Do patients need to know they are terminally ill? YesBMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2589 (Published 24 April 2013) Cite this as: BMJ 2013;346:f2589
- Emily Collis, consultant in palliative medicine1,
- Katherine E Sleeman, clinical lecturer in palliative medicine2
- 1Pembridge Palliative Care Centre, Central London Community Healthcare Trust, St Charles’ Hospital, London W10 6DZ, UK
- 2Cicely Saunders Institute, King’s College London, London, UK
- Correspondence to: E Collis
Patients have the right to make informed decisions about their healthcare. Informed consent, and the process of balancing risks and benefits of treatment, is a fundamental ethical principle.1 This principle is no less relevant for a patient with terminal illness, for whom an awareness of the incurable and life limiting nature of their underlying condition is essential to decision making.
Knowledge gives power
Decision making in terminal illness extends from the medical treatments and supportive care to decisions around advance planning of care, finances, guardianship, power of attorney, and voicing preferences for place of death. Worryingly, such decisions are not always fully informed. A recent study showed that 69% of 710 US patients with incurable lung cancer (and 81% of 483 patients with colorectal cancer) who received palliative chemotherapy were not aware that this was unlikely to cure the cancer.2 On the other hand, being given the opportunity to express a preference for place of death and having increased awareness of dying were associated with achieving death at home for patients with cancer.3 Accurate information enables patients to make informed, realistic choices and helps them to get their preferred care.
The central premise of informed consent is autonomy, which needs to be balanced with non-maleficence. It is difficult to argue that you can do more harm by communicating honestly and sensitively with a patient about their condition than by failing to communicate, depriving the patient of autonomy. Calman proposed that poor quality of life occurs when experience does not meet hopes, and so the role of doctors is to provide information to help gradually bridge this gap.4 In England, the doctors’ regulatory body, the General Medical Council, states that information should be withheld from terminally ill patients only if it is thought that giving information will cause serious harm, specified as “more than becoming upset.” If information is withheld, the reasons must be justified, documented, and reconsidered at a later date.5
Therefore, the key consideration for doctors is not whether patients are informed that their disease is incurable, but how this information is communicated.6 Patients should be given the information they want or need in a way they can understand.5 This should be ascertained through ongoing dialogue, and sensitivity to patients’ beliefs, culture, and preferences regarding this information is essential. Ideally these conversations would occur throughout the course of the illness, enabling patients to come to terms with the situation in their own time.6
Patient who are aware that their illness is terminal may request more specific information about prognosis. The definition of a terminal illness is simply one that is incurable and life limiting, covering many malignant and non-malignant conditions. From a clinical perspective the term “terminal illness” does not convey a specific prognosis, but in the UK from a legal perspective it is defined as “a progressive disease from which death may reasonably be expected within six months.”7 Because prognosis can never be completely accurate, it should be discussed with patients only if they request information, and the uncertainty of the estimate acknowledged. It can be more helpful to provide a framework (for example. describing prognosis as likely to be measured in months, weeks, or days), rather than a specific prediction.8 However, the uncertainty about prognosis should not obscure the clarity that the illness is progressive and incurable.
Relatives may ask that clinical information is withheld from the patient or delivered to them instead because they fear that the patient will be unable to cope with the news or lose hope. The GMC states clearly that no one can make decisions on behalf of patients who have capacity, and that unless a patient refuses information, withholding information at the request of a relative is not ethically justifiable.5 It may be helpful to inform relatives of this clear ethical position but give reassurance that if patients state that they do not want information, this will be respected. On the other hand, collusion with relatives in withholding information may lead to feelings of isolation and anxiety in the patient, potentially triggering complex bereavement problems for the family.8
The loss of hope is often cited as an argument against full disclosure to terminally ill patients. However, hope and terminal illness are not mutually exclusive. In contrast, tempering the diagnosis of terminal illness with unrealistic, or false, hope can create false expectations.9 A clinician sensitively delivering information that an illness is incurable and life limiting does not preclude the patient and family from having hope: to live to witness a specific occasion, for a peaceful death, or that there may be a cure that is beyond the realms of current scientific understanding. Therefore, the challenge for doctors is to communicate honestly with terminally ill patients in such a way that allows hope to be maintained.9 Breaking bad news is challenging in any context, but the consequences of neglecting this duty may directly affect the trust between doctor and patient, the patient’s autonomy, and ultimately his or her quality of life.
Cite this as: BMJ 2013;346:f2589
Competing interests: We have read and understood the BMJ Group policy on declaration of interests and have no relevant interests to declare.
Read Leslie Blackhall’s side of the debate at doi:10.1136/bmj.f2560
Provenance and peer review: Commissioned; not externally peer reviewed.