Ms Joan Kelly:

I thank the Chairman and the members of the committee for inviting me here this morning. I want to speak about the needs of cancer patients and make recommendations for end-of-life care for them that will better meet their needs. Cancer is one of the leading causes of death in Ireland and cancer patients are the largest group to avail of specialist palliative care. This is unlikely to change.

Cancer accounts for over 8,600 deaths in Ireland every year. It is predicted that the number of cancer cases will increase from around 30,000 as it is now, to 42,000 in 2020. Improvements in cancer detection and treatment mean that cancer survival rates are improving, with 65% of all patients diagnosed surviving their illness. New treatments mean that patients with cancer live longer but will require end of life care. An ageing population with complex medical needs is likely to increase demand for palliative care services. This presents a significant challenge for a health system undergoing extensive reform in the face of increasing financial difficulty. Palliative care is an approach to caring for people with and illness that will not be cured or is life-limiting. It can be delivered in a variety of settings and no doubt the committee has heard more about that in the past few days. It is also important to note that palliative care can be delivered in any setting, acute hospitals, community hospitals, nursing homes, hospices or in the patient’s home. The Irish Hospice Foundation found in 2004 that two thirds of people wish to die at home but unfortunately the national average is approximately 26%.

In supporting end-of-life care for cancer patients in the primary care setting the Irish Cancer Society provides a night-nursing service to patients in their own homes. This service began in 1986. It is the only national palliative care service available to cancer patients at night in their own homes. The Irish Cancer Society receives no State funding for this service and depends entirely on public donations. The service plays a vital role in supporting integrated palliative care without which many patients would have to be admitted to hospital and could not continue to receive care in their own homes. An admission to hospital for people who are as ill as these patients are would unfortunately result in their death's occurring within 24 or 48 hours. It is imperative that patients being cared for at home continue to be cared for there and have the choice of place of care for their death.

In 2012 the Irish Cancer Society provided 7,600 nights of care to over 2,100 cancer patients. The average cost of a night of care is around €350. The demands for this service are increasing at a rate of approximately 7% a year. It costs the society approximately €2.6 million to provide night-nursing to the entire country. The Irish Cancer Society will seek further funding and policy development to support integrated palliative care in primary care and recommends that the money-follows-the-patient model should incorporate end of life care at night in the patient’s home. There is a gap in the provision of home care as the Irish Cancer Society night nurses are available generally between 11 p.m. and 7 a.m. In general day services operate between 9 a.m. and 5 p.m. which results in a gap in provision between 7 a.m. and 9 a.m. and 5 p.m. and 11 p.m. This can cause considerable distress and is a barrier to patients’ remaining at home. The gap needs to be bridged by integrating night-nursing services into palliative and primary care services so that patients have access to 24 hour care if and as required.

Palliative care patients require timely access to services and care and should be able to access those services in the most efficient and stress-free manner. Patients with a terminal illness are entitled to an emergency medical card, valid for six months. A doctor’s or consultant’s letter stating that the patient is terminally ill or at the end of their life is required to obtain such a card. Patients with an incurable cancer who are not expected to survive longer than six months must be reassessed on financial grounds if they survive longer than six months after the card was provided. This requires extensive paperwork at a time of considerable distress for the patient and the family.

It is estimated that 20% of these discretionary cards require such a renewal after a time period of six months. The society has heard that doctors and consultants may be reluctant to write "terminal" or "life-limiting" on a letter and give that to the patient in support of their application for a medical card. The Irish Cancer Society recommends that patients in the advanced stage of their illness be granted a special status that does not require them to be financially assessed at a time of significant distress.

In regard to psycho-oncology services, I have some points to make and I will then conclude. Some 40% of cancer patients will experience significant distress as a result of their diagnosis. This requires the intervention of a mental health care professional to help them cope with what could already be a terminal illness at the point of diagnosis or could soon become a terminal illness. The strategy for cancer control 2006 recommended that the HSE should ensure access and that comprehensive psycho-oncology and psycho-social support be provided to all cancer patients and their families in each of the managed care networks. Currently, two of the eight designated cancer centres have dedicated psycho-oncology services. The Irish Cancer Society recommends that dedicated psycho-oncology services be delivered in each of the designated hospitals where cancer patients are treated and that psycho-oncology should be part of the multidisciplinary team and involve patient care from the point of diagnosis onwards.