Dr. Regina McQuillan:

My opening statement has already been distributed to members so I will just go through some of the highlights because I probably cannot read as clearly as Mr. Curran. Palliative care is care for people with progressive fatal illnesses, or life-limiting illnesses. Palliative care is involved with trying to improve the quality of life of people living with life-limiting illnesses. Since 2002 the World Health Organization has recognised that early palliative care is beneficial to patients and a recent research study done on lung cancer indicates that people with early palliative care not only had better pain control and symptom management but they had less chemotherapy and lived longer with such early palliative care. There is much to be said in favour of early palliative care for people with life-limiting illness.

The IAPC is a membership organisation working to support people working in palliative care in Ireland. We work very closely with the All-Ireland Institute for Hospice and Palliative Care and with the national clinical programme for palliative care. We support the work of that programme. We welcome the recent launch by the Minister, Deputy Simon Harris, of the palliative care three-year development framework. As we are involved with the care of people with life-limiting illness, we are very much aware of the need to see where are the patient wishes and we very much respect the right of a patient to choose treatment. We respect that people may choose to have particular types of treatment or refuse particular treatment. One area of concern is that patients might think they would be forced to have treatment that is inappropriate, against their wishes or, ultimately, futile. The IAPC very much recognises the right of people to refuse treatment and it also recognises the right of people to have an advance care plan and state in advance what treatment they want when they are no longer competent. As the Assisted Decision Making (Capacity) Act 2015 is commenced in full, the IAPC will support its members in having the right to appropriate education and training so we can assist patients in this respect.

The IAPC also recognises that people may consider where they want to die. Currently, 43% of people die in acute hospitals but there are interesting statistics concerning where people wish to die; as they become less well, people are more likely not to want to die at home but in hospices. Currently there is insufficient hospice care to provide that type of support. Recent research with which I was involved has indicated that for people with serious illness, 17% would have seen home as their least favourite place to die as they felt they would not be able to get appropriate care, causing more stress for families.

A big part of palliative care is the treatment of symptoms such as pain. In the palliative care specialty we recognise it is always possible to treat symptoms and we hope to either reduce or eliminate those symptoms. Palliative care requires input from different disciplines within the regular multidisciplinary team, and it also requires input from other specialists, such as radiotherapists or intervention pain specialists. Patients may have intractable symptoms, such as agitated delirium where there is difficulty in thinking clearly, or have poor concentration and cannot make sense of the world. Delirium is a very common complication of serious illness. When patients have delirium, we hope to be able to reverse it by reversing the cause. Sometimes in such cases, or in other cases where patients may have intractable distress, it may be necessary to give medication that would cause sedation. The idea is to relieve the distress of the patient by causing sedation; the end point is not sedation or the death of the patient. We are very much aware that both the Irish Medical Council and the Nursing and Midwifery Board of Ireland would state that health care professionals have a right when patients are dying to ensure they die with dignity.

We are aware there are some symptoms where we must make further progress in development. This includes symptoms like fatigue, breathlessness, anorexia and weight loss. These are important areas for patients and we should be making further progress in this respect. The IAPC recognises very much the patient idea of personal autonomy but we are aware that autonomy, as such, is qualified as we are all members of a society. We are aware patients have their own self-worth and palliative care is very much focused on patient-centred care and what is important for the patient. Individual autonomy is not absolute and our concern is that if assisted suicide or euthanasia is legalised, it will put pressure on vulnerable people. In Marie Fleming's High Court case, the court mentioned the aged, the disabled, the poor, the unwanted, the rejected, the lonely, the impulsive, the financially compromised and emotionally vulnerable, who may elect to hasten death rather than avoid a sense of being a burden to a family or society.

There are many vulnerable people in our society and although there are safeguards in place, they do not work. The National Safeguarding Committee last year indicated that 8,000 cases of abuse are reported to the Health Service Executive, HSE, across all ages and types of disability. Research has also been done indicating that half the population witnessed the abuse of an adult, either themselves or somebody else. There is much abuse in Ireland against people who are vulnerable and our concern is that it is not possible to protect vulnerable people. Recent research and studies have indicated that in countries with assisted suicide or euthanasia, the protections are not as secure as may be portrayed. The British Medical Journalrecently demonstrated some failures in the Dutch regulatory system and concerns have been expressed by the Swiss Medical Association about the extension of euthanasia in Switzerland to people with depression. In Belgium there is conflict between some of those in favour of euthanasia and a particular psychiatrist about how she assesses patients and encourages them to have euthanasia while undermining the second opinion system. A recent study from Australia considered gender matters relating to assisted suicide and euthanasia. Women are much more likely to have assisted suicide and euthanasia because they live longer but are less likely to have social supports. It is interesting that where there are mercy killings outside the judicial regulation, it is much more likely to be male family members killing women in their own family.

I recognise Mr. Curran's comments on the change in legislation as it relates to suicide. Suicide was decriminalised not because this society believes suicide is a good idea but rather because society recognises that people who survive a suicide attempt need treatment and support rather than prosecution. Suicide is still considered to be a blight on society. We represent health care professionals with daily experience of caring for people with life-limiting illness and we recognise some of these people are vulnerable, either as a result of their illness or other factors. There should not be a change in the law as a change would put vulnerable people at risk. It is not possible to put adequate safeguards in place. The drive to improve care for people with life-limiting illness by education, service development and research may be compromised because we are all part of society and personal autonomy is not absolute.

We feel that allowing assisted suicide would devalue the lives of those who are open to this against those who are targeting suicide prevention campaigns. We very much believe that part of palliative care is helping people live and die with dignity.