Living and Dying Well – An Investigation of the Psychosocial and Spiritual Needs of Patients with Terminal Cancer

Lucy Hayden

Each year, over 30,000 people die in Ireland, with approximately a third of deaths caused by cancer.  Many terminally ill patients find themselves in Irish hospitals being treated for the biological aspects of the illness they are suffering from, with less emphasis being placed on their social, psychological, and spiritual well-being.

The PhD scholar Lucy Hayden, received an Irish Research Council Enterprise Award with Breakthrough as the Enterprise partner. Lucy will work with Dr Simon Dunne and Prof Pamela Gallagher in the School of Psychology, at Dublin City University.

Her research will examine the psychological, social, and spiritual concerns of patients with terminal cancer. Lucy will collect data from patients, caregivers, and medical professionals and her findings will inform future policy and healthcare strategies in Ireland.

This research aimed to explore the phenomenon of living with terminal cancer. This larger project consisted of two comprehensive studies.

1. In the first study, a qualitative systematic review of the literature examining the experience of spirituality in terminal cancer patients was conducted. The findings of this literature review suggested that spirituality can positively impact the lives of those living with terminal cancer. It was highlighted that spirituality may act as a catalyst for experiencing a transformation from suffering to serenity as one lives with terminal cancer. Spirituality was experienced in several ways such as being connected to the world and others and being reflective. Through gaining a sense of connection to self and others, individuals living with terminal cancer could live well while making sense of their experience and begin to live with their disease. This study offered novel insights into the experience of living with terminal cancer as it suggested that spirituality may significantly impact one’s experiences and help one cope with terminal disease, enhancing one’s quality of life and ability to live well while living with terminal cancer.
2.  This study focused on exploring the experience of living with terminal cancer from the perspective of terminal cancer patients themselves. The findings highlight that living with terminal cancer is a complex and multidimensional experience and identify six core dimensions of this experience. While living with terminal cancer, participants in this study focused upon ‘Recovering Control in Uncertain Times’, as while they inevitably lost control over some aspects of their lives, they regained control over other aspects of their lives by reframing their expectations of life and acknowledging that their span of control had changed since their diagnosis.

• In relation to ‘Gaining an Increased Awareness of Time’, participants were able to move beyond experiencing existential angst as they had a renewed sense of appreciation for each day and perceived that they were ‘living on borrowed time’, which facilitated them in living their lives with meaning and purpose.
• Despite participants initially struggling with ‘Negotiating a Changing Identity’ as they were experiencing a shift between their past and present identities, they were able to redefine themselves through personal growth and development which enabled them to discover new aspects of their true self which they were previously unaware of.
• Participants reported ‘Finding Comfort through Connection’ as they gained a stronger sense of connection with themselves following their diagnosis. Participants also highlighted gaining comfort through their sense of connection to God or a higher power, and with nature and the world around them which helped them to cope with their illness.
• In relation to ‘Navigating the Social World’, participants posited that while they detached from others who were unable to acknowledge their condition, they focused upon cultivating relationships with those who mattered most to them which helped them to live in a more meaningful manner.
• Participants viewed the experience of terminal cancer as ‘Journeying with Hope’ as their experience of hope was dynamic. They highlighted that living with hope was important in their lives and helped them to live well with their disease.

The findings of this study provide a unique insight into the dynamic nature of hope as one lives with terminal cancer. These findings suggest that individuals may move between states of hopelessness and hopefulness at end of life rather than experience a distinct transition or shift in one direction from hopelessness to hopefulness. Further, the results of this study suggest that hope is a diverse concept in the lives of terminal cancer patients and can mean many things to patients across the terminal cancer trajectory. Based on the findings of this study, hope can be an abstract belief for patients, it can also be an appreciation held by patients of future possibilities that could come to pass (while remaining cognisant of limitations) or it can be a way of strategising specific goals or milestones within the lives of patients as they look to the future.

These findings suggest that there are diverse meanings of hope for those living with terminal cancer in different contexts, and that hope can help those living with terminal cancer to live well despite their poor prognosis.

Practical Implications

The findings of this study may be used to inform or develop spiritual interventions within psycho-oncology to ensure the adequate provision of whole-person care for patients living with terminal cancer. The findings of this study highlight that these interventions may help patients navigate through the existential and spiritual distress that they may experience due to the knowledge of their shortened life expectancy. In this way, patients can feel better supported, have their concerns understood and valued, and live with better wellbeing and a sense of dignity.

The findings of this study have the potential to inform self-management programmes for patients living with terminal cancer as they shine a light on aspects of life that patients desire to control despite their terminal illness, such as adopting a healthy lifestyle, self-monitoring, and meaning-making. Additionally, these findings support the view that educational interventions for patients living with terminal cancer may be beneficial for their quality of life as participants highlighted that educating themselves about their disease was a key factor in enabling them to restore a sense of control in their lives, to feel empowered and to advocate for themselves in coordinating their care and support as they lived with terminal cancer. The recommendation for the provision of these self-management and educational programmes for patients suggests that those living with terminal cancer need to be considered within the cancer survivorship stream; rather than being classed as patients, these people desire to live well, rather than being overlooked due to their short prognosis.

Implications for policy development

The findings of this study can provide direction for future policy development in the area of psycho-oncology and cancer care as they highlight the importance of considering terminal cancer patients as a distinct group given the unique needs that this population has in comparison to other cancer patients. This group of patients requires care beyond psychosocial support due to the increased existential and spiritual distress that they may experience as they live with the knowledge of their terminal diagnosis. The findings of this study can aid policymakers in the development of the updated National Cancer Strategy post-2026 by providing them with a more nuanced understanding of the complexity of the terminal cancer experience, flagging the importance of highlighting the need for enhanced interventions focusing on meeting the physical, psychological, social and spiritual needs of terminal cancer patients specifically through the provision of patient-centered care.

Relevant References:

Hayden, L., Byrne, E., Deegan, A., Dunne, S., & Gallagher, P. (2022). A qualitative meta-synthesis examining spirituality as experienced by individuals living with terminal cancer. Health Psychology Open, 9(2), 20551029221121526.

Hayden L, Dunne S. “Dying With Dignity”: A Qualitative Study With Caregivers on the Care of Individuals With Terminal Cancer.Omega (Westport). 2022 Mar;84(4):1122-1145. doi: 10.1177/0030222820930135. Epub 2020 Jun 3.PMID: 32493167