The challenges faced by people affected by life-limiting illness can be substantial and overwhelming. Their ability to cope is often dependent on the information and communication that they receive from primary healthcare providers.[1, 2]
Once a diagnosis – or even the prospect of a diagnosis – of a life-limiting illness is made, the person can experience a range of physical, psychological, social and spiritual challenges.[3-6] These challenges can arise from many unique and personal sources, including:[4, 7-12]
- Fear of dying and death
- Pain and the fear of pain
- Uncertainty about the future
- Loss of meaning and purpose
- Loss of spiritual direction or beliefs
- Challenges to beliefs
- Feelings of isolation or loneliness
- Changing relationships and roles
- Fears of suffering
- Feelings of loss of control
- A sense of unfairness
- Feelings of loss of worth
- Loss of the sense of dignity
- Fears of being a burden or a dependent
- Concerns about appearance and body image.
Personal responses to living with a life-limiting illness
Personal responses and experiences with these challenges vary:[3-8, 13]
- People can find peace, purpose and contentment with life
- Relationships with family and friends can get stronger
- Negative emotions can be prominent – leading to sadness, withdrawal, depression and anger
- People can feel helpless, hopeless, a sense of guilt and/or a loss of dignity, resulting in existential distress.
Existential distress is the worry and concern related to confronting personal mortality. The person is faced with issues around the meaning of life, isolation or a threat to their sense of personal worth.[6, 14] People can also experience existential distress if they feel that their personal beliefs are being challenged or they have feelings of loss.[14, 15]
- Consider a person you have cared for who has been diagnosed with a life-limiting illness. What were the main sources of distress for this person and how did you know that they had these concerns?
- What are some of the reasons that people respond differently when diagnosed with a life-limiting illness?
- Moir, C., et al., Communicating with patients and their families about palliative and end-of-life care: comfort and educational needs of nurses. International journal of palliative nursing, 2015. 21(3): p. 109-112.
- Collier, A., Communicating about end-of-life care. Communicating Quality and Safety in Health Care, 2015: p. 93.
- World Health Organization. Definition of Palliative Care. 2017 [cited 2017 March 13]; Available from: http://www.who.int/cancer/palliative/definition/en/.
- Robb, S.L. and D. Hanson-Abromeit, A review of supportive care interventions to manage distress in young children with cancer and parents. Cancer Nurs, 2014. 37(4): p. E1-26.
- Rome, R.B., et al., The Role of Palliative Care at the End of Life. The Ochsner Journal, 2011. 11(4): p. 348-352.
- Murray, S.A., et al., Palliative care from diagnosis to death. BMJ, 2017. 356.
- Benkel, I., H. Wijk, and U. Molander, Challenging conversations with terminally ill patients and their loved ones: Strategies to improve giving information in palliative care. SAGE Open Medicine, 2014. 2: p. 2050312114532456.
- Ciałkowska-Rysz, A. and T. Dzierżanowski, Personal fear of death affects the proper process of breaking bad news. Archives of Medical Science : AMS, 2013. 9(1): p. 127-131.
- 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.
- Weaver, M.S., et al., Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliative medicine, 2016. 30(3): p. 212-223.
- Johns, L., Exploring Psychosocial Care Provision for Palliative Clients Living in a Rural and Remote Context. 2014, Griffith University.
- Fan, S.Y., et al., Psychosocial Care Provided by Physicians and Nurses in Palliative Care: A Mixed Methods Study. J Pain Symptom Manage, 2017. 53(2): p. 216-223.
- Therapeutic Guidelines Ltd. Communicating with the patient in palliative care. Palliative Care 2016 [cited 2018 4 July]; eTG July 2017 edition:[Available from: https://tgldcdp.tg.org.au/viewTopic?topicfile=communicating-with-palliative-care-patient&guidelineName=Palliative%20Care#toc_d1e47.
- Pessin, H., et al., Existential distress among healthcare providers caring for patients at the end of life. Current opinion in supportive and palliative care, 2015. 9(1): p. 77-86.
- Lloyd, A., et al., 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, 2016. 16(1): p. 176.