While patients and their relatives may want to delay or avoid conversations that discuss death directly, this isn’t a benign act of self-preservation. A study of over 1,200 patients with incurable cancer has shown that those who had early conversations about the end of life (in this case, defined as before the last 30 days of life) were less likely to receive “aggressive care” in their last days and weeks. This included things like chemotherapy in their last two weeks, and acute care in a hospital or intensive care unit in their last month.
Are doctors obligated to give this kind of information to patients? “The GMC [UK General Medical Council] guidance is that you should tell the patient all he or she wants to know; you should be honest; you should disclose as much as you can about what’s going on,” says Deborah Bowman, Professor of Bioethics, Clinical Ethics and Medical Law at St George’s, University of London.
“The way contemporary ethics is taught, learned, understood, it’s more about different types of knowledge and different types of expert,” Bowman says. “You may well be an expert on radiotherapy, but the patient is the expert on his or her own life, preferences, values etc.”
While patients have the right to know, they also have the right not to know. Stephen Barclay and his research group looked at the timing of conversations about the end of life with patients who had conditions such as heart failure, dementia and the lung disorder chronic obstructive pulmonary disease. “There are a significant proportion of patients who appear not to want to have early open conversations, and some never wish to have conversations at all,” he says.
Barclay cautions that the urge for so-called “professional tidiness” – getting these end of life conversations out in the open – can lead doctors to place themselves rather than their patient at the centre of the care. There’s no one-size-fits-all approach, he says. It’s about the offer of a conversation rather than the conversation necessarily happening.
For Katherine Sleeman, what – and how – you tell patients with life-limiting illnesses about their condition is incredibly important. She believes that having open, honest conversations allows doctors and nurses to establish the patient’s preferences: everything from where they’d like to die to the level of medical intervention they’d want if they stopped breathing or suffered a cardiac arrest.
But it’s not just about medical care. The last thing somebody does may be as small as writing a letter or transferring money from one bank account to another to cover their funeral costs. But if they’re not told that they’re dying, then they’re being denied a last opportunity to exert control over their own life.
Good communication can even increase hope. Sleeman cites a small study of patients with end-stage renal disease. The researchers found that being given more information earlier on in the course of an illness could increase a patient’s hope rather than extinguish it. “With the provision of prognostic information, new threats will be perceived, but rather than annihilate hope, it provides an opportunity to reshape hopes, making them more consistent with the future,” they wrote.
“The great fear is that we’ll destroy hope by having these conversations,” says Barclay. “There is a really quite good evidence base that actually sensitive and appropriate patient-led conversations might destroy unrealistic hope, but they do generate realistic hope.”
Unrealistic hope is ultimately unhelpful, he says, because it’s never fulfilled. He remembers a patient with advanced cancer who said that his family were planning to take him on a luxury beach holiday in six months’ time. Barclay’s response: could they go a bit sooner, have the holiday in the UK? “They clocked what I was saying, had a holiday in this country the next month – had a lovely time.” Two months later, the patient died.