Association for Palliative Care. While I am a specialist working in palliative care, I am here on behalf of the board of the Irish Association for Palliative Care, a representative organisation of all health-care professionals involved in the delivery of palliative care across the country. It is a collective and expert voice driving patient-centred, equitable and accessible palliative care for all who need it.

As other speakers have also mentioned, palliative care is, first and foremost, about life. It is an approach to care that is life-affirming and life-enabling. I once looked after a gentleman who had developed a pressure sore on his right hip because he was in such dreadful pain from a pelvic tumour that the only position he could tolerate was sitting or lying on his right side. He said it felt like someone was sticking a hot poker into him. On admission to the hospice, he was in despair. He said it felt like his life was over. After two weeks of intensive pain management, of his physical, psychological, social and spiritual pain, with contributions from all the members of the interdisciplinary team, he was discharged home a changed man, with follow-up from the community specialist palliative-care team. On discharge, he said that he now felt he could live again and enjoy the simple things in life. He subsequently attended his daughter's wedding and died many months later in his own home.

We are delighted the committee is asking the question what needs to happen to ensure that people die well in Ireland. I echo what Dr. Creedon has said that we need to ask the question what needs to happen to ensure people live as well as possible right up until they die. Access to palliative care is the answer and we propose to elaborate this under the headings of when, where, how and by whom.

When is palliative care needed? Although the gentleman I just described had cancer, the palliative-care approach is applicable across all illnesses that cannot be cured, all ages and in some cases from the time of first diagnosis. Most deaths in Ireland, other than road traffic accidents, poisonings and suicide, can be anticipated in some way by the treating clinicians. The international literature suggests that, if a clinician answers, "No" to the question, "Would you be surprised if your patient died in the next six to 12 months?", then a palliative care approach should be considered. This could be the entry point to an informed discussion between the treating clinician, the patient and, if appropriate, the family.

Where should palliative care be delivered? Palliative care is an approach to caring for people with illnesses that will not be cured - it is not about a geographical place. In specialist palliative care we aim to provide a service without walls, going to wherever the patient is, literally, as Dame Barbara Monroe, chief executive of St Christopher's Hospice, puts it, to deliver "palliative care in the bed you're in", whether that bed is in an acute hospital, community hospital, nursing home, hospice, or indeed the patient's own bed in his or her own home. Unfortunately significant inequalities currently exist in specialist palliative-care service provision across the country, and the range of services that people with advanced disease can access is hugely variable according to where they live.

How should palliative care delivered? Specialist palliative care works best as an integrated programme, which means combining inpatient hospice beds with hospital-based inpatient and outpatient services, community services, bereavement care, and education and research services, with seamless pathways between one care setting and another, so that patients and their families can access the element of care that is most appropriate at any time.

An example would be a specialist palliative-care programme providing in-reach to community hospitals and nursing homes, so as to avoid the necessity of sending elderly patients to the emergency department inappropriately and, if and when these patients are admitted to hospital, that their discharge back to a more appropriate setting is expedited. Similarly, specialist palliative-care services work alongside paediatric and primary-care teams in enabling children with life-limiting illnesses to be cared for in their own homes.

A core value of palliative care is the prevention and relief of suffering. Support provided to family caregivers by the interdisciplinary team throughout the patient's journey and bereavement support after the patient's death help to prevent potential physical and mental ill health resulting from having lost a loved one. It is important that after-death bereavement support for families is factored in when implementing a "money follows the patient" model of health care provision.

Who should deliver palliative care? The short answer is palliative care is everybody's responsibility. For complex patients, specialist palliative care services will be directly involved in delivering care to a patient at any point and sometimes throughout the patient's illness journey, working alongside generalist services and all other specialties. However, there are other patients whose needs are such that they do not necessarily require the specialist palliative-care team to provide care directly to them. Rather the need is for the specialist palliative-care team to provide ongoing education and support to the primary care team or other specialist team looking after them.

Very significant progress has been made in recent years with regard to palliative care in Ireland. Even as recently as 30 years ago, the gentleman with the pelvic tumour I mentioned earlier would simply not have been able to access the service that, in his words, gave him his life back. However, inequalities in service provision remain, and, as mentioned in the earlier session, the next ten years will see an exponential increase in the number of people with palliative-care needs, because of the increasing number of elderly people living longer with ill health and multiple illnesses, and at the other end of the age spectrum the increasing recognition of the number of children with palliative-care needs. Therefore, we need to work together, using an integrated approach, so that we can provide both quality and quantity along with equity to future-proof palliative care, so that those with a life-limiting illness can live the lives they want to lead right up until they die.