This article will focus on the following objectives specific to end-of-life care for professional case management:
Discuss recent industry topics that influence care processes.
Explore the opioid epidemic's impact on pain management.
Identify terms associated with end-of-life and life-limiting care.
Understand types of advance directives and care defining tools.
Define the purpose of psychiatric advance directives.
Discuss the shifting diagnostic face.
Discuss how inclusion manifests for the lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ) population.
Explore challenges working through adolescent decision making and treatment.
Review regulation and reimbursement shifts across the industry.
Identify the use of artificial intelligence.
Discuss the value of ethics committees in health care organizations.
Define the Four Cs of Care Considerations.
Identify ethical principles for consideration by the workforce.
The importance of advance care planning (ACP) has been increasingly recognized by health systems. However, 46-76% of patients report engaging in ACP with lawyers, while only a minority report doing so with physicians. In the U.S. ACP with lawyers focuses on advance directive documents, naturally occurs outside of healthcare contexts, and is often uninformed by the clinical context, such one’s prognosis and clinical trajectory. These forms are regularly stored at home or at a lawyer’s office and not available at the bedside when needed in a medical crisis. Yet, in contrast to clinicians, lawyers hold sophisticated knowledge about their states’ advance directive law. Lawyers may also understand clients’ socioeconomic context and plans more broadly, which are known to be critical for contextualizing and personalizing patient care but are often not well-captured in healthcare. Aligning medical and legal approaches to ACP is important to ensuring the quality and value of those efforts. As an important first step toward this goal, we convened an interprofessional panel of medical and legal experts to elucidate the state of medical-legal ACP and begin to identify strategies to improve and align practices within and across professions. This article describes the historical disconnects between the medical and legal practice of ACP, recommendations and products of the interprofessional panel, and recommendations for future medical-legal collaboration.
En 2013, le Conseil d’éthique de la Fédération genevoise des établissements médico-sociaux (Fegems) émettait des recommandations relatives au "Respect des volontés du résidant atteint de troubles cognitifs", que la Revue internationale de soins palliatifs reprend ci-après dans son intégralité. En effet, les enjeux éthiques soulevés par les soins – entendus au sens large – aux personnes souffrant de troubles cognitifs restent malheureusement d’actualité. C’est la raison pour laquelle ce même conseil a publié en 2019 des nouvelles recommandations intitulées « Petit manuel d’anticipation en EMS : le projet d’accompagnement et les directives anticipées ». Dans cette publication, le Conseil d’éthique souligne, à travers des exemples concrets, l’importance de l’anticipation dans l’accompagnement de la résidante ou du résidant. L’anticipation joue un rôle déterminant parce que la pratique montre que beaucoup de résidant-e-s se sentent inconfortables lorsqu’ils doivent envisager une incapacité de discernement future et que les professionnel-le-s se sentent mal à l’aise et se demandent quand et comment les informer, ainsi que leurs proches, de leurs droits. En outre, le domaine des directives anticipées est complexe et technique, en raison des exigences légales et des difficultés d’interprétation qu’il comporte. Le Conseil d’éthique est convaincu que le projet d’accompagnement est l’outil le mieux adapté pour appréhender la vie de la résidante ou du résidant dans l’EMS, et pour donner une assise cohérente à d’autres dispositifs tels que le projet de soins anticipé ou les directives anticipées.
Increased attention is being paid to "dementia directives," advance directives tailored to persons with dementia that outline what treatments an individual with dementia might wish to receive or forgo should they lose capacity. Particular focus has been placed on the request to have assisted oral feedings withheld, the so-called Stopping of Eating and Drinking by Advance Directive (SED by AD), the purpose of which is to hasten death. This article reviews the available literature regarding the practice of SED by AD and explores the clinical and ethical aspects as they present at the bedside. Our review aims to show that practical, clinically applicable ways to approach such requests must be developed in order to balance the fundamental principles at play.
The purpose of this study was to examine the psychometric properties of the Advance Directive Attitude Survey in Korean (K-ADAS), a measure of attitudes toward advance directives (ADs). A total of 118 low-income, community-dwelling older adults (mean age, 75.09 years) participated. An exploratory factor analysis (EFA) was conducted to determine the factor structure of the K-ADAS. Validity was further assessed by known associations of the K-ADAS with perceived susceptibility and severity using part of the Advance Care Planning surveys. Its reliability was examined by calculating alpha coefficients. EFA determined a three-factor structure model with good model fit. Validity was further supported with significant correlations between the K-ADAS and susceptibility and severity. Reliability was supported by adequate level of Cronbach's alpha. The K-ADAS was a valid and reliable measure for assessment of AD attitudes with a sound model fit. Thus, the K-ADAS can be used to assess AD attitudes among community-dwelling elders.
