BACKGROUND: During the terminal withdrawal of life-sustaining measures for intensive care patients, the removal of respiratory support remains an ambiguous practice. Globally, perceptions and experiences of best practice vary due to the limited evidence in this area.
AIM: To identify, appraise and synthesise the latest evidence around terminal withdrawal of mechanical ventilation in adult intensive care units specific to perceptions, experiences and practices.
DESIGN: Mixed methods systematic review and narrative synthesis. A review protocol was registered on PROSPERO (CRD42018086495).
DATA SOURCES: Four electronic databases were systematically searched (Medline, Embase, CENTRAL and CINAHL). Obtained articles published between January 2008 and January 2020 were screened for eligibility. All included papers were appraised using relevant appraisal tools.
RESULTS: Twenty-five papers were included in the review. Findings from the included papers were synthesised into four themes: 'clinicians' perceptions and practices'; 'time to death and predictors'; 'analgesia and sedation practices'; 'physiological and psychological impact'.
CONCLUSIONS: Perceptions, experiences and practices of terminal withdrawal of mechanical ventilation vary significantly across the globe. Current knowledge highlights that the time to death after withdrawal of mechanical ventilation is very short. Predictors for shorter duration could be considered by clinicians and guide the choice of pharmacological interventions to address distressing symptoms that patients may experience. Clinicians ought to prepare patients, families and relatives for the withdrawal process and the expected progression and provide them with immediate and long-term support following withdrawal. Further research is needed to improve current evidence and better inform practice guidelines.
Purpose: As many as 20% of oncology patients receive chemotherapy in the last 14 days of their lives. This study characterized conversations between patients and cancer clinicians on chemotherapy cessation in the setting of advanced cancer.
Methods: This 3-site study captured real-time, audio-recorded interviews between oncology clinicians and patients with cancer during actual clinic visits. Audio-recordings were reviewed for discussion of chemotherapy cessation and were analyzed qualitatively.
Results: Among 525 recordings, 14 focused on stopping chemotherapy; 14 patients participated with 11 different clinicians. Two types of nonmutually exclusive conversation elements emerged: direct and specific elements that described an absence of effective therapeutic options and indirect elements. An example of a direct element is as follows: “…You know this is…always really tough…But I—I think that you may need more help…I think we’re close to stopping chemotherapy…And hospice is really helpful to have in place…” In contrast, the second conversation element was more convoluted: “…transplant is not an option and surgery is not an option…The options…are taking a pill…It doesn’t shrink the tumor…It may help you live a little longer. But I’m worried if [you] had the pill, it’s still a therapy and it still has side effects. I [am] worried if I give it to you now, that you’re so weak, it will make you worse.” No relationship seemed apparent between conversation elements and chemotherapy cessation.
Conclusions: Conversations on chemotherapy cessation are complex; multiple factors appear to drive the decision to stop.
Objective: Mechanical ventilation, a measure of life-sustaining treatment (LST), may not be helpful and can be devastating for patients with terminal illness. We explored the effects of demographic characteristics, attitude, subjective norms, and perceived behavioral control on the behavioral intentions of primary caregivers to withdraw LST of long-term ventilator-dependent patients.
Methods: Primary caregivers of ventilator-dependent patients in the respiratory care units of six hospitals participated in the study. A cross-sectional design including the domains of attitude, subjective norms, perceived behavioral control, and behavioral intention was adopted.
Results: Valid data for 99 participants were analyzed using logistic regression. Religious belief, a spousal relationship with the patient, item 5 in subjective norms, and item 5 in perceived behavioral control positively influenced the intention to withdraw patient LST.
Conclusions: Religious beliefs, a spousal relationship, perceived behavioral control (confidence in relieving patient suffering), and the opportunity of current favorable subjective norms are major determinants of the intention to withdraw patients’ LST.
Practice Implications: Shared decision-making with the kin and primary caregivers of long-term ventilator-dependent patients at the end of life is crucial.
