Joanne Agnelli @JoanneAgnelli and her dementia services team from Four Seasons Health Care @FourSeasonsHCUK will be leading this week’s EBN Twitter Chat (#ebnjc) on Wednesday 3rd June between 8-9pm UK time focusing on optimising palliative and end-of-life care for people in nursing homes.
Participating in the Twitter Chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward:
- Go to your Twitter account
- Follow the discussion by searching for #ebnjc once linked to the discussion, click “all tweets” to keep up-to-date with recent tweets
- Add the EBN chat hash tag (#ebnjc) to your tweets to join in, this allows everyone taking part to view your contribution
The World Health Organisation (WHO) has defined palliative care “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO, 2012). Globally, it is estimated that every year over 20 million people will require palliative care at the end of life. Importantly 69% are adults over 60 years old, highlighting the majority of palliative care needs dominate in the older age group, with cardiovascular diseases, cancer, chronic obstructive pulmonary disease and dementias among the conditions that carry the burden of end of life palliative care (WHO, 2012). Importantly palliative care differs from end-of-life care which is used to describe care for those who are approaching death, usually within the last 6 months, with a key goal being to make the person comfortable and attend to their needs and wishes as the end of their life approaches (Kelly and Innes, 2010). In other words palliative care should begin when disease prognosis is no longer curable and end-of-life care, a continuation of the former, should commence when the disease has advanced sufficiently and death is near (Mitchell et al, 2015).
Care Home Context
In the UK there are over 17,500 care homes that provide long-term care to approximately 500,000 people. Of these 500,000 people it is estimated that around 80% of these may have dementia (Alzheimer’s Society, 2013). Unfortunately current evidence suggests that the quality of care provided to dying residents in care homes is often inadequate (Brazil et al, 2012). Examples of these inadequacies may include:
– Poor Pain Management
– Not commencing or maintaining advanced care plans
– Inappropriate or unnecessary hospitalisation at end of life
– Limited bereavement support for care partners
– Vast educational gaps in relation to palliative care outside of a cancer setting
– Inability to differentiate between palliative care and end of life care
Perhaps the strongest rationale for inadequate provision of palliative care in a care home setting is due to deficits in knowledge of nursing staff. In short, palliative care is still associated mostly with people who are living with cancer even though it is applicable to all incurable conditions like dementia, COPD and heart failure. These conditions form the bulk of incurable conditions that residents live with in a care home setting. This is important to note as access to palliative care is considered as a legal obligation by the United Nations Conventions as well as a basic human right (EAPC, 2013).
Care Home Admission
Ideally the process of palliative care begins upon diagnosis of incurable illness. Unfortunately this is seldom the case in practice with care home nurses then being responsible for commencing appropriate palliative care, sometimes once the person has already lived with the condition for some time. It is therefore optimum practice to commence palliative and end-of-life discussions as soon as a person with incurable disease enters a care home setting. This is best operationalised through provision of an advance care plan (Mitchell et al, 2015).
Advance Care Planning
Advance care planning has been described as the “voluntary process of discussion and review to help an individual with a progressive condition who has capacity to choose to set on record choices about their care and treatment – including the circumstances in which they want to refuse a treatment – in the event that they lose capacity to make these decisions once their illness progresses. These plans can then be referred to by those responsible for their care or treatment” (Moriarty et al. 2012).
Currently there is a plethora of literature to suggest that care partners of people who experience end of life care have a number of unmet needs. These include:
– Lack of awareness that the resident was “actively dying”.
– Guilt about decisions that were made in the last few weeks of life (i.e. about artificial hydration, pain relief, do not attempt CPR, hospital admission, antibiotics etc.) This guilt is almost always occurs because the care partner was forced into rushed decisions.
– Limited bereavement support or appropriate referral. Palliative care should continue after death to include psychological care of the care partner.
Questions for consideration:
- Do definitions of palliative and end-of-life care really matter?
- What are the key challenges for delivery of palliative care within a care home setting?
- What sort of information might be included within an advanced care plan?
- When does end-of-life care technically start?
- What are the key areas to consider in relation to symptom management at the end-of-life?
Alzheimer’s Society (2013) Low expectations: Attitudes on choice, care and community for people with dementia in care homes. Executive Summary. London: Alzheimer’s Society.
Brazil, K. et al. (2012) ‘Knowledge and perceived competence among nurses caring for the dying in long-term care homes’, International Journal of Palliative Nursing, 18, (2), pp. 77-83.
European Association for Palliative Care (2013) Palliative care: A human right. International Association for Hospice and Palliative Care: EAPC Prague Charter.
Kelly, F. and Innes, A. (2010) End of life care for people with dementia: A best practice guide. Stirling: Dementia Services Development Centre.
Mitchell, G., Agnelli, J., McGreevy, J., Diamond, M., Roble, H., McShane, E., Strain, J. (2015) ‘Optimising palliative and end of life care for people living with dementia in care home settings’, Nursing Standard, in press.
Moriarty, J. et al. (2012) End of life care for people with dementia living in care home. Social Care Institute for Excellence.
World Health Organisation (WHO) (2012) WHO definition of palliative care. WHO: Geneva
Gary Mitchell is a dementia care advisor for Four Seasons Health Care & Associate Editor of Evidence Based Nursing @GaryMitchellRN
Joanne Agnelli is a dementia services and quality manager for Four Seasons Health Care @JoanneAgnelli
Monica Diamond is a dementia care advisor for Four Seasons Health Care @Momodiamond1
Jessie McGreevy is a dementia care trainer for Four Seasons Health Care @McgreevyJessie
Herlindina Roble is a dementia care trainer for Four Seasons Health Care @Herlindina