A good death in intensive care

Abstract

A key goal of admitting a patient to ICU is to improve survival. Survival can mean many things [1], but most clinicians think instinctively about hospital mortality; discharge home; quality of recovery; and prolongation of life. Achieving these outcomes can come with significant costs, including delirium; loss of control; dependence; invasive procedures; and functional decline [2-4]. Alongside balancing these benefits and burdens is sometimes the need to provide a good dying experience. Increasingly, ICU is recognised not only as a place of rescue, but also as a place where compassion, dignity and comfort can be provided at the end of life. Around 20% of patients admitted to ICU will die during their stay [5], and transitioning care to focus on symptom-based management precedes most deaths [6]. End-of-life care is a central component of modern intensive care practice rather than a failure of it.

Considering this, the work by Donaldson et al. provides a timely insight into patient experience on the ICU [7]. The authors used a mixed methods approach to explore the experiences of 26 survivors of ICU admission. The accounts make for difficult reading but will come as little surprise to clinicians working in critical care. Participants described hallucinations; fear; loss of autonomy; and the psychological burden of prolonged dependence on life-sustaining technologies. One described being reduced to “a thing on the bed, rather than a person”. Some participants also described ICU as a place of safety and compassionate care. The study concluded that, for patients with a low likelihood of survival, admission to ICU may risk a negative dying experience. These are, necessarily, the reflections of those who survived, imagining a death they did not undergo, and this is the most important caveat of their work. Two fictitious examples here (Boxes 1 and 2) help illustrate how this tension may manifest in practice.

Neither Mrs A nor Mr B could have described their experiences during the final stages of illness, so suffering may remain partially hidden from clinicians and relatives alike. Mrs A entered hospital expecting curative surgery, yet complications led to prolonged technological dependence and chronic critical illness (Box 1). Rather than a single terminal event, her dying became extended and highly medicalised, with risks of psychological suffering, moral distress among staff and complicated bereavement. Conflict, mistrust and loss of autonomy complicate decision-making, and although there are opportunities throughout for palliative and symptom-focused care, clinicians will recognise how difficult these situations become.

The trajectory of Mr B was shorter (Box 2), with rapid transition from apparent health to dependence on advanced technology, leaving little opportunity to discuss acceptable outcomes beforehand (Box 2). Withdrawal of extracorporeal support may be profoundly distressing for relatives and staff, and revelations about his isolation and possible hidden illness provoke guilt and regret. Although entirely different from Mrs A, the result is similar: a technologically mediated death marked by distress, uncertainty and grief.

Elsewhere, when serious illness conversations have not taken place, when goals of care remain unclear for patients who are frail or complex, or when advance care planning is absent, ICU risks becoming the default escalation rather than being recognised as a high-burden intervention with uncertain benefit [8]. Decisions regarding ICU admission must balance the possibility of survival against the significant physical, psychological and existential burdens experienced by patients. Although some participants interviewed by Donaldson et al. described ICU as a safe and reassuring environment, clinicians will also recognise that intensive care can expose patients to complications, prolonged suffering and unintended harms [9]. Equally, Donaldson et al. record what a good death in ICU might look like: privacy; expert symptom control; presence of family; and the opportunity for organ donation. This is a reminder that intensive care can host good deaths as well as bad ones.

Many participants in the study by Donaldson et al. would accept ICU treatment only if there were a meaningful chance of recovery, though views differed substantially. The median chance of survival at which participants would accept ICU treatment again was 30%, ranging from 1–90%, and one participant would not accept it regardless of the outcome. Survival alone was often insufficient as an outcome metric if bought at the cost of severe suffering or a poor death. This captures the central tension of intensive care: balancing life-prolonging treatment vs. a death that is peaceful, dignified and aligned with patient preferences. Admission decisions should therefore rest on individual values, realistic communication about prognosis and shared decision-making, not an assumption that survival always takes priority.

