Planning and providing care for a person with a life-limiting illness can involve ethically complex decision-making. This can occur at any point along the illness trajectory. It is important for all healthcare providers to understand potential ethical dilemmas. Treatment decisions can challenge your values and beliefs. This can influence the care you provide or recommend, and cause tension between the person with a life-limiting illness, their family/carers, and healthcare providers.[1]
Examples of complex ethical issues encountered in palliative care include:
- Determining the method and timing of conversations with family members around the imminent death of a loved one
- Family members are aware that the person had an advanced care directive but are unsure of the details and unable to locate the documentation
- Family members or care providers who are unwilling to follow a person’s advanced care directive
- Deciding when to withdraw treatment that is considered medically futile
- Requests for starting or continuing resuscitation when there are differences of opinion in the family
- Management of reversible conditions (eg, arrhythmias, choking) for those receiving palliative care
- Use of artificial nutrition and hydration
- Use of palliative sedation
- Requests for assistance to die
- People who access voluntary assisted dying and have a family member call 000 as they did not agree with the person’s decision, or the situation was not what they expected
- Requests for autopsy.[1]
Four basic principles of biomedical ethics are autonomy (self-determination), justice, beneficence (doing good), and non-maleficence (doing no harm). For practice to be considered ‘ethical’ it must respect all four of these principles. Application of these principles assists in decision-making regarding issues such as informed consent, truth telling, confidentiality and respect.[2]
End- of-Life Law Resources
End of Life Law in Australia resources provide accurate, practical and relevant information to assist clinicians navigate the challenging legal issues that can arise with end of life decision-making. Information is presented about Australian laws relating to death, dying and decision-making at the end of life. These laws are very complex, particularly in Australia, where the law differs between states and territories, and where areas of uncertainty about the law exist.
Clinicians can enhance their understanding of these laws and knowledge about legal rights and responsibilities at end-of-life. Key topics include:
- Capacity and consent to medical treatment
- Advance Care Directives
- Treatment decisions
- Pain relief
- Voluntary assisted dying.
Voluntary assisted dying (VAD)
In Australia, Voluntary Assisted Dying (VAD) laws are operating in all states. VAD refers to the assistance provided to a patient by a health practitioner to end their life. It includes:
- ‘Self-administration’, where the person takes the VAD medication themselves
- ‘Practitioner administration’, where the patient is given the medication by a doctor (or in some Australian states, a nurse practitioner or registered nurse).[3]
‘Voluntary’ indicates that this is a free choice of the patient, and that they have the decision-making capacity to choose to access VAD, and maintain this throughout the process. A person’s decision-making capacity is defined by each the laws in each state. Health professionals have rights and obligations under VAD laws. These differ depending on the person’s profession or work role, the State they work in, and whether they choose to be involved with VAD. There are restrictions on when VAD can be discussed, and which health professionals can do this. There are also restrictions on providing information about VAD.[3]
Further information on the laws on VAD both in Australia and internationally, and their intersection with palliative care and medical treatment decision-making is available from the End of Life Law in Australia project.
Thinking Points
- Refer to the ethical guidelines / code of conduct relevant to your discipline and answer the following questions:
- How would you respond in a situation where a caregiver has asked you not to inform the person with a life-limiting illness about their diagnosis?
- How do you respond to a person who tells you that they have ‘had enough’ and no longer want treatment?
- How would you respond if someone requests that you help them end their life early?
- Search recent literature and identify definitions of the term ‘futile treatment’ and ‘non-beneficial’ treatment.
- In what ways can perceptions of futility differ between the person with a life-limiting illness, families and carers and health professionals, and between different health professionals?
- Refer to the Voluntary Assisted Dying page from End of Life Law in Australia. Consider how Voluntary Assisted Dying laws affects the provision of palliative care.
References
- Therapeutic Guidelines. 2023. Palliative Care. Melbourne.
- Beauchamp, T.L. and J.F. Childress. 2-12. Principles of Biomedical Ethics. New York: Oxford University Press.
- Australia Centre for Health Law Research. 2024. End of life law in Australia – Assisted Dying