Providing quality palliative care (PC) is based on a deep understanding of patient experience and potential causes of end-of-life distress. Most attempts to better understand this distress prioritized the physical and, to a lesser extent, psychological sources of the distress. Fewer efforts were made to identify the existential and spiritual challenges terminally ill people face.
Psychological distress is universal among patients at the end of their lives, and is something that patients want to have addressed within the context of PC. Even though many sources of distress may not be readily visible or easily expressed by patients, the degree to which distress shapes end-of-life experience is profound.
A psychometric tool — the Patient Dignity Inventory (PDI) — was developed to measure and track a broad variety of end-of-life distress. Using this tool, patients have identiﬁed diverse problems.
• The most commonly recognized problems included a combination of:
- physical challenges (distressing symptoms)
- functional limitations (not able to continue usual routines; not able to perform tasks of daily living; not able to carry out important roles), and
- existential concerns (no longer feeling like themselves).
Although few of these, aside from symptom distress, are routinely evaluated, their importance suggests that within the context of end-of-life care, they should be acknowledged; they should not be misunderstood as unimportant.
• Being younger, male, an inpatient, more educated, and having a partner or living with someone was associated with a greater likelihood of certain kinds of distress.
The problems that younger patients identify indicate that anticipation of death raises various existential worries: feeling a loss of control, generalized psychological distress, and a sense of unﬁnished business. Additionally, these patients have had less time to realize their life goals or ambitions and may, more than older patients, sense that their death is premature or untimely.
• Age, gender, partner status, and living arrangements are strongly correlated, in that older individuals were more likely to be female, have lost their partners, and to be living alone. Controlling for any three of these variables, therefore, substantially reduces the impact of the remaining variable. Partner status, however, continued to be very signiﬁcantly associated with feelings of not having control, even after controlling for all the other demographic variables.
• Education and inpatient/outpatient status retained highly signiﬁcant associations with individual sources of distress, after controlling for all the other demographic variables, implying that these variables operate independently of the age/gender/partner status/living arrangements complex. Being more educated, having a partner, and being an inpatient each had an independent and signiﬁcant predictive inﬂuence on poorer coping. Perhaps more education correlates with a cognitive style, whereby intellectual processing, in the face of overwhelming life-threatening circumstances, allows for rumination without, necessarily, resolution.
• Cancer inpatients tend to report more distress than do outpatients; inpatients demonstrate a poorer quality of life, with more physical and psychological distress, than patients being looked after in the community.
• There is an association between general notions of spirituality and end-of-life distress. A heightened sense of spirituality and lack of symptom distress would appear to go hand in hand. Faith, in itself, may have less to do with end-of-life distress, relative to issues of existential wellbeing, such as feeling at peace with oneself or having a sense of meaning and purpose.
Understanding and identifying the diversity of distress in PC is a critical step for acknowledging its importance within the area of human suffering. A clear articulation of the typography of distress, including insight regarding those who are most at risk, should pave the way toward more effective, dignity-conserving end-of-life care.
See reference for more information.
Adapted from Sinclair S et al. The landscape of distress in the terminally ill. Pain Symptom Manage, Vol 38, #5, 2009; 641. Internet. Accessed on January 22, 2020.