‘I am actually doing something to keep well. That feels really good’: Experiences of exercise within hospice care

Introduction

People with advanced cancer encounter complex problems due the disease and its treatment, which impact adversely on their daily lives.^Citation1 In particular, cancer causes functional impairment including a reduced exercise capacity, physical inactivity, and a loss of ability to complete basic and extended activities of daily living.^Citation2 Functional deficits often compound patient suffering through emotional and social distress, physical dependency and a lowering of self-efficacy, all contributing to a poor quality of life.^{Citation3,Citation4} This is especially evident in patients with progressive disease, who face a high symptom burden and often experience a rapid loss of function.

Strategies to improve, maintain, or slow down the decline in, physical function may impact positively on quality of life.^Citation5 Strong evidence supports the use of exercise in people with early stage cancer as a safe, well-tolerated intervention that can reduce symptoms and improve physical and psychological functioning, translating into improvements in overall quality of life.^Citation6 The role of exercise for people with progressive, incurable cancer has received relatively little attention. Studies have shown that physical benefits can be achieved in selected patients,^Citation7 but the focus has been on objective markers of physical performance.^Citation5 As such, the benefits of exercise on broader psychological or existential aspects of function may not have been fully realized, and exercise is not widely regarded as an intervention to improve quality of life. In the context of advanced progressive cancer, relief of suffering may be an equally important focus as any objective functional gain.

When studying the effects of exercise on quality of life, generic health status questionnaires such as the EQ-5D^™ fail to capture the range and depth of patients' emotions, behaviours, and reasoning. In patients receiving palliative care, objective quality of life instruments may also be unresponsive due to floor effects. Patients' own perceptions will provide rich and meaningful data about their experience of exercise. To date, only two studies have investigated experiences of patients with advanced cancer undertaking exercise. The first highlighted the secure and caring group dynamic that an exercise class offered, which enhanced patients' coping.^Citation8 In the second, patients reflected on the structure that physical activity gave everyday life.^Citation9 We report qualitative findings from interviews with patients who participated in an individually tailored exercise programme, offered within a hospice setting. Our aims were to gain insight into the experiences of patients living with cancer taking part in exercise classes, the meaning they attached to participation, and to understand how they perceived participation to have affected their lives.

Methods

We adopted a Heideggerian phenomenological approach with the goal of increasing understanding of the meaning of human experiences through an interpretive methodology.^Citation10 Phenomenology emphasizes understanding more than description to allow a greater depth of insight into the patient's world as they experience it and the meanings they attach to those experiences. The Heideggerian tradition is known as hermeneutic or interpretive; the goal being to increase understanding of the meaning of human experiences or practices.^Citation10 Heidegger^Citation11 describes ‘being-in-the-world’ as we are constantly adapting to situations and the phrase refers to the way human beings exist, act and are involved in the world. He advocates the utilization of hermeneutics as a method founded on the ontological view that lived experience is an interpretive process.

Results

Major theme 1: consequences of attending

The major theme of consequences of attending the gym, as described by participants, could be broadly separated into two emergent themes: physical consequences and psychological impact.

Major theme 2: impact of others

The second major theme emerging from the data was impact of others. Patients in the gym are not exercising alone and all patients mentioned the effect that others have on their experience, both other patients and the impact of staff.

Major theme 3: sense of meaning

The third major theme emerging from the data related to participants feelings towards the gym, and the meaning they associated with it. This theme encompassed attitudes towards exercise in the gym, playing an active role in optimizing their wellbeing, and facing the future.

Discussion

We interviewed patients with advanced cancer participating in a hospice-based exercise programme within palliative care. Patients shared experiences and related exercise to perceived impacts upon their physical condition, psychological state and cognitive functioning, suggesting that participation had a positive effect on quality of life. Major-themes from the interviews were the consequences of attending, both physical and psychological, the impact of others, professional and peers, and the sense of meaning gained through participation. These themes link to known constituents and moderators of quality of life in advanced cancer, including one's health state, relationships, and future outlook.^Citation14

These findings of this qualitative study augment and extend those reported in previous quantitative studies. Participants' experiences regarding physical improvements are in line with improvements in objective physical function found in exercise trials in patients with advanced disease in hospital^Citation5 and hospice outpatient settings.^Citation15 Participants were able to find and convey meaningful benefit from improvements in strength, for example, into an ability to climb the stairs in their home with more ease. According to Cohen and Leis,^Citation14 physical functioning is one of the most important determinants of quality of life. Indeed, patients with advanced disease often report distress from the loss of ability to manage daily activities independently.^Citation4 Patients also described psychological benefits of participation in exercise, and attending the gym impacted positively upon their outlook on both their life and themselves. The sense of achievement described by patients in this study also echoes previous literature.^Citation16 Our findings lend further support to the notion that exercise can provide benefits beyond physical outcomes, and have a positive impact on quality of life through an improvement in psychological status.

