Overview of decision-making and ethical challenges in palliative care
Making decisions about care is often not straightforward, even when a patient with palliative care needs has decision-making capacity.
Many ethical challenges in palliative care relate to how decisions are made, and the extent of medical investigation and treatment. Decisions can be clinically complex and emotionally distressing, especially those related to withholding or withdrawing treatment. Some decisions may involve clinical uncertainties, and ethical or religious dilemmas that further complicate the decision-making process.
Ethical dilemmas arise because of concerns or differing views about what kind of care is best for a patient, especially when the patient is unable to communicate their preferences or make decisions themselves. This can cause conflict between healthcare professionals, patients and families. Ethical dilemmas can cause healthcare professionals moral distress, if they are unable to act in accordance with their valuesPhoenix Australia - Centre for Posttraumatic Mental Health, 2020.
Decision-making in palliative care is a collaborative process that should ensure the patient remains the centre of the discussion, even when they cannot fully participate in decisions. In those cases, involve their family and carers in discussions to obtain an understanding of the patient’s preferences and to ensure ongoing management aligns with a patient’s values and goals. Some cultural groups place great importance on involving family and community members in decision-making even when a patient has decision-making capacity, but individual preferences may vary (see Cultural considerations in palliative care). When ethical dilemmas are involved in decision-making, it can take time to agree on how to proceed; healthcare professionals may need to answer questions and explain issues to the patient and family (and others involved in supported or substitute decision-making) on multiple occasions.
Factors to consider when facilitating decision-making in patients with a life-limiting illness include:
- the patient’s preferences, goals, hopes, fears and expectations
- the level of information the patient wants about their disease and prognosis
- available treatment options, and the benefits and burdens of each
- decision-making capacity of the patient
- any existing advance care plan including whether a supported decision-maker or substitute decision-maker has been appointed
- how family dynamics affect the patient’s decision-making
- religious or cultural considerations
- relevant legal aspects.
A patient’s needs and preferences are central to the provision of health care—especially at the end of life—but there are limits to patient autonomy. For a range of reasons, there will be times when a patient’s preferences cannot be accommodated. Patients depend on healthcare professionals, family and carers, and they may need to be reminded of the impact of their preferences and decisions on others. For example, a patient may prefer to be cared for at home, but family members may be unable or unwilling to provide such care.
Healthcare professionals should be honest and clear with patients in discussing limitations to treatment, and explain the choices available, even though these are often limited. It is not helpful to offer choice when none really exists. When preferences cannot be accommodated, it may be necessary to provide emotional support to patients and their carers and families. For more information, see Breaking bad news.
Seeking advice from a colleague may help with decision-making for ethically challenging cases. Some hospitals have access to a clinical ethics committee for advice and guidance. A limited number of hospitals have a clinical ethics service that can be consulted for difficult ethical challenges.
For detailed information about decision-making and ethical and legal issues, see End of Life Law in Australia website and the Advance Care Planning Australia website. For specific considerations in paediatric palliative care, see Decision-making and ethical challenges in paediatric palliative care.