Opening Statement to Joint Oireachtas Committee on Health and Children in Relation To
Opening Statement to Joint Oireachtas Committee on Health and Children in relation to End of Life Care
Thursday 13th November
Cathaoirleach,
Deputies and Senators,
Good morning and thank you all for the opportunity to address the Committee on the subject of end of life care.
My name is JoanKellyand I work in the Irish Cancer Society. I am here today to talk about end of life care for cancer patients. I will be speaking about the needs of cancer patients and making recommendations about how some of these needs can bebetter met.
Cancer is one of the leading causes of death in Ireland and cancer patients are currently the biggest group of specialist palliative care users. This is unlikely to change. Cancer accounted for 8,684 deaths in Ireland (CSO, 2011). The National Cancer Registry (NCRI)predicts that the number of cancer cases will increase from 22,000 a year to 42,000 a year by 2020.
Improvements in cancer detection and treatment mean that cancer survival rates are improving with 65% of cancer patients surviving their illness. New treatments mean that people with cancer are living for longer but many will require end of life care. An ageing population with complex medical needs is likely to further increase demand for palliative care services. This presents a significant challenge for a health system, which is undergoing extensive reform in the face of an increasingly difficult financial situation.
The Role of the Irish Cancer Society in Palliative Care
Palliative care is an approach to caring for people with illnesses that will not be cured and can be delivered in a variety of settings including acute hospitals, community hospitals, nursing homes, hospices, or in the home.
An Irish Hospice Foundation study in 2004 found that two thirds of people wish to die at home. Data from the Irish Hospice Foundation (2013) tells us that nationally, only26%of people do so.
In supporting end of life care for cancer patients in the primary care setting, the Irish Cancer Society provides a night nursing service in the patient’s own home. The Society began providing this service in 1986. This is the only national palliative care service available to cancer patients at night in their own home. The Irish Cancer Society receives no state funding towards this service and is dependent on public donations to operate the service. The service plays a vital role in supporting integrated palliative care and without it, many patients would have to be readmitted into hospital, as they could not be cared for in their own home.
In 2012, the Irish Cancer Society provided 7,600 nights of care to2,161 cancer patients.The average cost per night of care is €350. The demand for this service increases annually at a rate of approximately 7%. It cost €2.6 million to deliver the service in 2012.
Recommendation: The Irish Cancer Society is seeking that further policy development will support integrated palliative care in primary care and the Money Follows the Patient model will incorporate end of life care at night-time in the patient’s own home.
A gap in the provision of home care exists as night nurses are available to the patient in their home from 11pm-7am. In general, day servicesare available from 9-5. This means that from 7am-9am and from 5pm-11pm, there is no palliative homecare nursing service available to patients and their families. This can cause considerable distress.
Recommendation:This gap needs to be bridged by integrating the night nursing service into palliative care and primary care servicesso that patients have access to 24 hour care if required.
Access to services
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 possible.
Patients with a terminal illness are entitled to an emergency medical card which is valid for 6 months. A letter from a doctor or consultant stating that the patient has a terminal or life-limiting illness is required in order to obtain the card. Currently, cancer patients with an incurable cancer who survive for longer than 6 months must be reassessed on financial grounds. This requires extensive paperwork at a time of considerable distress for the patient and their family. It is estimated that 20% of these discretionary cards require renewal after 6 months.
The Society has heard that doctors and consultants may be reluctant to write ‘terminal’ or ‘life-limiting’ on a letter required to obtain a medical card because of the impact which this has on the patient. This is a barrier to patients accessing the services they need.
Recommendation: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.
Psycho-oncology Services
Forty per cent of people with cancer are known to experience significant distress and anxiety which requires the intervention of as mental health professional.
The Strategy for Cancer Control (2006) recommended that:
“the HSE should ensure that access to comprehensive psycho-oncology and psycho-social support is provided for cancer patients and their families in each managed care network”.
Currently, only 2 of the 8 dedicated cancer centres have a dedicated psycho-oncology service.
Recommendation: The Irish Cancer Society recommends that dedicated psycho-oncology services be delivered in each of the designated centres and hospitals where cancer is treated. The psycho-oncologist should be part of the multi-disciplinary team and be involved in the patient’s care from the point of diagnosis
This concludes my opening statement. I am happy to answer any questions you may have.