Background: Data are scarce on the withdrawal of life-sustaining therapies and limitation of care orders (LCOs) during physician-staffed Helicopter Emergency Medical Service (HEMS) missions. We investigated LCOs and the quality of information available when physicians made treatment decisions in prehospital care.
Methods: A prospective, nationwide, multicentre study including all Finnish physician-staffed HEMS bases during a six-month study period. All HEMS missions where a patient had pre-existing LCOs and/or a new LCO were included.
Results: There were 335 missions with LCOs, which represented 5.7% of all HEMS missions (n=5,895). There were 181 missions with pre-existing LCOs, and a total of 170 new LCOs were issued. Usually, the pre-existing LCO was a do not attempt cardiopulmonary resuscitation order only (n=133, 74%). The most frequent new LCO was ‘termination of cardiopulmonary resuscitation’ only (n=61, 36%), while ‘no intensive care’ combined with some other LCO was almost as common (n=54, 32%). When issuing a new LCO for patients who did not have any preceding LCOs (n=153), in every other (49%) case the physicians thought that the patient should have already had an LCO. When the physician made treatment decisions, patients’ background information from on-scene paramedics was available in 260 (78%) of the LCO missions, while patients’ medical records were available in 67 (20%) of the missions.
Conclusion: Making LCOs or treating patients with pre-existing LCOs is an integral part of HEMS physicians’ work, with every twentieth mission involving LCO patients. The new LCOs mostly concerned withholding or withdrawal of cardiopulmonary resuscitation and intensive care.
There is a concern that as a result of COVID-19 there will be a shortage of ventilators for patients requiring respiratory support. This concern has resulted in significant debate about whether it is appropriate to withdraw ventilation from one patient in order to provide it to another patient who may benefit more. The current advice available to doctors appears to be inconsistent, with some suggesting withdrawal of treatment is more serious than withholding, while others suggest that this distinction should not be made. We argue that there is no ethically relevant difference between withdrawing and withholding treatment and that suggesting otherwise may have problematic consequences. If doctors are discouraged from withdrawing treatment, concern about a future shortage may make them reluctant to provide ventilation to patients who are unlikely to have a successful outcome. This may result in underutilisation of available resources. A national policy is urgently required to provide doctors with guidance about how patients should be prioritised to ensure the maximum benefit is derived from limited resources.
BACKGROUND: Previous research on chemotherapy discontinuation has mainly focused on predictive factors and outcomes. Few data are available on the reasons for chemotherapy discontinuation. The main objective was to identify the reasons for chemotherapy discontinuation in patients with gastrointestinal cancer. The secondary objectives were to describe the announcement of chemotherapy discontinuation and the time between chemotherapy discontinuation and death.
METHODS: This prospective multicenter French cohort included patients with advanced gastrointestinal cancer, for whom chemotherapy was discontinued between May 2016 and January 2018.
RESULTS: One hundred and fourteen patients were analyzed. The first cause of chemotherapy discontinuation was the impairment of general condition (asthenia, cachexia). Complications such as sepsis, jaundice or occlusion, were the second most frequent cause. Progression was observed at chemotherapy discontinuation in two-thirds of cases. The announcement of the chemotherapy discontinuation was made formally in 74% of cases, with a follow-up by a palliative care team initiated in 50% of cases. Sixty-nine percent of the patients received chemotherapy during the last three months of life and 26% during the last month. The median time between chemotherapy discontinuation and death was 65 days (IQR: 36.5-109): 44% of patients died at the hospital, 39% in a palliative care unit and 16% at home.
CONCLUSION: Impairment of general condition was the major reason for chemotherapy discontinuation in patients with gastrointestinal cancers. Complications such as jaundice, sepsis or occlusion, were important reasons for discontinuation and could explain our shorter time between chemotherapy discontinuation and death, compared to other oncology sub-specialties.
