Written by Dr Julie Brose, Senior Research Associate at the University of Bristol and the National Institute of Health and Care Research (NIHR) Applied Research Collaboration West.

“Rehabilitation in palliative care? But I have advanced cancer!” The concept of palliative care rehabilitation may appear contradictory given palliative care’s focus on life-limiting illness and the association of rehabilitation with improving an individual’s abilities. However, palliative care and rehabilitation have a similar overarching goal: improving quality of life by identifying and addressing barriers or concerns in daily life [1,2]. Palliative care seeks to reduce suffering, the primary cause reported in medical assistance in dying data as the inability to participate in meaningful activities [3,4]. Rehabilitation’s overarching goal is to optimise function [5], and people want to continue engaging in everyday life whilst living with advanced cancer [6,7]. However, how do people participate in meaningful activities despite and amid experiencing symptoms that impact their abilities? How do they continue adapting in order to keep doing what is important to them? What does this look like for adults under 65 in the middle of parenting, work, and other commitments?

To understand the everyday life experiences of working-aged adults living with advanced cancer, I interviewed eight adults aged 40 to 64 who were living in smaller towns and rural communities in Western Canada [6,8]. To explore how their experience of daily life changed as their cancer progressed, I spoke with each of these individuals up to 11 times over 19 months until death or data saturation occurred.

This study found that people intentionally wanted to participate in meaningful everyday activities across the advanced cancer trajectory. For some, this meant doing things with their family, friends, or pets; for others, this meant continuing to work or trying to be as independent as possible with self-care tasks. What they deemed important was linked with what motivated them (i.e., their volition: interests, values, sense of capacity, and self-efficacy) and impacted by their environment. Participants had to adapt what and how they did things as their cancer progressed and as they sought to continue doing those activities that were important to them.

Palliative rehabilitation can help a person continue participating in everyday activities by optimising the individual’s function. However, ongoing participation amid cancer progression requires continual adaptation to keep engaging in what is important. Adaptation often occurs through doing activities and may relate to how a task is done (e.g. wearing loose clothing to dress independently), substituting one part of a task (e.g. using an electric razor instead of a blade to shave), substituting one activity for another (e.g. going for a drive through the mountains instead of a hike), shifting from more to less involvement (e.g. online shopping instead of in-person shopping), or reframing their perspectives on their experiences (e.g. valuing the ‘little things’ in life). One participant described the impact that obtaining a power wheelchair had on his life, saying it:

has made a big difference… I know that I’ve lost some of my independence and that’s fine, it’s going to happen, and there is not much you can do about that. But that being said, I’ve also been able to regain some of my independence, which has been fantastic, whether it be getting a glass down [from the cupboard] or rolling out to the porch lift and going outside, you know, out to the driveway and watching the kids paint with chalk or draw with chalk or do what-ever they want to do, and be part of their lives and take it all in again, it has been great. (Peter, Interview 3)

Although medical management and symptom control are central components of palliative care, rehabilitation should also be a key objective. We need to integrate rehabilitation into palliative care services to optimise a person’s abilities and, thus, their quality of life. What would you want your everyday life to look like if you only had a year left to live, and how could this be facilitated?

References

1. World Health Organization Regional Office for Europe. Policy brief on integrating ehabilitation into palliative care services. 2023. Copenhagen. https://apps.who.int/iris/handle/10665/366505
2. Timm H, Thuesen J and Clark D. Rehabilitation and palliative care: histories, dialectics and challenges [version 1; peer review: 3 approved]. Wellcome Open Res 2021, 6:171. DOI: 10.12688/wellcomeopenres.16979.1.
3. Health Canada. Fourth annual report on Medical Assistance in Dying in Canada 2022. 2023. Ottawa: Health Canada.
4. Oregon Health Authority. Oregon Death with Dignity Act: 2022 Data Summary. 2023.
5. Negrini S, Selb M, Kiekens C, et al. Rehabilitation definition for research purposes. A global stakeholders’ initiative by Cochrane Rehabilitation. Neurorehabil Neural Repair 2022; 36: 405-414. DOI: 10.1177/15459683221093587.
6. Brose JM, Willis E and Morgan DD. The intentional pursuit of everyday life while dying: A longitudinal qualitative study of working-aged adults living with advanced cancer. Palliat Med 2023; 37: 1210-1221. DOI: 10.1177/02692163231180911.
7. Morgan DD, Taylor RR, Ivy M, et al. Contemporary occupational priorities at the end of life mapped against Model of Human Occupation constructs: A scoping review. Aust Occup Ther J 2022; 69: 341-373. DOI: 10.1111/1440-1630.12792.
8. Brose JM, Willis E and Morgan DD. Occupational adaptation for adults living with advanced cancer: A phenomenological longitudinal study. Aust Occup Ther J 2023: 1-12. DOI: 10.1111/1440-1630.12908.