Don’t forget the relatives

Question of patient’s capacity

Confidentiality, or keeping your patient’s secrets, places limits on the extent of the family’s involvement. If a patient has capacity, the clinician should check that sharing information with relatives is permitted. If the patient lacks capacity, the General Medical Council’s guidance reflects the commonsense position: “It is reasonable to assume that, unless they indicate otherwise, they would want those closest to them to be kept informed of relevant information about their general condition and prognosis.”1

When a patient is ill, clinicians consider whether that patient knows the diagnosis and prognosis. If not, and if the patient has capacity, the norm in the United Kingdom, the United States, and many other countries is to disclose that information to the patient. Respect for patient autonomy requires it. Yet, clinicians should also consider whether the relatives should be told about the patient’s condition.

The family of the patient in my inquest wanted regular updates. They believed that the patient was stable until a registrar rushed to the hospital cafeteria to tell them that she had gone into cardiac arrest. Although the family believed that there was a sudden and catastrophic turn for the worse, the medical notes show a gradual decline over hours. The clinicians suspected she might die. The relatives were clueless.

Talking to the family ranks low in a clinician’s list of priorities. In busy times, dealing with other patients may push that task so low on the list that it never gets done on that shift. After checking the patient’s observations, noting urine output, calculating fluid balance, reading scans, arranging for tests, phoning colleagues, and conducting other tasks, a doctor may forget to talk to the family. Sharing bad news can also be an unpleasant task for clinicians. Some relatives ask irritating questions, others complain about the patient’s management or talk too much, and others are downright rude.

Time well spent

Time is a limited resource in medicine, but keeping relatives informed of the patient’s condition is time well spent. Regular discussions set the family’s expectations at the right level. They reduce the likelihood of conflict arising from divergent understandings of the patient’s true condition. They build trust, show concern, and reflect an appreciation that illness affects not just the patient but can “infect” their loved ones too, causing emotional pain and suffering. They can allow relatives to explain the medical situation to the patient in more meaningful ways or help persuade the patient to follow a course of action. And when patients lose capacity relatives can form valuable allies in making decisions that reflect the patient’s values.

When the patient is in pain or appears distressed, it is particularly important to explain the situation to the family, including the steps taken to minimise the distress. At the inquest the relatives could not understand why the patient struggled to breathe when the anaesthetist could have used the ventilator to breathe for her. It was an upsetting sight. In fact, the anaesthetist wanted to exercise the patient’s ailing lungs, but this was never explained to the relatives, who instead believed that the medical team had neglected her. More than any other, the sight of a patient in distress, without any explanation for that distress or reassurance that everything has been done to keep the patient comfortable, can lead relatives to question the quality of care provided. This, in turn, increases the likelihood of complaints.

So accustomed are clinicians to treating sick patients that some barely notice the relatives standing helplessly by the bedside and forget what William Osler reminded the nurses at the Philadelphia Hospital in 1897: “The handing over to a stranger the care of a life precious beyond all computation may be one of the greatest earthly trials.”2 Keeping the relatives informed of the medical situation, good or bad, makes the ordeal more bearable.