Download Joan Kelly, Irish Cancer Society – Opening Statement

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 Joan Kelly and 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
be better 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, only
26% 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 to 2,161 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 services are available from 95. 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 services so 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 psychooncology service.
Recommendation: The Irish Cancer Society recommends that dedicated psychooncology services be delivered in each of the designated centres and hospitals
where cancer is treated. The psycho-oncologist should be part of the multidisciplinary 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.