Purpose: To investigate the prevalence of advance directives, healthcare proxies, and legal representatives in Austrian intensive care units (ICUs), and to explore barriers faced by adults engaged in the contemplation and documentation phase of the advance care planning process.
Methods: Two studies were conducted: (1) A 4-week multicenter study covering seven Austrian ICUs. A retrospective chart review of 475 patients who presented to the ICUs between 1 January 2019 and 31 January 2019 was conducted. (2) An interview and focus group study with 12 semi-structured expert interviews and three focus groups with 21 adults was performed to gain insights into potential barriers faced by Austrian adults planning medical decisions in advance.
Results: Of the 475 ICU patients, 3 (0.6%) had an advance directive, 4 (0.8%) had a healthcare proxy, and 7 (1.5%) had a legal guardian. Despite the low prevalence rates, patients and relatives reacted positively to the question of whether they had an advance directive. Patients older than 55 years and patients with children reacted significantly more positively than younger patients and patients without children. The interviews and focus groups revealed important barriers that prevent adults in Austria from considering planning in advance for potentially critical health states.
Conclusion: The studies show low prevalence rates of healthcare documents in Austrian ICUs. However, when patients were asked about an advance directive, reactions indicated positive attitudes. The gap between positive attitudes and actual document completion can be explained by multiple barriers that exist for adults in Austria when it comes to planning for potential future incapacity.
Background: Patients with end-stage liver disease awaiting liver transplantation (LT) are seriously ill and experience fluctuating periods of clinical decompensation. Discussion of a patient’s advance care planning (ACP) wishes early in their dynamic disease course is critical to providing value-aligned care while awaiting LT. We aimed to evaluate current ACP documentation and assess readiness to engage in ACP in this population.
Methods: We conducted a retrospective study of adults undergoing LT evaluation from January 2017 to June 2017 and assessed characteristics associated with documentation using logistic regression. We then administered a survey to LT candidates from March 2018 to May 2018 to determine self-reported readiness to engage in ACP (range 1 = not at all ready to 5 = very ready).
Results: Among 170 LT candidates, median (interquartile range) age was 58 (53–65), 65% were men, MELDNa was 15 (11–21), and Child–Pugh A/B/C were 33/38/29%. Nine percent reported completing ACP prior to LT evaluation, but 0% had legal ACP forms or end-of-life wishes documented in the medical record. A durable power of attorney (DPOA) was discussed with 10%. In univariable analysis, white race (OR 4.16, p = 0.03) and female sex (OR 3.06, p = 0.04) were associated with ACP documentation, but Child–Pugh score and MELDNa were not. Of the 41 LT candidates who completed the ACP survey, 93% were ready to appoint a DPOA and 85% were ready to discuss end-of-life care.
Conclusion: There is a paucity of ACP documentation and identification of DPOA among LT candidates, despite patients reporting readiness to complete ACP and appoint a DPOA. These results reveal an opportunity for tools to facilitate discussions around ACP between clinicians, patients, and their caregivers.
Background/Objective: Surrogate decision makers for patients with intracerebral hemorrhage (ICH) are frequently asked to make difficult decisions on use of life-sustaining treatments. We explored ICH surrogate satisfaction with decision making and experience of decision regret using validated measures in a prospective multicenter study.
Methods: Cases of non-traumatic ICH were enrolled from three hospitals (September 2015–December 2016), and surrogate decision makers were invited to complete a self-administered survey. The primary outcome was the 10-item decision-making subscale of the Family Satisfaction in the Intensive Care Unit scale (FSICU-DM, range 0–100, higher is greater satisfaction), and the secondary outcome was the decision regret scale (range 0–100, higher is greater regret). Linear regression models were used to assess the association between satisfaction with decision making and pre-specified covariates using manual backward selection.
Results: A total of 73 surrogates were approached for participation (in person or mail), with 48 surrogates returning a completed survey (median surrogate age 60.5 years, 63% female, 77% white). Patients had a median age of 72.5, 54% were female, with a median admission Glasgow coma scale of 10, in-hospital mortality of 31%, and 56% with an in-hospital DNR order. Physicians commonly made treatment recommendation (> 50%) regarding brain surgery or transitions to comfort measures, but rarely made recommendations (< 20%) regarding DNR orders. Surrogate satisfaction with decision making was generally high (median FSICU-DM 85, IQR 57.5–95). Factors associated with higher satisfaction on multivariable analysis included greater use of shared decision making (P < 0.0001), younger patient age (p = 0.02), ICH score of 3 or higher (p = 0.03), and surrogate relationship (spouse vs. other, p = 0.02). Timing of DNR orders was not associated with satisfaction (P > 0.25). Decision regret scores were generally low (median 12.5, IQR 0–31.3).
