Existential distress in cancer: Alleviating suffering from fundamental loss and change

A severe life threatening illness can challenge fundamental expectations about security, interrelatedness with others, justness, controllability, certainty, and hope for a long and fruitful life. That distress and suffering but also growth and mastery may arise from confrontation with an existentially threatening stressor is a long‐standing idea. But only recently have researchers studied existential distress more rigorously and begun to identify its distinct impact on health care outcomes. Operationalizations of existential distress have included fear of cancer recurrence, death anxiety, demoralization, hopelessness, dignity‐related distress, and the desire for hastened death. These focus in varying emphasis on fear of death, concern about autonomy, suffering, or being a burden to others; a sense of profound loneliness, pointlessness or hopelessness; grief, regret, or embitterment about what has been missed in life; and shame if dignity is lost or expectations about coping are not met. We provide an overview of conceptual issues, diagnostic approaches, and treatments to alleviate existential distress. Although the two meta‐analyses featured in this special issue indicate the progress that has been made, many questions remain unresolved. We suggest how the field may move forward through defining a threshold for clinically significant existential distress, investigating its comorbidity with other psychiatric conditions, and inquiring into adjustment processes and mechanisms underlying change in existential interventions. We hope that this special issue may inspire progress in this promising area of research to improve recognition and management of a central psychological state in cancer care

Education and assessment of psycho-existential symptoms to prevent suicidality in cancer care

Clinicians acknowledge awkwardness and lack of skills in assessing suicidal symptoms. This requires increased education, screening for psycho-existential symptoms, and the therapeutic targeting of key symptoms. Assessment of hopelessness, pointlessness, low morale, entrapment, anhedonia, loss of control, loss of roles, and the wish to die prove extremely helpful in recognising a suicidal patient. Use of a screening tool for psycho-existential symptoms aids this recognition and empowers referral for treatment. Communication skills training increases each clinician’s skill and provides a strategic sequence to explore symptoms that mediate suicidal thinking. Network analysis research to identify core symptoms suggests that hopelessness, pointlessness, and entrapment are key therapeutic targets to assuage suicidal thinking. Meaning-centered therapy helps to restore purpose and value to life, cognitive-behavioural therapy reframes pessimism and catastrophising, supportive therapy provides hope and accompaniment, while psychotropics treat clinical depression. There is both a clinical responsibility and an ethical imperative to treat suicidality effectively

Agency, autonomy and euthanasia

Agency is the human capacity to freely choose one’s thoughts, motivations and actions without undue internal or external influences; it is distinguished from decisional capacity. Four well-known conditions that can deeply affect agency are depression, demoralization, existential distress, and family dysfunction. The study reviews how they may diminish agency in persons whose circumstances may lead them to consider or request euthanasia or assisted suicide. Since agency has been a relatively neglected dimension of autonomous choice at the end of life, it is argued that to respect the autonomy of individuals, it is essential to establish their agency

Mental state of demoralisation across diverse clinical settings: A systematic review, meta-analysis and proposal for its use as a ‘specifier’ in mental illness

Objective: Demoralisation is a state of poor coping characterised by low morale, hopelessness, subjective incompetence, and loss of meaning and purpose in life. While studied extensively in oncology and palliative care, there has been recent exploration in broader medical and mental health settings. The aim was to investigate the prevalence of demoralisation and associated sociodemographic and psychological factors across these clinical settings. Method: Six electronic databases were used to locate articles from January 2014 to March 2020. A pre-publication update of non-oncology populations was completed in September 2021. The review has been reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Pooled prevalence of demoralisation was determined through % prevalence and mean demoralisation score; this was synthesised through meta-analysis of single means to determine pooled mean prevalence of Demoralisation Scale scores using the ‘R’ statistical software. Results: Demoralisation has been examined in 52 studies (n = 11,670) and found to be prevalent in 24–35% of oncology and non-oncology, including mental health, populations. The mean score on the Demoralisation Scale was 24.3 (95% confidence interval, CI = [21.3, 27.3]). There was evidence of divergent validity in addition to significant comorbidity between depression, demoralisation and suicidal ideation. Burdensome physical symptoms, and psychological and demographic factors are strongly correlated with demoralisation. Conclusion: There remains a need to recognise demoralisation in various clinical and cultural settings and to strongly consider its inclusion as a ‘specifier’ within formal nosological systems for adjustment and depressive disorders. This is important to initiate targeted interventions and prevent significant morbidity

