In February 2009, national attention was drawn to the case of Caroline Petrie, a community nurse suspended after offering to pray for a patient. (2) She was subsequently offered her job back on the proviso she asked patients about their spiritual needs first before offering to pray for them. Her employers stated she had 'failed to demonstrate a professional commitment to equality and diversity by offering her prayers'.
The General Medical Council states that doctors 'must not discriminate against patients by allowing their personal beliefs to adversely affect their professional relationships'. (3) The following case study illustrates powerfully how the free discussion of spiritual matters coupled with excellent clinical treatment leads to the provision of truly patient- and family-centred holistic care.
A previously healthy nine-week-old female infant suffered a cardiac arrest while being carried by her mother in the market. A cardiac output was obtained following two cycles of CPR. Initial investigations revealed no cause for the event and despite normalisation of her cardiorespiratory parameters, weaning from the ventilator was not possible due to the development of seizures.
After 36 hours, the baby was transferred to the nearest paediatric intensive care unit. Three days after the original event, she developed cerebral oedema causing significant neurological deterioration. Following extubation, she was found to have spastic quadriplegia, cortical blindness, a bulbar palsy and intractable seizures. Tragically, she died from pneumonia six weeks later.
The parents' perspective
Twelve hours after we had set off to the market with Eva Grace, our daughter, we sat in the intensive care unit helplessly watching the monitors. The resident doctor stayed with us throughout the night. She explained that medically everything was being done appropriately, but that as a clinician she could only treat with medicine; it was God alone who could bring healing. She spoke of her own faith and we prayed together. This brought tremendous comfort and perspective to the situation: 'All the days ordained for me were written in your book before one of them came to be'. (4)
Initially it seemed that Eva would have some degree of cerebral palsy, but catastrophic neurological degeneration changed the picture radically. We struggled to understand why, following a seemingly successful resuscitation, our daughter should be so disabled. Whilst trusting that God had a 'perfect plan for her life', (5) we struggled with our broken dreams. The uncertainty was most difficult to deal with.
Following an apparent stabilisation, Eva would then suffer status epilepticus or a chest infection. It was subsequently decided that further intensive care admission was not going to be appropriate. On several occasions, members of the nursing staff comforted us with Bible passages and personal examples of God's faithfulness.
As the weeks passed, a neurological consultation was arranged at the nearest teaching hospital. When we saw the professor, he reminded us to see our daughter as God created her to be. He explained that we consist of body, soul and spirit and although Eva's body was badly broken, she was still the same child God had made her to be. This helped immensely as we prepared to return home for what we accepted would be a limited time. Sadly however, our plans did not come to pass as Eva developed pneumonia complicated by septic shock, and died in our arms.
Faith in practice
These events took place in Malawi and subsequently, following transfer, in Johannesburg. In such cultures, discussions about spirituality and God are often parts of daily life. Had we been in the UK, it is unlikely that the medical and nursing staff would have felt able to share their faith with us. Medically, the situation was entirely futile and if there had been any possible intervention, at any cost, we would have wished to pursue it. If our only source of hope or faith had been in modern medicine, we would have been utterly disillusioned!
Instead, we were given the support we needed to accept her illness as terminal, to continue to see her as a gift from God (6) and to observe the many ways in which God was honoured through her life.
We chose the name 'Eva' which means 'giver of life' (7) because we prayed that through her life, many would come to see true spiritual life. Her second name 'Grace' was a reminder of God's undeserved favour to all of us. We believe that throughout her life and especially during her illness, many people came to hear about the goodness of God.
Since 1948, the World Health Organisation has defined health as 'a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity'. (8) This definition is oft quoted but do the implications truly underpin medical practice? We thank God that, in our experience, the clinicians were truly able to offer us holistic care.