Evidence Summary
Definition and Prevalence
Suffering has been described as a psychological or spiritual state that can diminish an individual’s capacity to find solace or peace in their present situation. [3] According to Cassell 'suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner.' He observed that modern medicine in its practice can unwittingly contribute at times to patient suffering. [6] He later emphasised that to appreciate the suffering of others requires a full understanding of the personal narrative of the individual. [6] Suffering can engender a 'crisis of meaning' [7] or a spiritual re-evaluation of life’s ultimate importance. Although suffering is widely experienced by palliative care patients, it is often concealed by the individual and not recognised by others.
- Suffering may occur in the palliative context at any time
- Suffering is not confined to physical symptoms
- Suffering is held as a state of severe distress that is subjective and unique to the individual
- People suffer not only from an illness but also from its treatments
- One can never anticipate the source of another person’s suffering
- Healthcare professionals sometimes withdraw from those who suffer because they are unsure how to proceed, or they fear making matters worse
- Clinicians need to sensitively explore with each patient, in an atmosphere of trust, perceived aspects of their suffering. [6]
Assessment
Important contributing factors include:
- Sense of dread of the unknown
- Loss of equilibrium and being overwhelmed by life’s circumstances
- Family distress or dysfunction
- Spiritual or existential concerns
- Co-morbid depression and / or severe anxiety.
Screening of distress is still under development and recommendation of which tool to use depends on context of use. [8,9]
Treatment
Two major considerations relevant to suffering in the palliative care context are existential distress and the impact of dignity conserving care. Evidence relating to these and their treatment is considered separately in the accompanying pages.
Practice Implications
- Palliative care practitioners are increasingly able to respond to the pain and symptom distress experienced by those at the end of life. The concept of providing comfort as opposed to making a person comfortable has only recently begun to be re-examined. [6]
- What an individual values will determine what priorities they set and can help health care professionals understand care priorities in alleviating suffering and delivering dignified care. [10]
- When an individual does 'not feeling treated with respect or understanding' and feels a ‘burden to others' they are more likely to have dignity-related concerns. [7]
- There is some controversy about the use of sedation to manage distress that is not physical in nature. [1]
Evidence Gap
- The strength of the patient doctor relationship has been emphasised in writings on the nature of suffering. [3,6]
- Research into the nature of suffering is gaining momentum. [7] It continues to be conceptually explored. [11,12] The research however is still not population specific so that our understanding of the nature of suffering at particular phases of the life cycle is still poor.
- There is a need to continue to explore the role of sedation and existential, non-physical suffering. [1]
- Considerations of dignity have been invoked as justification for:
- Euthanasia and assisted suicide. [13]
- Hydration and nutrition
- Terminal sedation
- Basic symptom management.
- Research into dignity issues for specific populations such as people with dementia or those from a different cultural background is beginning. [14-16]
- Privacy and dignity issues for all patients within the health care system are also being discussed. [17]
- A number of studies on dignity focus on family members and further research is required to understand the interaction between the family and the individual. [18]
- The concepts of existential distress and existential loneliness need clarity and agreed definition. [1,19]
- How health care professionals can best support existential well being is not known. [20]
- The effects of existential distress on physical symptoms are not known. [20]
- Screening of distress is still under development. [8,9]
- Lack of empirical attention to ideas around existential loneliness and psychosocial and spiritual interventions has been suggested as a contributing factor to the unfounded use of deep continuous sedation and even euthanasia. [21]