End-of-life decision making and palliative care

Introduction

Improved socioeconomic conditions and advances in medicine, including improved management of chronic disease, have resulted in extended life expectancy. Prior to death, many people now experience a period of progressive deterioration in health and loss of independence due to complex multi-system disease and possible cognitive impairment. It is estimated that up to 40,000 adult deaths occur in Australia annually in the setting of a medical decision to withhold, limit or withdraw treatment. End-of-life decision making, such as decisions not to provide, to limit or to discontinue life-sustaining treatments and the decision to transition care to a palliative approach are now a common part of the practice of emergency medicine.

End-of-life discussions and decision making can be challenging owing to the complexity of balancing family wishes with the best interests of the patient and dealing with families in times of great stress. End-of-life decisions require an understanding of the law and ethical positions of peak medical bodies and are greatly assisted by patients and their families having considered, discussed and documented their wishes. These discussions and decisions may be communicated informally or formally in advance care plans and directives supported by common law and legislation.

Palliative care is the provision of care to those facing life-limiting or life-threatening illness and focuses on the needs of the patient as a whole across various domains, not just the physical. In addition, it looks at the family as a unit also requiring care. For patients for whom the palliative approach should be adopted, palliative care skills enable the emergency physician to engage patients on a dying trajectory and allow them to take control of this process and plan for the time they have remaining, be it hours, days or months. This enables planning for the non-physical aspects of the dying process and reduces time lost to futile medical endeavours.

The most important aims of end-of-life discussions and palliative care are the identification of what the patient sees as an acceptable outcome from any proposed treatment, enabling early and wise decisions about the appropriateness of treatment and improving communication with patients and families to facilitate the provision of patient-centred care.

Definitions

Definitions are given in Table 21.6.1 .

General legal principles in end-of-life decision making

Patients have the right to decide whether to accept or refuse medical treatment. This right is underpinned by Western liberal concepts of self-determination and individual autonomy. Although the state has an interest in preserving the life and health of citizens, this interest is subject to an individual’s right to self-determination.

Therefore a patient’s informed consent must be obtained before treatment commences. To perform a medical procedure against the wishes of a patient can amount to trespass and battery in common law and can also contravene guardianship and medical treatment legislation. A legitimate refusal of treatment must be respected, even if it is contrary to medical opinion. Where a person lacks capacity and so cannot give consent, he or she may have an advance directive (AD), or consent should be obtained from a legally authorized decision maker, such as a substitute decision maker or parent if the patient is a child.

There are exceptions to the need for consent to treat. One is cases of emergency where both the common law and various types of legislation (including guardianship legislation) permit the provision of lifesaving or other urgent treatment. Another exception is where mental health legislation authorizes treatment.

A patient generally has no legally enforceable right to demand a particular treatment. Medical practitioners are not obliged to offer treatment that is not in a patient’s best interests, such as treatments that are futile and where the burdens exceed the benefits of treatment. In Australia, an exception exists under Queensland’s guardianship legislation for adults who lack decision-making capacity; in such cases consent is required to withhold or withdraw life-sustaining treatment.

Although the vast majority of disagreements about end-of-life care are resolved informally, recourse may also be had to the courts and, for adults who lack capacity, to guardianship tribunals and the statutory office of public advocate or guardian.