BACKGROUND: Euthanasia can be thought of as being either active or passive; but the precise definition of "passive euthanasia" is not always clear. Though all passive euthanasia involves the withholding of life-sustaining treatment, there would appear to be some disagreement about whether all such withholding should be seen as passive euthanasia.
MAIN TEXT: At the core of the disagreement is the question of the importance of an intention to bring about death: must one intend to bring about the death of the patient in order for withholding treatment to count as passive euthanasia, as some sources would indicate, or does withholding in which death is merely foreseen belong to that category? We may expect that this unclarity would be important in medical practice, in law, and in policy. The idea that withholding life-sustaining treatment is passive euthanasia is traced to James Rachels's arguments, which lend themselves to the claim that passive euthanasia does not require intention to end life. Yet the argument here is that Rachels's arguments are flawed, and we have good reasons to think that intention is important in understanding the moral nature of actions. As such, we should reject any understanding of passive euthanasia that does not pay attention to intent.
SHORT CONCLUSION: James Rachels's work on active and passive euthanasia has been immensely influential; but this is an influence that we ought to resist.
Introduction: The End of Life Care in Advanced Kidney Disease Framework suggests that renal units should create a renal supportive care register (RSCR) to promote consistent communication with patients and to encourage advance care planning. The aim of the RSCR at Birmingham Heartlands Hospital is to identify patients who are requiring dialysis with a prognosis of less than 12 months. This work aims to explore whether patients were identified appropriately on the RSCR, and if conversations around withdrawal of dialysis and end of life took place.
Methods: We reviewed the inpatient and outpatient consultations of patients who died while listed on the RSCR between 1 January 2016 and 31 December 2018. We recorded the dates when patients were added to the RSCR and when they died. We reviewed conversations around dialysis withdrawal and events at the end of life.
Results and discussion: Data from Proton, the renal team’s coding system, showed that there were 80 deaths of patients listed on the RSCR: 59% were male, 41% were female. The median age at death was 77.5 years (interquartile range (IQR) 12.25 years). Thirty-eight per cent of these patients had an alert on Concerto, the hospital’s main electronic system, informing users that the patient was on the RSCR.
Eighty-eight per cent of patients were listed on the RSCR within 12 months of death; 69% of these were listed on the day they died. For the remaining patients who were listed on the register, Fig 1 illustrates that the median time to death from being placed on the register was 1.75 months (IQR 7.54 months).
Thirty-eight per cent of patients were offered a conversation on withdrawal of dialysis; 70% of these then opted to withdraw. Cited reasons for continuing dialysis after these conversations were families’ refusal to accept palliation and denial. Of those who did not have dialysis formally withdrawn prior to death, there were reports of dialysis being withheld due to low blood pressure and patients being too unwell to come in from home for dialysis.
Eighty-seven per cent had valid ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) forms. Two patients who did not have DNACPR forms received CPR (without return of spontaneous circulation) on the day of their death in hospital. Preferred place of death (PPD) was established in 20% of patients (Fig 2). While the majority of patients asked chose their PPD as home, 65% of patients on the RSCR died in hospital.
We recommend that all patients on the RSCR should have alerts placed on Concerto. This would ensure that the wider hospital, who may not know the patient as well as the renal team, are prompted to think about advance care planning. The literature reinforces that alerts can improve healthcare professionals’ engagement with conversations around resuscitation.2
Conclusion: Our data suggests that the deterioration of these patients may have been unrecognised. While some deaths are likely to be unexpected, we are missing opportunities to engage patients with end-stage renal disease in advance care planning.
AIM: To synthesise qualitative studies of patients' families' experiences and perceptions of end-of-life care in the intensive care unit when life-sustaining treatments are withdrawn.
DESIGN: Qualitative meta-synthesis
DATA SOURCES: Comprehensive search of 18 electronic databases for qualitative studies published between January 2005 - February 2019.
REVIEW METHOD: Meta-aggregation.
