Introduction

My name is Lizzie Martin and I am a third year occupational therapy student. I have created this blog to explore an area I am very passionate about, occupations for individuals at the end of life. I lost my brother, Paul, to cancer on 26 September last year and saw firsthand how his occupational engagement and participation were affected. My blog will discuss the themes I found to be most obvious during the last three months of Paul’s life and will include excerpts from texts I received from him and personal communication with practicing occupational therapists. Paul was incredibly brave and it was a privilege to see how he coped with his illness and approaching death. I am very proud to be able to share his occupational journey.

Prioritizing Occupations

When individuals are approaching the end of their life the occupations they choose to engage in take on a different significance. The dying experience heightens the meaning of occupational choices and occupation helps to facilitate a good dying experience (Jacques & Hasselkus, 2004). 

I could see this a lot with Paul as what would be considered everyday occupations took on greater meaning. 

19 August 2014 
“Fantastic that you just walked into my flat. It was special hanging up my shirts, punching holes in my belt, sharing slush puppies with me, driving me around”

The simple occupations between Paul and family members meant so much more as any time spent together was precious.

This is common for those approaching death:

“Many people at the end of life just want to spend time with loved ones” (B. Strevens, LOROS Hospice, personal communication, 15 June 2015).

The importance of this was also clear when all eight siblings went out for a meal together for the first time in seven years.

5 August 2014 

“Fantastic night. The Martins, all of us around a table sharing a meal. Unforgettable”

La Cour, Nordell & Josephsson (2009) report that the knowledge of approaching death gives  individuals a different focus in life that is experienced as enriching and also gives more time to be with family. This was definitely the case with Paul. As my younger brother lives in Australia and I am in New Zealand, the time that all siblings get together is extremely rare and only eventuated on this occasion due to Paul’s illness. 

Eight siblings out for a meal - 5 August 2014

Paul with his five brothers and two sisters after our meal

Developing a daily rhythm

Continuity and routines are highly valued because they provide a sense of security in the lives of those with cancer (Keesing & Rosenwax, 2011; La Cour, Nordell & Josephsson, 2009). With Paul, one of his favourite routines was sitting in the garden with my mom chatting and drinking tea.

11 July 2015 
“I’m up and about so should be at moms around 10 for a cuppa in the garden”

It was a ritual between Mom and Paul. Even when it was a bit cold they would sit out there in their coats so Paul could smoke and they could spend time together. 

Mom and Paul in their favourite place - Mom's back garden

Paul also spent a lot of time at home playing cards with his son and sitting in the garden. Again it’s clear that these simple activities gave him a lot of pleasure and satisfaction.

8 July 2014
“Watered my plants in greenhouse, sat in communal garden on my own enjoying the weather with the birds singing to each other in the trees and the sound of lawnmowers. Good old England”

La Cour, Nordell & Josephsson (2009) speak of how this continuity and ordinariness is often combined with novel activities to provide a daily rhythm. 
Such a novel activity for Paul was to attend the T20Blast cricket with my nephew, an event that lasted all day and ended with the Birmingham Bears winning the trophy in the evening. 

26 August 2014 
“Cricket was fab, though I’m struggling to recharge”. 

Paul was so wiped out from his time at the cricket that he wasn’t able to leave the house for the three days following it, but he was determined to last the whole day. 
He made huge efforts to continue his favoured occupations and Park Lala & Kinsella (2011) state that occupation is very important in making death better. Terminally ill individuals who were free to choose lethal intervention reported that decreased ability to participate in activities that make life enjoyable was a major factor in deciding to hasten death.

Paul with our nephew, James, before
the cricket at Edgbaston

Impact of symptoms on occupation

25 July 2014  
“Struggling like heck today”

14 August 2014 
“Doesn’t take much to wear me out these days”

15 August 2014  
“Very drowsy today. Morphine patches taking pain away.”

30 August 2014 
“Vile day. So so tired”

All of these texts show the impact Paul’s symptoms were having on him and therefore his occupations. He often had something planned for the day but was too fatigued to manage it, so ended up spending more and more time at home. La Cour, Nordell & Josephsson (2009) found that end of life individuals living in the community spent an average of 87% of their time at home. 
Keesing & Rosenwax (2009) tell us that dying people experience disruption, disengagement and deprivation as usual roles and activities are eroded.

