Supporting hope at the top of life

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

As a nurse with clinical experience working with patients and families at the top of life, I even have long been fascinated by the concept of hope. What is it, how does it work, what’s it for, and – pardon the pun – can we actually ever hope to know it? Finding and even agreeing on a definition of hope within the nursing literature seems elusive. Tanis and DiNapoli (2008) state that hope may be very dynamic and changing in nature, and due to this fact it could be argued that an agreed, fixed definition can never be achieved. This is supported by Herrestad et al (2014) who note that the seek for any consensus on what constitutes hope is effectively futile given the multidimensional nature of the concept.

The complexity of hope was recently made clear to me by the experience of an in depth friend whose husband is undergoing palliative chemotherapy. She told me that she had hoped for many alternative things during her husband’s illness. At first she hoped they’d received the unsuitable results or that the doctors had by some means misdiagnosed her. This was hope that the treatment would work and that they might have the opportunity to face up to the overwhelming adversity they faced. Now she hopes that she is going to have the opportunity to effectively support her husband at the top of his life, and that his last days will probably be peaceful and pain-free. One pair; one disease; so many alternative examples of what “hope” might be.

This sense of “changing hope” is noticed by Hagerty et al (2005) who concluded that the perception of hope changes with the disease trajectory. They also noted that relatives and caregivers have a major role to play in shaping hope for the patient. In practice, nonetheless, supporting hope in a loved one is difficult for family members and caregivers, especially when attempting to strike a balance between honesty and hope (Kellas et al., 2017).

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

The concept that hope is “reality-based” suggests that it should discuss with an achievable goal or goal, moderately than something that could be unattainable. Achievement – ​​and the goal setting that underlies it – is a recurring theme in hope theory, whether it’s psychological, nursing, or conceptual: Goals provide patients with structure and meaning, and hope provides the person with momentum and strength to proceed to act. pursue and imagine in these goals, even within the face of illness or adversity. An essential element of supporting hope in a life-limiting illness is due to this fact setting short-term goals so that they’re realistic and achievable for the patient (Duggleby and Wright, 2005).

The importance of supporting hope comes from the broader advantages it could bring. For a patient scuffling with a life-limiting illness, hope has been found to have an overall positive impact, demonstrating improved quality of life and enabling patients to seek out inner strength, address suffering, and accept their situation (Johnson, 2007). Increased levels of hope have also been shown to correlate with lower reported levels of pain and fatigue (Berendes et al., 2010).

Given the general positive advantages that hope has for the person at the top of life, nurses have a responsibility to support and foster hope when caring for patients during this difficult time. In addition to goal setting, we all know that there are interventions that may strengthen hope in patients. Duggleby (2001) suggests that these may include helping patients verbalize their hopes in a supportive environment through the usage of effective interpersonal skills. It is significant to keep up a coordinated, interdisciplinary approach to communication throughout the patient’s care, enabling effective relationship constructing and openness regarding prognosis and realistic goal setting (Reinke et al, 2010). Hope will also be fostered through strong spiritual beliefs, supportive relationships, and effective coping with pain and other distressing symptoms (Duggleby & Wright, 2005).

As nurses, all of us need to cultivate hope in our patients, whether it’s hope for a cure, hope for death, or hope for the longer term of those they leave behind. The challenge for all of us is to assist patients and their family members feel the advantages that hope can bring, without hiding from them among the difficult truths they have to face.

Bibliography:

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

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

Duggleby, W., Wright, K., (2005) Transforming Hope: how older patients live with hope. Canadian journal of nursing research 37 section 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: Terminal cancer patients’ views on prognosis disclosure. Journal of Clinical Oncology, 23(6): 1278-1288.

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

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

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

Kellas, J. K., Castle, K. M., Johnson, A., and Cohen, M. Z. (2017). Communicatively constructing the sunshine and dark sides of hope: Family caregivers’ experiences during end-of-life cancer treatment. 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 look after cancer and their families need to say? Canadian and Australian qualitative research. BMJ: British Medical Journal (International Edition), 328(7452): 1343-1347.

Tanis, SJ, DiNapoli, PP, (2008) The paradox of hope in patients receiving palliative care: an idea evaluation. International Journal for Human Caring 12 section 1: 50-54

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