Background

Regrettably, conflicts surrounding end-of-life decisions may arise at the bedsides of critically ill patients in up to 80% of cases [1] and have been prominently featured in both the medical literature [2] and the popular press [3]. Legal challenges have arisen surrounding prominent cases such as that of the Terri Schiavo [4] in the United States (1998–2005) and Cuthbertson v. Rasouli in Canada, which reached the Supreme Court in 2013 [5]. The current COVID-19 pandemic has seemingly accentuated the longstanding tension surrounding end-of-life decisions, fundamental values, and ethical principles that arises around the application of critical care in catastrophic cases [6, 7].

In the course of such conflicts, the phrase “do everything” may be introduced by physicians, patients, or substitute decision-makers (SDM) [8]. For example, some physicians may ask patients whether they would want to “do everything” for resuscitation, offering a “resuscitation menu” [9] of options such as cardiopulmonary resuscitation and mechanical intubation. This approach may unknowingly create a false impression that these interventions would be appropriate and successful [10, 11]. Alternatively, patients’ substitute decision-makers may request that physicians “do everything”, though they may not envision interventions such as tracheostomy, central venous catheter insertion, dialysis and vasopressor use [12]. Some studies suggest that patients are less likely to accept a physician’s recommendation to withdraw life-sustaining treatment when this is contrasted with “doing everything” [13], perhaps due to the perception that the patient will receive inferior care [11]. Whether expressed as a directive to physicians, or as an assurance by physicians to patients or their loved ones, the meaning of “do everything” remains ambiguous and threatens to obscure uncomfortable choices faced by physicians, patients, and their families [14] .

This study analyzes the meaning of “do everything” by examining its use in the archive of the Consent and Capacity Board (CCB) of Ontario in Canada. The CCB is an independent tribunal made up of lawyers, physicians, nurses, and community members appointed by the province’s Lieutenant Governor [15, 16]. It was established under the provincial Health Care Consent Act (HCCA) to adjudicate disputes surrounding substitute decision-making in a fair and unbiased manner. In order for cases to reach the CCB, patients have to be incapable such that they do not understand relevant information for decision-making and are unable to appreciate the foreseeable consequences of their decision or lack of decision. Therefore, relevant parties may include the patient’s authorized substitute decision-makers (SDM), other stakeholders, and the medical team. Both the medical team or a patient’s SDM can apply to the CCB if an intractable conflict arises [17]. The CCB can direct the SDM to consent to part or all of the treatment plan proposed by physicians, or may direct the medical team to comply with SDMs’ requests [17]. Any party involved in the case may appeal the CCB’s decision to the Superior Court of Justice of Ontario [15]. Final decisions of the CCB are rendered by lawyers with expertise in health law and medical ethics. CCB decisions are presented in a narrative format that summarizes the participants’ testimony and include direct quotations from petitioning parties.

The objective of this study is to explore the meaning of the phrase “do everything” as captured within the decisions of the CCB, and to characterize the contexts in which it was invoked. These CCB decisions represent real-life scenarios in which conflicts surrounding substitute-decision making were unresolved through local hospital processes, therefore necessitating legal intervention. Short of being present for conversations between physicians and patient’s SDMs, the archive of the CCB provides the most transparent window to examine and understand the complex conflicts that can arise surrounding end-of-life decision-making. Ultimately, we hope that better understanding of appeals to “do everything” will improve the oftentimes challenging communication that occurs in the care of critically ill patients and patients at the end-of-life.

Methods

We systematically searched all cases in the CCB archive from its inception in 2003 to 2018 on the publicly accessible Canadian Legal Information Institute database (CanLII) [18] for any references to the phrase “do everything” or related phrases in the context of critical care medicine. Figure 1 presents the screening process, inclusion, and exclusion criteria. Two independent reviewers (HY, SSH) analyzed all decisions and collected characteristics of each decision. They compared their extractions and resolved any disagreements by consensus. A third reviewer (MS) adjudicated any discrepancies that could not be resolved by the two primary reviewers.

