Short abstract
Doctors in Britain are expected to attempt resuscitation unless patients have agreed do not resuscitate orders. If patients are terminally ill, is discussion of such orders harmful or helpful?
Patients with chronic illness and cancer have special needs. Their treatment options are complex, are offered over longer periods of time because of improved survival, and have benefits and risks that are difficult to weigh. Terminally ill patients often have to make decisions about their final treatment after a protracted period of illness, investigation, and treatment. But this does not mean they don't want to be involved. Poor communication and information leads to poor patient satisfaction, symptom management, and compliance.1-3 New guidance on effective models of supportive and palliative cancer care suggests that effective training in communication can improve patient satisfaction and some outcomes.4
Discussion about cardiopulmonary resuscitation is as important as discussion about any other treatment in terminally ill patients. Some doctors may avoid talking about do not resuscitate orders because they feel it is important to offer a positive outlook. However, silence or incorrect information has been shown to heighten the fear, anxiety, and confusion experienced by patients and families.3,5 Uncertainty and anxiety can be worse if patients receive mixed messages. Therefore, everybody caring for the patient and family needs to be kept fully informed of important decisions and wishes.
Doctors have been shown to be inaccurate at predicting the views and wishes of patients and may thus be unlikely to guess patients' desire for resuscitation. A recent study of 255 patients who were designated do not resuscitate in the nurses' files (investigators were unaware of patient wishes, or the extent they were involved in discussions) found that 48% of patients rated their quality of life as good, whereas physicians rated it good for only 9%; 71% of physicians relied on their assumptions about patients' quality of life when making a decision about resuscitation.6 These results show the importance of involving patients in decisions about resuscitation.
Making decisions
Nevertheless, discussing resuscitation is more complex when patients are terminally ill. Time is limited, and some patients have poor concentration or are unconscious. Decisions should therefore be made before patients reach this stage. Delaying discussions may mean they begin too late because doctors more often overestimate than underestimate survival.7 Clinicians need to determine how much patients want to be given full information and make decisions. Although many patients value involvement, individual wishes vary.2,8 We need to determine how each patient perceives the situation and what is important for him or her.
Patients cannot make decisions unless they understand the different treatment options and the trade-offs between potential risks and benefits. This requires time, support for the professionals involved, and information about effective treatments in an easily understandable form (box). A study of chemotherapy preferences among patients with advanced lung cancer found that although all had received chemotherapy, only one quarter would make the same decision again had they been more fully informed.9 Similar shifts in treatment choice after fuller information have been found for other conditions.10 When patients became aware of the low probability of success of cardiopulmonary resuscitation, many (but not all) were less likely to request it.11
Research in end of life care has been neglected, and only 0.18% of UK research funding for cancer is dedicated to end of life care.12 Unsurprisingly, therefore, our understanding of the effective treatments, patient preferences, and best ways to include patients in decisions remains patchy. The best way to answer the practical difficulties of effectively including terminally ill patients in treatment decisions is through more appropriate training, suitable care infrastructure, public debate, and research rather than by professionals making decisions unilaterally.—Irene J Higginson
Requirements for effective involvement of terminally ill patients in resuscitation decisions
Excellent listening and communication skills
Suitable environment and time
Assessment of patient's views as circumstances change
Support for staff in a multiprofessional context
Ability to predict prognosis accurately and strategies to deal with uncertainties when this is not possible
Effective communication between doctors, nurses, and all those caring for the patient
Competing interests: None declared.
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