Conclusions: Considering the severity and abruptness of ICH, it is reassuring that surrogate satisfaction with decision making was generally high and regret was generally low. However, more work is needed to define the appropriate outcome measures and optimal methods of recruitment for studies of surrogate decision makers of ICH patients.
Background: Substitute decision-makers (SDMs) make decisions on behalf of patients who do not have capacity, in line with previously expressed wishes, values and beliefs. However, miscommunications and poor awareness of previous wishes often lead to inappropriate care. Increasing public preparedness to communicate on behalf of loved ones may improve care in patients requiring an SDM.
Methods: We conducted an online survey in January 2019 with a representative sample of the Canadian population. The primary outcome was self-reported preparedness to be an SDM. The secondary outcome was support for a high school curriculum on the role of SDMs. The effect of socio-demographics, known enablers and barriers to acting as an SDM, and attitudes towards a high school curriculum were assessed using multivariate analysis.
Results: Of 1,000 participants, 53.1% felt prepared to be an SDM, and 75.4% stated they understood their loved one’s values. However, only 55.6% reported having had a meaningful conversation with their loved one about values and wishes, and only 61.7% reported understanding the SDM role. Engagement in advance care planning for oneself was low (23.1%). Age, experience, training and comfort with communication were associated with preparedness in our multivariate analysis. A high school curriculum was supported by 61.1% of respondents, with 28.3% neutral and 10.6% against it.
Interpretation: There is a gap between perceived and actual preparedness to be an SDM. Many report understanding their loved one’s values yet have not asked them about wishes in illness or end of life. The majority of respondents support high school education to improve preparedness.
L’objectif de l’étude est d’identifier les freins et les leviers à la mise en place de la démarche palliative en EHPAD. C’est une étude ancillaire. Nous avons mené une enquête qualitative par entretiens semi-directifs auprès de médecins coordonnateurs d’EHPAD en Lorraine. Le recueil de données a débuté en janvier 2018 et s’est achevé en juin 2018. Les verbatim ont été analysés par théorisation ancrée. Onze médecins coordonnateurs ont participé à notre enquête. L’analyse met en évidence des contraintes structurelles et conjoncturelles propres à l’EHPAD dont l’absence de permanence médicale et infirmière, les limites des moyens matériels et personnels, ainsi que la possibilité des EHPAD intra-hospitaliers de s’affranchir de ces contraintes. La sensibilisation et la formation des acteurs de la prise en soins ont été identifiées comme des leviers majeurs dans la prise en charge palliative. À l’inverse, le manque de formation est apparu comme un obstacle. L’intervention des équipes ressources hospitalisation à domicile et équipe mobile de soins palliatifs est décrite comme un appui primordial. L’analyse a montré que l’organisation et la coopération des différents acteurs est un enjeu majeur pour la mise en place de la démarche palliative. Les dispositifs de personne de confiance et directives anticipées sont mal utilisés et ne sont d’aucune aide à la démarche palliative dans les EHPAD. Ainsi, la majorité des freins identifiés par l’enquête sont les contraintes structurelles et le manque de formation. Le principal levier à développer semble être celui de la formation, aux soins palliatifs et à l’utilisation des différents outils crées pour contourner les contraintes structurelles.
The minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent communication. As medical expertise develops and technology advances, it is likely that more and more patients with disorders of consciousness will be recognized as being in the minimally conscious state, with minimal to no ability to participate in medical decision-making. Here we provide guidance useful for surrogates and medical professionals at any medical decision point, not merely for end-of-life decision-making. We first consider the legal landscape: precedent abounds regarding unconscious patients in coma or the vegetative state/Unresponsive Wakefulness Syndrome (VS/UWS), but there is little legal precedent involving patients in the minimally conscious state. Next we consider surrogates’ ethical authority to make medical decisions on behalf of patients with disorders of consciousness. In everyday medical decision-making, surrogates generally encounter few, if any, restrictions so long as they adhere to an idealized hierarchy of decision-making standards designed to honor patient autonomy as much as possible while ceding to the reality of what may or may not be known about a patient’s wishes. We conclude by proposing an ethically informed, practical guide for surrogate decision-making on behalf of patients in the minimally conscious state.