Fig. 1
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Figure 1 details the inclusion and exclusion criteria. 598 cases were screened. Common reasons for exclusion were mental health, disposition determination, and property management. 41 cases met inclusion criteria and were included in the analysis of the study

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These two reviewers also extracted any text excerpts that contained “do everything” or related phrases. Text excerpts included direct quotations or statements from patients, SDMs, or physicians present during the hearing and quotations from clinical documents submitted as evidence. Once text excerpts were identified, reviewers used Braun and Clarke’s Thematic Analysis [19] to code and generate key themes from the extracted quotations. They reached a consensus on all codes and themes and interpreted the themes to understand the context and meaning of “do everything”.

Results

Frequency of use: Of 598 cases in the CCB archive, 41 (6.9%) included the phrase “do everything” or related phrases in end-of-life situations. Most cases (33/41, 80%) occurred in a critical care setting and few (3/41, 7%) occurred in an acute care setting (Table 1). The phrase “do everything” also appeared in cases related to the Mental Health Act, but these were not specifically analyzed according to our inclusion criteria. Examples of excluded cases included those in which a patient’s status as an incapable person was reviewed in relation to their psychiatric disorder or the determination of the facility that an incapable person would be discharged to, which is labelled as “disposition” (Fig. 1). References to “do everything” related to end-of-life decision-making appeared to be becoming more common, with nearly half the cases (19/41) occurring in the last 5 years and the single highest year being 2017 (Fig. 2).

Table 1 Summary of characteristics of all cases
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Fig. 2
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Figure 2 details the year-by-year breakdown of cases. References to “do everything” related to end-of-life decision-making appear to be becoming more common, with nearly half the cases (19/41) occurring in the last 5 years and the single highest year being 2017

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Context: The phrase “do everything” appeared overwhelmingly in relation to statements made by SDMs (38/41, 93%), rather than by the medical team (3/41, 7%). In these 38 cases in which “do everything” was invoked by the SDMs, 28 cases (74%) involved conflicts around withdrawal of life-sustaining therapy, such as removal of mechanical ventilation, or dialysis, while nine cases (24%) involved withholding life-sustaining therapy (i.e., not offering therapy). In one case, the topic of dispute was not described. Patient characteristics and diagnoses are included in Table 1.

SDMs opposed the medical team’s opinion and appealed for life-sustaining intervention in 34/38 (89%) cases in which they invoked "do everything." In the remaining four cases, one involved the SDM appealing to withhold blood transfusion for religious reasons and the other three cases reflected disagreement among SDMs about the course of action to be taken. In the three cases where the medical team used “do everything”, it was always in reference to having already done everything that could be done without a positive outcome for the patient. The medical teams’ statements around having done everything served as the basis to propose a treatment plan focusing on patient comfort, such as withdrawing life-sustaining measures.

Decisions: The CCB deferred to patients’ prior expressed and applicable wishes whenever known, as in 11 cases. Only 3/11 (27%) patients had expressed a wish to have life-sustaining interventions, yet all 11 SDMs advocated for life-sustaining interventions. Accordingly, the CCB ruled for life-sustaining interventions in those three cases and against life-sustaining interventions in the remaining eight cases. In the absence of prior capable wishes (30 cases), the CCB appealed to the concept of “well-being” and tended to recommend against life-sustaining interventions (18/30, 60%). They ruled for providing or continuing life-sustaining interventions in 7 cases (23%) and declined to render a decision in 5 cases (17%).

The CCB supported the medical team’s recommendation to withdraw life-sustaining interventions in all three cases in which the medical team used the phrase “do everything.” The CCB did not offer a specific legal interpretation of “do everything” in their decisions. Instead, they followed the wording of Ontario’s Health Care Consent Act to analyze cases with reference to the legal definition of “best interest” (Table 2), paying specific attention to the concept of “well-being” within that legal definition. The CCB provided specific recommendations on individual interventions, including “palliation” and “comfort measures” in 25/41 (61%) cases.

Table 2 The legal definition of “Best Interest”
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Key Themes: Thematic analysis of these 41 cases led to the differentiation of three key themes: quantity of life versus quality of life, cognitive distress related to the prospect of the patient’s death, and moral distress related to the patient’s suffering.