RESULTS: Thirteen studies met the inclusion criteria. A conceptual 'Model of Preparedness' was developed reflecting the elements of end-of-life care most valued by families: 'End-of-life communication'; 'Valued attributes of patient care'; 'Preparing the family'; 'Supporting the family' and; 'Bereavement care'.
CONCLUSION: A family-centred approach to end-of-life care that acknowledges the values and preferences of families in the intensive care unit is important. These families have unmet needs related to communication, support and bereavement care. Effective communication and support are central to preparedness and if these care components are in place, families can be better equipped to manage the death, their sadness, loss and grief. The findings suggest that health professionals may benefit from specialist end-of-life care education, to support families and guide the establishment of preparedness.
IMPACT: Understanding the role and characteristics of preparedness during end-of-life care will inform future practice in the intensive care unit and may improve family member satisfaction with care and recovery from loss. Nurses are optimally positioned to address the perceived shortfalls in end-of-life care. These findings have implications for health education, policies and standards for end-of-life care in the intensive care unit.
The COVID-19 pandemic and its sequelae have created scenarios of scarce medical resources, leading to the prospect that healthcare systems have faced or will face difficult decisions about triage, allocation and reallocation. These decisions should be guided by ethical principles and values, should not be made before crisis standards have been declared by authorities, and, in most cases, will not be made by bedside clinicians. Do not attempt resuscitation (DNAR) and withholding and withdrawing decisions should be made according to standard determination of medical appropriateness and futility, but there are unique considerations during a pandemic. Transparent and clear communication is crucial, coupled with dedication to provide the best possible care to patients, including palliative care. As medical knowledge about COVID-19 grows, more will be known about prognostic factors that can guide these difficult decisions.
Symptom management and end-of-life care are core skills for all physicians, although in ordinary times many anesthesiologists have fewer occasions to use these skills. The current coronavirus disease (COVID-19) pandemic has caused significant mortality over a short time and has necessitated an increase in provision of both critical care and palliative care. For anesthesiologists deployed to units caring for patients with COVID-19, this narrative review provides guidance on conducting goals of care discussions, withdrawing life-sustaining measures, and managing distressing symptoms.
When it is ethically justifiable to stop medical treatment? For many Muslim patients, families, and clinicians this ethical question remains a challenging one as Islamic ethico-legal guidance on such matters remains scattered and difficult to interpret.
In light of this gap, we conducted a systematic literature review to aggregate rulings from Islamic jurists and juridical councils on whether, and when, it is permitted to withdraw and/or withhold life-sustaining care. A total of 16 fatwas were found, 8 of which were single-author rulings, and 8 represented the collective view of a juridical council. The fatwas are similar in that nearly all judge that Islamic law, provided certain conditions are met, permits abstaining from life-sustaining treatment. Notably, the justifying conditions appear to rely on physician assessment of the clinical prognosis. The fatwas differ when it comes to what conditions justify withdrawing or withholding life- sustaining care. Our analyses suggest that while notions of futility greatly impact the bioethical discourse regarding with holding and/or withdrawal of treatment, the conceptualization of futility lacks nuance. Therefore, clinicians, Islamic jurists, and bioethicists need to come together in order to unify a conception of medical futility and relate it to the ethics of withholding and/or withdrawal of treatment.
In the last decades, new technologies have improved the survival of patients affected by chronic illnesses. Among them, left ventricular assist device (LVAD) has represented a viable solution for patients with advanced heart failure (HF). Even though the LVAD prolongs life expectancy, patients’ vulnerability generally increases during follow up and patients’ request for the device withdrawal might occur. Such a request raises some ethical concerns in that it directly hastens the patient’s death. Hence, in order to assess the ethical acceptability of LVAD withdrawal, we analyse and examine an ethical argument, widely adopted in the literature, that we call the “descriptive approach”, which consists in giving a definition of life-sustaining treatment to evaluate the ethical acceptability of treatment withdrawal. Focusing attention on LVAD, we show criticisms of this perspective. Finally, we assess every patient’s request of LVAD withdrawal through a prescriptive approach, which finds its roots in the criterion of proportionality.