This case raises the difficult question of how to respond to patients who appear to lack decision-making capacity, yet retain limited communication that allows them to state a preference for life-sustaining treatment that conflicts with the choice of their surrogate. I argue that the patient’s preference should be honored, even though the patient lacks decision-making capacity, and the preference contradicts the wishes of the surrogate.
All medical care providers are legally and ethically bound to respect their patients' wishes. However, as patients lose decision-making capacity and approach end of life, their families or surrogates, who are confronted with grief, fear, self-doubt, and/or uncertainty, may ask physicians to provide treatment that contradicts the patients' previously stated wishes. Our work discusses the legal and ethical issues surrounding such requests and provides guidance for clinicians to ethically and compassionately respond—without compromising their professional and moral obligations to their patients.
To the Editor : A woman with a history of obesity, diabetes, cardiovascular disease, and end-stage renal disease was admitted to an overburdened New York hospital with respiratory distress due to coronavirus disease 2019 (COVID-19). At the time of admission, she was unable to speak for herself, and given restrictions on visitation, it took much effort to find her daughter who did not know the patient's medical wishes. Before COVID-19, the daughter had accompanied her wheelchair-bound mother to all of her appointments including visits with an endocrinologist, cardiologist, primary care doctor, and physical therapist in the preceding 3 months, as well as dialysis appointments three times a week. However, advance care planning (ACP) had never been discussed.
With healthcare systems under pressure from scarcity of resources and ever-increasing demand for services, difficult priority setting choices need to be made. At the same time, increased attention to patient involvement in a wide range of settings has given rise to the idea that those who are eventually affected by priority setting decisions should have a say in those decisions. In this paper, we investigate arguments for the inclusion of patient representatives in priority setting bodies at the policy level. We find that the standard justifications for patient representation, such as to achieve patient-relevant decisions, empowerment of patients, securing legitimacy of decisions, and the analogy with democracy, all fall short of supporting patient representation in this context. We conclude by briefly outlining an alternative proposal for patient participation that involves patient consultants.
Introduction: Although shortcomings in clinician–family communication and decision making for incapacitated, critically ill patients are common, there are few rigorously tested interventions to improve outcomes. In this manuscript, we present our methodology for the Pairing Re-engineered Intensive Care Unit Teams with Nurse-Driven Emotional support and Relationship Building (PARTNER 2) trial, and discuss design challenges and their resolution.
Methods and analysis: This is a pragmatic, stepped-wedge, cluster randomised controlled trial comparing the PARTNER 2 intervention to usual care among 690 incapacitated, critically ill patients and their surrogates in five ICUs in Pennsylvania. Eligible subjects will include critically ill patients at high risk of death and/or severe long-term functional impairment, their main surrogate decision-maker and their clinicians. The PARTNER intervention is delivered by the interprofessional ICU team and overseen by 4–6 nurses from each ICU. It involves: (1) advanced communication skills training for nurses to deliver support to surrogates throughout the ICU stay; (2) deploying a structured family support pathway; (3) enacting strategies to foster collaboration between ICU and palliative care services and (4) providing intensive implementation support to each ICU to incorporate the family support pathway into clinicians’ workflow. The primary outcome is surrogates’ ratings of the quality of communication during the ICU stay as assessed by telephone at 6-month follow-up. Prespecified secondary outcomes include surrogates’ scores on the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the modified Patient Perception of Patient Centredness scale, the Decision Regret Scale, nurses’ scores on the Maslach Burnout Inventory, and length of stay during and costs of the index hospitalisation.
We also discuss key methodological challenges, including determining the optimal level of randomisation, using existing staff to deploy the intervention and maximising long-term follow-up of participants.
Ethics and dissemination: We obtained ethics approval through the University of Pittsburgh, Human Research Protection Office. The findings will be published in peer-reviewed journals.