SDMs invoked “do everything” to appeal for interventions that would prolong the patient’s life. These appeals were frequently based on their understanding of patients’ wishes to live (23/38, 61%), beliefs in religion or faith (12/38, 32%), or hope (8/38, 21%). SDMs used “do everything” as a medical imperative with phrases such as “do everything possible” [20], “do everything to preserve [life]” [21], “everything had to be done to continue life” [22] (Table 3). In contrast, the medical team advocated for treatment plans that would prioritize the patient’s quality of life. They used “do everything” to encapsulate the various interventions that had already been undertaken that had failed to improve the patient’s condition. One physician stated that “everything has been tried and that his heart can’t recover” [23]. The medical team recommended focusing on the patient’s quality of life by withdrawing life-sustaining interventions. One physician made this trade off explicit when they stated that “death would alleviate [the patient’s] suffering and improve [the patient’s] well-being” [23] (Table 3).

Table 3 Sample quotations illustrating the different ways that “Do Everything” were used by substitute decision-makers and medical team
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Second, SDMs appeared to have experienced significant cognitive distress around the prospect of accepting the patient’s death (Table 4). SDMs expressed mistrust of the medical team, guilt at having to make decisions, and a desire not to be responsible for the consequences of those decisions. Two SDMs felt that pursuing palliation was akin to euthanasia, and seven expressed the belief that prolonging a patient’s life was more important than relieving suffering.

Table 4 Sample quotations illustrating the distress that substitute decision-makers and medical team experienced
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These positions contrasted with the positions of the medical teams, who expressed that SDMs’ request to prolong life at all costs was morally distressing for them (Table 4). One physician felt that following the SDM’s wish was “morally and ethically contradictory to his oath to do no harm” [21]. Other physicians found these life-prolonging interventions “inhumane” [20], “uncomfortable” [24, 25], and only served to add to the patient’s suffering and pain without any benefits or increasing the chance of a meaningful recovery.

Discussion

In response to the recognized ambiguity surrounding the phrase “do everything” as it appears in the course of medical communication [14], this study demonstrates two broad conclusions regarding its uses in the CCB archive. First, references to “do everything” highlighted conflicts over quantity versus quality of life. Whereas SDMs commonly invoked the desire to “do everything” to prolong life at all costs, medical teams identified patient quality of life and likelihood of recovery as drivers of decision-making. In contrast to what one SDM in our study perceived as the physician’s role to prolong life (“the doctors’ job was to prolong life”) [26], physicians in our study objected to prolonging life at all costs and preferred palliative care when patient’s health continued to decline despite maximal medical therapy (“Although it [palliative care] could shorten [patient’s] life, it would ensure that he was kept comfortable and would improve his quality of life and respect his dignity.” [24]). SDMs were observed to continue or escalate interventions based on any small possibility of recovery. This was even against assurances from the medical team to the contrary, and often despite considerations of the patient's quality of life or the probability of success. This is illustrated in one case: “[SDM], although hopeful of a recovery, could not or refused to accept the expert doctors’ opinions that his father [patient] would not recover.” [26] The meaning of this quotation reflects that while the SDM felt that there was a possibility of recovery, the medical team deemed the recovery improbable. Decision-making based on the possibility of recovery can be a “tyranny of hope”, which has been described in the bioethics literature as a paradoxical effect where a focus on hope and recovery causes acceptance of physical and emotional suffering at the expense of loss of function and independence [27]. It is this divergence in perspectives on death versus suffering that was consistently the locus of conflict between SDMs and the medical team.

Second, appeals to “do everything” were associated with expressions of distress from the SDMs and the medical team, albeit of different kinds. SDMs’ statements suggest a certain cognitive distress about the prospect of the patient’s death, while the medical team expressed moral distress regarding patient suffering due to life-prolonging interventions. This once again contrasts the importance placed by the SDMs and the medical team on death versus suffering, respectively. Previous research has similarly demonstrated that SDMs perceive palliative approach as a choice between life or death, around which they express unresolved questions or even resentment towards the medical team [28, 29]. Other studies echo our results in that medical teams report “practitioner suffering” related to the treatments they offer to patients at the end-of-life, “powerlessness” in the face of SDMs’ requests for treatments they deem harmful, and the expressions of “futility” of providing care that serve not to prolong life but to prolong the dying process [30, 31].

