Talking about dying

Death and dying is a universal phenomenon. However, how we wish to be cared for in our last phase of life is very individual and can vary widely depending on personal and cultural background. Some may have a strong preference regarding place of care, important spiritual considerations or, as one of my patients recently said to me, maximising the time she had with her beloved pup. My speech therapist wife is well aware of my own preference to feed at risk in the event of future swallowing issues to ensure that I can still have my daily flat white!

Advance care planning (ACP) is a voluntary and dynamic process which encourages thinking about, discussing and, crucially, recording these important preferences for future care in a shareable format. This allows clinicians to provide appropriate care in the event that a person is unable to communicate their wishes in the future. Personalised care and support planning, of which ACP is a significant component part, was highlighted as one of five key priorities in the 2019 NHS Long Term Plan. While planned to become business as usual by 2024, there is still a lot of work to be done to ensure the provision of personalised end of life care for the older people that we care for.

When I started my Transforming End of Life Care fellow job at UCLH, my mother-in-law, having recently been the main carer for her 93 year old father in his last months of life, set out her vision for what I needed to “fix” in order to improve the end of life care provided for older people. At the top of this list was helping older people, and their loved ones, to talk about death, dying and what their priorities would be at this time. Despite having a close and loving relationship with her dad, they had never been able to fully broach these important topics in the years, months and days leading up to his death. The care she provided for her father at home in his final weeks of life was, from my clinical viewpoint, excellent. However she still worries that she didn’t know exactly what was most important to her dad because of the difficulties broaching these subjects.

My mother-in-law’s story is unfortunately something I commonly encounter in my day-to-day practice. Evidence suggests that the majority of people want to talk about what is important to them in their future care, but are waiting for healthcare professionals to address the subject.¹ On the other hand, healthcare professionals, burdened with heavy workloads and anxious that acknowledging the risk of dying may accelerate the process, often avoid these questions until it’s too late. This disconnect often results in the provision of unwanted or ineffective hospital admissions, investigations and treatments in the final phases of life, robbing dying people of personalised end of life care and often leaving loved ones wondering whether they’d done the right thing.

While it can be difficult to measure, ACP has many intuitive benefits, empowering individuals with a sense of control of their own health, reassuring loved ones that care is provided in accordance with an individual’s wishes and fostering stronger relationships between healthcare professionals and patients. As clinicians, knowing that you are providing care which respects a person’s wants and needs is hugely satisfying, and can help to reduce compassion fatigue and burnout.

As many as 1 in 3 hospital in-patients may be in their last year of life and this proportion increases with age and levels of frailty.² We know that around 50% of people with severe frailty will be in their last 12 months of life³ and yet rates of ACP discussion remain low.^{1, 4} As geriatricians, operating across both the acute and community setting, we are uniquely placed to identify those older people likely to benefit from ACP, introduce these discussions and ensure that this process remains dynamic in the community.

We all want personalised, high-quality care at the end of life, be that for ourselves, our loved ones, or our patients. This 8^th May 2024 will be the inaugural national Advance Care Planning Day and I would urge BGS members to consider advance care planning as a core part of their Comprehensive Geriatric Assessment, to ensure we support older people to both live and die well.

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