1. 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

2. 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

3. 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

4. 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

5. 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

6. 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)

7. 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

8. 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?

9. 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

10. 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

11. 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?

12. 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

13. 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

14. 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 ….

15. 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

16. 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”

17. 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

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