The American Thoracic Society (ATS) and the European Respiratory Society (ERS) produced joint COPD guidelines in 2004 which highlight that patients with advanced COPD may benefit from integrating palliative care into routine care [70]. The ATS/ERS statement on Pulmonary Rehabilitation in 2006 states that Pulmonary Rehabilitation programmes provide an opportunity to assist in advance care planning and end-of-life education [115]. More recently the ATS has produced an official clinical policy statement endorsing the concept that non-specialist and specialist palliative care should be available to patients at all stages of illness and recommending that respiratory clinicians should have basic competencies in palliative care and should consult with their SPC colleagues where the situation demands it [71]. In the UK, both the NICE guidelines on COPD and the Welsh Assembly consultative document on palliative care commissioning state that people with COPD should have full access to multidisciplinary palliative care services. To date it has been difficult to determine the impact this has had on access to services [97, 116]. Dementia
Reports from the UK and Australia provide guidance and direction as to the role and potential utility of palliative care interventions for people with advanced dementia [51, 117]. The UK NICE guidelines on supporting people with dementia and their carers state that dementia care should incorporate non- specialist palliative care from the time of diagnosis until death [98]. It has been recognised that palliative care fits well with the philosophy of person-centred dementia care, however more education and joint collaboration is needed for staff in dementia services to meet the palliative care needs of people with dementia [118]. A Scottish study which investigated whether the palliative care needs of people with end- stage dementia were being met identified very significant gaps [119]. An action learning educational project has been developed for both carers and relatives to address the needs identified in this study and to embed palliative care practices in the workplace. Evaluation of the study is due early in 2009 [120]. The guidelines being prepared by Alzheimer Europe on end-of-life care for people with dementia will also support future developments and direction in this area [121].
Heart Failure
Palliative care for people with heart failure has been a feature of UK health policy since 2000 and the 2003 NICE guidelines on the management of heart failure contain a section on end-of-life issues including the recommendation that palliative care should be part of the holistic management of heart failure from within the heart failure team [96, 122]. The European Society of Cardiology (ESC) 2005 guidelines on the treatment of heart failure recommend consideration of palliative treatment in patients who are at the end-stage of their disease [57]. The 2008 ESC guidelines recommend that patients with the clinical
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features of advanced heart failure who have a poor short term prognosis and who continue to experience symptoms despite optimal therapy should be considered for a structured palliative care approach, including addressing psychological symptoms. The guidelines encourage a collaborative or shared care approach between cardiologists and SPC to address the palliative care needs of such patients and suggest that the essential elements of a palliative care programme are similar to those of comprehensive heart failure management programmes [123]. The Heart Failure Society of America has an end-of-life section in its 2006 Practice Guidelines which asserts that palliative care can and should be delivered concurrently with active or disease-modifying therapies [124]. Both the American College of Cardiology and the American Heart Association recommend non-specialist palliative care for end-stage heart failure patients with specialist palliative care input where appropriate [125]. Similar recommendations are to be found in clinical guidelines from Australia and New Zealand [126].
3.8 KEY POINTS
• For the past decade international health policy has acknowledged that both specialist and non-specialist palliative care should be available to people with diseases other than cancer.
• Several countries have comprehensive disease-specific guidelines which highlight the role of non- specialist palliative care for patients with non-malignant diseases. End-of-life strategies and coalitions have emerged as a means of implementing specific service responses to support people in the final phase of their illness, regardless of their diagnosis, and these strategies are supported by education and training initiatives. Medical education in palliative and end-of-life care is now compulsory in parts of the USA and Canada.
• Irish health policy has committed to the inclusion of palliative care for all people in all settings since 2001 and encouraged the development of integrated care and referral guidelines to assist in the integration of SPC teams with primary care teams, and support the development of non-specialist palliative care.
• The HSE have acknowledged that services for people with life-limiting, non-malignant diseases have been under-developed to date, however initiatives under the Transformation Programme have given a commitment to consider the role of palliative care for people with heart failure, dementia and COPD.
• Recent initiatives in palliative care education in Ireland signpost commitment to address the current deficits in palliative care education for people with life-limiting diseases.
• In 2001 it was reported that extending access to SPC for people with diseases other than cancer will increase the demand for SPC in Ireland by up to 80%. In 2005 it was reported that non-malignant activity will represent 25% of total SPC caseload. This subject will be further examined in Chapter 5.
• There is a need for further development of monitoring or governance systems to ensure that equal access to SPC is introduced in Ireland ensuring that such services are based on need rather than diagnosis, as a small number of Irish SPC services still direct their services solely to people with cancer, MND, HIV and AIDS [7, 127].
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