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• Re:End of Life Decisions - Do we make them wisely?
  Praeksh S Shah
  Published on: 17 June 2016
• End of Life Decisions - Do we make them wisely?
  anthony cohn
  Published on: 20 April 2016

• Published on: 17 June 2016

  Re:End of Life Decisions - Do we make them wisely?

  • Praeksh S Shah, Doctor
  • Other Contributors:
    • Hellmann J

  Reply to End of Life Decisions - Do we make them wisely?: End of life decisions: How do we improve process? We thank Dr Cohn for his response to our paper and for voicing the issues it raised for him. Certainly one of the objectives of the study was to explore whether there were differences in approach to similar medical disorders in NICUs across Canada. We hoped that our finding of differences in what appear to be medical...

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  Reply to End of Life Decisions - Do we make them wisely?: End of life decisions: How do we improve process? We thank Dr Cohn for his response to our paper and for voicing the issues it raised for him. Certainly one of the objectives of the study was to explore whether there were differences in approach to similar medical disorders in NICUs across Canada. We hoped that our finding of differences in what appear to be medically similar disorders would cause physicians and teams to reflect on how they come to EOL decisions and why variability exists. We agree that the working environment of an NICU may be a major factor in such decisions and defined the term 'ethical culture' of an NICU as the prevailing ethical consciousness and sensitivity to moral issues in an NICU. This, we believe is understood by the health care professionals as the readiness to engage in ethical discourse, the respect given to diverse views and values, the past experience of the unit and the awareness of the group as to the normative boundaries of deviation in ethical decision making. Although we, together with Dr Cohn, can only speculate that this 'culture' does have a strong influence on individual and team behavior, we were not able to probe this further via the design of our study. Only with very detailed, multidisciplinary (including parental perspectives) description of individual decisions one may be able to uncover how decisions are derived and to what degree they are a manifestation of "this is the way we do things here". As to the concern that consensus may have been achieved in the face of junior members of the team or even parents feeling unable to voice dissent, we specifically asked each responsible neonatologist to comment on the ease of the consensus-building process. We trustingly accepted their description on a spectrum of difficulty. As to the concern of how each individual deals with medical uncertainty, we hope to explore this aspect in a deeper analysis of the study findings. What we cannot agree with is Dr Cohn's "solution" that "ethics panels" judge these matters. It is not clear what is envisaged but a spectrum of bioethics committees and consultation services do exist in North America and elsewhere. Such committees may be decision making or more likely (certainly in Canada) more procedurally oriented in helping teams elucidate values, preferences, and the rightful voices to be heard to ensure fair process and help teams determine the ethical defensibility or vulnerability of different options. There may be other committees in which panels judge decisions but in Ontario this would only come into operation when intractable differences exist between parents and the team as to the best interest of the newborn infant. Here the Consent and Capacity Board can be called into action when the parents' role as substitute decision makers is questioned or the parents seek an alternate pathway to resolution of difference with the team. We firmly believe the safeguards Dr Cohn seeks remain in the integrity of neonatal physicians, parents and teams deriving decisions by open sharing of values, clarification of issues, moral reasoning and negotiation towards consensus (with bioethics consultation when necessary).

  Authors: Jonathan Hellmann,1 Prakesh S Shah2 1 Department of Bioethics and Division of Neonatology, Hospital for Sick Children, Toronto 2 Department of pediatrics, Mount Sinai Hospital, Toronto.

  Conflict of Interest:

  None declared

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  Conflict of Interest:
  None declared.

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• Published on: 20 April 2016

  End of Life Decisions - Do we make them wisely?

  • anthony cohn, paediatrician

  Hellman, Knigthon et Al and Carter in the accompanying editorial raise many issues dealing with the end of life care of sick newborn babies. Although consensus within multidisciplinary teams in each centre is recorded as being achieved relatively easily, the wide variation between centres in how each deals with the issue of withholding life saving treatments, particularly where there are 'quality of life issues' und...

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  Hellman, Knigthon et Al and Carter in the accompanying editorial raise many issues dealing with the end of life care of sick newborn babies. Although consensus within multidisciplinary teams in each centre is recorded as being achieved relatively easily, the wide variation between centres in how each deals with the issue of withholding life saving treatments, particularly where there are 'quality of life issues' underscores a wider lack of consensus amongst practicing neonatologists.

  This raises a number of issues. The most challenging of which is why, when there is such variation between units is there such agreement within them? This could be because like-minded people work together, or more likely people who work together become like minded. More disturbingly, it raises the possibility that the consensus may not be as great as perceived with particularly junior members of the decision making team- perhaps even the parents- feeling unable to voice dissent.

  A further issue is the weight given to medical opinion in making ethical and moral judgements. In common with most doctors, I received little or no formal training in ethics. I can use technical language to make my forthright opinions sound ethical, but in an era increasingly asking for evidence I have little to back these up. Historically the medical profession has not always cloaked itself in glory when trying to play society's moral arbiter. We can often lapse into a language of certainty and authority which makes it difficult for others to challenge our positions.

  I have another difficult personal issue, which being late to the table I have only just realised. In common with most doctors of my generation I was not encouraged to think about why I do what I do. I see that there are many different types of doctors, many of us in hospital seem to be 'fixing' doctors in that we see ourselves as people that make problems better. If we could cope with uncertainty and some degree of failure we may be in different specialties. Patients that will not or cannot be fixed can challenge me as a doctor and make me feel in some way 'undermined.' In these situations I worry that decisions that I make or recommend may be as much for my benefit as they are for my patients or their family. As a 'fixer' it is easier to discard rather than live with broken things. These are incredibly complex feelings to acknowledge but they certainly do exist.

  The obvious solution, as is available in much of North America and other countries in the world would be to establish Ethics panels who could judge these matters. These could be hospital based, regional or supra regional and would include members with proper training in Ethics and legal knowledge. Undoubtedly their deliberations would be heavily informed by medical evidence and input, in much the same way that medical input informs but does not make, safeguarding decisions which are ultimately in the gifts of the courts and their agents. This would provide safeguards for patients, families and the medical teams who look after them.

  Conflict of Interest:

  None declared

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  Conflict of Interest:
  None declared.

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