In preparation for this week’s #OTalk Kim Stuart @KimStuartOT would like us to think about our role in end of life care.
Dying matters – the role of the occupational therapy in end of life care
I would like to start by asking you some questions :
…..”What defines you?” “What is that you see when you look in the mirror?”
Photographer Tom Hussey photo series captures Reflections of Young and Old http://www.lifebuzz.com/reflections/#!PkaTW and is a poignant reminder that occupation matters and is a constant thread through life as you approach death.
So if as occupational therapists we believe that occupations are the fabric of life (Hammell 2008, Wilcock 1998) then should it follow that they are also the fabric of death and of equal concern for those approaching end of life and our profession.
End of life is an inclusive term that encompasses a range of dying trajectories and can be considered from a medical perspective as the symptoms or impairments resulting from the underlying irreversible disease that require formal or informal care and can lead to death (National Institute of Health 2004).
In the UK between 2012 and 2030 the annual number of deaths is predicted to increase by 17%.People are dying at an older age with increasingly complex health and social care needs and indications are that there is little or no increase in public spending in the provision of care; therefore innovation and flexible solutions to delivering and meeting the public’s expectation of high quality care that addresses their needs is a priority. How can occupational therapy be part of this delivery of care and what should the focus of our services be?
The knowledge that you have made the transition to end of life can have a profound effect on a person’s self worth, expression, identity and occupational life (Unruh and Elvin 2004). In writing about her experiences of living with cancer Diana Rabinovitch’s Take off your Party Dress catalogues the impact of diagnosis, treatment and care on her life “I want my life back….They say it’s an intrusive disease, but they don’t explain that part of the intrusion is because of the nonstop medical appointments, the incessant disruption of my hard worn routines” As l read her autobiography it reminded me of many conversations I had in practice working with people approaching death; seeing the impact of occupational losses compounding and worsening life before death.
In a moving article discussing personal loss Forhan (2010) using the work of Hoppes (2005b) gives a personal insight into occupational transitions of loss and bereavement. There are 4 phases of occupational transition explored
- Occupational maintenance where by occupation is maintained whilst the gravity of the loss is denied
- Occupational dissolution whereby everyday occupations become devalued and may lose meaning
- Occupational ambivalence where participation in occupation is part of a routine but lacks emotion/meaning or connection to the occupational form
- Occupational restoration and adaptation is concerned with re-engagement in living; integration of loss into new/existing occupations to celebrate and achieve a cohesion with “new” self.
So I ask you reflect on working with patients past or present who may have been approaching death, whether living with a chronic illness, elderly or acutely unwell or perhaps working with someone who has been bereaved and consider how this impacted on their occupation and what you did to address it.
All too often I have seen these groups of people overlooked by occupational therapy when so much can be done to enable people to live the fabric of their life.
The questions for the chat will be around
- What experience of working with people who are either approaching end of life or bereaved have you had?
- What do you think the current role of occupational therapy is in working with these groups of people?
- What are the challenges and opportunities for occupational therapy to engage with this group of people?
- What do you need to be able to do this?
Hoppes, S. (2005b). When a child dies the world should stop spinning: An autoethnography exploring the impact of family loss on occupation. American Journal of Occupational Therapy, 59(1), 78–87.
Forhans, M. (2010) Doing, Being and Becoming: A Family’s Journey Through Perinatal Loss American Journal of Occupational Therapy, January/February 2010, Vol. 64, 142-151. doi:10.5014/ajot.64.1.142
Unruh A and Elvin C (2004) In the eye of the Dragon: women’s experiences of breast cancer and the occupation of Dragon Boat racing. Canadian Journal of Occupational Therapy 71 (3) pp 138-149