key: cord-0928398-wlnhoez7 authors: Abeywickrema, Movin; Turfrey, Deborah title: Compassionate End-of-Life Care in the Intensive Care Unit Involves Early Establishment of Treatment Goals date: 2022-03-30 journal: J Patient Exp DOI: 10.1177/23743735221089452 sha: dc1e0c773aaccd5d61ed191fc1fc702c8779b74c doc_id: 928398 cord_uid: wlnhoez7 nan Communication can be a difficult process, involving multiple conversations to establish understanding and wishes on ongoing management. Receiving information on poor prognosis may be traumatic for next-of-kin to process. Over these conversations, next-of-kin commonly asks about the likelihood of recovery and the consequences of further procedures. Challenges arise where views of next-of-kin are at odds with the ICU team, for example requesting continuing invasive therapeutic strategies, or where turning off life support is in conflict with religious beliefs. A large-scale multicenter observational study in the United States showed high discordance, one-third of cases, in views on the appropriateness of treatment between patients/next-of-kin and staff (2) . Disagreements on the futility of life-sustaining treatment in particular is often the main issue, underlying 63% of conflict in one US study (3) . There is an understanding that a desired outcome of medical management in ICU may involve some level of discomfort or pain, but therein lies the issue of identifying where the acceptable threshold of suffering is intolerable based on the likelihood of clinical recovery. Chaplains may be brought in to provide religious support, consolidating potentially conflicting values. Research shows high appreciation by patients and relatives for supporting religious and spiritual needs (4) . Transitioning the model of care for a patient may be highly traumatic for next-of-kin to process and can often involve back-and-forth discussions. In these situations, discussions staggered over time may be useful to pace gathering information. Reapproaching discussions on values can give next-of-kin space to reflect, after any initial shock or grief. Next-of-kin may be allowed longer bedspace time, to provide emotional space and clarity on a patient's condition. Within these discussions, teams may specifically ask about plans for whether specific ICU therapies should be withheld or withdrawn. Particularly, potential tracheostomy insertion is a salient time for reapproaching discussions, given this is often a checkpoint that raises the question of medical futility and appropriateness of prolonging suffering; additional issues are limits on the use of vasopressor/ inotropes, ventilatory support, and cardiopulmonary resuscitation. These are similar questions ICU teams also ask from other medical specialties when a patient is being referred. Thus, from the moment of accepting admissions, ICU teams should start to establish wishes on limits, "ceilings," of care. Notably, this is hindered where next-of-kin details are not universally routinely recorded. US physician interviews show that the timing of these discussions is largely physiciandetermined, based on "prognostication" rather than patientfocused factors (5) . When these discussions are started early, there comes an opportunity to process a patient's condition. Multicentre Canadian qualitative patient and next-of-kin interviews show early inclusion of end-of-life discussions were considered highly important and that inclusion of a greater number of recommended elements in conversations was highly correlated with patient satisfaction (6) . Formalizing referral proformas for ICU admissions can ensure this is not omitted when patients are initially being assessed. Documented plans of agreed appropriate ceilings of care, also known as "Advanced Serious Illness Planning" can be highlighted through proformas at the front of patient records, ensuring continuity of care even when patients are transferred between wards and ICU. Healthcare staff interviews have shown that the timeliness of end-of-life care decisions is clinician-dependent, affected by variable experience in communication training and in evaluating critical care prognosis (7) . Thus, ICUs must support trainees by incorporating sessions into training programs-in particular, using role-play to demonstrate communication models in sensitively approaching shared decision-making. Scripts that can be used in guidelines can follow the format of eleven literature-determined guideline-recommended goals of end-of-life discussions (6) . It is necessary that these discussions have a clear structure-establishing what is known, signposting and laying out medical details, with space for questions. Additionally, early mentorship is key for both ICU and non-ICU juniors through involvement in first-hand discussions, usually carried out by seniors. The burden of these emotional conversations can take a toll-and ICU teams should establish clear networks where staff can support each other, and seek counseling tailored to healthcare professionals. Over the COVID-19 pandemic, ICUs have seen huge admissions pressures, alongside managing infection control, high staff turnover, and burnout. During the first wave, 12% of COVID-19 patients in Italy required ICU care, with frequent coexistent comorbidities and frailty (8) . Additionally, ventilator demand has been limited by capacity, on average 2.3 beds per 100,000 in lower-income countries (8) . In some cases, resultant visiting restrictions have impeded staff-to-kin communication and prevented patients seeing loved ones physically, resulting in significant distress and fears of dying alone. Here, virtual telecommunication via ICU phones and tablets has been a means of minimizing isolation, for example through the UK Life Lines project. Elsewhere, for example, through the Australian Critical Care guidelines, to preserve moments with loved ones, next-of-kin have been allowed to spend time with end-of-life patients; this has sometimes been via individual patient rooms, limited by PPE measures and numbers permitted (9) . Even in trying circumstances, this highlights the importance of placing and maintaining the emphasis of humanity within patient-centered ICU care, by preserving contact with next-of-kin by any means possible. Research has shown satisfaction of next-of-kin with end-of-life care in the ICU setting is indeed higher than on medical wards, demonstrating that decisions on the medicalization of care in the intensive care setting are largely well-considered in the context of patients' overall well-being (10) . ICU teams must continuously strive to ensure these shared decision-making discussions occur early, allowing compassionate care to be placed at the heart of ICU management. Early palliative care consultation in the medical ICU: a cluster randomized crossover trial Prevalence of disagreement about appropriateness of treatment between ICU patients/surrogates and clinicians Conflict associated with decisions to limit life-sustaining treatment in intensive care units The association of spiritual care providers' activities with family members' satisfaction with care after a death in the ICU* Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end-of-life in an intensive care unit What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families Physician-related barriers to communication and patient-and family-centred decisionmaking towards the end of life in intensive care: a systematic review Intensive care management of coronavirus disease 2019 (COVID-19): challenges and recommendations When 'open visitation in intensive care units' meets the COVID-19 pandemic The quality of end-of-life care among ICU versus ward decedents This article was deemed exempt from ethics committee evaluation. The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The author(s) received no financial support for the research, authorship, and/or publication of this article. Movin Abeywickrema https://orcid.org/0000-0002-1707-9865