End-of-life care of critically ill adult patients with advanced or incurable cancers is imbued with major ethical challenges. Oncologists, hospitalists, and intensivists can inadvertently subjugate themselves to the perceived powers of autonomous patients. Therapeutic illusion and poor insight by surrogates in physicians' ability to offer accurate prognosis, missed opportunities and miscommunication by clinicians, and lack of systematic or protocolized approach represent important barriers to high-quality palliative care. Enhanced collaboration, models that allow clinicians and surrogates to share the burdens of decision, and institutional support for early integration of palliative care can foster an ethical climate.
When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.
The purpose of this scoping review is to present an overview of terms found in publications associated with end-of-life care management that can impact decision making by patients, health care providers, and researchers. Connotative terminology and syntax can influence the decision-making approach and process. We examined 49 publications for positive, negative, and neutral connotations. We consistently found negative terminology in the publications. To advance the development of nursing knowledge regarding end-of-life care, researchers should be aware of their biases of terminology and syntax use. We propose modifications to language used in end-of-life care planning models and literature can improve care congruency.
Amid the ongoing ethical and societal debate, there has been a growing global movement toward the legalization of medical assistance in dying (MAID). In patients with terminal cancer and comorbid depression, the contributing role of depression in the decision-making processs to pursue MAID can be challenging to determine.
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Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan.
Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis.
Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients’ frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress.
Conclusion: Patient dyads’ preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people’s medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia–Pacific region.
Strategies to increase appropriateness of EoL care, such as shared decision making (SDM), and advance care planning (ACP) are internationally embraced, especially since the COVID-19 pandemic. However, individuals preferences regarding EoL care may differ internationally. Current literature lacks insight in how preferences in EoL care differ between countries and continents. This study's aim is to compare Dutch and Japanese general publics attitudes and preferences toward EoL care, and EoL decisions.
Methods: a cross-sectional survey design was chosen. The survey was held among samples of the Dutch and Japanese general public, using a Nationwide social research panel of 220.000 registrants in the Netherlands and 1.200.000 in Japan. A quota sampling was done (age, gender, and living area). N = 1.040 in each country.
More Japanese than Dutch citizens tend to avoid thinking in advance about future situations of dependence (26.0% vs 9.4%; P = .000); say they would feel themselves a burden for relatives if they would become dependent in their last phase of life (79.3% vs 47.8%; P = .000); and choose the hospital as their preferred place of death (19.4% vs 3.6% P = .000). More Dutch than Japanese people say they would be happy with a proactive approach of their doctor regarding EoL issues (78.0% vs 65.1% JPN; P = .000).
Preferences in EoL care substantially differ between the Netherlands and Japan. These differences should be taken into account a) when interpreting geographical variation in EoL care, and b) if strategies such as SDM or ACP – are considered. Such strategies will fail if an international “one size fits all” approach would be followed.
CONTEXT: Optimal surgical care for older adults with life-threatening conditions, with high risk of poor perioperative outcomes and morality in the months after surgery, should incorporate an understanding of the patient's treatment goals and preferences. However, little research has explored the patient perspective of decision making and advanced care planning during an emergency surgery episode.
OBJECTIVE: We sought to better understand older patients' lived experience making decisions to undergo emergency general surgery (EGS) and perceptions of perioperative advance care planning.
METHODS: Adults >65 who underwent one of seven common EGS procedures with a length of stay >5 days at 3 Boston-area hospitals were included. Semi-structured phone interviews were conducted 3 months post-discharge. Transcripts were reviewed and coded independently by surgeons and palliative care physicians to identify themes.
RESULTS: Thirty-one patients were interviewed. Patients viewed the decision for surgery as a choice of life over death and valued prolonging life. They felt there was "no choice" but to proceed with surgery, but reported that participation in decision making was limited due to severe symptoms, time constraints and confused thinking. Despite recently surviving a life-threatening illness, patients had not reconsidered their wishes for the future and preferred to avoid future advance care planning.
CONCLUSION: Older patients who survived a life-threatening illness and emergency general surgery report receiving goal-concordant care in the moment that relieved symptoms and prolonged life but had not considered future care. Interventions to facilitate postoperative advance care planning should be targeted to this vulnerable group of older adults.
Introduction : La loi Léonetti a donné un cadre réglementaire à la fin de vie. Si la formation des futurs médecins s’est adaptée à cette évolution, l’impact émotionnel de la fin de vie sur les futurs médecins n’a pas été étudié et son évaluation était le but de la présente étude.
