Loss is a universal aspect of life-limiting illness. People affected by life-limiting illness face enormous alterations and challenges to many aspects of their lives. To review some of the challenges faced at the time of diagnosis and afterwards, review Module 2: Activity 1 – The challenges faced.
The losses that a person with life-limiting illness and their family can experience include:[1-3]
- Health
- Function
- Mobility
- Body image
- Independence
- Self esteem
- Legacy
- Dreams and ambitions
- Hope
- Life expectancy.
Common psychosocial responses to loss include:[4]
- Sadness
- Anger
- Fear
- Distress
- Despair
- Disbelief
- Anxiety
- Guilt
- Worrying thoughts
- Sleep disturbances
- Social withdrawal
- Decreased ability to maintain an organised lifestyle.
These responses can occur at diagnosis, with the onset of a new symptom, as the person experiences other changes, as their illness progresses or at any time during their illness.[4]
When people are helped to express their grief, at the real losses that have occurred at an early stage of their illness, they are more likely to be able to cope effectively when they are faced with the next set of losses. People who are helped to express their grief are more able to cope. Losses can become a source of fear when support is not provided.[5,6]
People with life-limiting illness can fear for their dependents and others, as well as:[6, 7-10]
- Separation from loved ones, homes, employment, etc
- Becoming a burden to others
- Loss of dignity
- Losing control
- Pain or other worsening symptoms
- Being unable to complete life tasks or responsibilities
- Dying
- Being dead.
Fear can result in physical symptoms.[9]
Thinking Points
- Write a short paragraph describing a situation where you have experienced loss. It could be the loss of a relationship, object or the ability to do something you were once able to do. Within your response answer the following questions:
- How did the loss make you feel (Consider both the physical and emotional responses you experienced)?
- What strategies did you use to manage your feelings?
- Has thinking about this loss triggered any uncomfortable feelings or emotions? If so, what has led you to respond in this way?
- How has reflecting on your own experience of loss helped you to empathise with the losses experienced by a person with a life-limiting illness?
- How can you assist a person with a life-limiting illness to manage the grief and fear that they can experience after a diagnosis?
Please talk to your facilitator, lecturer or friends after this activity if you need to discuss any concerns, thoughts or feelings that you may have. Refer to the list of resources on the Beyond Blue website for other sources of support.
References
- Moon, P.J. 2013. Grief and palliative care: mutuality. Palliative care. 7: p. 19-24.
- Kennedy, G. 2016. The Importance of Patient Dignity in Care at the End of Life. The Ulster medical journal. 85(1): p. 45-48.
- Hartogh, G. 2017. Suffering and dying well: on the proper aim of palliative care. Medicine, health care, and philosophy. 20(3): p. 413-424.
- Lloyd, A., et al. 2016. Physical, social, psychological and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: a serial interview study. BMC Geriatrics. 16(1): p. 176.
- Murray, S.A. and I. Harris. 2013, Can palliative care reduce futile treatment? A systematic review. BMJ Supportive & Palliative Care. 0: p. 1-10.
- Therapeutic Guidelines. 2023. Loss, grief and bereavement. Melbourne.
- Renz, M., et al. 2018. Fear, Pain, Denial, and Spiritual Experiences in Dying Processes. The American journal of hospice & palliative care. 35(3): p. 478-491.
- Fernandes-Taylor, S., T. Adesoye, and J.R. Bloom, Managing psychosocial issues faced by young women with breast cancer at the time of diagnosis and during active treatment. Current opinion in supportive and palliative care, 2015. 9(3): p. 279-284.
- Gorczyca, R., R. Filip, and E. Walczak, 2013, Psychological aspects of pain. Ann Agric Environ Med. Spec no. 1: p. 23-7.
- Fringer, A., M. Hechinger, and W. Schnepp, 2018, Transitions as experienced by persons in palliative care circumstances and their families – a qualitative meta-synthesis. BMC palliative care. 17(1): p. 22-22.