When SDMs invoke “do everything”, how then should physicians respond? Our results suggest that emphasizing a patient’s prognosis may fail to address SDMs’ cognitive distress and may only heighten tensions, since SDMs may choose to reject the medical team’s assessments. Some physicians have appealed to the concept of “best interest” [32], but prior work has identified “best interest” as being subject to interpretation by each party involved and is unlikely to lead to consensus [33,34,35]. Additionally, even though “best interest” has been legally defined [32], our study demonstrated that the CCB tended to focus on the “well-being” component, which more closely aligned with concepts such as the experience of pain or suffering.

Structured tools such as the Serious Illness Conversation guide (SICG) [36] may be helpful to guide conversations between a medical team and SDMs in end-of-life circumstances. Although initially piloted with patients with advanced cancer [37], the SICG has been extended to critical care and has been shown to enhance clinicians’ understanding of patient’s wishes, SDMs’ understanding of patients’ conditions, and trust in the physician–patient relationship [38]. The SICG avoids using ambiguous phrases such as “do everything” and instead explores goals, fears, critical abilities with standardized questions such as, “what abilities are so critical to your life that you can’t imagine living without them?” and “if you become sicker, how much are you willing to go through for the possibility of gaining more time?” [36] The SICG supports SDMs to reflect on what would be the most important and necessary for the patient, rather than on prolonging life at all costs. Such reflection may help to align SDMs’ decision with the patient’s values. As our results suggest, SDMs’ desire to sustain life no matter what may often be at odds with patient’s previously expressed wishes. By answering these structured questions such as those in the SICG, SDMs may be relieved of the pressure and guilt associated with deciding not to pursue all possible interventions to sustain life. Some critical care physicians have also reported less anxiety and improved professional satisfaction when using the SICG as it facilitated discussions of realistic expectations [38]. Using the SICG can also provide an opportunity for physicians to provide recommendations on a plan of care, including recommending palliative care and explaining its active role in symptom management and affirmation of patient values. A guideline made famous by William Osler is worth repeating: our duty to patient is to cure sometimes, relieve often, and comfort always [39].

It is important to note that there is significant global variability surrounding the practice of withdrawal of life-sustaining treatment. For example, withdrawal of life-sustaining treatment is more prevalent in countries in North America and Europe than in the Middle East and Asia [40]. This may reflect the different socio-cultural values as well as political organization and economic realities. We have not identified a similar study exploring decisions around end-of-life care in a different cultural context, though such a study would reflect an important contribution to this literature.

The strengths of our study include its novelty in the use of legal transcripts to explore the meaning of phrases used in medical communication, as well as its ongoing relevance. The increasing frequency of appearances of “do everything” in the CCB archive may indicate increased public awareness of life-sustaining measures from medical and non-medical literature [2, 3], publicized legal cases [4, 5], and over-representation of success of life-sustaining measures portrayed in mainstream media [10]. The COVID-19 pandemic has further highlighted the need for thoughtful discussion surrounding end-of-life care for patients who are unlikely to survive despite maximal ventilatory support as well as patients denied of critical care due to resource shortages [41].

The main limitation of this study is that it furnishes only an indirect understanding of “do everything” since we are analyzing transcripts of testimony to the CCB, and not specific conversations between physicians and patients or SDMs. We acknowledge that since these were extreme cases that required adjudication by the CCB, they may not represent the typical local processes of goals of care discussions between physicians and SDMs, which generally end with consensus. Because findings of the CCB can be appealed, the absolute final verdict or outcome of each decision has not been explored and is outside the scope of this study. Our analysis was based on cases that appeared in the CCB archive as of 2018 and therefore we cannot speak to cases that may have occurred since then.

Conclusion

This work points to the complexities of physician–patient and physician-SDM communication in the care of the critically ill, and the importance of clarifying whether one’s appeal to “do everything” has as its goal the patient’s quality of life or quantity of life. This divergence in perspectives on death versus suffering was consistently the locus of conflict. Clarity and transparency are to be valued, and potentially ambiguous phrases such as “do everything” should be avoided. To better understand the origins and limitations of “do everything” and similar utterances, future studies could seek to characterize and analyze such rhetorical phrases using a historical or philosophical lens.