Palliative care services, both non-specialist and specialist, should be available in all care settings, and should be a component of care between diagnosis and death, with close integration in hospital and community services [1]. However the information in earlier chapters of this report has identified that non-specialist palliative care services are under-developed within the disease-specific services and primary care in Ireland, with lack of policy direction in this area [11, 12, 22]. It is helpful to reflect where the responsibility lies for bringing about the necessary change in this area, as there are many potential conduits and inhibitors that can influence the development of access to palliative care for people with non-malignant conditions.
The report of the NACPC clarifies that the SPC team has a role with regard to the provision of advice, support, information and education updates to other health care professionals, patients and families in both acute and community settings, with a specific mention in relation to symptom control. This view is supported by several other publications, with the acknowledgment that SPC often leads research and development agendas, as well as being major providers of education in end-of-life care [24, 163]. However it is also recognised that family physicians and nurses should lead the way in instigating a palliative care approach for patients with life-limiting illness, as this approach is consistent with the holistic person-centred approach that is advocated by primary care [73, 139].
International disease-specific professional groups have also clarified their responsibility in this area. Specific leadership has been shown by the American Thoracic Society [71], European Respiratory Society [70], Alzheimer Europe [121], European Society of Cardiology [57], American College of Cardiology [125] and Heart Failure Society of America [69] in acknowledging the need to integrate appropriate levels of palliative care within routine care. Of particular relevance are the guidelines from the European Society of Cardiology which recommend that a collaborative approach between cardiologists and SPC is required to address the palliative care needs of patients with end-stage heart failure [123].
Taking account of this information, there is appears to be consensus amongst a wide body of professional groups and health service providers that they all have a role in ensuring palliative care is available to patients with life-limiting illness throughout their disease trajectory. Developing a solid bridge of communication between primary, secondary and tertiary care will enhance the ability for collaboration, support, and education, so that patients can receive a reassuring professional presence in the face of death [62, 162]. Leadership is required from all the relevant stakeholders within service delivery, education, policy and academia to ensure that the necessary steps are taken to ensure that this can be achieved.
BEREAVEMENT SUPPORT
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Bereavement support is an essential aspect of palliative care. It should begin early in the disease process, before the death of a patient and be available in all care settings. Appropriately trained staff including social workers, psychologists, nurses and professional counsellors may each play a role in bereavement support in these different settings. Although the majority of bereaved people are able to manage the grief and loss they experience with the help of family and friends, a small minority of people may require some bereavement counselling [1]. It recognised that there are three levels of bereavement support, firstly through the provision of information. The next level is more formalised support from trained volunteers or via the social work department. A very small minority of people may consider seeking more professional help [164, 165]. Implicit in these three levels of support is the use of a bereavement risk assessment, which should be used to guide discussions with individuals or families about the level of bereavement care that might be most suitable to them [1]. Bereavement services have been identified as a component of palliative and end-of-life care for people with cardiopulmonary disease and their families [166] as well as for patients with dementia and their relatives [167].45
PALLIA
TIVE CARE FOR ALL
Integrating Palliative Car
e into Disease Management Frameworks
6.6 KEY POINTS
Role and timing of palliative care
• Non-specialist palliative care should be anticipatory care which meets all dimensions of needs of a patient with a life-limiting illness.
• The provision of education, training and support measures for staff are necessary to ensure that the palliative care needs of people with diseases other than cancer are appropriately met.
Eligibility criteria
• The use of standardised eligibility criteria for access to SPC services can assist in providing clarity and equity of access for those patients with SPC needs and strengthen the identity of the SPC service. Specialist palliative care referral triggers
• Disease-specific referral triggers are to be used to assist in identifying the need for referral to SPC, and the use of such triggers should be reviewed.
Discharge criteria
• The use of discharge criteria is recommended to assist in the management to SPC services. Delivering palliative care in all care settings
• The responsibility for ensuring all levels of palliative care rests with all those involved in the management and delivery of care as well as relevant bodies within education and policy.
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PALLIA
TIVE CARE FOR ALL
Integrating Palliative Car
e into Disease Management Frameworks