The prevalence, reporting, and treatment of anxiety among older adults in nursing homes and other residential aged care facilities

Background: Little is known about anxiety in aged care populations, despite its increase in this frail population. This study investigated the prevalence, recording, and treatment rate of anxiety disorders among aged care residents. Methods: A cross-sectional, observational design was used to assess 180 elderly residents from 12 aged care facilities in Melbourne, Australia. Participants were assessed for threshold and subthreshold anxiety disorders and comorbid depression using the MINI for DSM-5. Medical files were also reviewed to determine whether there was any indication that anxiety had previously been detected, and what treatment those with a threshold/ subthreshold diagnosis were receiving. Results: Overall prevalence of threshold and subthreshold anxiety disorders was 19.4% and 11.7%, respectively. Generalized anxiety disorder was the most common threshold disorder and agoraphobia was the most prevalent subthreshold anxiety disorder. While less than half of those with a threshold or subthreshold anxiety disorder had an indication of anxiety in their file, the majority received psychotropic medication. Cognitive impairment was not significantly associated with the prevalence or treatment of anxiety. Conclusions: The prevalence of threshold and subthreshold anxiety in aged care settings is high, but remains under-reported by staff and GPs. Facility staff and GPs should ensure they are aware of how anxiety presents in elderly residents and routinely screen for this common mental health issue. This cohort had poor access to psychological treatments for their condition

Patients’ and caregivers’ contested perspectives on spiritual care for those affected by advanced illnesses: A qualitative descriptive study

Context; Spiritual care refers to practices and rituals addressing spiritual/religious concerns. It supports coping with loss and finding hope, meaning, and peace. Although integral to palliative care, its implementation is challenging. Objective: To understand an Australian cohort of patients’ and caregivers’ perspectives about experiencing and optimizing spiritual care in the context of advanced illness. Methods: Patients and caregivers of patients with #12 month prognosis were recruited from a broader spiritual study via criterion sampling and agreed to opt-in interviews. Participants from an Australian, metropolitan health service received a spiritual care definition and were interviewed. Transcripts were analyzed using qualitative description. Results: 30 patients (17 male; mean age 70 years) and 10 caregivers (six male; mean age 58.9 years) participated. 27 identified as Christian, and 10 had no religion. Participants described multifaceted and contested beliefs about spirituality. Many queried the tangibility of spirituality, but all valued respectful staff who affirmed personhood, that is, each individual’s worth, especially when care exceeded expectations. They also resonated with positive organizational and environmental tones that improved holistic well-being. Participants stressed the importance of the hospital’s welcoming context and skilled care, which comforted and reassured. Conclusion: Although many patients and caregivers did not resonate with the term ‘‘spiritual care,’’ all described how the hospital’s hospitality could affirm their values and strengthen coping. The phrase ‘‘spiritual care and hospitality’’ may optimally articulate and guide care in similar, pluralist inpatient palliative care contexts, recognizing that such care encompasses an interplay of generalist and specialist pastoral care staff and organizational and environmental qualities

Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease

Background: Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored “goodness of fit” support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role

Timing of palliative care referral and aggressive cancer care toward the end-of-life in pancreatic cancer: A retrospective, single-center observational study

