The largest percentage of
patients seen by our palliative care team in the past six years have been those
diagnosed with end stage cancer, but that seems to be changing. A study
published by the National Institutes
of Health (NIH) compared patients with advanced cancer, congestive heart
failure (CHF), and chronic obstructive pulmonary disease (COPD) to
see if there were significant differences in functional capacity, emotional
well-being, and quality of life between the three groups after a terminal
diagnosis.
The study concluded that
functional status was associated with diagnosis, with CHF and COPD patients
faring worse than those with cancer. Overall, the patient experience was
most significantly related to disease severity, demographics, and emotional and
social well-being rather than diagnostic category. This study was
interesting to me because CHF and COPD are emerging as significant diagnostic
categories for chaplains working in palliative care.
The authors of the NIH
study, Karen E. Steinhauser et al., reported, “In the United States cancer,
(COPD), and congestive heart failure (CHF) are among the most prevalent
life-limiting conditions. Cancer affects 10.7 million Americans, 11.2 million
adults have been diagnosed with COPD, and another 4.8 million live with
CHF. Approximately 10% of the adult population lives with serious
illness. Each illness produces high rates of hospitalization, disability, and
annual mortality.”
The study confirmed the
sense in the field that while our palliative care team tries to build trust early
on in the trajectory of the disease, concerns about emotional and social
well-being are more significant as the disease becomes more severe. For
this reason, chaplains are typically called in too late in the game when trust
has already broken down. Other demographic factors complicate the development
of trust. These include cross-cultural distrust, inadequate financial
resources, unavailability of family members to share the emotional burden,
homelessness and drug and alcohol abuse. The presence of these factors
sometimes triggers earlier consults for spiritual care.
Although social, emotional,
spiritual, and physical dimensions of quality of life did not differ by
diagnostic group, quality of life did vary by disease severity. Social and
spiritual well-being varied significantly by gender and ethnicity, with men and
non-Caucasians having worse social well-being. Men had almost four times poorer
spiritual well-being than women in the study. Physical well-being was
most strongly influenced by disease severity, education, and financial
status. Depression was related to financial status difficulties. Poorer
respondents reported higher rates of depression. My own experience
supports these findings, but I had not really considered the significance of those
differences.
The study showed that
cancer patients had a similar or better functional status, anxiety, depression,
and quality of life compared with patients with CHF and COPD. These results are
supported by other recent findings. A diagnosis of advanced COPD or a CHF
diagnosis is viewed less ominously. Advanced cancer's relatively predictable
illness pattern shows precipitous functional decline in the last months of
life, whereas COPD and CHF trajectories are punctuated with acute exacerbations
and periods of rebound in the midst of a graduated overall decline.
The fact that substantial
resources have been assigned to winning the “fight” against cancer, may give a
heroic character to the cancer patient while COPD and CHF occur in the aged and
are associated with stigmatized lifestyle behaviors such as smoking and
obesity. More research to study the implications of these findings might
help us in planning a more effective allocation of palliative care and
spiritual care resources.
