Stigma and dignity in end of life care

The concepts of stigma and dignity are clearly interrelated (Grassi and Chochinov 2024). Self-dignity is the worth, stature, or value that human beings have simply because they are human; and social dignity is the worth, stature, or value that human beings confer upon others by acts of affirmation. What is done to reduce stigma in mental health settings results in an increase of dignity and what facilitates stigma results in a non-dignity experience for patients. 

Dignity is both an intrinsic, self-related process and a reciprocal, extrinsic/interpersonal experience. For instance, an individual’s sense of dignity can be thwarted by positive and negative symptoms of serious mental illness, specifically when these symptoms are misunderstood by others. Dignity can be enhanced if the patient and significant others embrace a recovery-focused relationship where they perceive themselves to be treated as individuals, thus reducing the shame that may be associated with being mentally ill (Skorpen et al. 2015). 

The palliative care context

The existence of disparities in health and healthcare between patients with serious mental illness and patients without a diagnosis of mental illness is evident in end-of-life care. As well as stigma, poverty, lack of family support and social isolation, a number of patient-level factors, such as cognitive impairment, psychiatric disabilities and chronicity, are implicated in end-of-life care among patients with serious mental illness (Grassi et al. 2020).

In one of the first studies conducted in a palliative care setting (Chochinov et al. 2012), Canadian patients with schizophrenia were less likely to see specialists other than psychiatrists and less likely to be prescribed analgesics than a matched cohort without serious mental illness. More recent studies conducted in Australia, Taiwan, Sweden and France confirm that people with serious mental illness are less likely to receive proper palliative care.

Person-centred psychiatry

The purpose of Person Centered Psychiatry, which recognises the patient as a whole person beyond the limits determined by the illness and its symptoms, is to pursue the totality of the patient's health, promote the fulfilment of the patient's life projects, and encourage clinicians to see themselves as full human beings with high ethical standards and work in a collaborative, respectful, and empowering manner with patients (Mezzich et al. 2016).

A series of recommendations have been proposed to improve the quality of palliative care among people with serious mental illness (Callaway et al. 2021): 

• palliative care must be centred on the needs of the person with a therapeutic relationship based on respect, dignity, hope, and non-abandonment;
• people with serious mental illness must have their palliative care needs addressed, such as adequate pain and symptom control, maintenance of function, enhancement of quality of life, support for relationships, and possibility of dying with dignity;
• there is a need for service integration and continuity of care, with interdisciplinary and interspecialty teamwork, communication, and outreach into community agencies and shelters; 
• there is a need for cross-training in palliative care and mental healthcare.

Dignity therapy

Dignity therapy (DT) could represent an important intervention to enhance quality of life in palliative care for people with serious mental illness. Developed by Chochinov, DT is a brief, personalised and empirically based intervention developed for patients with life-threatening or limiting illnesses aiming to have patients talk about things that matter most to them, creating a permanent legacy that helps them strengthen dignity and face their suffering.

 

The protocol consists in 2-3 individual meeting with in which the patient is firstly shown the DT question framework and asked to consider what they might wish to speak about during the session. DT offers the participant an opportunity to reflect upon crucial existential and relational issues, and to review aspects of their lives and of self that they wish to be remembered. 

This process focuses on tasks such as settling relationships, sharing words of love and wisdom with significant others, and preparing a legacy of memories and shared values. About a week later, the DT meeting is carried out and audio-recorded. These meaningful memories, values, words of wisdom, and special messages are transcribed verbatim and then shaped into a narrative through a preliminary editing process. A session is dedicated to the final editing process with the participant, following which they are provided the final written legacy document, to be shared and passed along to family members and beloved ones. 

The ultimate intent of DT is to lessen distress, promote quality of life, validate personhood, alleviate suffering, and give meaning and purpose to life. There are few experiences of applying the DT to the psychiatry settings (see this observational study on depression), but DT appears to increase the sense of hope in patients and to have a role in the patients regaining the sense that life is meaningful. 

In the only DT study intervention available comparing people with serious mental illness and patients with cancer (Grassi et al. 2022), similar themes emerged such as:

• “Meaning” (“vitality", "self-evaluation", "pride", "evolution of self", “support")
• “Resources” (“support”, “resilience”, “family”, “encounters”)
• “Legacy” (“bequest for others”, “time to say”)
• “Dignity”
• “Stigma”.  

There is a need to reframe medicine in a dignity-oriented way, starting by fighting stigma and strengthening the collaboration between mental health and palliative care, with proper training for healthcare professionals as part of an interdisciplinary approach.

Luigi Grassi

This post is by Luigi Grassi, Professor and Chair of Psychiatry, and Director of the Department of Neuroscience and Rehabilitation at the University of Ferrara, Ferrara, Italy. He is also a partner of project EPIC.