Formal procedure to facilitate the decision to withhold or withdraw life-sustaining interventions in a neonatal intensive care unit: a seven-year retrospective study.

BACKGROUND: Neonatal deaths are often associated with the complex decision to limit or withdraw life-sustaining interventions (LSIs) rather than therapeutic impasses. Despite the existence of a law, significant disparities in clinical procedures remain. This study aimed to assess deaths occurring in a Neonatal Intensive Care Unit (NICU) and measure the impact of a traceable Limitation or Withdrawal of Active Treatment (LWAT) file on the treatment of these newborns. METHODS: In this monocentric retrospective study, we reviewed all consecutive neonatal deaths occurring during two three-year periods among patients in the NICU at the North Hospital of Marseille: cohort 1 (from 2009 to 2011 without the LWAT file) and cohort 2 (from 2013 to 2015 after introduction of the LWAT file). Newborns included were: gestational age over 22 weeks, birth weight over 500 g, and admission and death in the same NICU. Deaths were categorized according to the classification described by Verhagen et al.: 1) children who died despite cardiopulmonary resuscitation (CPR) (no withholding nor withdrawing of LSIs), (2) children who died while the ventilator, without CPR (no withdrawing of LSIs, but CPR withheld), (3) children who died after LSIs were withdrawn, or (4) LSIs were withheld. RESULTS: 193 deaths were analyzed: 77 in cohort 1 and 116 in cohort 2. 50% of deaths followed the decision to limit or stop life-sustaining interventions. The mean age at death did not differ between the two cohorts (p = 0.525). An increase in the mortality rate after life-sustaining interventions were withdrawn was observed. The number of multidisciplinary decision meetings was statistically higher in cohort 2 (32.5% versus 55.2% p = 0.002), which were most often prompted due to neurological pathologies, with an increase in parental advice concerning the management of their child (p = 0.026). Even if the introduction of this file did not have an effect on patient age at death, it was significantly associated with a better understanding of end-of-life conditions (p = 0.019), including medication used to sedate and comfort the patient. CONCLUSIONS: Introduction of the LWAT file seems imperative to develop a personalized healthcare strategy for each child and situation.

How Surrogates Decide: A Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older Adults.

BACKGROUND: Many hospitalized adults do not have the capacity to make their own health care decisions and thus require a surrogate decision-maker. While the ethical standard suggests that decisions should focus on a patient's preferences, our study explores the principles that surrogates consider most important when making decisions for older hospitalized patients. OBJECTIVES: We sought to determine how frequently surrogate decision-makers prioritized patient preferences in decision-making and what factors may predict their doing so. DESIGN AND PARTICIPANTS: We performed a secondary data analysis of a study conducted at three local hospitals that surveyed surrogate decision-makers for hospitalized patients 65 years of age and older. MAIN MEASURES: Surrogates rated the importance of 16 decision-making principles and selected the one that was most important. We divided the surrogates into two groups: those who prioritized patient preferences and those who prioritized patient well-being. We analyzed the two groups for differences in knowledge of patient preferences, presence of advance directives, and psychological outcomes. KEY RESULTS: A total of 362 surrogates rated an average of six principles as being extremely important in decision-making; 77.8% of surrogates selected a patient well-being principle as the most important, whereas only 21.1% selected a patient preferences principle. Advance directives were more common to the patient preferences group than the patient well-being group (61.3% vs. 44.9%; 95% CI: 1.01-3.18; p = 0.04), whereas having conversations with the patient about their health care preferences was not a significant predictor of surrogate group identity (81.3% vs. 67.4%; 95% CI: 0.39-1.14; p = 0.14). We found no differences between the two groups regarding surrogate anxiety, depression, or decisional conflict. CONCLUSIONS: While surrogates considered many factors, they focused more often on patient well-being than on patient preferences, in contravention of our current ethical framework. Surrogates more commonly prioritized patient preferences if they had advance directives available to them.

"I don't need my patients' opinion to withdraw treatment": patient preferences at the end-of-life and physician attitudes towards advance directives in England and France.

