Medical decision-making towards the end of life can be difficult for everyone concerned and involves complex ethical considerations and situations where there isn't one 'right' way forward.
Ethical reasoning is a significant component of advance care planning which affects the actions of the individual concerned as well as their family, friends, carers and medical team.
Limitations of the law
Implementing legal frameworks for advance care planning and end-of-life care is problematic because ethical and moral issues are relevant factors in medical treatment decision-making.
The Australian advance care planning legal framework may be helpful but the law needs interpreting and applying to specific cases. Medical treatment decision-making on a case basis requires ethical considerations. Rarely will the law and an advance care directive provide sufficient directions or preferences for decision-making under all circumstances.
Enacting advance care directives
Advance care directives should be enacted only when an individual cannot make decisions for themselves.
Individuals should be engaged in current decisions about their care to the greatest extent possible. The existence of an advance care directive should not preclude or replace the individual’s right to make decisions whilst they are able to do so.
Individuals who are able to make decisions with the support of healthcare professionals or a support person should be given the opportunity for them to maintain their autonomy whenever possible. (A support person is someone who helps a person with reduced capacity make decisions. A substitute decision-maker makes decisions for someone who has no decision-making capacity.)
Precedent versus contemporary autonomy
A common theme within ethical debate regarding advance care planning is precedent versus contemporary autonomy of the individual. This means the individual's past desires previously expressed in an advance care directive versus their current interests.
This often involves questions of whether an advance care directive should or should not be upheld given current competing factors. It also involves important questions of whether the individual still retains some decision-making capacity, albeit diminished.
This theme is explored below.
Healthcare professionals and settings can take four actions to promote better decision-making in situations where ethical considerations arise.
- promote patient autonomy through a case-based approach to ethical decisions
- promote congruence between individuals and substitute decision-makers
- promote supported decision-making
- promote a coordinated care environment
Let's consider each of these in relation to the scenario below.
Andrew: an example scenario
Andrew is a retired 64-year-old who is married and has young adult children. He was diagnosed with early onset dementia three years ago. In the last two years, there has been a rapid decline in Andrew’s functional status. His wife Lucy is his support person and will be his substitute decision-maker (when he is deemed to have lost decision-making capacity).
Prior to this decline, Andrew and Lucy discussed his future on many occasions. He told Lucy that he was distressed to think the future involved him not recognizing his family and friends. He had seen his mother suffer with dementia and have a poor end of life. He does not want to become someone that no one recognizes and he has grieved that he is unlikely to see his children marry.
His general practitioner encouraged him to complete an advance care directive. In the directive, Andrew documented instructions to refuse cardiopulmonary resuscitation, assisted ventilation, artificial hydration, artificial nutrition and antibiotics.
Andrew now lives in a residential aged care facility for dementia care, he appears content and in two weeks he will be attending his son’s wedding. However, he has recently developed a chest infection and requires intravenous hydration and antibiotics. The facility has sent him to his local emergency department and the physician is aware that his advance care directive is legally binding.
Should the treatment be refused in accordance with the advance care directive (i.e. decisions made in the past), or should the medical team take into account his whole current situation, relative life contentment, the desires of his family and his desire to see his child marry?
The answers to these questions often depend on whether Andrew is deemed to retain some decision-making capacity or whether he is deemed to have lost all decision-making capacity. If he retains some decision-making capacity (with the support of a support person or healthcare professionals) then his current interests should take precedence. If he has lost all decision-making capacity, his advance care directive should take precedence.
Promote patient autonomy through a case-based approach to ethical decisions
Autonomy is a person's right to make decisions for themself and express their values. Advance care planning promotes autonomy and the person’s rights to control medical decision-making. An advance care directive extends autonomy to a time when the person becomes incompetent.
The Nuffield Council on Bioethics report (2009) outlines a methodology for a case-based approach to ethical decisions. There are three stages of this methodology.
1. Identify and clarify the relevant factual considerations
Clarify all the facts of the current situation. In Andrew's scenario, this would include details of the advance care directive, his current care and living arrangements, his current quality of life, his desire to see his child marry, the date of the marriage etc.
2. Interpret and apply appropriate ethical values
Sound moral and ethical decisions involve interpreting and applying appropriate ethical values. In Andrew’s case, there needs to be consideration of his autonomy, his previous preferences, his wellbeing, his current decision-making capacity (including the possibility of making a supported decision), the involvement of Lucy as his substitute decision-maker (if he has no decision-making capacity) and the interests of his family.
