The delivery of quality care at the end of life should be seamless across all health care settings and independent from variables such as institutional largeness, charismatic leadership, funding sources and blind luck … People have come to fear the prospect of a technologically protracted death or abandonment with untreated emotional and physical stress. (Field and Castle cited in Fins et al., p. 1–2). 1 Australians are entitled to plan in advance the medical treatments they would allow in the event of incapacity using advance directives (ADs). A critical role of ADs is protecting people from unwanted inappropriate cardiopulmonary resuscitation (CPR) at the end stage of life. Generally, ADs are enacted in the context of medical evaluation. However, first responders to a potential cardiac arrest are often non-medical, and in the absence of medical instruction, default CPR applies. That is, unless there is a clear AD CPR refusal on hand and policy supports compliance. Such policy occurs in jurisdictions where statute ADs qualifying or actioning scope is prescriptive enough for organisations to expect all health professionals to appropriately observe them. ADs under common law or similar in nature statute ADs are open to broader clinical translation because the operational criteria are set by the patient. According policy examples require initial medical evaluation to determine their application. Advance care planning (ACP) programs can help bring AD legislation to effect (J. Cashmore, speech at the launch of the Respecting Patient Choices Program at The Queen Elizabeth Hospital, Adelaide, SA, 2004). However, the efficacy of AD CPR refusal depends on the synergy of prevailing AD legislation and ensuing policy. When delivery fails, then democratic AD law is bypassed by paradigms such as the Physician Orders for Life-Sustaining Treatment (POLST) community form, as flagged in Australian Resuscitation Council guidelines. 2 Amidst Australian AD review and statute reform this paper offers a perspective on the attributes of a working AD model, drawing on the Respecting Patient Choices Program (RPCP) experience at The Queen Elizabeth Hospital (TQEH) under SA law. The SA Consent to Medical Treatment and Palliative Care Act 1995 and its ‘Anticipatory Direction’ has been foundational to policy enabling non-medical first responders to honour ADs when the patient is at the end stage of life with no real prospect of recovery. 3 The ‘Anticipatory Direction’ provision stands also to direct appointed surrogate decision-makers. It attunes with health discipline ethics codes; does not require a pre-existing medical condition and can be completed independently in the community. Conceivably, the model offers a national AD option, able to deliver AD CPR refusals, as an adjunct to existing common law and statute provisions. This paper only represents the views of the author and it does not constitute legal advice. What is known about the topic?Differences in advance directive (AD) frameworks across Australian states and territories and between legislated and common law can be confusing. 4 Therefore, health professionals need policy clarifying their expected response. Although it is assumed that ADs, including CPR refusals at the end of life will be respected, unless statute legislation is conducive to policy authorising that non-medical first responders to an emergency can observe clear AD CPR refusals, the provision may be ineffectual. Inappropriate, unwanted CPR can render a person indefinitely in a condition they may have previously deemed intolerable. Such intervention also causes distress to staff and families and ties up resources in high demand settings. What does this paper add?That effectual AD law needs to not only enshrine the rights of individuals but that the provision also needs to be deliverable. To be deliverable, statute AD formulation or operational criteria need to be appropriately scoped so that organisations, through policy, are prepared to legally support nurses and ambulance officers in making a medically unsupervised decision to observe clear CPR refusals. This is a critical provision, given ADs in common law (or similar statute) can apply broadly and, in policy examples, require medical authorisation to enact in order to ensure the person’s operational terms are clinically indicated. Moreover, compliance from health professionals (by act or omission) with in-situ ADs in an unavoidable emergency cannot be assumed unless the scope harmonises with ethics codes. This paper identifies a working model of AD delivery in SA under the Consent to Medical Treatment and Palliative Care Act 1995 through the Respecting Patient Choices Program. What are the implications for practitioners?A clear, robust AD framework is vital for the appropriate care and peace of mind of those approaching their end of life. A nationally recognised AD option is suggested to avail people, particularly the elderly, of their legal right to grant or refuse consent to CPR at the end of life. ADs should not exclude those without medical conditions from making advance refusals, but in order to ensure appropriate delivery in an emergency response, they need to be scoped so as that they will not be prematurely enacted yet clinically and ethically safe for all health professionals to operationalise. Failure to achieve this may give rise to systems bypassing legislation, such as the American (Physician Orders for Life-Sustaining Treatment) POLST example. It is suggested that the current SA Anticipatory Direction under the Consent to Medical treatment and Palliative Care Act 1995 provides a model of legislation producing a framework able to deliver such AD expectations, evidenced by supportive acute and community organisational policies. Definitions.Advance care planning (ACP) is a process whereby a person (ideally ‘in consultation with health care providers, family members and important others’ 5 ), decides on and ‘makes known choices regarding possible future medical treatment and palliative care, in the event that they lose the ability to speak for themselves’ (Office of the Public Advocate, South Australia, see www.opa.sa.gov.au). Advance directives (ADs) in this paper refers to legal documents or informal documents under common law containing individuals’ instructions consent to or refusing future medical treatment in certain circumstances when criteria in the law are met. A legal advance directive may also appoint a surrogate decision-maker.
Palliative and end-of-life care in glioblastoma: defining and measuring opportunities to improve care