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We doctors are facing a problem that, at present, we are ill-equipped to manage. Sadly, it is not only our patients but we ourselves who are suffering as a result. Only last week I (CM) found myself in a situation where I had to defend the autonomy of a dying woman, seemingly because her values did not align with the ideology of the medical specialists in charge of her care. This patient was a 66-year-old woman who was recently diagnosed with metastatic lung cancer to the liver, brain and bone presented to the hospital with progressive dyspnoea and fatigue. Imaging revealed both a large pleural effusion and a pericardial effusion with signs of early tamponade. All this after a single dose into her immunotherapy regimen. She was admitted to the intensive care unit (ICU) overnight following insertion of a chest drain and supported on high-flow oxygen. In morning handover, the night registrars squirmed as they discussed her case. I listened and found myself wondering, ‘How did this woman end up in the ICU?’ When I spoke to her, my questions only multiplied. Despite her predicament, she was clear and consistent in expressing her values and care preferences – namely that she had no desire to pursue invasive interventions to prolong her life without adding meaningful quality. She explained that she had lived a good life and the idea of undergoing a pericardial window to free the fluid from around her heart was not something she wished to endure. Understanding that without the operation she could soon die, she had made her peace with this. Unfortunately, her treating specialists had not. What followed was a cascade of well-intentioned but fragmented clinical encounters, well meaning as they were. A parade of physicians, each seeking clarity, tried to convince this woman to accept the interventions they had to offer in an effort to prolong her life. Yet each time she declined. First, they questioned her, then they questioned me, for agreeing to support her goals of care (GOC), namely putting comfort and dignity above life-prolonging treatment. When it became evident that despite her intact decision-making capacity and unwavering clarity her voice was not being heard, I found myself repeatedly asking, ‘Why won't anyone listen?’ My only apparent ally was the ICU nurse who had spent the entire day with the patient bearing witness to each encounter. She recounted eight separate GOC conversations, each identical to the last. Declining intervention was tantamount to dying; yet each time, the patient quietly reasserted her values: quality not quantity. I tried to put myself in the mindset of the other specialists to understand their perspective better. From the perspective of the treating specialists, their persistence was understandable. They saw a 66-year-old woman with a potentially reversible complication, a pericardial effusion and an immunophenotype that might respond favourably to ongoing therapy. In that context, offering a pericardial window appeared logical and clinically justified. Their intent was to extend life and provide an opportunity for further treatment. I could see what they saw and why it was so hard to walk away. However, crucially, what my colleagues seemed to have forgotten was that underpinning the GOC process lies the need to respect and extend patient autonomy, which helps patients maintain control over their healthcare decisions, even more importantly when outcomes are likely to be unfavourable. By the end of the day, the cumulative effect of repeated conversations was distressing for the patient and counterproductive for the team. These conversations, meant to empower and respect autonomy, had become repetitive and distressing. How had discussions meant to empower her crossed the line into what felt like an abuse of power? This raised a confronting question: At what point does reiteration become coercion? This tension highlights the need to balance clinical optimism with patient-defined values. Unfortunately, such encounters are not uncommon, and they highlight the importance of adopting a more structured, team-based and patient-centred approach to GOC discussions. If such frameworks were more widely implemented, they could better support clinicians in navigating these complex situations while safeguarding patients' dignity. Without them, there is a risk that repeated and fragmented conversations may unintentionally diminish a patient's sense of autonomy and respect at the end of life, compounding their suffering at a profoundly vulnerable time. With the advent of increasing global life expectancy, the population of patients hospitalised in high-income countries has shifted to older, more comorbid patients increasingly undergoing more complicated treatment procedures and regimens. The run-on effect of this is increasing admission rates of these patients to the ICU, with older and frailer patients now making up the fastest-growing subgroup in intensive care medicine.1, 2 Previous work highlights both the great variability and challenges associated with decision-making surrounding life-sustaining treatments in this patient population.3 Perhaps consistent with this ambiguity, there is an absence of evidence to guide Australian clinicians in both the timing and structure of GOC conversations. The severity of the issue is highlighted by the only multi-centre study4 to date that examined the prevalence and timing of GOC documentation in Australian ICU patients. This study found that a mere 30% had documented evidence of GOC documentation following admission to the ICU.4 Given that documented GOC conversations are an evidence-based medical practice associated with improved quality of communication and higher patient/family satisfaction,5, 6 this is especially worrying. It suggests 70% of critically ill patients may be at risk of receiving care that is misaligned with their values and preferences. This underscores the importance of early identification of these high-risk patients, and timely initiation of GOC discussions,7-9 which can facilitate goal-concordant care, minimise both physiological and psychological harms, improve clinical outcomes and decrease the use of non-beneficial healthcare resources. Yet, despite this clear benefit, standardised guidelines governing GOC discussions in this vulnerable patient population remain absent. In Australia, there is no national governing framework for GOC discussions; instead, governance for the public healthcare setting comes in the form of state and territory-based legislation and policy frameworks.10-18 While these documents provide the legal, ethical and operational tools that underpin GOC processes in the Australian public healthcare system, a careful inspection of these documents reveals a fragmented and inconsistent landscape. Terminology, thresholds for escalation, documentation requirements and recommended personnel vary widely across jurisdictions, resulting in ambiguity for clinicians and variability in patient care. The only semblance of national guidance, albeit carrying no legal jurisdiction, comes courtesy of the Australian Commission on Safety and Quality in Health Care. Within the ‘Comprehensive Care Standard’, GOC is acknowledged as key to shared decision-making and person-centred care delivery in inpatient settings, including the ICU.19 Yet the guidance offered to clinicians consists of a single-page document outlining the purpose and structure of these conversations, hardly sufficient for navigating the nuanced and ethically fraught territory of critical care decision-making. When it comes to GOC discussions, especially in the ICU, the hospital's most high-stakes environment, the national governance landscape is even more barren. Just two documents exist: the ANZICS statement on withholding and withdrawing treatment20 and the ANZICS Statement on Care and Decision-Making at the End of Life for the Critically Ill.20 While valuable, neither document was purpose-built to guide GOC discussions. They do not address the proactive, upstream planning needed to avoid crisis-driven decision-making. Why then does the most vulnerable cohort in our hospitals, the critically ill, lack a purpose-built, national standardised framework to inform goal-concordant care? In the absence of such guidance, we risk inconsistency of practice, delaying critical conversations and exposing patients and families to unnecessary harm. The development of a structured framework to guide timely, consistent GOC conversations is urgently needed to improve care delivery, patient autonomy and system outcomes in the overburdened, under-resourced public healthcare setting. By bringing these issues to the forefront, we hope to improve the current GOC landscape. At present, we lack the knowledge, the time, the tools and the proper training to hold these integral care conversations. In the absence of a robust, evidence-based GOC framework, I for one feel we are failing our patients, their families and, not least of all, ourselves. Data sharing not applicable to this article as no datasets were generated or analysed during the current study.
Michel et al. (Sat,) studied this question.