Andrew’s current state of health and sense of liberty should allow him some contemporary autonomy and therefore it could reasonably be argued that he retains some decision-making capacity and that his chest infection should be treated if he chooses.
However, the law considers that Andrew's advance care directive takes precedence over his later desires if he no longer has any decision-making capacity. It is also worth noting that the advance care directive is intended to apply to clinical circumstances, rather than taking into account all the other current, changeable factors in Andrew's life.
Personal identity is also an important ethical consideration. Some would suggest that Andrew is no longer the person he was when he wrote his advance care directive, that his identity has changed and he is entitled to current preferences and desires.
3. Compare with similar situations
Making a sound moral judgement may involve comparison with similar situations and consideration of the attitudes of others.
For example, the emergency physician might already have had to make a similar decision about providing or not providing clinically indicated care to someone that has an advance care directive refusing treatment. Andrew’s wife Lucy and family may have already been involved in decision-making about his medical treatment. They may have an attitude toward the conflict between past directive and present interests.
Advance care directives should explicitly address the conflict between past directive and present interests. The individual making the directive should be educated about precedent versus contemporary autonomy. Hypothetical scenarios can be useful to prompt consideration.
Health and care professionals should receive clear teaching on the differences in law and ethics because what the law requires can vary from what some would deem as ethically appropriate.
Promote congruence between individuals and substitute decision-makers
End-of-life treatment decisions involving multiple stakeholders are very likely to involve multiple ethical and moral concerns.
It is important that substitute decision-makers are well prepared for their role and can make accurate and congruent decisions. Substitute decision-makers should be involved in discussions regarding their role, responsibilities, person autonomy, the person’s quality of life and treatment preferences.
If Andrew had written an advance care directive with values statements rather than specific preferences, Lucy would be required to consent or refuse hydration and antibiotics to sustain his life. Lucy would step into the substitute decision-maker role once Andrew was deemed to have no decision-making capacity. In this scenario, it would be highly preferable if Andrew and Lucy had discussed this while Andrew still had capacity.
- Health professionals should promote the appointment of a substitute decision-maker and this person’s early involvement in the individual’s health status, care requirements, and discussion regarding values and preferences
- Health professionals should support and educate substitute decision-makers on their role and responsibilities, scope and substituted judgement
- Health professionals should monitor the capability of the substitute decision-maker to fulfil their role, and provide information and support when required
- If a non-competent person does not have an advance care directive, health professionals should encourage the substitute decision-maker to make an advance care plan on the person's behalf
Promote supported decision-making
Healthcare teams can improve patient autonomy by promoting supported decision-making. This means providing support to individuals whose decision-making is impaired to enable them to make their own decisions whenever possible.
In Andrew's case, this may mean healthcare professionals carefully explaining the various options to Andrew and Lucy (his support person), and attempting to involve him in the decision. This would be the scenario if Andrew was deemed to still retain some decision-making capacity.
- Healthcare settings should promote a comprehensive model of advance care planning that incorporates autonomous, supported and substituted decision-making by implementing an ethical framework that considers case-based decision-making
Promote a coordinated care environment
Advance care planning should occur in consultation with the full healthcare team and others involved in future decision-making. It is important that all parties are aligned in terms of advance care planning knowledge and the healthcare approach for the individual.
Often individuals receive care from a multidisciplinary team that may have varying knowledge and understanding of advance care planning. They may have different beliefs regarding the benefits and validity of advance care planning and advance care directives. They may also have different values regarding the promotion of the individual’s autonomy and the ability of substitute decision-makers.
These all present challenges to achieving outcomes for the individual which respects their autonomy and desires.
In Andrew's case, it would be important that health and care professionals in his aged care facility, emergency medical treating staff and Lucy (his substitute decision-maker when he loses decision-making capacity) are acting in alignment.
- Healthcare settings should educate the workforce on the benefits of advance care planning, the importance of quality advance care directives and how to enact them
Accessing advance care directives
Encourage individuals to make their wishes known when they cannot speak for themselves by uploading their advance care directives and other advance care planning documents to their My Health Record. Storing advance care planning documents in My Health Record means the individual and any healthcare providers they see have secure access to these important documents whenever they’re needed. It’s particularly vital in emergency settings, giving the treating team rapid access to this information, thereby ensuring a better understanding of the individual’s preferences and the type of care they may want. Get more information on My Health Record.
Contact our National Advance Care Planning Support Service on 1300 208 582 for further guidance. We're available 9am – 5pm, Monday – Friday (AEST).