Méthodes : Une enquête nationale anonyme a été effectuée auprès des étudiants en médecine lors du choix de la spécialité juste avant le début de l’internat. Le questionnaire explorait le ressenti lors d’une décision de fin de vie, les modalités d’apprentissage et les connaissances théoriques. Les résultats sont présentés en pourcentage (avec intervalle de confiance à 95 %) ou en moyenne (avec écart type).
Résultats : Sur les 3600 étudiants, 3187 questionnaires (88 %) ont été collectés et analysés. Au cours de leur externat, 85 % [83–86] des étudiants ont été exposés à une décision de fin de vie. Soixante-sept pour cent [63–71] ont exprimé un sentiment de découragement transitoire, et même un sentiment de déprime pour 62 % [59–67]. Ces situations ont entraîné une modification du projet professionnel pour environ 10 % d’entre eux. Les étudiants ont déclaré partager les difficultés rencontrées principalement avec un médecin senior et une absence de formation adéquate pour apprendre à gérer ces situations.
Discussion : Les décisions de fin de vie sont fréquemment rencontrées pendant les études de médecine. L’impact psychologique est significatif dans plus de la moitié des cas, entraînant même des changements de projet professionnel. Pour apprendre à gérer ces situations, les étudiants privilégieraient des échanges d’expériences en petits groupes.
INTRODUCTION: We hypothesized that trauma providers are reticent to consider palliative measures in acute trauma care.
METHODS: An electronic survey based on four patient scenarios with identical vital signs and serious blunt injuries, but differing ages and frailty scores was sent to WTA and EAST members.
RESULTS: 509 (24%) providers completed the survey. Providers supported early transition to comfort care in 85% old-frail, 53% old-fit, 77% young-frail, and 30% young-fit patients. Providers were more likely to transition frail vs. fit patients with (OR = 4.8 [3.8-6.3], p < 0.001) or without (OR = 16.7 [12.5-25.0], p < 0.001) an advanced directive (AD) and more likely to transition old vs. young patients with (OR = 2.0 [1.6-2.6], p < 0.001) or without (OR = 4.2 [2.8-5.0], p < 0.001) an AD.
CONCLUSIONS: In specific clinical situations, there was wide acceptance among trauma providers for the early institution of palliative measures. Provider decision-making was primarily based on patient frailty and age. ADs were helpful for fit or young patients. Provider demographics did not impact decision-making.
Purpose: End-of-life (EOL) decision-making is stressful. We conducted a quality improvement initiative to EOL decision-making and reduce stress for clinicians and patients’ relatives.
Methods: A before–after study running from 2010–2014 at four interdisciplinary intensive care units (ICU) in a German university hospital was performed. Between periods, a multifaceted intervention was implemented to improve timeliness, clinician involvement, and organisational support. Consecutive patients with severe sepsis and therapy limitations were included. Relatives were interviewed by telephone after 90 days to assess their psychological symptoms. Clinician burnout was assessed by staff surveys in each period.
Results: Participation in the pre- and postintervention period was 84/145 and 90/159 among relatives, and 174/284 and 122/297 among ICU clinicians. Staff judged intervention elements as mostly helpful, but implementation of intervention elements was heterogeneous. From pre- to postintervention, relatives’ risk of posttraumatic stress, depression and anxiety did not change (all p = 0.464). Clinicians’ risk of burnout increased (29% vs. 41%, p = 0.05). Relatives were highly satisfied in both periods (median of 9 vs. 9.2 on a 1–10 scale each). Attendings involved residents and nurses more often (both p = 0.018). Nurses more often had sufficient information to talk with relatives (41% vs. 62%, p = 0.002). Time to first EOL decision as well as barriers and facilitators of EOL decision-making did not change.
Conclusions: The intervention may have increased involvement in EOL decision-making, but was accompanied by an increased risk of clinician burnout maybe due to lack of improving communication skills and organisational support. More research is needed to understand which interventions can decrease clinician burnout.
BACKGROUND: Long-term survival and functional outcomes should influence admission decisions to intensive care, especially for patients with advanced disease.
AIM: To determine whether physicians' predictions of long-term prognosis influenced admission decisions for patients with and without advanced disease.
