Supporting hope at the end of life

Paula Gawthorpe, Nurse Lecturer, School of Health and Social Work, University of Hull

As a nurse with a clinical background of working with patients and families at the end of life, I have long been fascinated by the concept of hope. What is it, how does it work, what does it do, and – pardon the pun – can we ever really hope to understand it? Finding, or indeed agreeing on, a definition of hope within the nursing literature seems elusive. Tanis and DiNapoli (2008) state that hope has a very dynamic and changing quality, and as such it could be argued that an agreed constant definition can never be achieved. This is supported by Herrestad et al (2014), who note that seeking any sort of consensus as to what constitutes hope is in fact futile, given the multi-dimensional nature of the concept.

The complexity of hope was reinforced to me recently through the experience of a close friend whose husband is undergoing palliative chemotherapy treatment. She told me that she has hoped for many different things along the course of her husband’s illness. Initially, she had hoped that they had been given the wrong results or that the doctors had somehow made a mistake in diagnosis. This changed to hoping that treatments would be effective, and that they might defy the overwhelming odds that they faced. Now, her hope is that she can effectively support her husband at the end of life, and that his final days will be peaceful and pain free. One couple; one disease; so many different examples of what ‘hope’ can be.

This sense of ‘shifting hope’ is recognised by Hagerty et al (2005), who concluded that perceptions of hope change along the disease trajectory. They also noted that relatives and carers have a significant role to play in influencing hope for the patient. In practice however, supporting hope in a loved one is difficult for relatives and carers, particularly when trying to strike a balance between honesty and hope (Kellas et al, 2017).

In relation to palliative care nursing, Kay Herth suggested that hope was “An inner power that facilitates the transcendence of the present situation and enables a reality-based expectation of a brighter tomorrow for self and/or others.” (Herth 1993, p. 546)

This idea that hope is ‘reality-based’ suggests that it should relate to an achievable aim or goal, rather than something which may be unattainable.  Attainment – and the goal setting that underpins it – is a recurrent theme within hope theory, be that from a psychological, nursing or conceptual basis, Goals provide structure and meaning to patients, and hope provides the individual with the impetus and force to continue to aim for and believe in those goals, even in the face of illness or adversity. An important element of supporting hope in life-limiting illness is therefore the setting of short term goals, ensuring that these are realistic and achievable for the patient (Duggleby & Wright, 2005).

The importance of supporting hope is underpinned by the wider benefits it can bring. For the patient facing a life-limiting illness, hope has been found to have an overall positive effect, demonstrating improvements in quality of life and enabling patients to find inner strength, cope with suffering and accept their situation (Johnson, 2007).  Elevated levels of hope have also been shown to correlate with lower reported levels of pain and fatigue (Berendes et al, 2010).

Given the overall positive benefits of hope for the individual at the end of life, nurses have a duty to support and foster hope when caring for patients at this difficult time. In addition to goal-setting, we know that there are interventions which can support hope in patients. Duggleby (2001) suggests that these can include helping patients to verbalise their hopes in a supportive environment through the use of effective interpersonal skills. It is important to maintain a co-ordinated interdisciplinary approach to communication throughout the patients’ care, allowing for effective rapport-building and openness in respect of prognosis and realistic goal-setting (Reinke et al, 2010). Hope can also be encouraged through strong spiritual beliefs, supportive relationships and the effective management of pain and other distressing symptoms (Duggleby & Wright, 2005).

As nurses, all of us want to nurture hope in our patients, whether that is hope for a cure, hope for a good death or hope for the future of those they leave behind. The challenge for us all is helping patients and their loved ones feel the benefits that hope can bring, without hiding from them some of the difficult truths that they have to face.

References:

Berendes, D., Keefe, F.J., Somers, T.J., Kothadia, S.M., Porter, L.S., Cheavens, J.S. (2010) Hope in the context of lung cancer: relationships of hope to symptoms and psychological distress. Journal of Pain and Symptom Management 40(2):174-182

Duggleby, W., (2001) Hope at the end of life. Journal of Hospice & Palliative Nursing 3(2): 51-64

Duggleby, W., Wright, K., (2005) Transforming hope: how elderly patients live with hope. Canadian Journal of Nursing Research 37(2): 70-84

Hagerty, R. G., Butow, P. N., Ellis, P. M., Lobb, E. A., Pendlebury, S. C., Leighl, N., Tattersall, M. H. N. (2005). Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis.  Journal of Clinical Oncology, 23(6): 1278-1288.

Herth K , (1993) Hope in the family caregiver of terminally ill people. Journal of Advanced Nursing 18: 538-548

Herrestad, H., Biong, S., McCormack, B., Borg, M., & Karlsson, B. (2014). A pragmatist approach to the hope discourse in health care research.Nursing Philosophy, 15(3):211-220. doi:10.1111/nup.12053

Johnson, S., (2007) Hope in terminal illness: an evolutionary concept analysis. International Journal of Palliative Nursing, 13(9): 451-459

Kellas, J. K., Castle, K. M., Johnson, A., & Cohen, M. Z. (2017). Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers’ Experiences during End of Life Cancer Care. Behavioral Sciences (2076-328X), 7(2), bs7020033-bs7020033. doi:10.3390/bs7020033

Kirk, P., Kirk, I., & Kristjanson, L. J. (2004). What do patients receiving palliative care for cancer and their families want to be told?A Canadian and Australian qualitative study. BMJ: British Medical Journal (International Edition), 328(7452): 1343-1347.

Tanis, S.J., DiNapoli, P.P., (2008) Paradox of hope in patients receiving palliative care: a concept analysis. International Journal for Human Caring 12(1): 50-54

 

 

 

 

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