Background: A large number of end-of-life decisions are made by a next-of-kin for a patient who has lost their decision-making capacity. This has given rise to investigations into how surrogates make these decisions. The experimental perspective has focused on examining how the decisions we make for others differ from our own, whereas the qualitative perspective has explored surrogate insights into making these decisions.
Methods: We conducted a mixed methods study to bring these two perspectives together. This is crucial to comparing decision outcomes to the decision process. We asked older adult partners to make end-of-life decisions for each other. They then took part in a semi-structured interview about their decision process. Transcripts were analysed using thematic analysis.
Results: 24 participants took part in the study. Surrogates were more likely to take a life-saving treatment at the risk of a diminished quality of life for their partner than for themselves. This was consistent with their transcripts which showed that they wanted to give their partner a better chance of living. Although there was evidence of surrogate inaccuracy in the decision task, participants overwhelmingly reported their intention to make a decision which aligns with the substituted judgment standard. However, uncertainty about their wishes pushed them to consider other factors.
Conclusions: Taking a mixed methods approach allowed us to make novel comparisons between decision outcome and process. We found that the intentions of surrogates broadly align with the expectations of the substituted judgment standard and that previous discussions with their partner helps them to make a decision.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
At the end of life, hospice patients frequently rely on surrogate decision makers (SDMs) for healthcare decisions, which creates anxiety among SDMs. This project evaluated whether an educational intervention to create a plan of care for hospice patients would reduce anxiety among SDMs. Before the intervention, immediately after the intervention, and 2 weeks following the intervention SDM anxiety was measured with the Geriatric Anxiety Scale, State Trait Anxiety Inventory-State Anxiety Scale, and one question about decision-making anxiety. Twelve patients (80±14.7 years) and 18 SDMs (60±12.9 years) completed the intervention. Immediately after the intervention SDMs showed a significant decrease (P=0.003) in anxiety. When anxiety was measured 2 weeks post-intervention, anxiety had increased again, and was no longer significantly different from pre-intervention levels. This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease to SDM anxiety levels.
The law has a clear role to play in supporting patients and their substitute decision-makers (SDMs) to be involved in end-of-life (EOL) decision-making. Although existing literature suggests that knowledge of EOL law is variable among health professionals, there is little information about the extent and sources of such knowledge within the general community. A telephone survey of a representative sample of adults in three Australian States used six case scenarios to examine the extent to which adults know their legal duties, rights and powers as patients or SDMs; the sources from which people derive relevant legal knowledge; experiences of EOL decision-making; and individual characteristics associated with levels of knowledge. The results show considerable variation in levels of legal knowledge dependent primarily of the area of decision-making presented, some sizeable gaps in people's knowledge of EOL law, and varied awareness of how to access appropriate information on this subject. This study points to the need to increase community legal literacy around EOL decision-making, enhance awareness of the role of law in these circumstances and promote the availability of reliable and accessible information on the law at the time when it is needed.
BACKGROUND AND PURPOSE: Critically ill patients require a careful approach for prognosis and decision-making. The German health legislation aims to strengthen the role of advance directives (ADs) and health-care proxies (HCPs). Their impact within a dedicated neurocritical care setting is unknown. This study aimed to assess the practice of withdrawal or withholding of life-sustaining therapy (WOLST) in a German neurointensive care unit (NICU) focusing on whether AD or HCP is associated with timing and treatment intensity.
METHODS: Data on patients who died after WOLST at a dedicated NICU of a German university hospital, from 2010 to 2013, were retrospectively analyzed.
RESULTS: Of 400 deceased patients, 310 (77.5%) died after initiation of WOLST. Among them, 68 (21.9%) were identified to have AD or HCP or both (AD + HCP). WOLST patients with AD, HCP, or AD + HCP were older than those without (median age: 77 vs 72 years, P < .001) but did not show any other distinct baseline features. There was no difference in the specific neurocritical care measures between the groups. Poisson regression analysis showed no significant difference in the probability of time-dependent WOLST initiation between those with and without AD/HCP, after adjusting for age and sex (adjusted incidence rate ratio, 1.10; 95% confidence interval, 0.94-1.28; P = .244).
CONCLUSIONS: In this single-center study of mainly cerebrovascular NICU patients, AD or HCP was neither associated with an earlier WOLST nor associated with a difference in treatment intensity before WOLST. Further prospective studies should assess the emerging concept of advance care planning in neurocritical care.