This paper presents the results of a qualitative interview study exploring English and French physicians' moral perspectives and attitudes towards end-of-life decisions when patients lack capacity to make decisions for themselves. The paper aims to examine the importance physicians from different contexts accord to patient preferences and to explore the (potential) role of advance directives (ADs) in each context. The interviews focus on (1) problems that emerge when deciding to withdraw/-hold life-sustaining treatment from both conscious and unconscious patients; (2) decision-making procedures and the participation of proxies/relatives; (3) previous experience with ADs and views on their usefulness; and (4) perspectives on ways in which the decision-making processes in question might be improved. The analysis reveals differences in the way patient preferences are taken into consideration and shows how these differences influence the reasons physicians in each country invoke to justify their reluctance to adhering to ADs. Identifying cultural differences that complicate efforts to develop the practical implementation of ADs can help to inform national policies governing ADs and to better adapt them to practice.

Respect for autonomy, advance directives, and minimally conscious state.

In this article, I consider whether the advance directive of a person in minimally conscious state ought to be adhered to when its prescriptions conflict with her current wishes. I argue that an advance directive can have moral significance after its issuer has succumbed to minimally conscious state. I also defend the view that the patient can still have a significant degree of autonomy. Consequently, I conclude that her advance directive ought not to be applied. Then I briefly assess whether considerations pertaining to respecting the patient's autonomy could still require obedience to the desire expressed in her advance directive and arrive at a negative answer.

Reasons for discordance and concordance between POLST orders and current treatment preferences.

BACKGROUND: The reasons for discordance between advance care planning (ACP) documentation and current preferences are not well understood. The POLST form offers a unique opportunity to learn about the reasons for discordance and concordance that has relevance for POLST as well as ACP generally. DESIGN: Qualitative descriptive including constant comparative analysis within and across cases. SETTING: Twenty-six nursing facilities in Indiana. PARTICIPANTS: Residents (n = 36) and surrogate decision-makers of residents without decisional capacity (n = 37). MEASUREMENTS: A semi-structured interview guide was used to explore the reasons for discordance or concordance between current preferences and existing POLST forms. FINDINGS: Reasons for discordance include: (1) problematic nursing facility practices related to POLST completion; (2) missing key information about POLST treatment decisions; (3) deferring to others; and (4) changes over time. Some participants were unable to explain the discordance due to a lack of insight or inability to remember details of the original POLST conversation. Explanations for concordance include: (1) no change in the resident's medical condition and/or the resident is unlikely to improve; (2) use of the substituted judgment standard for surrogate decision-making; and (3) fixed opinion about what is "right" with little to no insight. CONCLUSION: Participant explanations for discordance between existing POLST orders and current preferences highlight the importance of adequate structures and processes to support high quality ACP in nursing facilities. Residents with stable or poor health may be more appropriate candidates for POLST than residents with a less clear prognosis, though preferences should be revisited periodically as well as when there is a change in condition to help ensure existing documentation is concordant with current treatment preferences.

Advance directives in dementia: issues of validity and effectiveness.

BACKGROUND: Although advance directives may seem useful instruments in decision-making regarding incompetent patients, their validity in cases of dementia has been a much debated subject and little is known about their effectiveness in practice. This paper assesses the contribution of advance directives to decision-making in the care of people with dementia, with a special focus on non-treatment directives and directives for euthanasia. METHODS: The relevant problems from the ethical debate on advance directives in cases of dementia are summarized and we discuss how these relate to what is known from empirical research on the validity and effectiveness of advance directives in the clinical practice of dementia care. RESULTS: The ethical debate focuses essentially on how to respond to the current wishes of a patient with dementia if these contradict the patient's wishes contained in an advance directive. The (very limited) empirical data show that the main factors in medical decision-making in such cases is not the patient's perspective but the medical judgment of the physician and the influence of relatives. Insight into the experiences and wishes of people with dementia regarding advance directives is totally lacking in empirical research. CONCLUSIONS: Ethics and actual practice are two "different worlds" when it comes to approaching advance directives in cases of dementia. It is clear, however, that the use of advance directives in practice remains problematic, above all in cases of advance euthanasia directives, but to a lesser extent also when non-treatment directives are involved. Although generally considered valid, their effectiveness seems marginal. Further empirical research into the (potential) value of advance directives in dementia care is recommended.

Variables that influence the medical decision regarding Advance Directives and their impact on end-of-life care.