“Other occupations start to fall by the wayside as patients become too fatigued to do them – the housework, the garden” (E. Barrett, Te Omanga Hospice, personal communication, 10 June 2015).

Maintaining independence

Kaye (2006) reports, “Loss of independence and role can result in social death prior to biological death. Occupational therapy can help a person to adopt new and appropriate functions and roles and to maintain self-esteem” (p.214).

I was able to witness this as the occupational therapist from John Taylor Hospice assisted Paul.

21 August 2014

“Beth the OT will be here. You can be here too...part of your training!”

Beth was able to supply equipment to Paul and also educate him regarding shortness of breath and fatigue management. Due to this intervention Paul was able to maintain independence with self cares until a few days before he died.

This is an area which is commonly very important for end of life individuals:

“Facilitating patients to have control is critical” (T. Naismith, LOROS Hospice, personal communication, 17 June 2015).

“For some patients maintaining a sense of ‘normality’ and trying to carry on with their usual routines is important, especially self care” (R. Harrison, LOROS Hospice, personal communication, 17 June 2015).

These points are addressed in the NZAOT palliative care position statement 

https://docs.google.com/viewer?url=http://www.otnz.co.nz/assets/Uploads/pdfs/Position-statements/PositionStatement-OccupationalTherapyandEndofLifePalliativeCare-2013.pdf

The following presentation gives an overview of the benefits of occupational therapy to individuals in palliative care.

https://www.youtube.com/watch?v=oxPlXxzyErA

Making arrangements for loved ones after death

When Paul knew he only had a few months left to live his occupations were focused on ensuring those closest to him would be taken care of after his death. For this reason he planned his funeral. 

25 July 2014 
“Am meeting up with Andy tomorrow to go over funeral arrangements which will be a new one for me”.

Hunter (2008) tells us the most common reason for making plans is to make it easier for family and friends. This was definitely the case with Paul. He specified exactly what he wanted for his funeral and all his arrangements were focused on making it as easy as possible for our mother. Occupations such as this help prepare individuals for death (Trump, Zahoransky & Seibert, 2005).

Paul also gave a lot of thought as to who he gave his personal belongings to such as his prized football and cricket shirts. Objects collected over time embody a sense of life and lived experiences and as individuals plan who will receive certain belongings, the items become a reconstruction of the life narrative that continues after death (Hunter, 2008). 

Coping with the reality of approaching death

It is common to focus on people’s ability to cope and accept death rather than how they choose to continue living (Benthall & Holmes, 2011). 
With Paul I noticed how he was accepting of his approaching death, but also that he was very definite in how he intended to spend his remaining time. He was told by his doctor that he would have a slow and painful death and so one of his main occupations was protecting our mother as much as possible:

15 July 2014
“Mom won’t get any bad news from me. I’m not worried at all. I had a couple of wobbly hours after seeing the doc. The truth can be painful. Back to normal now. I know what I’ve got ahead of me and I’ll definitely have more good days than bad and plenty of days drinking tea with mom in the garden”.

Rachel Atkinson of LOROS Hospice stresses the importance of "normalising as much as possible the dying process, remembering we only have one chance to get it right" (personal communication, 18 July 2015).

Impact of hospice admission on occupations

Paul was admitted for a week’s respite at the hospice and it was clear what a huge impact this had on his occupations. The staff were extremely caring but he found it very hard to cope as he felt he lost his independence and chose to return home after a few days. 
On his first morning back home he text:

10 September
“What a wonderful day waking up in my own bed. No one in my face. Just going at my own pace. It is so much better”

Burkhart et al., (2011) comment that the pleasure and sense of self worth when participating in familiar occupations, even as basic as making a cup of coffee when you want it can’t be measured.
With inpatients, symptom and pain control becomes a priority and there tend to be fewer resources available to support a dying person to continue participating in their usual roles and occupations (Ashworth, 2013). 

“I’m aware that the ward routine may limit engagement in occupations” (R. Harrison, personal communication, 18 June 2015).