DESIGN: A prospective study was conducted. Physicians estimated patient survival with intensive care and with care on the ward, and the probability of 4 long-term outcomes: leaving hospital alive, survival at 6 months, recovery of functional status, and recovery of cognitive status. Patient mortality at 28 days was recorded. We built multivariate logistic regression models using admission to the intensive care unit (ICU) as the dependent variable.
SETTING/PARTICIPANTS: ICU consultations for medical inpatients at a Swiss tertiary care hospital were included.
RESULTS: Of 201 evaluated patients, 105 (52.2%) had an advanced disease and 140 (69.7%) were admitted to the ICU. The probability of admission was strongly associated with the expected short-term survival benefit for patients with or without advanced disease. In contrast, the predicted likelihood that the patient would leave the hospital alive, would be alive 6 months later, would recover functional status, and would recover initial cognitive capacity was not associated with the decision to admit a patient to the ICU. Even for patients with advanced disease, none of these estimated outcomes influenced the admission decision.
CONCLUSIONS: ICU admissions of patients with advanced disease were determined by short-term survival benefit, and not by long-term prognosis. Advance care planning and developing decision-aid tools for triage could help limit potentially inappropriate admissions to intensive care.
End-of-life (EOL) decision making in the intensive care unit (ICU) is challenging for both families and clinicians. This decision-making process is ideally framed around a shared understanding of a patient’s values and goals, all taken in the context of their critical illness and prognosis. However, clinicians commonly face uncertainty regarding prognosis and may have difficulty offering families an accurate assessment of the likely outcomes of treatment decisions. Adding to the complexity of these scenarios, clinicians, patients and families are each susceptible to unconscious but influential cognitive biases when making decisions under stress. Given these challenges, and a rapidly growing interest in data science to inform care in the ICU, investigators have explored the use of prediction models (eg, machine learning or ML algorithms) to assist with prognostication. Prediction models describe an outcome distribution among individuals with a particular set of characteristics, such as risk of acute kidney injury among individuals with particular laboratory values and clinical characteristics in a population. However, they do not compare how that outcome distribution would change were different treatment decisions made in that population—this requires causal effect estimation, rather than prediction modelling. Herein, we explain why prediction modelling alone is not sufficient to inform many ICU treatment decisions, including EOL decision making, and describe why causal effect estimation is necessary.
BACKGROUND: Family communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists' and nurses' perceptions of family involvement in decision making about forgoing cancer-specific treatment in patients with advanced cancer.
MATERIALS AND METHODS: Qualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life.
RESULTS: We could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients' autonomy: (a) a patient-focused approach in which a patient's independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients' family in decision making and strived for building consensus and resolving conflicts.
CONCLUSION: The main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient's family in understanding of a patient's incurable condition and to identify a patient's preference for therapy.
IMPLICATIONS FOR PRACTICE: This study focused on oncologists' and oncology nurses' perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients' emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.
Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.
Objective: Explore parents’ point of view about forgoing life sustaining treatment (LST) in terminal critically ill children and factors affecting their decisions.
Method: This was a qualitative study using in-depth interviews with parents whose child died between 6–12 months old in pediatric intensive care unit (PICU) of a university-affiliated teaching hospital. Interviews were audiotaped and transcribed. Data were analyzed using interpretive description method.
Result: A total of 7 parents of 5 children decided to withhold or withdraw LST. Five parents from 4 children decided to sign the do not attempt resuscitation (DNAR), and none choose to withdrew the LST, including mechanical support. Factors influenced their decision were communication, value of children, child best interest, intuition, religious belief, and emotions. Economic factors did not influence the decision-making.
Conclusion: Most parents decided to sign the DNAR, none choose to withdrew mechanical support. Communication was the most important factor that influenced parents to make a forgoing LST decision.
Premature discussions of patients' rights or duties to death must be put aside to focus first on whether death injures the patient who dies. Comparativism argues that dying does have impact on this individual, then it may alter our arguments on duties or rights to die, as well as on how and whether we should make end of life decisions for others. If Comparativism is correct, then there are large ramifications for ethics, medicine, and public health. Unfortunately for Comparativism, its incorporation of intuitions and possible worlds gives it the same undermining biased world problem encountered by Moore's isolation test for intrinsic value. Imagining/referring to a possible world whilst in this one merely creates the illusion that a decedent's death can benefit or injure her. When we select possible worlds or fill in their missing states of affairs, we can often impose our own biases into the thought experiment. Thinking about fictions is useful in figuring out what we should do and be, as well as evaluating what others did and were, but medical practice and policy affecting end of life issues in bioethics should always be based on reality and not subjective partiality.
