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OPINION

We need to talk about the 'D' word...

Yup. The ‘D’ word. The one word that as a nation we are not good at discussing.

Dying.

‘There are only two certainties in life: death, and taxes’ spaketh Benjamin Franklin.

And whilst everyone will talk forever about taxes, money and a multitude of other topics, death remains, for many, a taboo subject.

I remember during my training that no-one wanted to broach the death section on the admission forms with patients. It was seen as morbid - bringing a negative connotation to the patient’s admission to hospital and we did not want to upset the patient. However, it is often the health professional that feels uncomfortable broaching the subject, projecting their own discomfort with the conversation onto the patient.

In my first job I witnessed a doctor who just could not bring himself to tell a patient’s relatives that he was in the final stages of life. He could not say the word ‘dying’. It was stunning to watch. The patient was in end-stage cancer. He had developed a secondary infection. He was dying. And he did, two days later. But the doctor could not bring himself to say it.

So why? What is the problem? Why are we reluctant to talk about a part of life which is both inevitable and universal?

Patients may need someone else to bring up the subject due to their own worries or because they themselves are struggling with the concept of their own mortality.

I would hold that it is important to ascertain a patient’s thoughts and wishes re. death and dying so that if - perhaps unexpectedly - the worst happens, then their wishes would be known. This has become even more pertinent - most recently with regard to organ donation. It has been highlighted that, as a country, we have some of the worst statistics for organ donation. Relatives often decline - despite the wishes of patients. Potential donors are not being ‘spotted’ in areas other than ITU as it simply isn’t discussed.

Perhaps, for all - the living, the dying and the patients living with organ failure - we as a nation need to face our collective fears and reservations about talking about death and dying.

And just maybe, along with final wishes being met and a better understanding within families achieved, we may save a few more lives.

Vera Tunstall is a community nurse.

Readers' comments (7)

  • michael stone

    Not actually discussing 'the death bit' is hugely problematical in designing and enforcing 'sensible and balanced' EoL behaviour, especially when dying patients are at home and wish to die there.

    I don't think this is about 'saving a few more lives' (organ donations excepted) - it is about allowing dying patients to have control over their own deaths, and not making those deaths more 'damaging' in terms of long-term 'mental effects/memories' for bereaved 'loved ones'.

    Nobody likes talking about dying, except perhaps for people who are desperate to die - but a level of discussion which is adequate to elicit the patient's decisions, is necessary if you want to avoid 'bad decision-making'.

    It takes pages and pages to dissect the complications of EoLC at home, and discussing the issues with the people who actually die, and the loved ones they leave behind, is a necessary first step !

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  • Issues have to be introduced into our culture for them to be accepted as a norm. If discussions about death, organ donation and our wishes surrounding them become part of routine discussions on entering hospital or a GP surgery they may be accepted as a perfectly normal part of the proceedings. the question is finding ways of introducing this into our societal norms.

    Every culture, even across small geographical areas such as Europe, or other artificial divides such as religion, etc. has different sets of rules, norms, values and beliefs which can change or be changed over time. What is deemed acceptable practice in one may be tabu and unacceptable in another.

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  • You may be interested in my book, The D-Word, Talking about Dying (Continuum Books, 2010), which gives practical guidance to relatives, friends and carers on how to open up those difficult conversations with people nearing the end of life.

    My website also contains practical information about death and dying, and end of life issues, and has a comprehensive reading list.

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  • Sue Brayne

    hello Sue, just tried to access your Website and Norton 360 indicate that it is not tested for safety. This would not put me off accessing it but it might other readers.

    Would it be worth having it tested? I do not know what it entails. But I know there is a risk to computers in opening these sites and people might choose not to. Indeed I only do so on rare occasions if it is somebody I know and trust such as yourself or information I cannot find elsewhere.

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  • michael stone

    Anonymous | 11-Feb-2012 11:54 am

    Sue Brayne | 12-Feb-2012 10:01 am

    Social norms vary, and 'practical guidance to relatives, friends and carers' is interesting, but really it is pushing doctors into raising the issue which is the answer.

    There are various bits of clinical guidance and related guidance (CPR/VoD policies) relevant to 'dying and death', but currently this is far too weak in terms of 'pushing doctors to raise the issues'. In fact, it seems that many patients and their relatives are misled into believing the patient is not actually dying, until a matter of weeks or even days until the death occurs (or never actually told at all) - you cannot tidy up your life, make sure your Will is up-to-date, that you have 'said your goodbyes', etc, in a couple fo days when you are very near to death: you need adequate tiem to prepare for your death, to prepare properly.

    The widow of a radio 4 presenter, had this experience of her husband's death:

    Nick Clark's widow was talking about his death 5 years ago, on R4's PM last November just before 6 pm. Now, amongst her points were these 2:

    1) I'm not really sure if we both wanted to be told if Nick was going to get better, or to die - but we didn't actually ask, and nobody told us - until 2 days before his death, I was told, and I don't think Nick ever was told

    2) Because we were not told earlier, we did not have a chance to 'say goodbye to each other properly'.

    His widow, who said 1) was a common experience amongst the bereaved
    spouses she had subseqqently talked to, also pointed out that 'other people who
    saw Nick a few weeks before his death, could see he was dying - but I'm not
    sure that I could see that'. She now suspects, but can't be sure, that Nick also knew he was dying by then, but never actually said that to her.

    I (Mike Stone) am told by the DH that addressing those issues is central to the DH's EoL strategy, but I disagree about why the non-discussion still happens (I claim it is because the current guidance stresses informed consent too little, and the clinical factors of dying/death too much, but the patient's experience and choices too little).

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  • michael stone

    The comment from the widow prompted some feedback to R4, and R4 briefly presented some of it, and I relayed some of the feedback to my discussion group - this one is totally unacceptable (cowardly, in my opinion):

    'One chap said a nurse told him that his brother could choose between having treatment, and suffering a long, lingering and distressing death, or no treatment and a quick death. He said the nurse, told this chap to ask his brother which the brother preferred - he didn't, because he couldn't bring himself to do it, nor could he bring himself to tell his parents what the nurse had said. The brother had treatment, and suffered a long and 'horrible' (my word) death.'

    Pushing such conversations onto an unsupported relative, who could not answer any clinical questions anyway, is completely out of order !

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  • Thanks for the advice re testing the website. It is certainly safe.

    I interviewed a number of doctors and nurses for The D-Word. They all spoke of their distress about a lack of training in talking about dying, and how few patients and relatives were prepared for what was happening.

    One palliative care nurse specialist described herself as the 'new priest at the bedside.' But said that she had learnt the hard way about how to provide the dying with what they needed.

    The papers Dr Fenwick and I wrote are aimed at medical professionals. Details of how to access them are on the website www.suebrayne.co.uk under death and dying.

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