Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care

Abstract

Clinical Scholar and his research interests lie in health care inequalities, improving equity and accessibility in health care, particularly in relation to the physical healthcare needs of people with mental ill health and learning disabilities. His methodological specialisms lie in arts-based research methods, co-creation and participatory methods.

End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study)

“…97 It has long been acknowledged that stigma and prejudicial attitudes are experienced by those living with severe mental illness, 98 reflected in the recent launching of a Lancet commission in this area. 99 Supporting other work in this area 13,95,100,101 this review has shown that stigma and discrimination remain major problems for people with severe mental illness at the end-of-life, especially for those who are homeless. In the case of staff working in end-of-life services stigmatising and prejudicial attitudes towards people with severe mental illness, and particularly people who are homeless, can affect decision-making.…”

NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review

“…People living with SPMI have increased somatic risks, higher cancer mortality rates [ 42 ], poorer clinical outcomes [ 43 ], and die significantly earlier due to factors attributable to their mental illnesses. These factors include the side effects of psychotropic medications, unhealthy lifestyles [ 38 ], alcohol and other drug use, poor health monitoring [ 44 , 45 , 46 ], and reduced health prevention and screening, leading to under-detection and late diagnosis of disease [ 18 , 22 , 25 , 26 , 39 , 40 , 45 , 46 , 47 , 48 ]. People with SPMI are particularly vulnerable to shorter life expectancy [ 40 , 49 ] as they are often victims of violence [ 50 ], healthcare system neglect [ 25 , 45 ], and can be excluded from mainstream service support due to barriers such as homelessness [ 26 , 27 , 51 ], cultural insensitivity [ 52 ], poverty, and stigmatisation [ 5 , 14 , 15 , 17 , 18 , 21 , 22 , 24 , 25 , 26 , 27 , 39 , 47 , 49 , 51 , 53 , 54 , 55 ].…”

“…Fear of discrimination due to past experiences of stigma often leads people with SPMI to disconnect from services and supports [ 49 ], resulting in unmet needs across a range of areas, including mental and physical healthcare, housing, and alcohol and other drugs (AOD) treatment. In addition, this fear of discrimination can lead to ambivalence regarding receiving treatment and end-of-life and palliative care [ 14 , 21 , 22 , 26 , 39 , 51 , 56 ]. There is, however, across the research ample confirmation that people with SPMI are almost universally stigmatised within health and palliative care settings, resulting in substantial inequity, unmet need, reduced access to care, and poor end-of-life outcomes [ 5 , 14 , 15 , 18 , 21 , 22 , 24 , 25 , 26 , 27 , 28 , 39 , 49 , 51 , 53 , 54 , 57 , 58 , 59 ].…”

“…In addition, this fear of discrimination can lead to ambivalence regarding receiving treatment and end-of-life and palliative care [ 14 , 21 , 22 , 26 , 39 , 51 , 56 ]. There is, however, across the research ample confirmation that people with SPMI are almost universally stigmatised within health and palliative care settings, resulting in substantial inequity, unmet need, reduced access to care, and poor end-of-life outcomes [ 5 , 14 , 15 , 18 , 21 , 22 , 24 , 25 , 26 , 27 , 28 , 39 , 49 , 51 , 53 , 54 , 57 , 58 , 59 ].…”

“…However, as around 80% of people who die in Australia are over 65 years, most palliative care programmes and support appear to be geared towards the over-65s. Further, there is a paucity of research into the death, dying, and palliative care experiences of people living with severe and persistent mental illness [ 5 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 ]. This limited research also shows that people with psychosocial disabilities experience stigmatising, siloed, disjointed systems, and substantial support gaps.…”