Table 4 Reported Challenges/Barriers to Depression Assessment and Management in People with Very Poor Prognoses

• Frailty, Burden & Intolerance*

71.2%

• “Fatigue, nausea, pain” (Participant 72) and “declining cognition” (Participant 27)

• “Even when good psychology, psychiatry and/or pastoral care are available these patients are often too fatigued to participate in talking therapies” (Participant 25)

• “Lack of effective medication which will make a difference without causing unnecessary side effects” (Participant 6)

• Therapeutic Efficacy - Lack of therapeutic options that are rapidly effective in the context of very poor prognoses*

77.3%

• “Time frame required for effect of pharmacologic and non pharmacologic interventions” (Participant 5)

• “Timing and the poor prognosis which impedes any intervention to be effective.” (Participant 2)

• Competing priorities - Prioritisation of physical or other psychosocial & spiritual co-existing issues, symptoms or goals

21.2%

• “Competing priorities - physical symptoms and planning for end-of-life are often more pressing “(Participant 25)

• “Other symptoms take priority and are focused on much more than mood disorders” (Participant 44)

o Depression vs terminal illness symptoms*

53.0%

• “Challenges differentiating somatic symptoms from depression vs physical illness” (Participant 5)

• “Usually hard to teese out how much is depression and how much is part of dying process” (Participant 13)

o Between depressed-mood syndromes or differentials (e.g. existential distress, demoralisation, adjustment disorder, organic brain syndrome)

19.7%

• “Challenges differentiating demoralisation from major depression” (Participant 5)

• “Distinguishing between adjustment and depression” (Participant 8)

• “Misattribution – e.g. depression with psychotic symptoms being attributed to delirium” (Participant 4)

o Normal vs Pathological

16.7%

• “Hard to distinguish from normal grief” (Participant 19)

• “Difficulty assessing the difference between normal reactive mood changes [versus] pathological level of mood changes” (Participant 68)

• Limited Skills & Training

24.2%

• “Limited skills in psychiatric assessment - my last psychiatry placement was as a 3rd year medical student” (Participant 60)

• “Limited knowledge of what works to improve mood in limited time frame” (Participant 41)

• Suboptimal access and delivery of palliative care and mental health services

37.9%

• “High patient numbers for a small number of clinicians; Lack of allied health staff in [palliative care] MDT to deliver interventions” (Participant 31)

• “Poor access to psychology/psychiatric services” (Participant 44)

• Lack of access to desired depression interventions

13.6%

• “Lack of access to resources for non-pharmacological management e.g. psychology, music therapy” (Participant 71)

• “Access to rapid-acting medications like modafinil” (Participant 42)

• External Environment

1.5%

• “[Lack of] control of clinical envirmnment” (Participant 31)

• Language & Cultural issues

1.5%

• “Language / cultural barriers” (Participant 64)

• Lack of evidence & guidelines

15.2%

• “Uncertainty regarding the best treatment for this population/limited evidence base” (Participant 56)

• Heterogeneity of the concept and definition of depression in very poor prognosis setting

1.5%

• “Lack of defined criteria for diagnosis of depression in this group of patients” (Participant 48)

• Nihilism / Futility

10.6%

• “A sense of futility - Why assess it if there’s little I can do about it? “(Participant 25)

• “Therapeutic nihilism” (Participant 21)

• Acceptance / Normalisation

12.1%

• “Acceptance that this [depression] is a normal part of end of life” (Participant 21)

• “Normalisation” (Participant 40)

• “Of course he/she is depressed, he/she is dying” (Participant 4)

• Resistance / Disinclination of patients, public, family or clinicians/staff

4.5%

• “Stigma” (Participant 65)

• “Pressure from other health care professionals not to treat patients as they are dying” (Participant 34)

• “Family not willing to engage non-pharm [interventions]” (Participant 64)