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BMJ. Apr 28, 2001; 322(7293): 1062.
PMCID: PMC1120197

Collusion in doctor-patient communication

Patients rarely regret optimism
Noelle O'Rourke, consultant in clinical oncology
Ann Barrett, professor of radiation oncology
Richard Jones, consultant in clinical oncology
Carrie Featherstone, registrar in clinical oncology
Vivienne Hughes, registrar in clinical oncology

Editor—Imminent death is not the inevitable consequence of a diagnosis of small cell lung cancer, as The et al say in their paper.1 They are wrong in saying that life expectancy is a maximum of two years. A recent analysis of patients on the National Cancer Institute's database showed a five year survival of 12.2% in patients with limited stage disease.2 Remission and prolonged survival can be achieved only by active treatment with chemotherapy and radiation, and yet The et al report that patients familiar with the plight of incurable cancer refused treatment. This will certainly have compromised the survival of those patients, and yet it seems that The et al are advocating that all patients should be similarly persuaded of the hopelessness of their situation.

It remains true, however, that most patients will die of their disease within two years, but we believe that the false optimism that is reported is not a problem that needs to be overcome. It is a common coping strategy adopted by patients who, as The et al describe, often do know but cope by putting on the appearance of not knowing their prognosis. This allows them to lead their lives as fully as possible. It is not helpful and certainly not compassionate to insist that patients openly acknowledge their poor outlook. The et al describe a consultation in which the patient has to resort to pleading, “Please doctor, will you stop it?”

The et al conclude that most patients regret maintaining optimism. They quote only one anecdote to support this. Our experience suggests the opposite: that patients and their families rarely regret their period of optimism as this allows them to go on holiday and make plans, which they would not be motivated to do if they were waiting to die. For any patient faced with life threatening disease, it is hope and the triumph of optimism over reality which makes life bearable. It is wrong to suggest that this optimism needs to be taken away from patients for their own good.

References

1. The A-M, Hak T, Koeter G, van der Wal G. Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ. 2000;321:1376–1381. . (2 December.) [PMC free article] [PubMed]
2. Janne PA, Freidlin B, Saxman S, Johnson BE. The survival of patients treated for limited stage small cell lung cancer has increased during the past 20 years. Lung Cancer. 2000;29(S1):314.
Apr 28, 2001; 322(7293): 1062.

Specialist palliative care staff could act as treatment brokers

David Jeffrey, Macmillan lead consultant palliative care

Editor—The et al in their paper describe the generation of false optimism about recovery and its ultimate cost to patients with small cell lung cancer and their relatives in terms of regrets and unfinished business.1-1 The stories told in this study will be familiar to all those concerned with caring for patients with advanced cancer, whether in hospital or in the community.1-2 Breaking the cycle of collusion is difficult, because , as The et al acknowledge, awareness cannot be forced on the patient: it can only be supported. They suggest a solution to the problem may be the involvement of “treatment brokers” acting outside the doctor-patient relationship.

In the United Kingdom members of specialist palliative teams can act as such brokers if they are involved at any early stage in the illness. Oncologists may be perceived as activists, and patients may collude with them to confine discussion to treatment plans. The participation of specialist palliative care doctors or nurses in joint consultations with oncologists would give patients an opportunity to pause and assimilate the seriousness of the bad news, and a chance to come to terms with the reality of their situation. They would thus be better equipped to make informed decisions about their future care.

References

1-1. The A-M, Hak T, Koeter G, van der Wal G. Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ. 2000;321:1376–1381. . (2 December.) [PMC free article] [PubMed]
1-2. Jeffrey D. Cancer, from cure to care. Manchester: Hochland and Hochland; 2000.
Apr 28, 2001; 322(7293): 1062.

Knowing is not always best

Tom Ball, fifth year medical student

Editor—The study by The et al of approaches to death is an important advance, but its assumption should be questioned—namely, that it is usually in patients' best interests to know in full, at an early stage, about the likely time and mode of their death.2-1 Patients' and doctors' supposedly harmful “collusion” in avoiding the issue is often therapeutic in the long as well as the short term.

When one of my close relatives was diagnosed as having late stage terminal cancer, the remaining year of her life was made much easier for her and us by the apparent hope offered by chemotherapy and the focus on the comparatively trivial day to day changes in her wellbeing. Death was not openly discussed with my family until six weeks before the end, and I for one did not feel shortchanged by having such a short time to say goodbye. I would prefer to spend six weeks dying rather than a year.

To give an extreme hypothetical example: if ever we were to gain the ability to predict well in advance our own time and mode of death exactly, who in their right mind would want to live out their life knowing that information?

And as anyone who has gone through “hypochondriacal medical student syndrome” may testify, it is not always best to be in the know.

References

2-1. The AM, Hak T, Koeter G, van der Wal G. Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ. 2000;321:1376–1381. . (2 December.) [PMC free article] [PubMed]
Apr 28, 2001; 322(7293): 1062.

Doctors should adopt patient's perspective

Kitty McCague, journalist

Editor—As a so called survivor of cancer I welcome the paper by The et al examining doctor-patient communication on imminent death.3-1 Like others, I am quite angry about the lack of honesty I see in oncology; does the pronouncement of “you have cancer” give the oncologist the right to present information to a patient in a way that controls treatment decisions by patients? I certainly believe that that is what happened in my case, and I have watched countless others misled into false hope, often given chemotherapy until they die. These people become tied into this treatment plan and spend their last months and days in medical facilities instead of living their lives.

The et al did not, however, mention the enormous pressure that healthcare providers, families, and society in general put on patients with cancer to have treatment, even in the face of certain death; we are made to feel guilty on many levels if we do not comply with the oncologist's suggestions. Many patients are really not making informed decisions if doctors provide only enough information to insure patients have life altering treatments that are often not fully explained. That sliver of hope becomes a giant expectation of survival on the part of the patient and family.

If my cancer returns, which is probable as I have advanced breast cancer with nodal involvement, I will stay as far away from oncologists as possible and live my life to the fullest. I am saddened when I see people tied into treatment even if it does give them a few more months because most of them do believe, as The et al pointed out, that by undergoing treatment there is still hope, even when there is none. Those working in oncology need to take a look at their specialty and ask for whose benefit the treatment is—the patient's or the doctor's. So many times it is about the doctor and his or her ego and what he or she thinks is right instead of what the patient really wants. What arrogance.

References

3-1. The AM, Hak T, Koeter G, van der Wal G. Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ. 2000;321:1376–1381. . (2 December.) [PMC free article] [PubMed]

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