David Oliver: End of life care in hospital is everyone’s business
BMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i3888 (Published 14 July 2016) Cite this as: BMJ 2016;354:i3888
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I agree with Oliver that there is a lack of spiritual care in hospital for patients and their loved ones at the end of life. Good spiritual care and end of life discussion has been shown to reduce unnecessary aggressive treatment (1), Possible solutions include a clinical assessment of spirituality to help address the spiritual domain, plan referrals and ultimately strengthen the patient-physician relationship (2) and offering open discussions and sharing on spirituality and religion and facilitating contacts with religious groups (3).
A useful model which doctors might adopt when caring for their patients near the end of life is the physician as the generalist and the chaplain as the specialist in spiritual care (4).
References
1. Balboni T, Balboni M, Enzinger,et al (2013). Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA Internal Medicine, 173 (12): 1109-1117.
2. Frick E, Reidner C, Fegg M.J. et al (2006). A clinical interview assessing cancer patients' spiritual needs and preferences. European Journal of Cancer Care, Volume 15, Issue 3, 238-243.
3. Leow M.Q, Chan M.F, Chan S.W. (2014). Predictors of change in quality of life of family caregivers of patients near the end of life with advanced cancer. Cancer Nursing, Volume 37, Issue 5, 391-400.
4. Handzo G, Koenig H.G. (2004) "Spiritual care: whose job is it anyway? Southern Medical Journal, 1242+ Academic OneFile, Web 23.
Competing interests: No competing interests
Life is metabolism. This means that all living organisms must breathe, drink, eat, and expel waste. This includes us!
These facts are so obvious, that we all tend to ignore them. That's what happened with me. In my quest for health, I looked into all sorts of esoteric sciences with panoplies of pills and potions, but I never looked in my pantry or refrigerator. Eventually, I realized that my hunger for healing, and thirst for knowledge, were just plain hunger and thirst.
Have you ever noticed that the more educated you become, the less common sense you have? This is the problem with most doctors. They're so pedantic and frantic with misery and mystery, that they forget about food and the metabolic imperatives of hunger and thirst. Ironically, many doctors have bad diets, and most hospital food is cheap and ugh!
We all need more common sense. Since life is metabolism, we should optimize our air, water, and food, by seeking clean air, pure water, and organic food. Also, we should avoid toxins and addictions, because they reduce metabolic efficiency, impair health, and cause sickness. In short, your hunger and thirst come first, but shun toxins and addictions.
Competing interests: No competing interests
I am pleased to see that Dr Oliver writes in his article 'These included patients or loved ones discussing their own concerns and choices'. Because a lot of end-of-life guidance written by clinicians, seems to avoid describing patients expressing their clear choices - which I think should be more clearly worded as decisions or instructions - and instead typically mentions 'the patient's wishes and preferences'. The word 'wishes' is not appropriate when describing a decision: I can decide to take an umbrella with me in case it rains, and I can wish it doesn't rain'. And 'preferences' is better used in connection with things which are less clear than decisions: 'I never eat oranges, and I often have a preference for pears over apples'.
The thing that really bothers me about this, is the contemporary promotion of 'advance statements' from patients, instead of the promotion of the much more helpful Advance Decisions (I discuss this in ref 1). The point being that if the patient loses mental capacity, and there is a decision to be made, a clear decision previously expressed by the patient should be followed, but 'patient preferences' are merely things which a best-interests decision-maker would need to be considering: and best-interests decision-making is a fraught and complex process, best avoided if at all possible.
There might be something going on with the way people use words, which further clouds this issue. I recently asked on a Facebook page 'Are – and I'm not being sexist, nor am I trying to start a discussion of 'why this might be true, if it is true' – women, when describing their definite refusal of something, more likely than men to say 'I wish to' or 'I would prefer' instead of 'I've decided to' ?'.
Fundamentally (ref 2) you need to get the words right, or else you risk confusing informed consent with best-interests decision-making.
Ref 1 http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj...
Ref 2 http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj...
Competing interests: No competing interests
A Volley against Lengthy Guidance
I sent an e-mail to Dr Oliver, observing that he had described ‘Once chance to get it right’ as a campaign in his article. David’s perfectly reasonable reply was that his piece was restricted to just a few hundred words.
But his short article (which I think summarises the situation very well indeed), does include 12 references as back up: among those reference 5 is about 50 pages, reference 8 is over 160 pages, and reference 12 is over 40 pages long.
I honestly think that this ‘is the face of a problem’, and apparently a problem beyond solution. If ‘One chance’ is seen as being part of a campaign, then the campaign is to achieve improved end-of-life care for all terminal patients, wherever they end up dying: an admirable objective, which I wholeheartedly support. But how many people are able to read through and digest hundreds of pages of ‘advice’, which contains many terms with specialised, and not necessarily obvious, meanings attached to them: there is not even agreement about the meaning of ‘end-of-life’, and I myself only like ‘palliative’ if it simply means ‘non curative’ whereas palliative care clinicians have got a much more complex understanding of the word.
If you try to keep ‘advice’ short and to use demotic language (which, by using ‘demotic’, I am clearly not doing here !), then ‘the instruction within’ is often open to too many differing interpretations – but try and fill-in the detail, and instead of ‘being helpful for the people who need help understanding the topic’ you frequently seem to end up with incredibly lengthy documents which are only properly understood (and are often criticised by) those people who would not need to read them.
As I’ve said, this vexes me, but I can’t see a solution: I often write ‘because the Mental Capacity Act must logically be understandable to lay attorneys who are neither clinicians nor lawyers, then surely it must be possible to explain MCA best-interests decision-making in everyday language: but I repeatedly fail, in my attempts to do that !’.
And I know I’ve drifted somewhat off-topic, but you could argue that there is a link between the issue I’ve written about, and the ‘getting the basics right ‘ objective of Dr Oliver’s closing sentence.
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