Measuring quality of lifeBMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i3816 (Published 16 August 2016) Cite this as: BMJ 2016;354:i3816
All rapid responses
As an academic psychologist, I began reading Dr Cohn’s ‘Measuring quality of life’ with more than a little interest. What new insights would this offer?
It became evident that this was a reflection on a life in healthcare, and also a confession. I don't know what I was more appalled by: 1) the idea that any consultant medical professional could understand so little about what constitutes ‘quality of life’?, 2) that Dr Cohn would admit to having previously used his limited understanding of quality of life "to suggest withdrawal of care for sick premature babies or avoiding intensive treatments for children with multiple disabilities”?, or 3) that Dr Cohn felt that he could use such an article to "apologise to those children and their families for whom I have been a two-dimensional doctor”? I am outraged, both personally and professionally.
In my personal life, I have experienced the loss of a child, and witnessed the detached style in which health professionals handle such interactions with families who are in shock, denial and experiencing unbearable grief. I have always credited them for their professionalism and been in awe that they can do this type of work day-in-day-out. Dr Cohn's confession leaves me wondering, yet again, if the "suggested withdrawal of care" was fully justified and I will never know the answer. I am also left second-guessing (possibly unfairly) every other interaction I have with the medical profession, in both my personal and professional life.
In my professional life, I have researched ‘quality of life’ for almost twenty years, and I can assure Dr Cohn that it is anything but two-dimensional. Quality of life is multi-dimensional, subjective, and dynamic. Different things matter to different people, what is important to one person is less important to another, and such evaluations change over time. Health professionals need to be able to take this into account. It can never be their decision to withdraw support for a life or to determine the treatment approach most suited to an individual. Health professionals must support individuals and families in their decision-making about what is best for them in their situation. But, those individuals and families are relying on them to provide fully informed recommendations based not only on evidence but also on a sophisticated, multi-dimensional, understanding of ‘quality of life’.
I know far too many health professionals and health researchers who pay lip service to the whole field of ‘quality of life’, as though I (an academic psychologist), make too much of the nuances of accurate, valid and reliable assessment. They take a reductionist approach, often applying too much weight to such issues as mobility and pain (which are not always relevant or important) and not enough to issues such as spontaneity, independence and confidence. In any given situation, it will only ever be the individual who can determine what matters for his or her own quality of life, and how this is impacted by living with a medical condition or by a particular medical treatment or self-management approach. When that person does not have the means or faculty to answer for him/herself, then they are reliant on family and health professionals to make ‘proxy’ assessments. We know these to be flawed, as they are informed by the proxy reporter's own set of personal values (not by the individual’s). When the health professional is the proxy, we need to be able to trust that he/she has considered ‘quality of life’ in more than two dimensions.
Having, at first, been appalled by Dr Cohn’s admissions, I am now more at ease with the idea that his perspective needed to be published. Dr Cohn now realises that his decisions earlier in his career may have been flawed and the authority of his "position may have silenced any dissenting voices”. If this article can remind just one other health professional of the privilege of their position, and the responsibility they have to think of ‘quality of life’ in multi-dimensional terms, then it will have served an important purpose. I can assure Dr Cohn and any of his like-minded colleagues that ‘quality of life’ matters and, in the end, it is all that matters.
Competing interests: No competing interests
I felt an urge to respond, based solely on the title of the article. I have only been able to read the first couple of lines of the piece, so the author might make this point inside his article: I believe that quality of life is very much a thing experienced by the person living the life - and 'trying to measure quality of life' is a dangerous path to set out on.
This 'issue or question' crops up a lot during end-of-life, in connection with consideration of section-4 of the Mental Capacity Act. Section 4 of the MCA, and its requirements for best-interests decision-making, is so conceptually complex, that I invariably suggest 'try to get the decisions from the mentally-capable patient, while you can still do that, and thereby avoid making best-interests decisions'' as the most satisfactory approach, whenever that is possible.
Competing interests: No competing interests