I’ve been listening on the radio to Merope Mills talk about a new rule that is being introduced into British hospitals following the death of Martha, her 13-year-old daughter, in hospital. https://www.bbc.co.uk/news/health-68348301 Merope felt that Martha’s condition was deteriorating, but the doctors reassured her and her husband that all was well. After Martha’s death Merope felt awful that she hadn’t kicked up enough of a fuss and had let her daughter down. She has campaigned for the introduction of the new rule that she and others think will save lives and mean her daughter had not died “in vain”. Her aspirations are noble and impressive, but it’s easy for good intentions to have adverse unintended consequences, particularly in complex systems like hospitals.
With the new rule patients will be able to ask for a second opinion from a critical care team available 24 hours a day every day of the year. The team will have to be staffed, and presumably at least one member of the team should be a consultant with long experience in critical care.
I’m a great believer that patients and carers must be listened to and that their experience of care is of paramount importance, but….
Martha was 13 when she died, and deaths of children are now relatively rare (at least in Britain) and seem unbearable. But the majority of people who die in hospital are elderly and often at the end of a long illness—from frailty, dementia, and cancer. When people die they deteriorate, as is to be expected. If everybody is prepared for the death this is fine and natural. Unfortunately because “the difficult conversation” has never been had and the words death and dying not mentioned, many patients and their carers are unaware that patients are dying until days or even hours before they die. Plus there are the relatives who arrive, perhaps from far away, shortly before patients die and feel that “everything must be done.” There are also family members who find it unbearable that their family member, perhaps a partner of 60 years, is going to leave them.
It’s easy to imagine that there could be a lot of requests for second opinions on those who are dying: “surely something can be done.” This gives rise to two risks. Firstly, the pressure to “do something” may be hard to resist, and even for the skilled working out who is close to death and who might benefit in some way from further treatment is not simple: the result might be that the suffering of patents may be increased from further ultimately futile treatment. We know already that there is a lot of overtreatment at the end of life, increasing suffering; and sadly so-called “curative” care (it’s rare that the treatment does cure) is increasing faster than palliative care at the end of life. The second risk is that skilled teams, a scarce resource, may be called away from caring for patients who could benefit from their treatment.
I hope that these risks will not come to pass. Indeed, Martha’s Rule might make it more likely that the “difficult conversation” will be held and that patients and their carers will be much better informed that the patient is dying and better prepared for their death. I hope so. I worry, however, that our society’s increasing discomfort with death combined with Martha’s Rule could increase suffering a well as cost and carbon consumption for the dying and those who love them. Let’s hope I’m wrong.
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