Jacinta Kelly, Clinical Nurse Specialist, Community Palliative Care Team, North West Hospice, Sligo, and Dympna O’Connell, Lecturer, Department of Nursing at St Angela’s College, Sligo, Ireland, explain the background to their longer article published in the January/February issue of the European Journal of Palliative Care.
Many challenges face healthcare professionals in providing a palliative care approach to patients with dementia. Hindmarch (2012) outlines some of these as ethnicity, geographical location, cultural beliefs and attitudes around death and dying. Over the last number of years there has been an increasing demand for specialist palliative care (SPC) services for people with dementia and it begs the question – does everyone who is dying with dementia need specialist palliative care services?
We suggest no, but how do we differentiate those who do? I (Jacinta) have worked as a nurse in specialist palliative care for 14 years. I do not consider myself as a specialist in dementia care, but I am a specialist in palliative care. The opposite can be said for HCPs (healthcare professionals) working within dementia care. They are specialists in dementia care but not in palliative care. We suggest what is needed is a collaborative approach between these two areas of expertise.
We invite you to consider this scenario: two patients are in an acute hospital and both are approaching the end of their life. Patient A has a cancer diagnosis and patient B has a dementia diagnosis. The symptoms they experience at the end of their life are very similar and the emotional impact of the loss on their loved ones similarly distressing. Both patients and their families deserve equal access to SPC services, where a focus is placed on symptom control, comfort and a peaceful death. Another key question is – how do healthcare professionals working in generalist settings know when they have reached a point where they need to refer to SPC services?
In the Republic of Ireland, the National Clinical Care Programme for Palliative Care (Health Service Executive, 2016) developed eligibility criteria for people with a malignant or a non-malignant diagnosis for access to and discharge from SPC services. While these criteria are beneficial, HCPs in this study were either not aware of their availability or felt they were too generic in focus and need to be more specific in their guidance in relation to non-malignant diseases such as dementia. While SPC services have a role in caring for non-cancer patients, with this role comes an increasing demand for these services; and Fisher (2006) raises concerns regarding the impact of increased referral rates and their potential to overwhelm and dilute existing SPC services.
This study explored the dementia patient’s journey through SPC services from the perspective of healthcare professionals. We hope that the findings from the study will encourage further debate from both HCPs working in dementia care and specialist palliative care settings.
References and links
Hindmarch, J. (2012) Nurse leaders have the vision and the expertise to widen access to palliative and end of life care. International Journal of Palliative Nursing. 18(11), 531-533.
Health Service Executive National Clinical Programme for Palliative Care. March 2016. Accessed January 2018.
Fisher, K (2006) Specialist palliative care for patients with non-cancer diagnosis. Nursing Standard. 21(4), 44-47.
This post relates to ‘An Evaluation of the Dementia Patient’s Journey through the Specialist Palliative Care Service (SPC) – Healthcare Professionals’ Experiences’ by Jacinta Kelly and Dympna O’Connell published in the January/February edition of the European Journal of Palliative Care (EJPC) (vol. 25 (1).
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Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.
Look out for Part Two of this article, ‘An Evaluation of the Dementia Patient’s Journey through the Specialist Palliative Care Service (SPC). Part 2 – Carers Experiences’ in the March/April issue of the European Journal of Palliative Care.