Advanced Respiratory Disease

Role of palliative care in the management of advanced respiratory disease

People with advanced respiratory diseases like chronic obstructive pulmonary disease (COPD), chronic bronchitis, emphysema and pulmonary fibrosis can 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 is also important to offer a care approach that will address overall comfort and relief. In 2008 as part of the Palliative Care for All Programme, Irish Hospice Foundation and the Health Service Executive published a report entitled Palliative Care for All: Integrating Palliative Care into Disease Management Frameworks. The report outlined the rationale and benefits of palliative care for people living and dying with illness such as advanced respiratory disease. A number of disease-specific action research projects were initiated including one on the area of advanced respiratory disease.

Action Research Project: Advanced Respiratory Disease and Palliative Care

Research sites: St. James’s Hospital, Our Lady’s Hospice and the Liberties Primary Care Team (all in Dublin) The project ran from 2010-12. It aimed to devise, implement and evaluate appropriate palliative care responses for people with advanced respiratory disease using an ‘action research’  methodology. The care responses developed included; multidisciplinary meetings involving professionals from palliative care and respiratory care, development of a care pathway, support and education for staff and enhanced access to specialist palliative care in the community and in hospice. The summary report and care pathway can be accesses by clicking on them below.
COPD summary report

Click to access report

COPD Care pathway
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Click to access pathway

                   

Dissemination & further work

We are happy to support dissemination and adoption of the learning from this project.  Please contact Marie Lynch if you would like to discuss this. Future plans include:
    • dissemination of the project findings through relevant policy and professional groups
    • supporting introduction of a palliative care approach to the management of advanced respiratory disease in all care settings
    • ensuring such an approach is part of the HSE's  Clinical Care Programme for COPD
    • Irish Hospice Foundation in partnership with The Cystic Fibrosis Association of Ireland, will continue to work to integrate palliative care into the overall care of people with cystic fibrosis
    • The Irish Hospice Foundation are currently working with COPD Support Ireland and its members to produce an information booklet about planning for the future with COPD.

Other work / Information

  • The Irish Hospice Foundation in conjunction with the Cystic Fibrosis Association of Ireland developed a discussion paper on end of life care for people with Cystic Fibrosis and it is available here.
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