Jockey Club End-of-Life Community Care Project
JCECC Capacity Building and Education Programmes on End-of-Life Care
Case: Mr Wong
Complaints and discontent from family members
Mr. Wong, a 60-year-old, wheelchair bound patient, was recently re-admitted to the hospital due to recurrent aspiratory pneumonia. Mr. Wong had recurrent nasopharyngeal carcinoma with extensive brain metastasis. The clinical judgment was that there would be no additional benefits for further curative treatment, and best supportive care would be most suitable management direction.
Approximately a week prior to this admission, Mr. Wong was discharged from the oncology ward for aspiration pneumonia. Empirical nasogastric tube insertion was attempted then for artificial feeding but failed several times. An Entriflex tube was finally inserted under oesophago-gastro-duodenoscopy (OGD) guidance.
During this admission, Mr. Wong was put on intravenous hydration and antibiotics injection. He remained tired-looking and needed high-flow oxygen. On the 7th day, hypercapnia was observed, and Mr. Wong was immediately put on bilevel positive airway pressure (BiPAP) ventilation. Mr. Wong’s youngest daughter, who was a healthcare worker, voiced the frustration that non-invasive ventilation (NIV) was not employed earlier. She even claimed that she would report this to the Patient Relations Office.
Somehow the Entriflex tube slipped out when BiPAP was worn. The BiPAP was subsequently wean off by day 13, yet Mr. Wong’s general condition remained very tired, exhausted and drowsy. The daughter requested for re-insertion of the Entriflex tube for his father and be restrained which was the usual practice at her working place. An OGD-guided feeding tube insertion was then placed after some technical difficulties. However, Mr. Wong developed desaturation while still in the recovery area, quickly deteriorated and passed away on that night.
Although the entire sequence of events, including the technical difficulties of the tube insertion procedure, had been explained in detail to Mr. Wong’s family members, the youngest daughter again expressed anger regarding the overall treatment and claimed that not enough effort had been made to reach out to the family, especially after desaturation. Perhaps under her influence, the family insisted that the case of Mr. Wong must be referred to the coroner, as they perceived that there were other causes of death, in addition to the brain metastasis and aspiration pneumonia.
Possible ethical issues to discuss
- The team judged that best supportive care should be the most suitable management direction. What are the “best supportive care”?
- Should “best supportive care” be decided by clinical team only? Should patient (and / or family) be involved in decision on “best supportive care”?
- Re-insertion of the Entriflex tube was expected to be of high risk yet was requested by the daughter. What ethical principles should be applied to guide the most suitable management in this situation?
—————————————————————————————————————
– Professor Stephen Allen
Consultant Physician and Professor of Clinical Gerontology, University Hospitals Dorset, UK
The case of Mr. Wong raises several crucial and subtle ethical issues. However, there are some grey areas and, as is often the case in such circumstances, recourse to the main underpinning principles of medical ethics can help to clarify clinical decision making and provide a framework for understanding and communication.
Firstly, we need to address the issue of autonomy. Did Mr. Wong have the mental capacity to indicate whether, or not, he wished to receive intrusive treatments that were unlikely to be of benefit? Possibly not, because we have been informed that he had extensive brain metastases from a nasopharyngeal carcinoma, though there is no information as to whether his mental capacity had been assessed. Ideally, his capacity to refuse or accept certain treatments would have been determined, and if lacking, any prior wishes and preferences stated by Mr. Wong while he was still of sound mind explored by discussion with his close family. Of course, when a legitimate written advance directive is available it should be viewed as strong evidence of a patient’s wishes, taking into consideration the legal framework in Hong Kong. It appears that Mr. Wong’s youngest daughter was demanding that he should receive treatments that were unlikely to extend his life or relieve his distress. Under such conditions, the team caring for Mr. Wong should take time to ensure whether his daughter was primarily concerned with her father’s best interests or being influenced by her own anxiety and emotional needs. With due allowance for prevailing cultural factors, such an approach can often result in a consensus.
Next, we must consider the topic of benefit. The oncology team had concluded that Mr. Wong was unlikely to benefit from further attempts at curative treatment and “best supportive care” was more appropriate. This then posits the question of how to define “best supportive care”. In a palliative setting, this is often the area where disagreement arises, as indeed it did between Mr. Wong’s family and his care team. It is debatable whether Mr. Wong really benefitted from the deployment of feeding tubes and non-invasive ventilation, and viewed retrospectively, it might have been better not to have introduced their use during the episode of aspiration pneumonia. Some of Mr. Wong’s daughter’s distress and concerns might have been easier to address, and his palliative care smoother to plan, if the lack of benefit from intrusive treatments had been discussed with the family earlier, though that is speculative. The main learning point in this domain is the need for a realistic review of treatment options and a frank and clear explanation to the family of what will and will not truly benefit the patient.
Thirdly, the ethical imperative to do no harm must be applied to Mr. Wong’s care. Though there is no doubt that all those involved in his care were well-intentioned, and there is no suggestion that deliberate harm was done, it is important to reflect upon whether the use of inappropriate and probably futile treatments might have caused some inadvertent harm that could have been avoided. This question is particularly delicate around the use of enteral, most commonly nasogastric, feeding tubes. Family members and care staff are sometimes ambivalent about withholding or withdrawing enteral nutrition because it touches upon one of the fundamental aspects of care and has deep roots in most cultures. However, raising the topic of potential harm, especially from discomfort and a futile prolongation of the last few days of life, can help all those involved to accept that such treatments are not only unhelpful but also might do harm. Specifically, for Mr. Wong, it could be reasonably contended that he was clearly at the end of his life, exhausted, and showing no lasting response to treatments such as non-invasive ventilation, feeding tubes and antibiotics. In particular, the last attempt to insert a feeding tube resulted in no benefit and probably caused unintended harm. It is not stated whether Mr. Wong’s daughter’s request that he should be restrained, presumably to prevent him pulling out the feeding tube, was actioned. However, some patients convey their rejection of intrusive treatments by removing them, so the care team needs to take that into consideration, otherwise, harm can be done by denying a patient a means to express choice. These comments, of course, need to be considered through the lens of Hong Kong law and local guidance on good practice.
Finally, the ethical concept of justice can be applied to Mr. Wong’s care. In the context of clinical practice, the main thread of justice is fairness. This can be applied not only to an individual patient but also to those making the relevant clinical decisions, the appropriate use of limited resources and the need for truthfulness and honesty. Up to the point where the oncology team decided no further curative treatments would be effective there is no doubt that Mr. Wong received fair access to care, and it was also fair that he should have “best supportive care” after that decision. However, it might be argued that under pressure from Mr. Wong’s daughter some of the later interventions were not only futile but wasteful of time and materials and therefore unfair to other patients. This is often an aspect of care that is viewed differently by the families of patients and consequently requires a careful, frank but firm approach to ensure strong but misguided advocacy does not lead to an unjust approach. It is noteworthy that Mr. Wong’s daughter made threats to make a formal complaint and requested a referral to a coroner. Though such a stance can be troublesome for the care team, enabling such scrutiny can also be part of ensuring a fair and just outcome and need not be feared or resisted by the care team.