This Viewpoint discusses the legal risks to health care workers and hospital systems from withdrawing or withholding ventilation from COVID-19 patients and cites a Maryland statute that offers legal immunity to clinicians making good faith decisions under emergency conditions as an example for other...
The Covid-19 pandemic has led to severe shortages of many essential goods and services, from hand sanitizers and N-95 masks to ICU beds and ventilators. Although rationing is not unprecedented, never before has the American public been faced with the prospect of having to ration medical goods and services on this scale.
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De façon heureusement moins médiatique que pour l’affaire Lambert, des décisions médicales d’arrêt de traitement au titre de l’obstination déraisonnable continuent d’être soumises par les familles au contrôle du juge. Ainsi, le 18 février 2020, le TA de Cergy a eu à se prononcer en référé sur une telle décision prise à l’égard d’un patient âgé de 74 ans, pour lequel il a éprouvé le besoin de préciser que « la seule circonstance qu’un patient, âgé, soit dans un état de coma « profond » sans espoir d’amélioration ne saurait caractériser, par elle-même, une situation dans laquelle la poursuite du traitement apparaîtrait injustifiée au nom du refus de l’obstination déraisonnable ». Si l’affirmation se veut rassurante, la motivation de l’arrêt soulève toutefois quelques interrogations sur l’impact de l’âge avancé du patient sur la décision d’arrêt des traitements ainsi que sur les véritables auteurs d’une telle décision.
Objectives: To estimate the probability of a substitute decision maker choosing to withdraw life-sustaining therapy after hearing an affirmative patient response to the phrase "Do you want everything done?"
Design: Discrete choice experiment.
Setting: Single community hospital in Ontario.
Subjects: Nonrandom sampling of healthcare providers and the public.
Intervention: Online survey.
Measurements and Main Results: Of the 1,621 subjects who entered the survey, 692 consented and 432 completed the survey. Females comprised 73% of subjects. Over 95% of subjects were under 65 years old, and 50% had some intensive care-related exposure. Healthcare providers comprised 29% of the subjects. The relative importance of attributes for determining the probability of withdraw life-sustaining therapy by substitute decision makers was as follows: stated patient preferences equals to 23.4%; patient age equals to 20.6%; physical function prognosis equals to 15.2%; length of ICU stay equals to 14.4%; survival prognosis equals to 13.8%; and prognosis for communication equals to 12.6%. Using attribute level utilities, the probability of an substitute decision maker choosing to withdraw life-sustaining therapy after hearing a patient answer in the affirmative "Do you want everything done?" compared with "I would not want to live if I could not take care of myself" was 18.8% (95% CI, 17.2-20.4%) versus 59.8% (95% CI, 57.6-62.0%) after controlling for all the other five attribute levels in the scenario: age greater than 80 years; survival prognosis less than 1%; length of ICU stay greater than 6 months; communication equals to unresponsive; and physical equals to bed bound.
Conclusions: Using a discrete choice experiment survey, we estimated the impact of a commonly employed and poorly understood phrase physicians may use when discussing advance care plans with patients and their substitute decision makers on the subsequent withdraw life-sustaining therapies. This phrase is predicted to dramatically reduce the likelihood of withdraw life-sustaining therapy even in medically nonbeneficial scenarios and potentially contribute to low-value end-of-life care and outcomes. The immediate cessation of this term should be reinforced in medical training for all healthcare providers who participate in advance care planning.
OBJECTIVE: The aim of this study was to explore the status of aggressive end-of-life care and symptom relief treatments in terminally ill patients who had discussed the withdrawal of mechanical ventilation.
