A summary of the Holistic Care and Quality of Life session

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I wanted to write a ReCCoB blog about the Holistic Care and Quality of Life session, which is closely related to my interests, not least because I was due to present my work in the session.

The session opened with a talk from Dr Frank Brennan giving an overview of the role of palliative care in the management of MND/ALS. Dr Brennan opened his presentation by reading a poem written by Bruce Dawe dedicated to his late wife Gloria, in which he compares their shared experience of terminal illness to white water rafting. During the poem the author laments that he never sought help from the professionals with ‘life jackets’ that may have empowered him to ‘stay afloat’ while struggling with the chaotic experience of terminal illness. The full poem is available here. The point of the poem was to illustrate the great power of palliative care and carers in assisting people who are traveling down the potentially treacherous rapids of illness and caring for a loved one. Dr Brennan explained the ways in which palliative care can systematically assist patients and carers deal with physical, psychological, emotional and spiritual aspects of living with motor neurone disease. Following the great poem with which the talk was opened, Dr. Frank finished by reading some quotes from a short story written by Tony Judt, who had MND and described the illness as progressive impairment without parole.

Bridget Taylor then went on to describe her work in which she broached the difficult subject of sexuality in terminal disease compassionately, and in the words of another delegate, courageously. Bridget’s research involved a Heideggerian phenomenological analysis of qualitative interviews with 27 ‘patients’ and 14 ‘caregivers’. The talk opened with a well-evidenced description of the importance of sexual activity in those who are affected by terminal illness. Importantly, Bridget highlighted that for patients, the term ‘non-invasive ventilation’ is a misnomer as the therapy is invasive in terms of its impact on the lives of people living with MND. For one carer whose partner used NIV at night, there was a real sense that respiratory distress during sex may end her partner’s life, and she definitely didn’t want to have to explain that to her partner’s mother. Sexuality was explained to be a ‘silent bedfellow’ that was still very salient to the lives of the people she interviewed, suggesting that professionals should ‘make the first move’ when it comes to discussing these issues. A delegate, himself living with MND, asked if there was any information about sexuality, which apparently is just around the corner, before adding that if he was to die during sex, that would be OK with him.

Next was my turn to present my research to the delegates. I wasn’t feeling great with jetlag and a poor night’s sleep taking its toll. I presented on our model of psychosocial variables and their impact on quality of life. I explained that past research has shown that quality of life (QoL) was more closely related to psychological and existential factors than functional status, which our research supported. This phenomenon is known as the well-being paradox, and isn’t unique to MND. To summarise our model, anxiety and depression impacted strongly on QoL, even though levels of anxiety and depression are not much higher than we may expect in an age-matched normal population sample. The model identified fatigue and ability to cope as being suitable and realistic intervention points to increase patient quality of life as they have a strong effect on quality of life mediated through interactions with depression, anxiety and social withdrawal.

Following my presentation was another presentation on an aspect of QoL given by Dr. Grosskreutz from Germany. Dr. Grosskreutz’s work deals with health-related quality of life and its relation to social support and functional status. Our different conceptualisations of quality of life meant this work and my study provided juxtaposed findings. In this study, health-related quality of life was highly correlated to functional status (with correlations up to .78), whereas in mine it was less important (not correlating significantly at all with QoL). Social support was shown to be related to HRQoL, as well as functional status.

The stark differences between results when using global quality of life and health-related quality of life measures really drove home the importance of properly defining and measuring quality of life. We would benefit tremendously from the creation of a patient-centered definition of QoL in MND, which I hope will be forthcoming in the future. For the mean time it certainly seems like patients prefer subjective measures over health-related measures.

Anne Holden, a PhD. student at the University of Western Australia presented her research work examining barriers and enablers to decision making from the perspective of healthcare professionals. Anne explained that a proactive approach to decision making with good intra-team communication generally facilitated better decision making, meaning less need for catch-up during illness crises.

To close the session, Rachael Marsden from The Oxford Centre for Enablement described an interesting study in which she assessed whether professionals working with MND experienced compassion fatigue, and how closely their self-ratings were to their actual levels of compassion fatigue. Compassion fatigue has been studied extensively in nursing research and it appears clear that it is something that can affect the mental health of professionals as well as reducing performance, with reports of increased errors in prescribing in health care professionals with compassion fatigue. Thankfully, Rachael’s results suggest that professionals working in MND appear to be managing their compassion fatigue well and there was generally good agreement between self-ratings and the scores taken from an online questionnaire. The encouragingly high response rates Rachael managed to achieve suggests that online questionnaire administration might be a great avenue to explore in the future.

So that’s it, a jet-lagged summary of the holistic care and quality of life session. It was an engaging start to the 22nd symposium, and I’m sure there is plenty more still to come! I’ll try to squeeze some sleep in whenever I can!

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.