'Balancing Patient and Societal Interests in Decisions About Potentially Life-Sustaining Treatment: An Australian Policy Analysis' by Eliana Close, Ben P. White & Lindy Willmott in (2020) 17 Journal of Bioethical Inquiry 407–421 comments
This paper investigates the content of Australian policies that address withholding or withdrawing life-sustaining treatment to analyse the guidance they provide to doctors about the allocation of resources. All publicly available non-institutional policies on withholding and withdrawing life-sustaining treatment were identified, including codes of conduct and government and professional organization guidelines. The policies that referred to resource allocation were isolated and analysed using qualitative thematic analysis. Eight Australian policies addressed both withholding and withdrawing life-sustaining treatment and resource allocation. Four resource-related themes were identified: (1) doctors’ ethical duties to consider resource allocation; (2) balancing ethical obligations to patient and society; (3) fair process and transparent resource allocation; and (4) legal guidance on distributive justice as a rationale to limit life-sustaining treatment. Of the policies that addressed resource allocation, this review found broad agreement about the existence of doctors’ duties to consider the stewardship of scarce resources in decision-making. However, there was disparity in the guidance about how to reconcile competing duties to patient and society. There is a need to better address the difficult and confronting issue of the role of scarce resources in decisions about life-sustaining treatment.
The authors argue
In response to recent high-profile disputes, clinicians and ethicists have argued that limited medical resources are relevant to decisions to withhold or withdraw life-sustaining treatment (Truog 2017; Wilkinson and Savulescu 2019), a view shared by some members of the public (Brick et al. 2019). Although most doctor-initiated decisions to limit life-sustaining treatment are based on the rationale that ongoing active treatment is “futile” or “non-beneficial” (and therefore not in the patient’s best interests), distributive justice affords a distinct ethical justification for non-treatment, particularly in publicly funded healthcare systems (Truog 2017; Wilkinson and Savulescu 2019). Interventions at the end of life that provide little or no benefit consume scarce healthcare resources, which could be used more efficiently by others (Huynh et al. 2014; Carter et al. 2017). Even so, how to incorporate resource considerations into current decision-making paradigms is debated, and the degree of doctors’ involvement in allocation decisions is controversial (Truog et al. 2006; Scheunemann and White 2011). Contrary to arguments that resources should be taken into account, some argue that doctors are exclusively patient advocates and it is unethical to limit treatment at the bedside that may provide a benefit, however small (Levinsky 1984; Wyller 2014; Close et al. 2019b). While medical policies are a regulatory mechanism that can navigate this debate and set out the extent of doctors’ duties to consider resources in their decisions, little is known about the content of policies that address withholding or withdrawing life-sustaining treatment in Australia. This article therefore sets out to investigate the question: what professional guidance is given to doctors about the role of scarce resources when making decisions about withholding or withdrawing life-sustaining treatment?
Despite increasing discourse about the importance of resource management, reliance on resource allocation as a basis for withholding or withdrawing life-sustaining treatment can be difficult in practice, for several reasons. First, the prospect that resource allocation is relevant to end-of-life decision-making remains taboo, raising the spectre of “death panels” and unjustified age and disability discrimination (Truog et al. 2006; Scheunemann and White 2011; Cohen 2012). This taboo may partly explain why interests-based and resource-based rationales for limiting life-sustaining treatment are not sufficiently distinguished in practice (Rubin and Truog 2017). Indeed, some doctors perceive that the concept of futility masks both conscious and unconscious rationing (Close et al. 2019b), the “withholding … of a medically beneficial service because of that service’s cost to someone other than the patient” (Ubel and Goold 1997, 75). Given that health resources are limited, rationing is necessary and justifiable, provided it is accomplished transparently using fair processes (Daniels 2000; Scheunemann and White 2011). However, evidence that doctors ration at the bedside (Hurst et al. 2006; Ward et al. 2008), sometimes under the guise of futility (Close et al. 2019b), suggests the requisite transparency is lacking. This negatively impacts the profession as well as patients and families, and some doctors report feeling conflicted by the “gatekeeper” to treatment role that can be thrust upon them, absent explicit resource-allocation policies to support their decisions (Close et al. 2019b).
A second source of difficulty is that the legal basis for using resource constraints to justify withholding or withdrawing life-sustaining treatment is largely untested. Since legal disputes over life-sustaining treatment are typically brought under the court’s parens patriae jurisdiction, which is focused on an individual patient’s best interests, resource issues are usually not argued by the parties nor do they form part of the court’s deliberations. In several cases, Australian courts have commented that resources are not relevant to best interests (Willmott et al. 2014). Nevertheless, the courts traditionally support rationing decisions, provided they are made transparently and founded on fair administrative policies or processes (Close et al. 2018). The challenge in this area is that often these explicit policies do not exist.
A third source of difficulty is what constitutes “patient best interests” or “rationing” can be matters of perspective. Conflicts over life-sustaining treatment typically arise when the degree of benefit to the patient is marginal or uncertain; doctors have a clinical rationale for saying the treatment is unwarranted. From the viewpoint of the person seeking treatment, who perceives some benefit or chance of a benefit, denying such treatment could not be justified on a “best interests” basis so could be regarded as rationing. However, from the doctor’s viewpoint, denying the treatment amounts to a decision to forgo “inappropriate” or “futile” treatment on “clinical grounds” rather than one based on rationing. Therefore, parallel resource considerations could be construed as responsible stewardship. When a genuine clinical rationale exists to recommend treatment withdrawal, doctors may not turn their minds to parallel resource-based rationales or may be reluctant to invoke them as these could be perceived as a form of pressure on families to “free up the bed.” In the absence of a clear decision-making paradigm or policies that support taking resource factors into account, the typical path is either to “cave-in” to surrogates and accede to a request for treatment that the doctor believes is inappropriate (Pope 2016) or continue to negotiate treatment withdrawal under the guise that this is solely a clinical decision and the patient’s interests are the only ones at stake.
Commentators have urged that resource-based rationales for non-treatment should be clearly distinguished and disclosed to promote more transparent decision-making processes and enhance trust in the medical system (Truog et al. 2006; Young et al. 2012). Medical policies can help doctors distinguish between distributive justice and patient interests and promote fair and transparent processes to guide decision-making (Rubin and Truog 2017; Bosslet et al. 2015). Policies are an important regulatory mechanism because they have both legal and ethical weight; depending on their provenance they can be persuasive or even determinative in court (McDonald 2017). However, to our knowledge very little literature (Martin 2013; Levinson et al. 2014) has examined Australian policies on withholding and withdrawing life-sustaining treatment for adult patients. Therefore, the purpose of this paper is to analyse Australian policies on withholding and withdrawing life-sustaining treatment to determine the extent of guidance they provide about distributive justice. We set out to investigate the extent to which publicly available policies address scarce resources as a factor in decision-making, distinct from a patient’s interests, what they say about the doctor’s role in making resource-based decisions, and whether they promote a transparent and fair approach when allocating resources at the bedside.