Objective: To assess levels of knowledge about patients’ rights, surrogate decision-makers, and advance directives among healthcare professionals at three hospitals in France.
Methods: A multicenter, cross-sectional study in three geriatric hospitals in the Paris area (France) in 2015. The participants’ level of knowledge was assessed via an 18-item self-questionnaire on surrogate decision-makers, advance directives, and end-of-life decision-making. The characteristics associated with a good level of knowledge were assessed using logistic regression.
Results: Among the 301 healthcare professionals (median ± standard deviation age: 40.4 ± 10.2 years; women: 73.4 %), only 15.0 % (95 % confidence interval (CI): [19.7–29.5]) correctly answered at least 75 % of the questions on patients’ rights. Respectively 24.6 % [19.7–29.5], 36.5 % [31.1–42.0] and 37.5 % [32.0–43.0] had sufficient knowledge regarding “surrogate decision-maker”, “advance directives”, and “decision-making at the end of life”. In a multivariable analysis, the only factor significantly associated with a good level of knowledge about end-of-life policy was employment in a university hospital, with a non-significant trend for status as a physician.
Conclusions: Our survey of staff working in geriatric care units highlighted the poor overall level of knowledge about healthcare surrogates and advance directives; the results suggest that additional training in these concepts is required.
Practice implications: Continuing education of healthcare professionals on advance directives and surrogate decision-maker should be promoted to ensure rights of elderly patients at the end of life.
Rationale & Objective: Older patients with advanced chronic kidney disease (CKD) utilize intensive care at the end-of-life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non–dialysis-dependent population.
Study Design: n-person, interviewer-administered surveys of patients 70 years and older with non–dialysis-dependent CKD stage 4 or 5 and their self-identified care partners.
Setting & Participants: 42 participants (31 patients, 11 care partners) at two clinical sites in Greater Boston
Outcomes: Completion of advance directives, and self-reported perceptions, preferences, and experiences of ACP.
Analytical Approach: Descriptive analysis of patient and care partner surveys. McNemar’s test analysis to compare patient and care partner responses.
Results: Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians’ judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with two hypothetical scenarios (stroke/heart attack, or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team.
Limitations: Single metropolitan area; most patients did not identify a care partner, non-response bias and small sample size.
Conclusions: Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.
BACKGROUND/AIMS: Despite increased demand for cancer patient's to make their own decisions based on an adequate understanding of what is involved in chemotherapy, the primary signing agent and the reasons for surrogate signing have not been appropriately evaluated.
METHODS: The ethics committee of the palliative medicine subgroup of the Korean Cancer Study Group designed this study and solid cancer patients to whom chemotherapy was offered, from seven institutions, were evaluated. The details relating to surrogate's signing of chemotherapy consent were evaluated. Then, we analyzed the factors associated with surrogate's signing according to patient's demographics and characteristics related to chemotherapy consent.
RESULTS: Surrogate's signing was noted for 20.7% (84/405) of patient and over half of surrogate signings were performed by the patients' son or daughter (60.7%). Two main reasons for surrogate signing were patient's incapacity (34.5%) and taking over authorization from patients (33.3%). The factors associated with more frequent surrogate's signing were absence of spouse, lower education level, outpatient, and when residents played a role as a principle provider of chemotherapy consent.
CONCLUSION: This study suggests the lack of patients' own decision making for chemotherapy in some situations. This ethical dilemma must be considered for adequately informed decision making for chemotherapy while ensuring the patients' autonomy is maintained.
Background: Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers, especially their surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients’ quality of life and death and dying as well as surrogates’ mental health.
Methods: Clinician stakeholder and surrogate participant feedback (n = 15), as well as results from an open trial (n = 10), will be used to refine the intervention, which will then be evaluated through a multisite randomized controlled trial (RCT) (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of post-traumatic stress disorder, prolonged grief disorder, and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at 1 and 3 months from post-intervention assessment. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment. Participant exit interviews will be conducted at the 3-month assessment time point and will be analyzed using qualitative thematic data analysis methods.
Discussion: The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application.
Trial registration: ClinicalTrials.gov, NCT03276559. Retrospectively registered on 8 September 2017.