Views from the frontline: ‘States “worse than death” – how can the medical team ensure patients aren’t taken there?’

6 December 2016

Discussions about what happens at the end of life are too significant to be put in the “now isn’t a good time” box. After all, what can be more important than spending your latter days with dignity and in accordance with your personally held beliefs? This is exactly the sort of outcome-based measure the Care Quality Commission should consider when evaluating patient care. In the context of a limited-resource healthcare system and an ever-growing elderly population, the issue of aligning resources to what is truly benefiting patients is paramount.

In a recent study, patients with advanced medical conditions identified states of living which they considered to be “worse than death”. The concept is an interesting one as much of medical practice inherently assumes that life and maintaining life is the goal. Yet on questioning, 60% of respondents rated incontinence, bedbound state, and ventilator dependence as “equal to”, or “worse than” death.

This begs the question, are we aiming for the wrong goals? And, how can clinicians ensure that their targets are aligned with those of the patient on this most important of journeys? Currently that dialogue and public health awareness are woefully lacking.

“Have you ever thought about how you’d like to be cared for if you were to become very unwell?” I ask this question most days as a doctor on an elderly care ward. The majority of my patients will say “no”. Elderly patients have all suffered loss and seen contemporaries become unwell. Wills have been written and funerals planned but how those later years are to be lived has escaped proper attention.

Partly to blame is the pace of life in the healthcare setting. A familiar grumble when patients with known terminal illness are admitted extremely unwell to hospital is why the hospital specialist or GP has not raised this issue with them before. But I have experienced the over-booked specialist clinic or GP surgery where bad news has been broken and there is barely time to ensure the diagnosis has been comprehended. And the follow-up appointment? If the news is relatively good, “end of life” discussions give mixed messages; if the news is bad, there is again only space to address the immediate concerns.

There is much taboo around the subject. Many families haven’t had discussions with their loved ones regarding what they hope for in their later days. Where they would like to be cared for; how much medical intervention they want; whether they want to keep coming in and out of hospital and what constitutes ‘life worth living’. This is often only addressed when the decision making has become critical by which time individuals may no longer be able to participate in the conversation themselves. Expecting family members to make considered decisions at this time is unrealistic.

“End of life care” objectives have long been incorporated in NHS guidelines. In 2015, suggestions that primary care based discussions be instigated for those over 75 and younger patients with life shortening conditions were met with resistance. However, this kind of advanced discussion is precisely what is needed. It will be time-intensive with face-to-face consultations led by appropriately specialised healthcare professionals. Follow-up and ongoing review will be required. Given adequate resource, colleagues in palliative care offer just the sort of expertise and sensitive approach that is needed. Initiating a pre-emptive approach and creating a culture in which later life care is actively addressed will result in savings for all involved.

Dr E Kedgley, Clinical Fellow, London

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