The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a narrative literature review of 25 articles published between 1997 and 2018, in the following databases: CAPES, EBSCOhost, BDTD, VHL, Google Scholar, MEDLINE®/PubMed. The keywords utilized were: "advance directives", "living wills", "physicians", "attitude", "decision making", "advance care planning". The main factors that influenced physicians to implemente the directives were patients prognosis, medical paternalism, and patients understanding of their medical condition. Respect for autonomy, lack of knowledge and experience with directives, legal concerns, family influence, cultural and religious factors also contributed to medical decision. Most studies (86%) showed that having a directive led to lower rates of invasive interventions in the last days of patient´s life. Physicians were interested in respecting their patients' autonomy and agreed that having an advance directive helped in the decision-making process; however, they stated other factors were also taken into account, mainly prognosis and reversibility conditions. Having directives contributed to reducing the use of life support therapies and adoption of comfort measures.

End-of-life decision making in the intensive care unit: physician and nurse perspectives.

End-of-life decision making, including consideration of advance directives and code status, is taking place more frequently in critical care units. There is a need to identify how nurses and physicians perceive end-of-life care so that nurse-physician understanding and communication can be improved. A total of 96 physicians and nurses completed a survey about their general beliefs and practices related to end-of-life care in the intensive care unit. Nurses were more likely to ask if there was a living will and to read it. Only 53% of physicians read living wills; however 90% of physicians consider the wishes in the living will when making recommendations to the family. Physicians were more likely to discuss do-not-resuscitate (DNR) orders only when a prognosis was poor. Family dynamics and medical/legal concerns most often affect decisions to obtain/write a DNR order for a critically ill patient. Suggested approaches for improving physician and nurse collaboration about end-of-life decision making are discussed.

Overriding advance directives: A 20-year legal and ethical overview.

Health professionals have been known to override patients' advance directives. The most ethically problematic instances involve a directive's explicitly forbidding the administration of some life-prolonging treatment like resuscitation or intubation with artificial ventilation. Sometimes the code team is unaware of the directive, but in other instances, the override is done knowingly and intentionally with clinicians later pleading that it was done "in the patient's best interests." This article surveys a twenty-year period extending back to 1997 when ethicists began to question the legitimacy of overriding advance directives despite clinicians believing they had compelling reasons to do so. A legal and ethical analysis of advance directive overrides is provided as no court to date has awarded damages to plaintiffs who alleged their loved one suffered "wrongful life" following a successful life-prolonging intervention. A hypothetical scenario is especially discussed wherein a patient's DNR status is overridden because her cardiac arrest was caused by error whose effects might be reversible. The authors conclude with a strategy for mitigating certain vagaries associated with overriding advance directives, but suggest that until courts provide clinicians with clear guidelines and protections, violations of patients' advance directives are likely to continue.

End-of-life decisions: family views on advance directives.

A cross-sectional survey was administered to family members of patients who died at 1 of the 5 Catholic institutions comprising Mercy Health Partners, a health care system in Ohio, to determine their opinions about patient and family participation in decisions about end-of-life care. Among 165 respondents, 118 (86%) of 138 agreed that the family was encouraged to join in decisions and 133 (91%) of 146 that their family member's health care choices were followed. Most agreed that nurses answered their questions (93%, 141/151) and that the doctor communicated well with family members (83%, 128/155). Seventy percent (107/152) indicated that their family member had at least 1 advance directive. There were no differences in whether health care choices were followed when patients with formal advance directives (92%, 92/100) were compared with patients without formal advance directives (88%, 35/40). A unique survey instrument can be used to measure family perceptions and opinions of participation in decisions about end-of-life care.

"Taking over somebody's life": Experiences of surrogate decision-makers in the surgical intensive care unit.

BACKGROUND: Impaired capacity of patients necessitates the use of surrogates to make decisions on behalf of patients. Little is known about surrogate decision-making in the surgical intensive care unit, where the decline to critical illness is often unexpected. We sought to explore surrogate experiences with decision-making in the surgical intensive care unit. METHODS: This qualitative study was performed at 2 surgical intensive care units at a single, tertiary, academic hospital Surrogate decision-makers who had made a major medical decision for a patient in the surgical intensive care unit were identified and enrolled prospectively. Semistructured telephone interviews following an interview guide were conducted within 90 days after hospitalization until thematic saturation. Recordings were transcribed, coded inductively, and analyzed utilizing an interpretive phenomenologic approach. RESULTS: A major theme that emerged from interviews (N = 19) centered on how participants perceived the surrogate role, which is best characterized by 2 archetypes: (1) Preferences Advocates, who focused on patients' values; and (2) Clinical Facilitators, who focused on patients' medical conditions. The primary archetype of each surrogate influenced how they defined their role and approached decisions. Preferences Advocates framed decisions in the context of patients' values, whereas Clinical Facilitators emphasized the importance of clinical information. CONCLUSION: The experiences of surrogates in the surgical intensive care unit are related to their understanding of what it means to be a surrogate and how they fulfill this role. Future work is needed to identify and manage the informational needs of surrogate decision-makers.