Much of end-of-life care in ICU is not based on direct patient care but communication with families. Done well, it can create a dignified and compassionate dying experience; done poorly, relatives may remain distressed long after the death. Conflict is not always evidence of poor communication, as disagreement may reflect grief, uncertainty or differing interpretations of what the patient would have wanted.

Clinicians nevertheless shape how relatives remember a death: families recall not only what happened but whether discussions were compassionate, honest and understandable. Helpful approaches include preparing before meetings; framing discussions around the values of the patient; acknowledging uncertainty; explaining what dying may look like; and maintaining continuity throughout the admission. Such conversations are demanding emotionally but are among the most important medical interventions delivered in ICU.

A key limitation of the study by Donaldson et al. is that only survivors were interviewed. Those who die in ICU cannot describe their experiences and proxy accounts from relatives or clinicians may misrepresent subjective suffering, as no one really knows about the experiences of others. However, survivor testimony does offer rare insight into how critical illness may feel from the perspective of the patient. Further work involving relatives, staff and observational approaches could deepen understanding of symptom burden and distress at the end of life, and identify gaps between clinical priorities and patient-centred care.

The most recent guidance from the College of Intensive Care Medicine, published in 2019, remains an excellent educational resource [10]. It articulates clearly the competing interests faced by clinicians, particularly when information regarding the wishes and beliefs of a patient is limited. However, even with guidance and experience, providing high-quality end-of-life care in ICU remains one of the most difficult aspects of consultant-level clinical practice. Uncertainty, emotional burden and ethical ambiguity cannot be removed entirely by protocols/frameworks or tested in postgraduate examinations. There are also important cultural and contextual complexities. The interface between paediatric and adult services can be challenging, and discussions within the faith space may become nuanced where preservation of life is emphasised despite limited chance of benefit [11]. These situations reinforce the importance of humility, compassion and individualised decision-making.

A further dimension, not always made explicit by Donaldson et al., is the role of hope. Hope is usually framed in intensive care as hope for survival, yet the experiences participants describe suggest it is neither singular nor static; it is dynamic and can be reframed as clinical trajectories evolve. When the likelihood of recovery diminishes, orienting care solely around survival may paradoxically generate hopelessness, as the gap widens between what is hoped for and what is possible [12]. Reframing hope away from survival and towards what matters to the patient and family: comfort; dignity; the presence of loved ones; rituals of faith or culture; or a peaceful death, may allow hope to persist even amid irreversible deterioration. In this sense, hope is not the opposite of accepting death but integral to it, and supporting this reframing aligns closely with the role of palliative care in holistic, goal-oriented care and decision-making at the end of life.

Defining and measuring a good death is difficult, because experiences and priorities vary substantially between individuals, families and cultures. Possible indicators of high-quality end-of-life care in ICU include effective symptom control; timely recognition of dying; compassionate communication; concordance between treatment and patient wishes; and support for cultural, psychological and spiritual needs. But such indicators should not incentivise premature limitation of organ-supportive therapies or oversimplified notions of appropriate care. A shorter stay or earlier withdrawal of treatment does not necessarily mean a better death, just as prolonged organ support does not imply inappropriate care. This matters because the dominant metric in intensive care is mortality (for example, through ICNARC [13]), which implicitly frames death as a failure of treatment rather than an expected outcome of serious illness. Use of a binary approach of survival as success and death as failure does not capture what matters to patients when survival is unlikely or brought with significant suffering. For those patients who do survive, the time may now have come to measure recovery after critical care in a manner similar to measuring postoperative functional impairment [14].

The participant accounts captured by Donaldson et al. illustrate the true complexity at play. This is that dying should be recognised as a possible and, at times appropriate, outcome of intensive care, with the quality of that care weighed alongside survival. Palliative care does not represent a withdrawal of hope, but an expansion of what patients and clinicians are able to hope for. It supports the reframing of goals in response to clinical reality and treats death not as failure but as a phase of care demanding the same expertise, attention and compassion as recovery.