Elsevier

Lung Cancer

Volume 18, Issue 1, August 1997, Pages 1-20
Lung Cancer

Do doctors know when their patients don't?: A survey of doctor–patient communication in lung cancer

https://doi.org/10.1016/S0169-5002(97)00048-2Get rights and content

Abstract

Objectives: a) To determine how much patients with recently diagnosed lung cancer know about their illness and its treatment, and b) to find out if doctors know what their patients know and what they don't. Patients and Methods: One hundred patients with recently diagnosed lung cancer, who were undergoing radiotherapy or chemotherapy, were interviewed to determine their view of their diagnosis, the extent of the cancer, the intent of treatment, and the risks and benefits of treatment. Their attending physicians' views were elicited contemporaneously, using a self-administered questionnaire. The principle outcome measure of the study was the level of agreement between the views of the patients and the doctors about the disease, the treatment, and the prognosis. Concordance between doctors' and patients' views was expressed in terms of percentage agreement, and Kappa (κ). Results: Ninety-nine percent of the patients knew that they had lung cancer. Sixty-four percent (64%) agreed with their doctor about the extent of the disease (κ=0.48). Most of those who disagreed underestimated the extent of their cancer. Seventy-two percent (72%) agreed with their doctor about the intent of treatment, (κ=0.49). Thirty-six percent (36%) agreed with their doctors about their probability of cure, (κ=0.17): most of those who disagreed systematically overestimated it. Sixty-eight patients were receiving palliative treatment. Of these, 56% agreed with their doctor about the probability of symptomatic benefit (κ=0.42), but only 14% agreed with their doctor about the probability that the treatment would prolong life (κ=0.06). Doctors frequently failed to recognize their patients' misconceptions about the intent of treatment and the prognosis. Conclusion: Many patients did not understand their situation well enough to make a truly autonomous treatment decision, and their doctors often failed to recognize this.

Introduction

It is now generally agreed that patients should play an active role in decisions about their medical care. Their right to do so is based on the ethical principle of respect for the autonomy of the individual 1, 2, and protected by the legal doctrine of informed consent 3, 4. There are also a number of other good reasons for involving patients in making medical decisions, that spring from the ethical principle of beneficence. First, the values of the individual patient often determine which treatment will do most good and least harm 5, 6, 7. Second, patients who have actively been involved in decisions about their treatment are more likely to comply with it [8]. Third, patients who have actively been involved in decisions about their care are more likely to accept the consequences of those decisions, regardless of whether the outcome of treatment turns out to be good or bad [9].

These concepts are particularly relevant to the practice of cancer medicine. Treatment today promises a chance of cure for many patients with early cancers, but sometimes only at the cost of unpleasant side effects. Patients with more advanced cancers may have less to gain from treatment, but their condition may be desperate, and they may have little to lose. In either case, the optimal treatment decision is likely to be determined by the patient's values, and it appears sensible to promote his or her active involvement in making that decision. However, if doctors are to devolve their traditional responsibility for making medical decisions to their patients, it behoves them to ensure that the patients understand the situation well enough to make reasoned decisions for themselves. To be autonomous, a decision must not only be made intentionally, and without controlling influences, but also with understanding of relevant information [1]. In order to respect their patients' autonomy, doctors, therefore, have to do more than relinquish control of decision making. They must also ensure that the patient is given, and comprehends, the relevant facts. In a previous study we found varying levels of comprehension of salient aspects of the illness in a general cancer population, but the interpretation of our results was difficult because of the diversity of the diagnoses and because patients were not all studied at the same point in the evolution of the illness [10].

The purpose of this study was to determine how well patients with lung cancer understand their illness and its treatment, and to find out if doctors recognize when their patients misunderstand their situation. Lung cancer was chosen as the focus for the study a) because it remains the largest cause of cancer deaths in our community [11], b) because doctors themselves often disagree about how lung cancer should be treated 9, 12, 13, 14, and c) because patient involvement in decisions about the management of lung cancer has been widely advocated [15].

Section snippets

Design

In this prospective study, the doctor's views and the patient's views of the illness were elicited contemporaneously and independently, through a questionnaire completed by the doctor and a structured interview with the patient. The principle outcome measure of the study was the level of agreement between the views of the patient and of the doctor, about the diagnosis, the intent of treatment, and the risks and benefits of treatment. We also wished to describe the relationship between the

Characteristics of the patients

One hundred patients participated. There were twenty-five women and seventy-five men. Their mean age was 65 years, and ranged from 25 to 88 years. Seventy-five patients lived with their spouse, and the other twenty-five were either single, divorced, or widowed. Sixty-four patients had not completed high school, and twenty-nine of these had elementary education only. Of the thirty-six who had completed high school, seven had some post secondary education, and five had completed a college diploma

Discussion

This study suggests that many patients undergoing treatment for lung cancer may not have an accurate view of the extent of their cancer, of the purpose of their treatment, or of the probable outcomes of treatment. Some discussion of the validity of the results is required before considering their implications.

It is possible that patients' answers in the interview did not reflect their true beliefs. Although questions were structured to avoid eliciting hopes rather than beliefs, and although

Conclusions

Before devolving responsibility for a medical decision to the patient, the doctor should: first, ascertain that this is the patient's preferred role in the decision process; second, decide the minimum set of facts that a patient needs to understand in order to make a substantially autonomous decision; third, provide the patient with the key information in a form which he or she can understand; and fourth, ask explicit questions to ensure that the patient understands the issues, and if he or she

Acknowledgements

This work was supported in part by grants from NCI Canada, Ontario Cancer Foundation, and the Clare Nelson Fund (WJM). We thank Mrs. Beverley Shortt for her expert assistance in preparation of the manuscript. We gratefully acknowledge the help of the staff and patients of the Kingston Regional Cancer Centre which made this study possible.

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