We present a 45-year old Hindu gentleman from the Indian subcontinent, who was married, with a young child. In 2011, he was diagnosed with metastatic neuroendocrine tumor (NET) of unknown primary. He had painful sub-cutaneous, bone, liver, lung and cardiac metastases, having suffered severe pain in his torso, as well as his skin, well before diagnosis. Treatment over the years had included somatostatin analogues (such as octreotide), everolimus, chemotherapy and interferon alpha. In 2015 his cardiac tumor increased in size, he became very low, was started on citalopram and referred for palliative input. Although he was offered further chemotherapy in 2017 for aggressive liver involvement, he declined this. Initially frightened to come to the hospice as he associated this with dying, he eventually agreed to be admitted for ‘symptom control’ in June 2017 after benefitting from reflexology as an out-patient. On admission, he was emaciated and described ‘pain all over, worst in his chest. He had difficulty sleeping, anxiety and impaired physical function, all symptoms associated with a reduced quality of life (QOL) in recurrent NET [1]. The ‘total pain’ resolved once he was enabled to speak of his fears, particularly of sudden death due to cardiac involvement. He denied spiritual and cultural needs. Topical diclofenac gel and gabapentin at therapeutic doses helped. He then had 3 months at home with his family, during which his pain was relatively well controlled. Unfortunately during his final few months the pain escalated. He was admitted to the hospice on three occasions. At this stage, communication was more limited as he spoke in his mother tongue with his wife translating, having previously spoken good English. Opiate switching helped, at least initially, but escalating oxycodone doses eventually led to hallucinations, indicating opiate toxicity. This resolved on reducing oxycodone by 25%. Diamorphine was effective pre-movement (small volume needed for injection). Background pain was still unacceptable as our patient was not comfortable in bed, but now too weak to sit. Low dose ketamine (50 mg) was added with a further one third reduction of the oxycodone and this helped. Significantly a few days before he died, his wife shared that they had at last managed to contact the Hindu priest in India by phone. It was only then that things began to change. The patient himself became more peaceful, specifically asking his wife to stay with him until Sunday. In fact he died on the Saturday night, with his wife present at the hospice, according to his wishes. ‘Total pain’, that is when physical, psychological, social and spiritual elements combine to give the patient the unpleasant experience of ‘pain all over’, was a significant factor in this case and resolving fears and spiritual issues were key.