OBJECTIVE: To document (using available data) the profile of the patients seen by the hospital's palliative service (PS) and who died in the medicine intensive care unit (ICU) of the Veterans Affairs Caribbean Healthcare System.
METHODS: A record review of subjects who died in the ICU from January 1, 2012, to December 31, 2014. Demographic data, underlying comorbidities, the cause of death, the length of stay, evaluation made by the PS, and the withdrawal of life support (when such occurred) were recorded for each patient.
RESULTS: A total of 200 patients met the criteria, mostly males. All the women and 50% of the men were over 79 years old. Seventy three percent of the patients were on mechanical ventilation when admitted, most having come from the emergency department. Fewer than 15% had advance directives. Forty-nine percent had been admitted to a hospital facility at least once during the year prior to their current admission. Most of the patients (60.5%) died within the first week, while 13% died within the first 24 hours. PS was requested for 56% of those who survived more than 24 hours, of which only 10% underwent the withdrawal-of-care protocol.
CONCLUSION: A small percentage of the patients who died in the ICU had advance directives at the time of admission, this though all were of advanced age, had recently been discharged after a prior hospital stay, suffered from 1 or more chronic illnesses, or had a history of mental or physical disease. Our findings underscore the need for the early referral of patients of the type previously mentioned to a PS.
INTRODUCTION: Advance healthcare directives (AHDs) in mental health offer important information regarding service users' preferences. However, whether AHDs are truly understood by providers is questionable.
AIM: To survey the knowledge and attitudes of mental health professionals towards AHDs and examine any associations with socio-demographic and occupational variables.
METHOD: We cross-sectionally surveyed the knowledge and attitudes of 113 mental health professionals by using two validated questionnaires.
RESULTS: Participants showed very positive attitudes and high levels of knowledge about the conceptual definition and application of AHDs in clinical practice but their knowledge of the legalities, procedure and registration of AHDs was poor. Working in a community, having a career specializing in mental health, or having personally signed an AHD was associated with enhanced knowledge about them. Moreover, female sex or employment as an auxiliary nursing-care technician was associated with stronger positive attitudes.
DISCUSSION: Legal and structural changes will be needed to implement AHDs in Spain and to promote competence among healthcare providers in order to include AHDs in everyday practice.
IMPLICATIONS FOR PRACTICE: The Spanish mental healthcare system requires legal and structural changes and must improve healthcare providers' competence in AHDs before they are implemented.
BACKGROUND: Advance care planning and palliative care are gaining recognition as critical care components for adults with CHD, yet these often do not occur. Study objectives were to evaluate ACHD providers' 1) comfort managing patients' physical symptoms and psychosocial needs and 2) perspectives on the decision/timing of advance care planning initiation and palliative care referral.
METHODS: Cross-sectional study of ACHD providers. Six hypothetical patients were described in case format, followed by questions regarding provider comfort managing symptoms, initiating advance care planning, and palliative care referral.
RESULTS: Fifty providers (72% physicians) completed surveys. Participants reported low levels of personal palliative care knowledge, without variation by gender, years in practice, or prior palliative care training. Providers appeared more comfortable managing physical symptoms and discussing prognosis than addressing psychosocial needs. Providers recognised advance directives as important, although the percentage who would initiate advance care planning ranged from 18 to 67% and referral to palliative care from 14 to 32%. Barriers and facilitators to discussing advance care planning with patients were identified. Over 20% indicated that advance care planning and end-of-life discussions are best initiated with the development of at least one life-threatening complication/hospitalisation.
CONCLUSIONS: Providers noted high value in advance directives yet were themselves less likely to initiate advance care planning or refer to palliative care. This raises the critical questions of when, how, and by whom discussion of these important matters should be initiated and how best to support ACHD providers in these endeavours.
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.
