Meaning and DoingF. Amos Bailey, MD Jul 7, 2020
Often families are most distressed that their loved one will not eat! It would be fine if the loved one could not get out of bed, but he/she must clean their plate.
Healthcare providers must ask and record the pain score every shift, at least! Or get their knuckles wrapped and bad evaluations.
What about the person who is the focus of these concerns? What is important to them? Moving around and being active. I have known this for many years. People I have talked to would complain bitterly of their fatigue, the difficulty they have with work and other activities, the loneliness they feel and the sense of dependence. In fact, the most common reasons for seeking Medical Aid in Dying in Oregon is physical weakness and the fear of being dependent on others.
Sometimes people have had experiences of caregiving for a family member, and the idea of having to place that burden on their own family is not acceptable. This worry has led to fear and anguish for them. It seems that people get used to and accommodate to many new health limitations, but weakness, fatigue, and the inability to do the physical things they once did seem the hardest to adapt to.
In this recent JAMA article
Association of Exercise Intolerance With Perceived Well-being Among Adult Survivors of Childhood Cancer https://ja.ma/2Nv2RQR
“Data from this study suggest that exercise capacity among adult survivors of childhood cancer is associated with emotional health, ability to participate optimally in social roles, and health-related quality of life; improving exercise capacity may be factors in these other important indicators of health.”
The weaker and less physically able to “do” after surviving cancer and its treatment, the lower their QOL.
How do we respond to this? 1) Maintaining function is important and supporting exercise and rehabilitation while in cancer treatment is key. 2) Talking about it; making the implicit concerns explicit is important to understand the lived experience and to look for ways to support physical and mental coping. 3) Considering the impact of treatment before starting treatment. We know that Informed Consent is not done well but if patients and family could understand the potential risks, benefits, and burdens they may choose differently and finally, 4) living well during and after cancer treatment are important considerations.