We used a modified Delphi technique with a multidisciplinary expert panel to develop guidelines for quality EOL care during withdrawal of life-sustaining measures. These guidelines are intended to help clinicians provide high-quality EOL care by balancing the medical, legal, and ethical considerations that arise during withdrawal of life-sustaining measures in a manner suggested by a group of experienced professionals. These guidelines are not evidence-based; they were developed to provide a resource for front-line clinicians who are planning to withdrawal of life-sustaining measures and would like to benefit from evidence-informed consensus opinions from an interdisciplinary panel of experienced professionals in the field.
Previous reports have highlighted practices that drew concern from members of healthcare teams, and at least one episode that prompted an investigation by the US Office of the Inspector General . One of the recommendations from this investigation was to develop comfort care guidelines and an order set, among other things. Treece et al. reported high nurse and physician satisfaction associated with the development of a withdrawal of life-sustaining measures protocol, although there was no reported change in the quality of death and dying according to bedside nurses . This highlights the need to study the effect of implementing these guidelines, in order to determine whether they actually result in improvements in patient care.
These guidelines may alleviate concerns about the process of WDLS for organ donation after cardiac death. Previous reports have identified concerning cases of organ donation in which physicians were suspected of managing withdrawal of life-sustaining measures differently from normal practice in the hope of optimizing donor organ function . Although not specific to organ donation, these guidelines can be used to ensure that consistency of EOL care is maintained. If physicians manage all cases of WDLS using the same management principles, regardless of whether or not DCD is considered, this will hopefully eliminate any concerns and perception that organ function might be given priority over the management of the donor.
These guidelines focus on the practical aspects of withdrawing life-sustaining therapies from patients whose treatment goals are palliative and who are not expected to survive long after WDLS. The discussion and framework for deciding whether or not to WDLS is beyond the scope of this project, and the general assumption of these guidelines is that the decision to WDLS has involved the patient or family members to a degree consistent with ethical and legal requirements. The CCCS position paper on withholding or withdrawal of life support  remains a relevant and useful resource in Canada, and others are available to inform practitioners in other jurisdictions . In addition, regulatory bodies in most jurisdictions have established policies to guide physician behaviour in this area. These WDLS guidelines are meant to supplement other important aspects of EOL care that have been comprehensively reviewed by Rocker and Cook  to provide the highest-quality EOL care for patients dying in the ICU.
Because WDLS guidelines must integrate medical, ethical, and legal considerations, these guidelines may not apply to jurisdictions with different ethical and legal norms. For example, in many parts of the world, WDLS itself is illegal or strongly avoided [2, 3, 15, 31]. Our guidelines suggest a preference for extubation over leaving patients intubated; some practitioners may have a stronger preference for a “soft landing”—a slow WDLS without sudden events that might be perceived as precipitating death (e.g. extubation) . Some patients and staff do not consider feeding and fluids to be medical therapies, and they would not consider it acceptable to withhold these even during WDLS . It would be unrealistic to expect that one set of guidelines would be universally relevant and acceptable. But these guidelines might prompt other jurisdictions to develop their own WDLS guidelines, also with the intention of promoting good medical practice.
These guidelines are also intended for a general critical care population and reflect limitations in our ability to detect distress in some critically ill patients. For example, most of the stronger recommendations in Section 2 (“Assessment of distress”) involve assessments of distress based on patient behaviours, but these behaviours may not be present in patients with brain injury. At the same time, some patients in a vegetative state may not be able to experience pain or anxiety, in which case they would not require symptomatic treatment . These factors may explain why neurologically injured patients tend receive lower doses of opioids (and sometimes no opioids at all) during WDLS [34, 35], and why clinicians may approach WDLS differently in this population. In addition, the guidelines state that chemically paralysed patients can undergo WDLS even before the paralysis has worn off, albeit in exceptional cases and with some modifications in approach (see Electronic Supplementary Material Appendix 3). Some would consider this to be a controversial recommendation that would require extensive documentation and justification in the patient’s chart, and may even be illegal in some countries.
The degree of consensus was quite high for most sections of the guidelines, but some working group participants expressed concern that Section 3 (“Pharmaceutical management of distress”) was too specific and prescriptive. For example, the guidelines suggest that a patient requiring more than one bolus dose of opioid for pain or dyspnoea should be started on an infusion of opioids. This may represent a desire of working group members to avoid the risk of undertreating symptoms in a patient who is expected to die, even if this means that the patient might receive more opioid than necessary.
Strengths of these guidelines include the use of a large, multiprofessional group of experts, and an iterative consensus process to ensure that they reflect well-considered opinions, informed by the evidence. Overall, there was a high degree of consensus for all aspects of the guidelines despite reports of variable practices [12–14], a poor evidence base, uncertainty about the balance between desirable and undesirable outcomes, lack of cost and resource data, and the controversial nature of WDLS. These factors led us to develop a new system of recommendations rather than use the GRADE system.
Limitations of these guidelines include the fact that our expert group was all from one country and included a purposively selected group of 36 experts. Furthermore, the quality of the evidence is low; most of the literature consists of expert opinion and observational studies. For example, one section (2.3) suggested the use of the Respiratory Distress Observation Scale (RDOS), which has not been validated in this setting. For this reason, we used a recommendation system that integrated both ethical and clinical considerations. Notably, the fact that so many of the guidelines were given a high strength of recommendation suggests that many participants attached a high value to low-quality evidence, or gave a high recommendation despite the lack of evidence. Although we emphasized the instructions regarding the strength of recommendation, we did not enforce the evidence criterion, nor did we restrict the guidelines to issues raised in the literature. We felt that it was more important to respect a strong recommendation from experts than to limit recommendations on the basis of a poor evidence base. Finally, although we included participants from non-medical professions, we did not have any patient advocates or family participants, or members of the clergy. Clearly, high-quality EOL care involves a respect for patient wishes whenever possible, and an incorporation of family preferences to the degree possible. The guidelines show the strong deference given to patient and family perspectives in Section 1.
We recognize that our guidelines were also developed in the context of a changing legal and ethical landscape with regards to Physician-Hastened Death (PHD). At the time of guideline development, PHD was not legal in Canada. The Supreme Court of Canada did strike down the legal prohibition of PHD in February 2015 , but since this decision only applies to adults capable of providing explicit consent, this decision is unlikely to affect the care provided to most patients in Canadian ICUs, and does not apply outside of Canada. PHD may be considered acceptable for incapable patients in ICUs in other countries [37, 38].
In conclusion, we present these guidelines for WDLS to help physicians provide high-quality EOL care in the ICU. Future studies should address their effectiveness from both critical care team and family perspectives. More research is needed to expand the evidence base in this area.