Ethical Decision-Making: Thinking through ethically challenging situations in Spiritual Care Prof Lynn Gillam Children’s Bioethics Centre Royal Children’s Hospital Melbourne School of Population and Global Health University of Melbourne

Ethical thinking - a learned skill “Slow thinking” Purposeful Step by step, bit by bit Reflective – acknowledge emotions but not led by them “Big picture” Goals Principles/values– the things that ultimately matter

terminology Values = things that matter ethically Ethical principles = formal names of ethical values Rights – names of ethical values as entitlements of patients and families, or what is ethically owed to patients and families Obligations (responsibilities, duties) names of the ethical values as ethical obligations of professional care providers

Ethically challenging situations The right thing is clear – but not easy to do Unclear what is the right thing – “ethical dilemma” Needs a process of ethical decision-making Locate yourself: Observer Direct personal involvement

Ethical decision-making Not mysterious - follows a standard decision-making process. Involves both facts and values Identify the issue /question Gather initial information Identify possible options /courses of actions Ethically evaluate the possible options use ethical values as the criteria – ie look for ethical pros and cons Identify option which has the best balance of pros over cons But there might be more than one ethically appropriate option

Why ethical decisions can be complex and contentious 1. Different aspects and interpretations of the principles 2. Clash of principles 3. Limitations and barriers to doing what is ethically best Strategy – Start by asking the ethically important questions. (Don’t start with answer)

Role of gut feelings, intuitions and emotions Important to pay attention to these But they are warning signs or indicators only - not determinative Always take a step back Ask why you have that feeling – what factors about you might it be reflecting Compare intuitions and gut feelings with others

What sorts of situations are ethically challenging for you What sorts of situations are ethically challenging for you? What ethical values underpin your work? What are your professional ethical principles?

A common ethical challenge End of life decision-making Standard ethical view (supported by legislation / case law) quality of life (balance of benefits over burdens to patient) can be more important than length of life Medical interventions may be stopped or not started, if Intervention itself burdensome, distressing, painful – little benefit (or very low probability of benefit), lots of burdens The resulting quality of life for the patient too low – little benefit, even if no significant burden This includes ventilation, dialysis, medications, etc … and artificial nutrition and hydration. There is no ethical obligation to prolong life, just for the sake of it, regardless of quality

Key competencies in ethics Awareness of own assumptions and of the assumptions and values of others Understanding of how own values relate to basic ethical principles Capacity to identify ethically important situations Capacity to make conscious ethically informed decisions about own practice Capacity to contribute effectively to ethical deliberation for team decisions Ask the ethically important question Identify alternative possible courses of action Identify ethical pros and cons of these alternatives Come to a view about the ethically preferable alternative

A guide to ethical decision-making – key questions to ask What are the treatment management options for this child at this stage? What are the expected benefits and burdens/risks of each option Which option is in the best interests of the child? – how clear-cut an answer can be given? What do the parents want? Does their decision fall within the zone of parental discretion? What does the child want? How much weight should be given the child’s view, on basis of child’s level of maturity and understanding?

Some technical ethics terms – “Withdrawing and withholding life-sustaining medical treatment” Withdrawing and withholding are regarded as ethically equivalent: Reasons that justify not commencing a treatment would also justify ceasing a treatment after it has begun. Therefore, is no ethical compulsion to continue ventilation, dialysis or other treatments, just because they have been start There may be psychological or emotional differences for clinicians and families, but these do not represent fundamental ethical difference

More background: Ethics of medical decision-making Informed consent Right to refuse treatment Shared decision-making: “Patients* and clinicians engage in a partnership … to arrive at the optimal decision for the patient” (Makoul and Clayman 2006) * Or proxy decision-makers - parents of child, or next of kin of non-competent adult Respect for autonomy

BUT THERE ARE BARRIERS …. These decisions should not be made by doctors alone Patients (or their proxy decision-makers) should play an active and significant part BUT THERE ARE BARRIERS ….

Some terms to look out for: Clinician barriers to shared decision-making: . Indirect language, “code” and quasi-technical terms Some terms to look out for: Guarded prognosis Uncertain outcome Day by day prospect Just get through today / tomorrow / this week first Re-focus the goals of care Re-direct care Counsel the family Treatment limitation, or no escalation

More barriers Doctors and families may not be “on the same page” Not thinking about the big picture Lots of specialities, no-one focused on the whole patient Overly optimistic or out-of-context descriptions of patient’s condition Waiting for parents or family to raise the issue Not wanting to talk about the possibility of death for fear of distressing the family because we are not (yet) certain that death will occur Not guiding or recommending, for fear of being paternalistic or coercive Doctors and families may not be “on the same page”

Deeper barriers Doctors may not want to talk about it Acute discomfort with intense emotion Acute discomfort with being unable to fix things Fear of (admitting) failure Fear of talking about death Fear of death Doctors may not want to talk about it

Can or do hospital pastoral care workers step into this non-communication space? Should you? What are your experiences? What are your views?