The impact of others in the gym, both staff and patients, had an overall positive effect on the experience of exercise. Patients reported that they felt supported by the staff in the gym. Cohen and Leis^Citation14 highlighted quality of care as an important determinant of perceived improvements in quality of life and here the staff role was central to a positive patient experience of exercise. The gym in the hospice is staffed by professionals and volunteers. Both groups contributed to the social environment described, which highlights an important novel role for hospice volunteers. The social dimension of exercising with other patients has been reported in previous studies.^{Citation17,Citation18} Participants spoke about feelings of belonging, membership and a shared experience which emerged from the group setting. One down side of exercising with others in this particular setting was the loss participants' felt when someone died, or was no longer able to attend due to deteriorating health. This theme of shared loss has not to our knowledge been reported in the rehabilitative literature, but is recognized in others with chronic disease, particularly in relation to facing one's own mortality.^Citation19

Interesting findings also came under the theme ‘sense of meaning’. At times patients viewed exercise in the gym as a ‘job’, and their attitude was one of preparedness for the serious task ahead. This was further underpinned by the sense of agency and responsibility patients described in their approach to their time in the gym. Participants expressed strong feelings relating to being actively involved in their own wellbeing. The importance of a sense of reclaimed control has been reported elsewhere^Citation20 as has the negative impact on quality of life when patients perceive a lack of control over their own life.^Citation14 Those attending the gym enjoyed a sense of control when able to attend, as well as when able to choose what type of exercises to do, and what order to do them in whilst in. Whilst this flexibility may compromise the potential for physical benefit and be discouraged in an intensive training setting, it appeared to foster a feeling of ownership which may encourage regular attendance.^Citation21

When considering the future, patients mentioned the importance of prolonging independence and one specifically spoke about delaying dependence on others for as long as possible. Participants talked about how the gym gave them confidence and hope that there was something that could be done to improve their situation. Some patients used battle metaphors and terms such as ‘fight’ and ‘weapon’ when talking about the interplay between their illness and the exercise classes. Patients place great value and importance in attending dedicated spaces for exercise, but this resource is not commonplace and many patients with advanced cancer are not able to access similar services. Patients receiving palliative care often have difficultly accessing mainstream gym facilities, and there are calls to improve provision^Citation22 and staffing^Citation23 of rehabilitation services within the hospice sector.

In early stage or curable cancer, patients often and rightly perceive that their physical status will improve with exercise. In contrast, many patients within this setting were unable to improve physically due to the constraints and impairments of their disease, as well as its progressive nature. The fact that patients continued to exercise, often in the face of deterioration, suggests that physical improvements, in and of themselves, are not the only reason to exercise. Many patients clear reported overall benefit, even though gains were not reflected in their physical performance. The concept of ‘declining despite exercise’ has not received recognition in previous literature but is important for palliative rehabilitation to acknowledge and understand. Additional work to better understand this area would be valuable. Further areas for future research could include exploration of the existential benefits of exercise, e.g. on spirituality and feeling at peace, as well as acknowledging functional maintenance as a successful outcome in the context of advancing illness.

Limitations

There are limitations to the study. One researcher, who was relatively inexperienced and involved in the clinical care of study participants, conducted interviews and analysed transcripts. It is possible that her involvement in participants' clinical care may be impacted upon the conduct of the interviews. However, to mitigate against this, interview techniques were piloted, followed a stringent methodology, and themes were checked and verified independently by the research supervisor. In addition, the gym does not function independently but is part of a large Day Therapy Unit. The interview topics were constructed to focus on this aspect of care, though we acknowledge the possible impact of other services. In some respects, it is incongruous to look at participation in exercise at the gym without recognizing its setting with a palliative care unit.

Conclusion

This study sought to understand the experience of exercise as part of a group in a hospice gym setting, and perceived effects on quality of life in people with advanced cancer. Rehabilitation in cancer care has tended to focus on physical function using objective outcomes. Our findings highlight that exercise has broad effects on quality of life in this setting. New insights into the meanings and values attributed to exercising have emerged, extending beyond physical dimensions of quality of life. Positive experiences of gym attendance arose from perceived gains in psychological health, the impact of others, and being actively involved in their own wellbeing.

Disclaimer statements

Contributors K.T. is the overall guarantor of this manuscript and takes responsibility for the content, including the data and analysis. The original study conception was by K.T. and A.T. K.T. and A.T. contributed to data acquisition. K.T., K.B., and M.M. undertook analysis of and interpreted data. All authors critically revised the manuscript and approved the submitted version.

Funding Karen Turner and Adrian Tookmans' hospice posts are supported by Marie Curie. M.M. is supported by a National Institute for Health Research (NIHR) Clinical Trials Fellowship. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR nor the Department of Health.

Conflicts of interest There are no conflicts of interest to declare.

Ethics approval Thames Valley University, Faculty of Health and Human Sciences. FREC reference number: FREC28/08-09, IRAS reference number: 18261/38306/1/979. East London and the City REC Alpha, 2nd Floor, Burdette House, Mile End Hospital, London. REC reference number: 09/H0704/51. Research and Development Department, Royal Free Hampstead NHS Trust, Pond Street, London NW3 2QG. Research and Development ID: 7861.