A huge proportion of people with Parkinson’s disease (PwP) in Germany have written an advance directive (AD). However, the content of these forms in regard to specific Parkinson’s disease (PD)-related complications is rather low. There is an urgent need to specify ADs of PwP and consequently to improve decision-making concerning end-of-life aspects for affected patients. Evidence- and consensus-based PD-specific recommendations for ADs might help to close this gap. A Delphi study with two online Delphi rounds was initiated. Initial recommendations were built on findings from previous studies and derived from evidence-based literature. Consensus on recommendations was defined as =80% concordance regarding clarity of formulated aspects and relevance for clinical practice. A total of 22 experts (15.2% response rate) predominantly from the workgroup ‘neuro-palliative care’ in Germany performed two Delphi rounds. Consensus was achieved for 14 of 24 initially presented recommendations. Recommendations relating to dopaminergic therapy as well as to non-oral therapy options were considered important by the expert panel. The recommendations should be taken into account when developing and giving advice on ADs for PwP. Health professionals should be trained in counselling ADs of PwP and in integrating these recommendations in ADs during the disease course of PD.
This paper revisits Ronald Dworkin's influential position that a person's advance directive for future health care and medical treatment retains its moral authority beyond the onset of dementia, even when respecting this authority involves foreshortening the life of someone who is happy and content and who no longer remembers or identifies with instructions included within the advance directive. The analysis distils a eudaimonist perspective from Dworkin's argument and traces variations of this perspective in further arguments for the moral authority of advance directives by other authors. It then critiques a feature of the eudaimonist perspectives within these arguments-namely, the position that dementia has a retroactive negative impact on what a person has previously valued-and challenges the commonly held assumption underlying them that a person's life and well-being have relatively low value beyond the onset of dementia. Although advance directives have moral authority as a means of guiding one's future health care, accounts that dismiss the value of the lives and well-being of people living with dementia should be questioned to the extent that such accounts are used to support the moral authority of advance directives stipulating measures to foreshorten individuals' lives.
Background: A psychiatric advance directive (PAD) is designed to prevent involuntary mental health interventions by enabling people with serious mental illnesses to plan ahead for their own treatment during a future incapacitating crisis. This study implemented PAD facilitation in assertive community treatment (ACT) teams.
Aims: We examined ACT clients’ attitudes toward PAD facilitators, satisfaction with PAD facilitation, the short-term impact of PAD completion on subjective sense of empowerment and attitudes toward treatment, and whether the type of PAD facilitator made a difference.
Methods: Participants were randomly assigned to be offered PAD facilitation by a peer support specialist or non-peer ACT team clinician, and interviewed at baseline (n = 145) and post-facilitation 1–2-month follow-up (n = 116), to assess perceived consumer-directedness of PAD facilitation, empowerment and various treatment attitudes. Mean scores before and after the intervention were compared for PAD-completers, non-completers, and those who completed a PAD with a peer vs. non-peer. The effect of PAD completion was assessed using logistic and linear regression analysis.
Results: There was no evidence of bias against peer-facilitators. There was a modest positive impact of PAD facilitation on treatment attitudes and empowerment.
Conclusions: PAD facilitation by peer support specialists and others working in community mental health settings supports recovery.
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: Mental health advance directives support service users' autonomy and provide a voice in their care choices when they may not have capacity to give informed consent. New Zealand's Southern District Health Board has recently introduced advanced directives in mental health services.
Method: Completed advance directives (n = 53) and additional demographic data were accessed from clinical records.
Analysis: Each advance directive was read and analysed by three members of the research team. The advance directive instrument has eight possible fields which could be completed, covering such topics as who should be contacted in a crisis; people service users do, or do not, want involved in their treatment; what service users would, or would not like to have happen should they become unwell; management of personal affairs; other specific preferences; and provision of further relevant information. The number of preferences stated in each field was also calculated.
Results: The advance directives provided expressions of preferences which were personally meaningful for service users and provided practical guidance for clinicians. Service users expressed mainly positive preferences, though some expressed negative treatment preferences, and many service users expressed preferences relating to personal affairs. Friends, family members and clinicians were nominated as preferred contacts in a crisis.
Conclusions: Service users will engage with advance directives if supported to do so. This study's results should help promote the wider availability of advance directives in New Zealand and the current reform of our mental health legislation.
BACKGROUND: Emergency departments (EDs) are crowded with critically ill patients, many of whom are no longer able to communicate with the emergency staff. Substitute decision makers are often unknown or not reachable in time. The availability of advance directives (ADs) among Swiss ED patients has not yet been evaluated. The purpose of this prospective survey was to investigate the prevalence of ADs among ED patients and to identify factors associated with the existence or absence of ADs.
