Changing one's view on stoma formation

An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.

In the case of M, a 34-year-old man intubated and ventilated in intensive care, an application was made to the Court of Protection. A declaration was sought as to whether active treatment should continue to be provided; or alternatively, whether palliative care was indicated.

M’s unifying diagnosis was not clarified in the court report. In 2013 he had presented with a gastric ulcer and bleeding; thereafter suffering unremitting abdominal pain and malabsorption. In 2019 he underwent ileostomy, but then had to endure significant stoma prolapse which he found very distressing. The court found that he 'utterly loathed life with a stoma'. At M’s request, the stoma had been closed on 14 May 2020.

He re-presented some days later with gut obstruction and anastomotic leakage. These complications were confirmed by a CT scan and the insertion of a peritoneal drain under local anaesthesia released 3 litres of faecal fluid. Combined with peritoneal sepsis, the gravity of his situation was impressed upon M by the consultant surgeon, who advised the immediate formation of a new stoma. The court found that M consented to the stoma being re-formed. At the time of his emergency admission with the anastomotic leak, the clinicians were clear that he had capacity. The court heard that that M's consent to renewed stoma formation was predicated on the surgeon's optimism that the stoma could, potentially, be reversed. The surgeon agreed that he had been optimistic in his disclosure prior to consent, notwithstanding the history of earlier reversal.

The provision of consent remained puzzling throughout the course of the hearing. Despite abundant contradictory evidence of M’s determination to refuse having another stoma fashioned, he had ultimately consented to a new stoma on 27 May 2020. Since that operation he had been in intensive care, intubated and ventilated, self-evidently incapacitous.

M had written a complex and detailed Advance Decision, although did not present it to the hospital. This included a refusal of '...the formation of a stoma, through an ileostomy, colostomy, urostomy or similar, that is expected to be permanent or with likelihood of reversal of 50% or under'; this refusal he asserted was applicable ‘even if it placed his life at risk’. Equally, he rejected all medical treatments that would artificially sustain his life; manifestly, extending to parenteral feeding. The wishes and feelings set out in the Advance Decision were reflected in the evidence the court heard from various doctors who were surprised that M had agreed to the stoma; including Dr W, an anaesthetist who was perplexed that the patient had provided consent. After giving his evidence, Dr W remained for the entire case, wanting to understand '...whether there had been some seismic change in M's thinking in relation to the stoma'.

The court found that the surgeon had an 'optimistic and positive attitude to his patient...illustrated by (subsequent) evidence...that though the stoma would never be reversible, it may be that parenteral nutrition may not necessarily be lifelong'. The surgeon agreed that this was speculative and did not feel able to evaluate for the courts benefit the likelihood of eventual enteral feeding.

The court was not able to know whether the surgeon should have been more circumspect in his advice. Had the surgeon been pessimistic as to the prospects of a subsequent reversal, the judge found that '...there is little doubt in my mind that M would have rejected the procedure and have chosen to die’.

The judge found that M’s consent seemed entirely contrary to his previous 'unambiguous rejection of the stoma' expressed bluntly to three consultants with who he had discussed it; and entirely inconsistent with everything he had said to his mother, father and step-sister on the point. Beyond the hospital setting, these were the only three people who knew M had a stoma. He did not even wish his grandmother to be told.

Evidence from M's mother led the judge to conclude that M had come to a 'clear and entirely settled decision that he was not prepared to contemplate life with a stoma or indeed any significant life changing disability.... (these views) ... were a facet of his broader personality, the expression of which was integral to his own personal autonomy’. The court found that what M did not want was to find himself in the position that had ultimately crystallised. He rejected life with an irreversible stoma and parenteral feeding in unambiguous and consistent terms. The Official Solicitor, acting on M's behalf submitted that the central issue in the case was that of respect for his autonomy. His expressed views and wishes weighed heavily in the balance, to the extent that they were determinative, rebutting the presumption for the preservation of life. The court found that M would 'unhesitatingly reject the striking artificiality of parenteral feeding... (and that he has made) a practical, utilitarian calculation that life in these circumstances is not what he wants'. For this reason, the clinically assisted nutrition and hydration was withdrawn.

Robert Wheeler
Department of Clinical Law