“Frequently we are too focused on the nursing/medical side and forget all the other things” (E. Barrett, personal communication, 12 June 2015).

What did I learn from Paul?

I was very involved in Paul’s life as he faced his imminent death and I learnt a great deal about myself and how I want to treat clients when I am practicing. For example, witnessing Paul with a variety of health professionals made me realise how important building rapport is. Those that he trusted and had confidence in were able to make a big difference to his quality of life whereas others weren’t able to help him at all as he had no faith in them.

Paul also taught me how much humans are occupational beings. For the whole time I was in the UK one of his daily occupations was telling me he loved me. For the last few days of his life he was in the hospice, mostly asleep and unable to talk. On the day before he died I went to say goodbye at the end of a visit. Paul opened his eyes, recognised me, gave me a big smile and pursed his lips to give me a kiss. Even at this stage of his life and illness he still managed to find a way to tell me that he loved me.

Whalley-Hammell (2008) talks of individuals having the right to engage in meaningful occupations that contribute to their own well being. People who are dying should have the same rights as others, no matter what their prognosis. Individuals with terminal illness may well experience a decline in bodily function and performance skills but this doesn’t mean that their occupations should just be discarded and put in the “too hard basket”. 

An example of how clients can still engage in their chosen occupations can be seen in the following You Tube clip from Mary Potter Hospice

https://www.youtube.com/watch?v=yPdwrKrTIAo

Occupational therapists can still optimise quality of life and maximise opportunities for occupational engagement. As Warne and Hoppes (2009) tell us “occupational therapy with patients who are dying is not futile” (p. 310). 

It is important that all occupational therapists are aware of this, not just those working in specialist palliative care settings. Client deaths occur in many areas of practice but if there is an emphasis on occupational engagement then quality of life can be improved, as can the dying experience.

I was privileged to see this first hand with my own brother and hope to put all he taught me into my own practice. 

References

Ashworth, E. (2013). Utilizing participation in meaningful occupation as an intervention approach to support the acute model of inpatient palliative care. Palliative and Supportive Care, 12(05), 409–412. doi:10.1017/s1478951513000734

Benthall, D., & Holmes, T. (2011). End-of-life care: facilitating meaningful occupations. OT Practice, 16(9), 7-10.

Burkhardt, A., Ivy, M., Kannenberg, K. R., Low, J. F., Marc-Aurele, J., Youngstrom, M. J., & DeLany, J. (2011). The Role of Occupational Therapy in End-of-Life Care. American Journal of Occupational Therapy, 65,S66-75. doi:10.5014/ajot.2011.65S66

Hunter, E. (2008). Legacy: the occupational transmission of self through actions and artifacts. Journal Of Occupational Science,15(1), 48-54. doi:10.1080/14427591.2008.9686607

Jacques, N., & Hasselkus, B. (2004). The nature of occupation surrounding dying and death. OTJR: Occupation, Participation & Health, 24(2), 44-53. doi:10.1177/153944920402400202

Kaye, P. (2006). Notes on symptom control in hospice and palliative care. Machiasport, ME: Hospice Education Institute. 

Keesing, S., & Rosenwax, L. (2011). Is occupation missing from occupational therapy in palliative care? Australian Occupational Therapy Journal, 58(5), 329-336. doi:10.1111/j.1440-1630.2011.00958.x

La Cour, K., Nordell, K., & Josephsson, S. (2009). Everyday lives of people with advanced cancer: activity, time, location, and experience. OTJR: Occupation, Participation & Health, 29(4), 154-162. doi:10.3928/15394492-20090914-03

Park Lala, A., & Kinsella, E.A. (2011). A phenomenological inquiry into the embodied nature of occupation at end of life. Canadian Journal of Occupational Therapy, 78, 246-254. doi:10.2182/cjot.2011.78.4.6

Trump, S.M., Zahoransky, M. & Seibert, C. (2005). Occupational therapy and hospice.  American Journal of Occupational Therapy, 59(6), 671-675. doi:10.5014/ajot.59.6.671

Warne, K., & Hoppes, S. (2009). Lessons in living and dying from my first patient: an autoethnography. Canadian Journal of Occupational Therapy, 76(4), 309-316. doi:10.1177/000841740907600410