Terminal Cancer: Putting Numbers to The Emotional Toll of A Caregiver

A study determined that there is a psychological morbidity rate of over 80% experienced by caregivers of patients with terminal cancer.

According to a British survey, more than 80% of caregivers for patients with terminal cancer exhibited clinically significant psychological distress!

The survey included 1,500 adult caregivers.  It found that 83% of the respondents suffer from a clinically significant psychological morbidity, as defined by scores on a validated general health questionnaire. The rates of distress were five to seven times higher as compared with estimates for the general population.  This finding crossed all age groups and sexes.

The survey also found that the respondents also had a worse general health status as compared to the general population, Gunn Grande, Ph.D., of the University of Manchester in England, and co-authors said, "We were aware that carers' psychological health suffers when caring for the terminally ill, but we were surprised at the sheer scale of the problem.  We found that the vast majority of carers suffered psychological morbidity at a level where a further clinical investigation is recommended and where, for instance, their ability to concentrate, make decisions, and deal with problems may be affected."

The study confirms a sizeable existing volume of already developed evidence that caring for terminally ill patients imposes a heavy psychological toll on caregivers.  

The survey findings represented less than 30% of caregivers who were sent the questionnaire. The small percentage return of survey questionnaires does raise some statistical questions about how representative the study population might be for all caregivers.  The other statistical concern about this study is that the surveyed caregivers were contacted following the death of a relative with cancer, complicating efforts to separate the distress associated with caregiving from that associated with mourning.

Despite these flaws, Grande and the co-authors of the study still believe that it fairly reflects the actual impact felt from caring for terminally ill patients on caregivers' health. The objective of the study was to provide information about the magnitude of the adverse effect, which previous studies did not capture.

Prior studies often included results for specific types of psychological conditions, such as anxiety or depression. Other studies assessed overall mental morbidity but did not include population-level data, used nonstandard assessment tools, or did not capture caregivers' distress during the end-of-life period.

The authors concluded that "This study found a far higher prevalence of psychological morbidity among carers during end-of-life caregiving than indicated by previous research, with clinically significant morbidity being the norm."

Grande G, et al. "Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey" Palliat Med 2018; doi:10.1177/0269216318793286.

Joel T. Nowak, MA, MSW wrote this Post.  Joel is the CEO/Executive Director of Cancer ABCs.  He is a Cancer Thriver diagnosed with five primary cancers - Thyroid, Metastatic Prostate, Renal, Melanoma, and the rare cancer Appendiceal cancer.