Have you ever heard the phrase “I’m afraid nothing more can be done” in the context of health care? Perhaps on television, or if you’ve been caring for someone undergoing treatment. Even if it is said with genuine sympathy, the problem is that it can suggest resignation or failure. However, we have identified this as a moment not when everything suddenly stops, but when a different form of care can be offered.
Over the last few years, we have been doing a project called Forms of Care. We have been documenting the various ways decisions not to intervene – such as deciding to withdraw or not even start a particular treatment – emerge as part of everyday healthcare practice. These instances of not doing can refer to a particular medication, a general course of action, or broader aspects of care.
We focused on palliative care teams in a London hospital and surrounding community who look after people who are dying or living with serious illness. These teams are frequently brought in when other medical specialists feel there is “nothing more” they can offer, especially when the patient is nearing the end of their life. This can be difficult for the palliative care staff who know they can offer much more to the patient.
There was a delicate balance between providing treatment to possibly extend life and a focus on reducing interventions to improve the quality of life in the present
To do our research, we sat in on many of their team meetings and followed different staff in their day-to-day interactions. We also interviewed them about their work and spoke to patients and their loved ones. During these, we heard many conversations and deliberations about what kind of treatment could or should be provided. There were considerations about what people wanted for their own lives or those they cared about. For some, there was a delicate balance between providing treatment to possibly extend life and a focus on reducing interventions to improve the quality of life in the present. This acknowledged that choosing not to always provide all possible treatment could still be legitimate.
In contrast to rare cases of patient neglect, we found such practices of ‘not doing’ are both routine and a significant dimension of general medical care. They often exist in parallel with decisions to act, rather than instead of them.
Nevertheless, the sense of ‘not doing’ something can conflict with the expectation that active treatment should always be provided, and that not doing so is equivalent to giving up. So, the medical staff often have to work very hard to explain to patients and others how care can encompass a wide variety of approaches.
From what we have learnt, we are convinced it’s time we all should reflect on what really might be the best form of medical care - not only for people who are very sick and dying – but in all instances when the assumption to continually treat and intervene might not actually be the most caring thing to do.
The Forms of Care Project was funded by the Economic and Social Research Council (ES/P002781/1). To find out more about the project, visit the project website or follow us on Twitter.
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