Managing Expectations: Changing perspectives on end of life care

Britain’s population is aging. Medical advancements and our increasing quality of life leads us all to expect to live long enough to be grandparents or even great grandparents. The Queen herself has been forced to expand her ‘Centenarian team,’ to keep up with all the birthday cards she now has send out to those reaching triple figures.

There is a trending attitude that survival is the ultimate benefit, regardless of the cost. A recent report from the British Medical Association has concluded that many doctors, under intense pressure from patients families and the fear of death been deemed ‘defeat’, are continuing to treat dying patients beyond the point at which it will provide any benefit at all. It was reported that ‘many doctors are reluctant to decrease treatment in a managed way as a patient approaches the end of life. Some doctors remain reluctant to make that call, associating a decision not to pursue further active treatment as an acceptance of failure.’

Culturally, we all tend to hold out hope for a miraculous recovery but unfortunately this has translated to patient’s relatives pressuring doctors to keep on providing treatment past the point where nothing else can be done. A review published by the British Medical Journal last year found that doctors themselves tend to overestimate the chances of survival and it is clear the perception that death as ‘failure’ is inhibiting doctor’s ability to act in the patients best interests.

One doctor which was quoted in the BMA report noted that once it is recognised that a patient is dying, the care they receive is good, “but for the patients who are dying but no one’s actually worked that out yet, it’s much less good.” The report calls for the NHS to shift focus from needlessly prolonging life to taking steps to ensure that, when it is inevitable, the patient has as comfortable and painless death as possible. The concept of a “good death,” is sometimes difficult to stomach when you are dealing with a loved one however the majority of terminally ill patients make it clear that they would prefer not to spend their final hours in a hospital. Doctors can be reluctant to discharge patients in this position as it can be seen as ‘giving up hope’ but could actually be counterproductive to fulfilling patients dying wishes.

End of life care must be provided with the highest degree of care and compassion. The report has made it clear that a better understanding of palliative care by medical professionals is absolutely essential. Transparency and dialogue between patients, their families and doctors is key to managing expectations and ultimately making this difficult time as painless as possible.