METHODS: This research is a retrospective observational study based on a chart review. Terminal patients aged = 20 years, who were intubated with mechanical ventilation support, who underwent hospice-shared care, and who personally, or whose close relatives, had discussed the withdrawal of mechanical ventilation with hospice-shared care team members in a tertiary hospital in Taiwan during 2012 to 2015 were included. Demographics, medical conditions, and aggressive end-of-life care, including hospitalization, use of vasopressors, artificial nutrition, tube feeding, antibiotics, and symptom relief treatments including the use of opioids, steroids, and sedatives, were identified. The modes of care and treatments of patients by the status of withdrawal of mechanical ventilation were compared.
RESULTS: A total of 141 patients had discussed the withdrawal of mechanical ventilation, and 111 (78.7%) had been withdrawn. Aggressive end-of-life care was noted in all patients regardless of mechanical ventilation status. There were no significant differences in the number and pattern of aggressive end-of-life care measures between patients who had or had not been withdrawn. There were significantly higher rates of symptom relief treatments used in patients who had been withdrawn.
CONCLUSIONS: Aggressive end-of-life care is common for patients who have discussed the withdrawal of mechanical ventilation. There are significantly higher rates of symptom relief medications administered in patients who have been withdrawn from mechanical ventilation.
Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has occurred since then and is described herein.
MATERIAL AND METHODS: A survey was conducted in the Île-de-France region, from 1 January to 31 January 2016. Professionals from 15 neonatal intensive care units (NICUs) were invited to complete a questionnaire.
RESULTS: A total of 702 questionnaires were collected and 670 responses were analyzed. Knowledge of the law differed according to professional status, with 71% of MDs (medical staff, MS), compared with 28% of nonmedical staff (NMS) declaring that they had good knowledge of the law. Most MDs and NMS believed that withholding or withdrawing life-sustaining treatments (WWLST) could be decided and implemented after a delay. Half of them thought that WWLST would always result in death. Although required by law, a consulting MD attended the collegial meeting required before deciding on WWLST in only half of the cases. Parents were almost always informed of the decision thereafter by the physician in charge of their infant. The most frequent disagreement with parents was observed when WWLST was the option selected. In this case, most professionals suggested postponing WWLST, continuing intensive care and dialogue with parents, aiming at a final shared decision. Major differences were observed between NICUs with regard to the withdrawal of artificial nutrition and hydration. Finally, 14% of MDs declared that infant active terminations of life still occurred in their NICU. Major differences concern WWLST and active termination of life, whose meaning has been partly modified since 2001.
CONCLUSION: Several major changes were observed in this survey: (1) treatment withdrawal decisions are made today in agreement with the law; (2) parents' information and involvement in the decision process have profoundly changed; (3) active termination of life (euthanasia) very rarely occurs; only at the end of a process in accordance with ethical principles and within the law is this decision made.
In a recent paper, Charles Foster argued that the epistemic uncertainties surrounding prolonged disorders of consciousness (PDOC) make it impossible to prove that the withdrawal of life-sustaining treatment can be in a patient's best interests and, therefore, the presumption in favour of the maintenance of life cannot be rebutted. In the present response, I argue that, from a legal perspective, Foster has reached the wrong conclusion because he is asking the wrong question. According to the reasoning in two leading cases-Bland and James-the principle of respect for autonomy creates a persuasive presumption against treatment without consent. Therefore, it is the continuation of treatment that requires justification, rather than its withdrawal. This presumption also works as the tiebreaker determining that treatment should stop if there is no persuasive evidence that its continuation is in the best interests of the patient. The presumption in favour of the maintenance of life, on the other hand, should be understood as an evidential presumption on a factual issue that is assumed to be true if unchallenged. However, the uncertainties regarding PDOC actually give reasons for displacing this evidential presumption. Consequently, decision-makers will have to weigh up the pros and cons of treatment having the presumption against treatment without consent as the tiebreaker if the evidence is inconclusive. In conclusion, when the right question is asked, Foster's argument can be turned on its head and uncertainties surrounding PDOC weigh in to justify the interruption of treatment in the absence of compelling contrary evidence.