Competence and capacity at the end of life: uneasy paternalism

The question of whether a person has the capacity to make decisions for him- or herself is one that has increasing relevance throughout clinical practice. It is especially relevant in palliative medicine, where practitioners often pride themselves on offering patient choice, particularly when it comes to selecting a venue for receiving care. Patients seen by palliative care services frequently have impaired cognition, often due to delirium.1 Such cognitive impairment places patients at risk of not understanding the ramifications of the decisions that they make. This is likely to become an increasing problem, as palliative care services care for an ageing population, with a significant comorbid burden, who are more at risk of diminished capacity due to the prevalence of illnesses such as dementia. The four ethical principles of health care — non-maleficence (doing no harm), beneficence (doing good), respect for autonomy, and justice2 — remain the foundation for ethical clinical practice. However, in the course of our duties, these principles may come into conflict.

An 85-year-old man with metastatic rectal cancer, who received domiciliary palliative care support following an “unsafe discharge” from an inpatient palliative care unit, was readmitted against his express wishes and subsequently died in hospital. This article explores the resulting sense of unease among the responsible clinicians, arising from our decision to act with beneficence and, arguably, humanity, in overriding a patient’s dying wishes.

The patient was diagnosed with a stenosing rectal cancer, with lung and bone metastases, following presentation with advanced cachexia and symptomatic anaemia. The diagnosis came as a shock to the patient, who denied any previous major health issues and had infrequent contact with his family doctor. He had been a lifetime smoker of 60 pack years, and smoking was one of the few passions of his now-isolated existence. The patient was a worldly man, born in Malta, who had travelled extensively in his youth before settling in metropolitan Melbourne and raising a family. Unfortunately, his wife’s death in 1989 heralded a slow withdrawal from his friends and family. By the time of his presentation, he was living a squalid existence and reluctantly came to hospital at the insistence of his adult children.

Options for palliative surgery, chemotherapy and radiotherapy were discussed and declined by the patient. A brief period at home resulted in a further presentation with symptomatic anaemia due to ongoing rectal blood loss and faecal incontinence. He was referred and admitted to inpatient hospice care, but again asked to be discharged almost immediately following blood transfusion. His insistence on discharge and refusal to discuss options to improve his physical care and safety at home led his palliative care providers to organise an assessment of his decision-making capacity by a neuropsychologist and consultation liaison psychiatry team. He was found to have decision-making capacity during these assessments, although it was noted that he was an avoidant historian and lacked some insight into the ramifications of his decisions. Plans were made to support the patient at home, as was his wish, with extra community services, community palliative care and family involvement.

Unfortunately, the situation unravelled quickly at home. He refused many of the services that had been organised. He was reluctant to let his family help him more and they felt powerless to compel him. The community palliative care team attempted to act as mediator but made little progress. During this time, he became progressively frail until no personal care or safe use of medications was deemed possible. He had a fall at home 6 weeks after discharge, and an ambulance was called when he was found on the floor, unable to rise.

Despite his frail condition, he remained both vocally and physically resistant to paramedic attempts to transfer him to hospital, and he finally sent them away. He was also left alone by his family, who felt both unable to provide care for their father at home and powerless to compel him to go to hospital. He remained on the floor for several hours, until urgent re-review by the community palliative care physician.

By this time, the sun had set, and his home was shrouded in darkness and cold. He told the physician that he was lying on the floor only because he wished to do so and that he wished to remain where he was, although he was intermittently not orientated to place or person. Under Victorian legislation, he was assessed by the palliative care physician as being incompetent due to delirium3 and was transferred to hospital as an involuntary patient. This required police attendance and the ambulance service to transport him safely. His involuntary status was upheld for a further 48 hours by subsequent independent psychiatric review. No reversible cause of delirium was found on investigation when he was hospitalised, although his cognition did improve. He deteriorated over a course of weeks and died comfortably in hospital without requesting discharge again.

The decision that led to the patient’s removal from his home against his wishes, and his subsequent death in hospital, continues to rest uneasily on the team, given that clinical decisions are usually made not only for the benefit of the patient, but are also informed by respect for patient autonomy, non-maleficence and justice.

In this instance, less invasive interventions, including enlisting family support, appointing a guardian, or urgent review by community-based psychiatric services were considered but judged to be inadequate or not possible within the time frame required. Subsequent peer-review discussions raised the probability of similar situations of isolated people living and dying without support in poor conditions. While this is likely true, there is a clear distinction between knowing the detail of a specific unfolding clinical scenario and not intervening, and theoretical events outside our direct knowledge.

In the end, the contention returns to the dilemma that this patient had decided not to comply with what we would regard as “a good death”. In doing this, the consequences of his actions were detrimental not only to his comfort and condition but to the physical and psychological wellbeing of his family and carers, who were placed in the unenviable situation of having to provide inadequate care in an inappropriate environment. The clinical decision was made that drastic action was necessary, even to the point of forcing his compliance against his will.

At the time of the decision to compel his removal from his home, it became less about his competence to make decisions, and more about our recognition of his humanity. To leave him to die alone, cold and probably in pain, in the midst of one of our well resourced cities, with medical and health care professionals in full awareness of his predicament, without acting, would have been a betrayal of our responsibility as his medical carers. We would have been inappropriately allowing respect for his autonomy to outweigh all other ethical considerations, despite his changed circumstances and limited realistic choice to remain as he was. While this is a pragmatic principlist approach, other ethical theories, such as virtue ethics, accord with our decision, which was guided by compassionate interest in the patient’s wellbeing.

Was this an act of excessive medical paternalism, resulting in the denial of a person’s last wish to die at home? Undoubtedly there are those who would argue on both sides. However, even with the passage of time, we remain comforted that, after acknowledging the patient’s autonomy, our intervention was carried out in his best interests.