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Truth telling and palliative care - Part 1 |
At the National Palliative Care conference in September this year, there was an interesting presentation by Professor Lesley Fallowfield, Professor of Psycho-Oncology, University of Sussex UK, titled ‘Truth Hurts but Deception Hurts More’. The paper was an exploration into the information needs of patients and health care professionals’ interpretation of the information needs of the patient. It was discussed that health care professionals often censor their information giving to patients in an attempt to protect them from potentially hurtful, sad or bad news. This desire to shield patients from the reality of their situation usually creates even greater difficulty for patients, their relatives and friends, and other members of the health care team.
In a recent paper by Bruera, Palliative Medicine 2000, the attitudes and beliefs of palliative care specialists towards communication with the terminally ill were examined via a postal survey in Europe, South America and Canada. Although all physicians said they would like to be told the truth about their own terminal illness, only 93% of Canadian physicians, 26% of European and 18% of South American physicians thought that the majority of their patients would wish to know. There were similar major differences in terms of attitudes towards discussing these issues with relatives.
In the British Journal of Cancer 2001 Jenkins et al examine the information preferences of a heterogeneous sample of 2331 patients with cancer in the UK. Table 1 shows the latest updated results from the original study, which now includes 2809 patients (from personal correspondence). Table 2 further breaks this down into specific information preferences.
Some reasons why health care professionals may not wish to communicate openly are:
The patient will ask if they wish to know.
However the patient may assume the doctors will tell them everything, the patient may be too scared to ask and the patient may try to make it easier for the doctor and therefore not ask questions.
The patient will experience unnecessary distress.
Studies show that more psychological harm accrues from evasion or lies than sensitive, honest disclosure. Ambiguity leaves patients confused and is a source of distress in itself.
The patient will lose hope.
If hope is centred solely around cure, then this may well prevent the patients’ energies being directed toward achievable goals, and may encourage physically weak patients towards futile therapies.
Patients will not enjoy the time left.
I was once referred a patient by an oncologist who told me he would have referred the patient earlier but he wanted her to enjoy Christmas!
It is difficult to predict prognosis and outcomes.
There is difficulty in prognostication, which has been the subject of much discussion in the last few years. There is therefore fear of misleading patients or giving them false information. Despite this, “How long has he got doctor?” is one of the most frequently asked questions on the palliative care ward and one that takes much skillful communication.
Health care professionals' own lack of confidence/comfort in disclosing bad news.
In one study the views of patients about their doctors when breaking bad news divided doctors into six categories:
- The inexperienced messenger
- The emotionally burdened
- The rough-and-ready expert
- The benevolent but tactless expert
- The distanced doctor
- The empathic professional.
Summary
There is little evidence supporting the contention that terminally ill patients, who have not been told the truth of their situation, die happily in blissful ignorance. The dying person witnesses their deteriorating body, fatigue and reduction in ability to function.
Concealment of the truth is rarely achievable as relatives, friends and health care professionals find it hard not to give out non-verbal clues as to what is happening. There is evidence to support that honest communication is what the majority of patients want and expect. Patients need to plan and make decisions about the place of death, put their affairs in order, say good-byes or forgive old adversaries, and be protected from embarking on futile therapies.
The next article will discuss breaking bad news.
Any comments, queries or request for full references contact Dr Joanne Doran, Northern Rivers Area Health Service medical director of PC, jdoran@nor.com.au
December 2001
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