Optimal cancer care is multi-dimensional and is provided by a wide range of healthcare and non–healthcare professionals, including volunteers. Patients also play an important role in the self-management of their cancer care and should be encouraged to take a proactive role. Optimal cancer care incorporates timely, coordinated and effective attention to patient care. This includes not only the clinical care required to treat cancer but also care to address patients’ physical and psychological needs, including their social, spiritual and existential wellbeing. When patients, families and carers experience pressure or loss in any of these domains, or are overwhelmed by their circumstances, suffering can occur.
To date, there is limited evidence-based clinical practice guidance in Australia or internationally for healthcare professionals that focuses specifically on the alleviation of suffering in adults with cancer. This document provides guidance that will help healthcare professionals identify these issues and respond in a way that aims to reduce suffering in patients, families and carers, and improve their wellbeing and quality of life. This document includes information about the conceptualisation and identification of suffering, ways to assess and respond to suffering, and referral options if this is required.
A systematic review2 on the conceptualisation, assessment and interventions to alleviate suffering in the cancer context was undertaken to provide the evidence base for this guidance, with additional expertise provided by a multidisciplinary working group. For further details on the literature search, including research questions and the involvement of the working group in preparing this guidance, see the Methodology of evidence review section.
This clinical guidance has a multidisciplinary focus and is applicable to diverse treatment settings, including hospitals and private practices involved in cancer care. It is also relevant to health service staff and volunteers whose interactions with patients, families and carers can also impact both positively and negatively on experiences of suffering.
There are various definitions of suffering, however for the purpose of this document, the following definition is provided:
Suffering is complex and can include physical, psychological, social and spiritual reactions. Although suffering causes unique experiences of distress for the individual, it has many common features associated with actual or perceived loss. These include loss of meaning or hope, loss of physical wellbeing, emotional strength, loss of independence, isolation or changed relationships.
People who are suffering may also face reduced capabilities, for example in their mobility, speech, concentration or daily activities (such as work roles). These challenges and losses may overwhelm them, leading to a sense of personal depletion and reduced resilience.
Individuals’ social and cultural environment, as well as their own beliefs and life experiences, may influence the way in which they deal with suffering.
This definition is based on Working Group consensus WG consensus of concepts discussed in 125 articles conceptualising suffering that were assessed in Conceptualisation, assessment and interventions to alleviate suffering in the cancer context: a systematic literature review (2012).2 While physical suffering is seen as a component of suffering, it is not the focus of this guideline as the literature review on which it is based excluded literature that solely focused on physical suffering. The psychosocial and spiritual aspects of suffering are the focus of this guideline.
Whilst there may be some commonality with depression (the person who is depressed is invariably suffering), it is not true that the person who is suffering is invariably depressed. Depression is considered to be an illness characterised by pervasively lowered mood, impaired capacity for pleasure and often associated with guilt and feelings of worthlessness. Further details about depression are available in the Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer1.
It is acknowledged that there are other terms that are used synonymously with ‘suffering’, such as demoralisation; existential distress; psycho-existential suffering; psycho-spiritual distress; spiritual pain; and total pain. As suffering is often linked to issues of spirituality, and many studies focus on this concept, the terms ‘spirituality’, ‘spiritual issues’, ‘spiritual distress’ and ‘spiritual suffering’ are also used. Potentially measurable symptoms that may point to suffering include hopelessness; despair; loss of meaning; loss of dignity; crisis of faith; and desire for hastened death. In this document the term ‘suffering’ is mainly used but occasionally some other listed terms are referred to, due to the terminology used in particular studies or the context of the information.