As a result of elevated interest in hastened death at the end of life by people with motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS), numerous studies have examined factors that affect quality of life, psychological health, and end-of-life distress in this population. Findings indicate that quality of life in MND-diagnosed individuals is independent of physical decline [1, 2]; that interest in hastened death is correlated with hopelessness [3, 4]; and that MND patients with higher levels of spirituality and sense of meaning experience less end of life distress [5, 6]. This research has resulted in a call to develop psychosocial interventions for use with the MND population that will bolster hopefulness, spirituality, and meaning [7, 8]; however, very little work has been done to develop and implement such interventions.
MND is a family disease, and family carers carry an exceptional burden by providing a high level of care, often for the duration of the illness. Family carers of people with MND are more depressed than people with MND overall . As time goes on and dependency increases, family carers exhibit increasing levels of distress symptoms [10, 11]. Studies on the quality of life in MND family carers suggests that perceived caregiver burden can be alleviated by finding positive meaning [12, 13] and by supporting a sense of hope .
Dignity therapy, a brief psychotherapeutic intervention based on empirical research into the concept of dignity at the end of life , has proven successful at increasing hope, sense of meaning and will to live in a palliative care population, where most patients had cancer diagnoses. Dignity therapy offers people with terminal illness the opportunity to create a generativity document. In a recorded interview guided by a counsellor or health care professional, the participant is invited to recount aspects of their life they want remembered, find meaning and purpose to their life, and express final words or advice. The interview is transcribed and edited, and a final dignity therapy transcript is returned to the participant to share with others as they wish.
A pilot study of dignity therapy produced positive results for participants and family members. A heightened sense of dignity was reported in 76% of participants, an increased sense of purpose was reported by 68%, an increased sense of meaning was reported by 67%, and 47% reported an increased will to live . A recent randomised controlled trial reported similar outcomes . In the pilot study, family members were also positive about the intervention, with 95% reporting they would recommend dignity therapy, 78% reporting that it helped them during their time of grief, and 77% believing the document would be a continuing source of comfort .
Nonetheless, because these studies both utilized a primarily cancer population, the results are not transferable to people with MND. Ability to communicate, cognitive acuity, stage of illness, baseline levels of distress and demographic features are some of the factors that may vary in this population and make implementation of dignity therapy difficult. The delivery of the intervention may require modification, i.e. to be performed at an earlier stage in the disease process or by utilizing assisted communication methods. Therefore, feasibility testing of dignity therapy with the MND population is warranted [19, 20].
Moreover, while the previous dignity therapy study focused on the intervention’s positive influence on the bereavement experience of family members, it did not look at how the intervention may affect the carer during the caring experience.
Aims and objectives
The aims of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with MND and their family carers. The specific objectives are to:
Determine whether dignity therapy is likely to increase hope, meaning and dignity in people with MND.
Determine whether dignity therapy is likely to increase hope, and decrease anxiety, depression, and perceived burden in family carers of people with MND.
Determine whether dignity therapy is acceptable to people with MND and their family carers.
Determine whether it is feasible to provide dignity therapy to people with MND.
Pilot methods for a future randomized controlled trial.