PURPOSE OF REVIEW: The purpose of this review is to describe ethical and legal issues that arise in the management of patients with disorders of consciousness ranging from the minimally conscious state to the coma state, as well as brain death.
RECENT FINDINGS: The recent literature highlights dilemmas created by diagnostic and prognostic uncertainties in patients with disorders of consciousness. The discussion also reveals the challenges experienced by the disability community, which includes individuals with severe brain injury who are classified as having a disorder of consciousness. We review current guidelines for management of patients with disorders of consciousness including discussions around diagnosis, prognosis, consideration of neuropalliation, and decisions around life sustaining medical treatment.
SUMMARY: In the setting of uncertainty, this review describes the utility of applying a disability rights perspective and shared decision-making process to approach medical decision-making for patients with disorders of consciousness. We outline approaches to identifying surrogate decision makers, standards for decision-making and decision-making processes, specifically addressing the concept of futility as a less useful framework for making decisions. We also highlight special considerations for research, innovative and controversial care, brain death, organ donation, and child abuse and neglect.
AIM: Whilst transfer of Aged Care Facility ACF) residents to an acute hospital is sometimes necessary, for those at end-of-life this can cause fragmented care and disruption. This study explores the characteristics of ACF residents transferred to hospital in the last 24hours of life and factors that may influence this decision, including access to medical review, advance care planning and pre-emptive symptom management prescribing; an area not previously researched.
METHODS: A retrospective observational audit of ACF residents transferred to a metropolitan hospital between 2012 to 2017 who died within 24 hours of transfer.
RESULTS: 149 patients met the criteria. The median age was 87, 63(42%) were male. 83(56%) were transferred 'out-of-hours', the majority (71%) having no medical review in the 24hours prior. 43(29%) died within 4hours of arrival. The commonest reasons for transfer were dyspnoea (46%) and altered conscious state (32%), and commonest cause of death was pneumonia (37%). Some form of advance care planning documentation was available in 48%. Of the 86 (58%) patients who required injectable opioid for symptom management in hospital, only 7(8%) had this pre-emptively prescribed on their ACF medication chart.
CONCLUSIONS: Appropriate decision making around hospital transfers and end-of-life care for ACF residents may be influenced by access to professionals able to diagnose dying and access to appropriate symptom management medications. Advance care planning is important, but often requires the aforementioned to be enacted. Further research is needed to better inform how we can identify and meet the end-of-life care needs of this cohort.
For critically ill burn patients without a next of kin, the medical team is tasked with becoming the surrogate decision maker. This poses ethical and legal challenges for burn providers. Despite this frequent problem, there has been no investigation of how the presence of a next of kin affects treatment in burn patients. To evaluate this relationship, a retrospective chart review was performed on a cohort of patients who died during the acute phase of their burn care. Variables collected included age, gender, length of stay, total body surface area, course of treatment, and presence of a next of kin. In total, 67 patients met inclusion criteria. Of these patients, 14 (21%) did not have a next of kin involved in medical decisions. Patients without a next of kin were significantly younger (p=.02), more likely to be homeless (p<.01), had higher total body surface area burns (p=.008), had shorter length of stay (p<.001), and were 5 times less likely to receive comfort care (p=.01). Differences in gender and ethnicity were not statistically significant. We report that patients without a next of kin present to participate in medical decisions are transitioned to comfort care less often despite having a higher burden of injury. This disparity in standard of care demonstrates a need for a cultural shift in burn care to prevent suffering of these marginalized patients. Burn providers should be empowered to reduce suffering when no decision maker is present.
Advance care planning (ACP) for medical decision-making at the end of life has developed around the expectation of death from long-term, progressive chronic illnesses. We reexamine advance care planning in light of the increased probability of death from COVID-19, an exemplar of death that occurs relatively quickly after disease onset. We draw several conclusions about ACP in the context of infectious diseases: interpersonal and sociostructural barriers to ACP are high; ACP is not well-oriented toward decision-making for treatment of an acute illness; and the U.S. health care system is not well positioned to fulfill patients' end of life preferences in a pandemic. Passing the peak of the crisis will reduce, but not eliminate, these problems.