Quality of Physician Orders for Life-Sustaining Treatment Forms Completed in Nursing Homes.

BACKGROUND: The physician orders for life-sustaining treatment (POLST) form allows seriously ill individuals to express their preferences for end-of-life treatments. Despite increased POLST use, little is known about the quality of completed forms. OBJECTIVE: We examined the quality of POLST forms prepared for nursing home residents, including whether they had required signatures and clinically consistent care preferences. DESIGN: We conducted a chart review of POLST forms for a sample of nursing home residents in California. SETTING/SAMPLE: We completed POLST audits for 938 residents in 13 nursing homes in Los Angeles. MEASURES: We recorded whether POLST forms were signed by both the patient (or proxy) and the physician, and whether the patient's treatment choices regarding resuscitation and medical intervention were consistent, as required by the California form. RESULTS: Overall, 69.6% of audited POLST forms had at least one indicator of poor quality. Most lacked a required signature (15.8% lacked a physician signature and 17.4% lacked a patient/proxy signature) and 5.6% had conflicting treatment preferences. CONCLUSION: We found 30.4% of POLST forms for nursing home residents were not complete or documented clinically contradictory treatment preferences. Improvement in the quality of POLST forms is needed.

Managed death in a PACE: pathways in present and advance directives.

OBJECTIVES: To test the effect of an innovative method of documenting present and advance health care wishes on the rates of completion and the qualitative choices of health care wishes. DESIGN: Interventional prospective cohort (pre- and post-). SETTING: Program for All-inclusive Care of the Elderly (PACE) site in St. Louis, MO. PARTICIPANTS: Enrolled PACE participants. INTERVENTION: A documentation tool that captures both present and advance directives in a framework of "pathways," blending goals of care with typical procedure-oriented directives. MEASUREMENTS: Data from medical records to calculate rates of health care wishes (HCW) completion, proportions of qualitative choices, and compliance with wishes at death. RESULTS: Baseline prevalences of present directives (PD) and advance directives (AD) were 77% and 36%, respectively, while Do Not Resuscitate (DNR) wishes were documented in 48% of PD and 26% of AD. After implementation of the Pathways Tool, completion rates increased to 99% for both PD and AD. Documented DNR wishes decreased to 38% of PD and increased to 66% of AD. Qualitative choices for care (Longevity vs Function vs Palliation) changed toward a palliation pathway for AD (from 9% to 53%). The rate of dying at home increased from 24% to 65%. Compliance with end-of-life wishes increased from 72% to 96%. These are statistically significant. CONCLUSION: Introduction of a novel pathways method of documenting HCW in a PACE site was associated with increased completion, preferences toward less invasive levels of care at life's end, and increased compliance with participants' wishes and deaths at home. Future research to validate the methodology employed in this intervention should be conducted in other long-term care settings.

The state of advance care planning: one decade after SUPPORT.

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) was a landmark study regarding end-of-life decision making and advance care planning. Phase I of the study looked at the state of end of life in various hospitals, and phase II implemented a nurse-facilitated intervention designed to improve advance care planning, patient-physician communication, and the dying process. The observational phase found poor quality of care at the end of life and the intervention failed to improve the targeted outcomes. The negative findings brought public attention to the need to improve care for the dying and spawned a wealth of additional research on decision-making at the end of life. In the decade since SUPPORT, researchers have defined the attributes of a "good death," addressed the role of advance directives in advance care planning, and studied the use of surrogate decision-making at the end of life. This rekindled the discussion on advance care planning and challenged health care providers to design more flexible approaches to end of life care.