METHODS: In a prospective survey, we enrolled consecutive patients from 10–30 July 2017 who visited a tertiary care ED. Patients completed a written, standardised and self-administrated questionnaire during the waiting time. The primary endpoint was the prevalence of ADs in ED patients. Secondarily, we defined predictors associated with the existence or absence of ADs. Two months after the first survey, there was a written follow-up survey asking patients without ADs whether they had completed an AD in the meantime.
RESULTS: Fifty-eight of 292 enrolled ED patients (19.9%) had a completed AD. Overall, 49.3% of the survey population was female. Patients having an AD were older (69.5 years, interquartile range [IQR] 57–81 vs 39 years, IQR 27–56) and had more comorbidities (67.2% vs 38.9%) compared with patients without ADs. The four leading reasons given for not having an AD were: 33.6% never considered completing one, 26% did not know about ADs, 14% preferred family to make decisions, 11.6% felt it was too early to make such a decision. Predictors for having an AD were older age (p <0.001), being in long-term medical treatment by a specialist (p = 0.050), being Swiss (p = 0.021) and living with nursing care (p = 0.043). Of the ED patients with ADs, 46.6% discussed their AD with the family and 31% with their general practitioner. Results of the follow-up survey showed that eight participants had completed an AD in the meantime. The prevalence of ADs increased from 19.9% to 22.6%.
DISCUSSION: During the last 20 years, the percentage of patients having an AD has not changed. Even today, only every fifth ED patient has a completed AD. Nearly two thirds of ED patients never considered completing one or did not know about ADs. Therefore, there is an urgent need to better inform and sensitise the public, so that they will define in a timely manner legally valid and specifically defined decisions about future medical treatments and wishes by completing individual directives.
BACKGROUND: Advance care planning (ACP) is an ongoing process of communication involving patients, family members, and caregivers on one side and healthcare providers on the other to establish values, goals, and preferences for future care, along with discussions concerning end-of-life care options. Advance directives promote patient autonomy and provide written documentation of a patient's wishes for future care.
OBJECTIVES: This quality improvement project aimed to determine if ACP discussions initiated by an advanced practice provider (APP) would enhance patient-centered end-of-life care.
METHODS: This study involved retrospective data collection of 20 inpatients and 20 outpatients without a scanned advance directive in the electronic health record at the time of admission or clinic visit, as well as an ACP intervention by an APP.
FINDINGS: APPs can initiate ACP discussions with patients with cancer, which may assist in their understanding of ACP, resulting in completion of the advance directive documents and a change in their code (resuscitation) status.
OBJECTIVE: Irish legislation on Advance Healthcare Directives (Assisted Decision Making Capacity Act 2015, ADMC) proposes to change the basis of decision making from acting in the patient's best interests to following the expressed will and intentions of the patient. Refusal of life-saving care can occur, without sound reasons. The implications for care in life-threatening emergencies have not been explored among clinicians.
DESIGN: An anonymous questionnaire survey of Advanced Paramedics (AP) covering awareness of the legislation, attitudes to and experience of refusal of care and potential actions in emergency scenarios now and if the legislation were in force. The scenarios covered end-of-life and deliberate self-harm situations potentially requiring resuscitation.
SETTING: All 482 graduates of the Advanced Paramedic Training Programme were invited to take part.
RESULTS: Overall, 85/389 (21.9%) valid contacts responded, with demographic characteristics similar to the overall population. Attitudes ranged from highly positive to highly negative in relation to the potential impact of the legislation on professional and operational responsibilities. Respondents described marked changes in whether they would offer resuscitation if the ADMC were in place.
CONCLUSION: Irish legislation which changes the traditional basis of medical practice away from the best interests of the patient may affect the resuscitation practices of Advanced Paramedics in life-threatening situations. It has significant implications for medical education, professional practice and clinician-patient interactions. This legislation and similar planned legislation may have implications for other EU jurisdictions.
The advance directive (AD) is an important resource in oncology and all areas of medicine directly involved in the care of palliative patients. It provides people with the right to have their living wills honoured when they cannot respond by themselves. Despite their importance, ADs are still underused in most countries due to multiple factors. The objective of this review is to better categorise the barriers and difficulties that could impair the composition and implementation of ADs, allowing direct efforts against these obstacles. After the literature review, we believe that there would be five steps in the trajectory of an AD (discussion, composition, registration, access and implementation) and that all those steps can be affected by factors involving the health systems and professionals, the patient themselves and relatives or caregivers.