Background: Pancreatic cancer is noted for its late presentation at diagnosis, limited prognosis and physical and psychosocial symptom burden. This study examined associations between timing of palliative care referral (PCR) and aggressive cancer care received by pancreatic cancer patients in the last 30 days of life through a single health service. Method: A retrospective cohort analysis of end-of-life (EOL) care outcomes of patients with pancreatic cancer who died between 2012 and 2016. Key indicators of aggressive cancer care in the last 30 days of life used were: ≥1 emergency department (ED) presentations, acute inpatient/intensive care unit (ICU) admission, and chemotherapy use. We examined time from PCR to death and place of death. Early and late PCR were defined as \u3e 90 and ≤ 90 days before death respectively. Results: Out of the 278 eligible deaths, 187 (67.3%) were categorized as receiving a late PCR and 91 (32.7%) an early PCR. The median time between referral and death was 48 days. Compared to those receiving early PCR, those with late PCR had: 18.1% (95% CI 6.8–29.4%) more ED presentations; 12.5% (95% CI 1.7–24.8%) more acute hospital admissions; with no differences in ICU admissions. Pain and complications of cancer accounted for the majority of overall ED presentations. Of the 166 patients who received chemotherapy within 30 days of death, 23 (24.5%) had a late PCR and 12 (16.7%) an early PCR, with no association of PCR status either unadjusted or adjusted for age or gender. The majority of patients (55.8%) died at the inpatient palliative care unit. Conclusion: Our findings reaffirm the benefits of early PCR for pancreatic cancer patients to avoid inappropriate care toward the EOL. We suggest that in modern cancer care, there can sometimes be a need to reconsider the use of the term ‘aggressive cancer care’ at the EOL when the care is appropriately based on an individual patient’s presenting physical and psychosocial needs. Pancreatic cancer patients warrant early PCR but the debate must thus continue as to how we best achieve and benchmark outcomes that are compatible with patient and family needs and healthcare priorities

The psychological aftermath of prostate cancer treatment choices : A comparison of depression, anxiety and quality of life outcomes over the 12 months following diagnosis

Objective: To assess the psychological impact of the different treatments for localised prostate cancer (PCA). Design, participants and setting: Observational, prospective study of consecutive patients with PCA attending clinics in public hospitals and private practices in metropolitan Melbourne between 1 April 2001 and 30 December 2005. Data were collected at initial diagnosis of histologically confirmed localised PCA, and close to the commencement of definitive treatment (Time 1), and 12 months later (Time 2). Patients were stratified according to treatment type (radical prostatectomy [RP], hormone therapy [HT] or other early treatment including radiation therapies [OET]). Patients who elected to undergo active surveillance/ watchful waiting (WW) rather than active treatment were treated as a naturalistic control group. Main outcome measures: Levels of depression and anxiety were assessed by the Brief Symptom Inventory, and physical and psychosocial aspects of health-related quality of life (HRQOL) were assessed by the 36-item Short-Form Health Survey. Results: 211 patients with PCA were recruited; 193 completed the Time 1 questionnaires (38 RP, 56 HT, 38 OET and 61 WW); and 172 completed the Time 2 questionnaires (33 RP, 51 HT, 33 OET and 55 WW). At Time 1, the three active treatment groups all reported greater dysfunction in work role and daily activities compared with the WW group. The RP group also reported worse social and emotional role functioning, while the HT and OET groups reported poorer vitality levels. The HT group reported significantly higher depression scores. At Time 2, the RP and OET groups did not differ from the WW group on either HRQOL or psychological status. By contrast, the HT group reported significantly worse HRQOL (physical functioning, role-physical and vitality domains) and greater psychological distress compared with the WW group. Conclusions: Compared with the other active treatments for localised PCA, HT appears to be associated with poorer HRQOL and greater psychological distress 12 months after commencing treatment

Barriers and facilitators to community-based psycho-oncology services: a qualitative study of health professionals’ attitudes to the feasibility and acceptability of a shared care model

Psychological therapies combined with medication are effective treatments for depression and anxiety in patients with cancer. However, the psycho-oncology workforce is insufficient to meet patient need and is hard to access outside of major cities. To bridge this gap, innovative models of care are required. Implementation of a new model of care requires attention to the facilitators and barriers. The aim of this study was to explore stakeholders' attitudes to the feasibility and acceptability of a community-based, shared care model for the treatment of depression and anxiety.Semi-structured interviews were conducted with community-based clinical psychologists (n=10), general practitioners (n=6) and hospital-based psychologists working in psycho-oncology (n=9). Framework analysis was conducted to identify key themes.All stakeholders perceived the model as feasible and acceptable. Potential barriers/facilitators to implementation were summarised under six key themes: (1) initiative, ownership and autonomy, (2) resources, (3) pathway establishment, (4) support, (5) skill acquisition, and (6) patient engagement. Facilitators included quality communication between health professionals across primary and tertiary care, and appropriate education and support for community-based clinicians.This in-depth exploration of Australian health professionals' perceptions of the feasibility and acceptability of a community-based model of psycho-oncology care revealed that most clinicians were willing to adopt the proposed changes into practice. An RCT of a shared care intervention for depressed patients with cancer is needed