Our Palliative Care for All programme provides information and resources for those working with people with life-limiting conditions.
Palliative care was traditionally only associated with people with cancer. However, the need to extend palliative care to those with life-limiting diseases such as chronic obstructive pulmonary disorder (COPD), heart failure, and dementia is now widely acknowledged.
Palliative Care for All emerged from a joint study completed by us in conjunction with the HSE in 2008. With an initial emphasis on dementia, COPD and heart failure, the study examined palliative care needs of people with life-limiting illnesses other than cancer to identify how palliative care could be applied to these patient groups in Ireland.
Outcomes and progress
The Palliative Care for All report highlighted that palliative care principles need to be embedded within ALL disease frameworks.
The following initiatives have resulted from this:
- action research/development projects supporting the introduction of a palliative approach in the management of heart failure, advanced respiratory disease, advancing neurological illness and for those with dementia were implemented.
- exploratory work with patient advocacy and voluntary groups such as the Alzheimer Society of Ireland on ways to introduce palliative care principles for constituents.
- publication of a paper by the Cystic Fibrosis Association of Ireland and IHF on end-of-life care for CF patients.
- our Nurses for Night Care service which is now available for people with diseases other than cancer who wish to die at home. We provide funding to the Irish Cancer Society to extend its night nursing service to patients with other life-limiting conditions.
- initiation of discussion on the palliative care needs of vulnerable sections of society, such as those with learning difficulties, mental health issues and the homeless.
- Living with Chronic Illness report, May 2017.
Disease specific information
Advanced Respiratory Disease
People with advanced respiratory diseases like chronic obstructive pulmonary disease (COPD), chronic bronchitis, emphysema and pulmonary fibrosis experience a range of symptoms causing discomfort and distress. Symptoms include shortness of breath, pain, physical discomfort, fatigue, anxiety and spiritual distress. While medical therapies are important in treating some of these symptoms, it’s also important to offer a care approach that will address overall comfort and relief.
The ‘Advanced Respiratory Disease and Palliative Care’ project ran from 2010-12. It aimed to devise, implement and evaluate appropriate palliative care responses for people with advanced respiratory disease.
Approximately 10,000 people in Ireland die from cardiovascular disease every year. Studies show the symptom burden of heart failure is similar to that experienced by cancer patients, yet these symptoms are not routinely identified or fully treated.
The Irish Heart Foundation with IHF produced the ‘Planning for the future with advanced heart failure‘ booklet
Chest Heart & Stroke Scotland have a free online learning resource that aims to support health and social care professionals in their management of people with cardiac disease.
COPD Support Ireland and IHF collaborated on a booklet titled ‘Planning for the future with COPD’. The booklet was developed by people with COPD and family carers who took part in a series of workshops. If you or someone you know has recently been diagnosed with COPD, this booklet may not be appropriate to read as a first resource. More information at www.copd.ie
Dementia causes a person to have difficulties in areas which are key to planning for and ensuring a good death such as difficulty with communication, diminishing capacity and uncertainty about prognosis. Dementia is unique as it is recommended that palliative care principles are introduced early in the disease trajectory.
Dementia palliative care can be understood both as a set of principles that underpin an approach to care and as a type of service that is provided (National Dementia Strategy, 2014). Dementia palliative care reflects the qualities of person-centred dementia care and the holisitic focus of palliative care. Palliative care needs can arise at any time in the course of the person’s condition and should be responded to at an appropriate level throughout the care pathway.
Dementia palliative care actively treats distressing symptoms (these can be physical, psychological and/or emotional) to optimise quality of life of people with dementia and their families, knowing that the underlying cause cannot be cured. Dementia palliative care involves supporting the person with dementia and his or her family to address and relieve the pain, distress and discomfort associated with advancing dementia and invite them to participate in making decisions about their future care.
Advancing Neurological Illness
IHF together with the Neurological Alliance of Ireland completed a project looking at the palliative care needs of people with advancing neurological conditions from the perspective of Neurological Alliance of Ireland member organisations. The report and key messages from this work is available by clicking on the first 2 pictures below. In November 2014 a Round table meeting was held to launch the report, share information and provide some direction. This led to the development of information booklet about planning for the future for people with neurological illness.This booklet is available by clicking on the 4th picture below.
The British Motor Neurone Disease Association (MNDA) has published a comprehensive guide End of life. A guide for people with motor neurone disease for people with MND to plan ahead and communicate their end of life decisions to family and professionals.