My Life—My Death

This 54–year old man had fallen out of a tree at age nine years with subsequent paraplegia resulting from a fracture of his fourth thoracic vertebra.

Despite this handicap he achieved a high level of education to university level and went on to be a strong advocate for people with disability in Australia.

He was very widely travelled with a diverse range of interests and hobbies including a great love of music, a knowledge of sound systems and he was especially passionate about fine food and wines. He lived alone, had never married but had a large circle of friends and particularly valued his relationships with two close friends who became his Powers of Attorney (PoA).

This man had multiple admissions under a general medicine team for management of pressure areas and tissue infections related. He required a hindquarter amputation a year prior to meeting the Palliative Care Service of this acute hospital. Involvement was premised on his declining functional capacity, frequent admissions and the need to start advance care planning. Additionally, he required analgesia support for chronic pain due to recurrent rotator cuff injuries. He was on a stable dose of an opioid.

Prior to his final admission to the acute facility he was requiring a minimum of five hours of support for hygiene and dressing support daily. Services and care providers and our patient believed that the situation was no longer tenable and that he would not be able to return home.

The pressure area involving the lower back and pelvic area at the time of admission was the size of a large dinner plate and was leaking urine. The Urology service confirmed the presence of a fistula and ruled out an intervention to by–pass urine. Incontinence of feces exposed the open pressure area to infection and complicated patient management with the need for repeated hygiene interventions.

The patient’s condition was described as wretched. He was bed–bound, uncomfortable and would spend hours lying in his excrement as he refused to let nursing staff clean him as needed. He hoped that infection would take hold and he could die. He was cachectic and weak. After several weeks in this state and without evidence of infection he was desperate and unable to find any reason to be alive.

His treating physician suggested that he could voluntarily stop eating and drinking and discussed the implications of this with him. The Palliative Care Physician supported these discussions and reassured him that he would receive all appropriate palliative supports if he proceeded. His PoA supported his decision to proceed. The hospital ethics committee met and reviewed the decision and found there to be no impediment with our patient being competent to make the decision.

The patient commenced on an agreed day to stop eating and drinking. He insisted that he was not to have sedation, as he wanted to be fully aware for as long as was possible. He did request to sip water if he needed to.

Medications were rationalized and a parenteral route delivered essential medications. 24–hours post starting he reported a great sense of relief that he had taken control of his situation.

All nursing staff were briefed carefully about the decision of the patient and how he would be cared for, so that he would not be offered food or fluid inappropriately. Whilst he had stopped eating it became evident that for several days post commencing stopping eating and drinking that his water intake (sips) was consistent with maintaining renal function. Unbeknown to staff, his water bottle was refilled frequently by visitors. After this was noted and he realized the protracted nature of such a course if this continued, he significantly reduced his daily water intake so as to dehydrate.

On day eight he complained of insomnia and nocturnal agitation and his behaviour became more challenging for the nursing staff. He agreed to a very small dose of Levomepromazine (Methotrimiprazine) which resulted in him being more settled.

On day ten, he was drowsier with intermittent confusion i.e. There was evidence of a mild delirium. During a lucid period he reiterated his...