Managing the hope for a miracle: a reflection

Keywords: end of life care, palliative care, religion, religious literacy, spirituality.

Mr. T was a young gentleman in his 30s who was diagnosed with a relatively rare cancer. The typical symptoms of end-stage disease developed at an alarmingly rapid rate. Where only a few months prior he was able to exercise regularly and keep up with a busy career, he was now bedbound and unable to move independently. With only a short life expectancy and no available cure, the expert consensus was to focus on best supportive cares. To help achieve this, he was admitted to the local hospice inpatient unit under the care of our medical team.

Repeated attempts at discussing prognosis and end-of-life (EOL) planning were hastily shut down by Mr. T and his family. Instead, they would intentionally steer conversations towards the hope of recovering. Although I felt I had a reasonable rapport with them, I felt that they would circumvent my attempts to approach EOL planning. I felt as if I had exhausted my communication techniques without making any progress in re-calibrating their expectations. I was concerned that the family would be unprepared for Mr. T’s inevitable death and that this could lead to significant emotional turmoil for them. It soon became apparent that their decisions were guided by a deep spiritual belief in a miraculous cure being possible. This became apparent when Mr. T initiated several conversations about faith and how, through religion, divine interventions were made possible. I typically responded to such conversations sheepishly and uncomfortably. My responses were rather superficial as the topic felt too intimate and that it would broach professional boundaries. I felt unskilled and unprepared to effectively discuss spirituality with patients. Unfortunately, the patient also declined the involvement of a spiritual advisor. I started to feel increasingly uncomfortable as Mr. T steadily declined; I felt to lack the expertise to effectively foster an understanding that a miraculous recovery was unlikely.

Over several weeks, Mr. T continued to decline and eventually died in a comfortable manner; however, his family actively resisted the attempts to certify his death. At first, I assumed that this stemmed from emotions of grief and denial. On further consultation with the multi-disciplinary team, it surfaced that this resistance was borne from the family’s desire to have more time for prayers of resurrection. Certification of Mr. T’s death and removal of his body from the hospice were viewed as removing the possibility of a miraculous resurrection. And although the death was eventually certified opportunistically when the family was not praying by his bedside, the apparent discontentment from the family was not directly addressed.

The realisation that Mr. T’s family were praying for his resurrection was quite an epiphany for me. It did not entirely dawn on me how much spirituality and religiosity shaped the medical decisions of my patients. Despite having met with Mr. T and his family nearly every day for several weeks, I never personally attempted to understand their religious beliefs. In retrospect, I wonder if I had missed the ideal window to explore the spiritual beliefs of Mr. T and his family and understand how it shaped their perceptions of EOL? And why did I feel so uncomfortable discussing spiritual beliefs with my patients? The recognition of my own professional limitations prompted a reflection and exploration that has led me to the following insights.

The hope for a miracle can stem from emotions of fear, denial, or optimism; commonly, it is rooted in faith, spirituality and religiosity.¹ There is no homogenous concept or definition of spirituality;^2,3 however, a common vehicle for communicating spirituality is religion. Faith in theological paradigms can shape decisions for all aspects of life including health and EOL decisions.⁴ Religion can intensify the expectation for divine intervention; individuals may believe that they must show unwavering faith to receive a miracle.¹ Furthermore, EOL decisions do not end when one dies, but continue with after-death cares⁴ and in this instance, it manifested as a belief in Mr. T’s resurrection. Spiritual care is a crucial domain of palliative care as it can play a key role in how individuals cope with illness and envision meaning during death and bereavement.⁵

All healthcare staff, including volunteer staff, can convey spiritual care, irrespective of religious background.⁵ Unfortunately, healthcare staff can often be uncomfortable discussing spirituality, as I was.⁵ Spiritual curiosity can be practised by all staff by participating in extensive dialogue in a non-judgmental manner and engaging in shared decision-making. There are numerous methods to display spiritual care but firstly, clinicians are encouraged to understand their own spiritual beliefs, values, and biases to aid them in remaining patient-centred and non-prejudicial.⁶ Regardless of the method that is then utilised, a common skill that is required across most approaches is a willingness to curiously enquire about a patient’s spirituality.

On reflection, I could have approached matters with greater curiosity to understand the faith of Mr. T and his family. For example, I could have openly, but non-judgementally asked Mr. T’s family what a ‘miracle’ meant for them so I could understand what they were expecting and why.^1,2 I could have then used this understanding as a platform to provide a balanced, non-argumentative response to negotiate a patient-centred compromise.¹ Instead of directly challenging their beliefs or trying to present intellectual arguments, I could have explained that although we would also wish for their hope to come true, transferring him to a funeral home would not prevent a miracle. If a miracle were to happen, it would still happen regardless of the actions of the medical team.¹ Another tool I could have utilised is the four-step HOPE questions (referring to Hope, Organised religion, Personal spirituality and practices, and Effects on medical care and end-of-life issues).⁶ Using this tool, clinicians first ask about the sources of hope, meaning and connection that patient’s draw from. They then ask about possible organised religion, personal spirituality, and practices that are employed to help express spirituality. Lastly, patients are asked to contextualise their beliefs as to how it shapes their medical and end-of-life decisions.

Although these are only two of many possible approaches to help initiate the provision of spiritual care, the fundamental requirement is simply a willingness to curiously explore a patient’s spirituality. This in turn helps create an understanding to allow for the delivery of spiritual care to enhance the patient’s end-of-life experience, reduce conflict between the patient, their family, and the treating team.

Reflecting and exploring the route of my discomfort from this experience has helped me discover that it is unrealistic to re-calibrate the expectations of disease trajectory for all patients. For some patients, retaining hope for a miracle, regardless of the source of this hope, can be more vital than formulating a medically realistic and timely end-of-life plan. It is, however, realistic and within my professional scope to provide spiritual care. The delivery of spiritual care need not mediate an adjustment of a patient’s health expectations. Rather, it should help facilitate an empathetic exploration and understanding of the existential values that influence patients’ health decisions. Prior to this experience, providing spiritual care felt foreign to me. I had not received education on the topic from either my undergraduate or postgraduate medical training. I have since made a concerted effort in the skill to sit with my own discomfort and vulnerability to better understand patients and curiously explore their spirituality. Honing the skill of providing spiritual care will require ongoing development and education. I have, however, taken the first steps needed to develop this fundamental skill. It is essential that we, as clinicians, should be prepared to non-judgementally discuss and explore and convey respect and tolerance for divine beliefs, independent of whether there is conflict around the expectation of a miracle.¹

I would like to acknowledge the medical and multi-disciplinary team of Mercy Hospice, Auckland. The clinical supervision provided and team collaboration in the management of this patient and the assistance provided to me to help actively reflect on this case have led to a significant degree of personal and professional growth. I would also like to thank Dr Karen Falloon for the feedback and guidance provided in the development and refinement of this reflection.

Data sharing is not applicable as no new data were generated or analysed during this study.

The author declares that there are no conflicts of interest.

This research did not receive any specific funding.