Variables that influence the medical decision regarding Advance Directives and their impact on end-of-life care / Variáveis que influenciam na decisão médica frente a uma Diretiva Antecipada de Vontade e seu impacto nos cuidados de fim de vida

ABSTRACT The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a narrative literature review of 25 articles published between 1997 and 2018, in the following databases: CAPES, EBSCOhost, BDTD, VHL, Google Scholar, MEDLINE®/PubMed. The keywords utilized were: "advance directives", "living wills", "physicians", "attitude", "decision making", "advance care planning". The main factors that influenced physicians to implemente the directives were patients prognosis, medical paternalism, and patients understanding of their medical condition. Respect for autonomy, lack of knowledge and experience with directives, legal concerns, family influence, cultural and religious factors also contributed to medical decision. Most studies (86%) showed that having a directive led to lower rates of invasive interventions in the last days of patient´s life. Physicians were interested in respecting their patients' autonomy and agreed that having an advance directive helped in the decision-making process; however, they stated other factors were also taken into account, mainly prognosis and reversibility conditions. Having directives contributed to reducing the use of life support therapies and adoption of comfort measures.

RESUMO O objetivo deste estudo foi identificar as variáveis que influenciam na aderência dos médicos às Diretivas Antecipadas de Vontade e avaliar seu impacto nos cuidados de fim de vida. Trata-se de revisão narrativa de literatura, com levantamento de 25 artigos publicados nos bancos de dados Capes, EBSCOhost, BDTD, BVS, Google Scholar, MEDLINE®/PubMed, no período de 1997 a 2018. Os descritores de saúde utilizados foram: "diretivas antecipadas", "testamentos quanto à vida", "médicos", "atitude", "tomada de decisões" e "planejamento antecipado de cuidados". Os principais fatores que influenciaram os médicos na aderência às diretivas foram prognóstico do paciente, paternalismo médico, e entendimento do paciente sobre sua condição clínica. Respeito à autonomia, falta de conhecimento e experiência no uso de diretivas, preocupações legais, influência de familiares, fatores culturais e religiosos também contribuíram para a decisão médica. A maioria dos estudos (86%) evidenciou que a presença de uma diretiva foi responsável por menores taxas de intervenções invasivas nos últimos dias de vida dos pacientes. Médicos apresentaram interesse em respeitar a autonomia de seus pacientes e concordaram que a existência de uma diretiva avançada auxilia no processo de tomada de decisão, porém afirmam que outros fatores são levados em consideração, principalmente o prognóstico do paciente e as condições de reversibilidade. A presença de diretivas contribuiu para a redução do uso de terapias de suporte de vida e adoção de medidas de conforto.

[Respecting patient's end of life wishes: feasibility study of an information on surrogate and advance directives]. / Respect des volontés en fin de vie : étude de faisabilité d'une information sur la personne de confiance et les directives anticipées.

This prospective interventional study aims to show the feasibility and impact of information procedure on surrogate and advance directives (AD), for patients with incurable lung or gastrointestinal cancer. The intervention consisted of two semi-structured interviews. The first included: collection of preferences for prognostic information and involvement in decision-making, initial assessment of knowledge, information and surrogate and DA. The second assessed the impact of the first interview on knowledge, surrogate designation and DA writing, the assessment procedure by the patient and assessment of anxiety generated. Among 77 eligible patients, 23 (30 %) were included, 6/29 (21 %) refused to participate, 20/23 (87 %) completed both interviews. Patients not included had a higher 4-month death rate than included ones (39 % vs. 4 %, P=0.002). Patients included had high expectations of information and appreciated it be delivered early, by someone not involved in their care. The study shows the feasibility of the procedure and its impact on the use of surrogate and DA by patients, however, revealing the complexity of approaching end-of-life wills and the importance of a process of anticipated discussion.

King's theory as foundation for an advance directive decision-making model.

This article discusses the utilization of King's conceptual system, transaction process model, and theory of goal attainment as foundations for an advance directive decision-making model. Research has shown nurses may be educationally unprepared, experience conflicts between beliefs and actions, or resist the responsibility to address advance directives and end-of-life issues. Nurses, especially nurse practitioners providing primary care, are in positions to facilitate the process. By understanding and incorporating this model into practice, both the nurse and the client may achieve mutual goal attainment resulting in both increased client autonomy and Patient Self-Determination Act compliance.

[Euthanasia in advanced dementia: a moral impossibility]. / Euthanasie bij gevorderde dementie: een morele onmogelijkheid.

Advance directives containing a request for euthanasia in cases of severely debilitating dementia are of no use. In such an advanced stage of the disease, the doctor would have to administer lethal medication to a patient who does not realise what is happening to him/her. The Dutch Euthanasia Act is ambivalent about this possibility.