Advance Care Planning, of which Advance directive is only a part, is a process of planning for future medical care under circumstances of impaired decisional capacity. Advance care planning involves a structured discussion between patient and ideally their primary care physician to explore the goals of care in the context of current and hypothetical illness states, discusses treatment options in the context of these goals of care and finally articulates and docu- ments treatment and (...) care preferences of the patient.1 Advance care planning should be a routine part of preventive health care in order to avoid unneces- sary extra ordinary measures against a person’s wishes and to reserve resources which are wasted in futile care. Instead advance care planning is either non-existent or severely under-utilized in primary care practice in Pakistan. The author explores the factors that prevent Pakistani physicians’ from incorporating advance care planning into practice. In addition to this, various steps in terms of the principles, policies and procedures are discussed which could help physicians and institutions navigate the advance care planning process. (shrink)

As the aging population, including frail older people, continues to grow in Mainland China, quality of life and end-of-life care for frail older people has attracted much attention. Advance care planning is an effective way to improve end-of-life care for people with advanced diseases, and it is widely used in developed countries; however, it is a new concept in Mainland China. The effects of advance care planning and its acceptability in Mainland China are uncertain because of (...) its culture-sensitive characteristics. The objective of this article is to discuss the serious social issue of caring for frail older people and illustrate the possibility of implementing advance care planning in nursing homes in Mainland China through a review of relevant literature, which will focus on legislation, healthcare system engagement, public engagement, and cultural issues. Recommendations to promote and implement advance care planning include choosing nursing homes as a proper setting, establishing an ethical climate, and enhancing public awareness. (shrink)

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated (...) with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (shrink)

In an earlier edition of CambridgeQuarterly, in the section (CQ Vol 9, No 4), Larry Gottlieb sought advice on ethics committee assembly and policy implementation for a community mental health center. One concern mentioned is that staff members frequently encounter ethical issuesregarding the care of clients whose decisionmaking abilities are impaired by chronic mental illness and/or substance abuse. My response offers a suggestion for policy development and implementation, which may be integrated into guiding staff members of community mental health (...) centers toward a model of care planning that is centered on clients' experiences of their treatments and on relationship-building among clients, community members, and mental health professionals. (shrink)

Zusammenfassung Hintergrund Advance Care Planning (ACP) wird auch in Deutschland zunehmend praktiziert. Aus klinisch-ethischer Perspektive bietet ACP eine Möglichkeit, Vorausverfügungen zu konkretisieren und auf diese Weise die Entscheidungsfindung bei fehlender Selbstbestimmungsfähigkeit von Patient:innen zu unterstützen. Während es für Gesprächsangebote im Sinne des ACP in Pflegeeinrichtungen und Einrichtungen der Eingliederungshilfe seit 2015 Finanzierungsmöglichkeiten gibt und erste Studien zu Angeboten veröffentlich wurden, fehlt es in Deutschland bisher an publizierten Evaluationsstudien zu ACP-Angeboten im Krankenhaus. Intervention und Methoden Im vorliegenden Beitrag erfolgt die (...) strukturierte Darstellung von ACP als ein Element des klinisch-ethischen Unterstützungsangebotes am Universitätsklinikum Halle (Saale) (UKH). Es erfolgte eine quantitative Inhaltsanalyse der schriftlichen Dokumentation von durchgeführten ACP-Gesprächsprozessen für den Zeitraum der Pilotphase von 01/2020 bis 08/2021 (20 Monate). Ergebnisse Im Zeitraum wurden 93 ACP-Gespräche angefragt. Mit 79 Patient:innen konnten 110 Gespräche geführt werden. 46 % der Anfragen kamen von Palliative Care betreuten Patient:innen. Im Durchschnitt dauerten die Beratungen 45 min. Der Gesprächsprozess zur Erstellung einer Patientenverfügung benötigte durchschnittlich 122 min und 2,5 Gespräche. Bei 23 % der Patient:innen endete der ACP-Prozess nach dem Erstgespräch. Die Inhalte der ACP-Prozesse tangierten verschiedene Bereiche anderer Professionen im Krankenhaus, insbesondere die Entscheidungsfindung über aktuelle Diagnostik und Therapie zwischen Ärzt:innen und Patient:innen. Diskussion Die Einführung eines ACP-Angebotes im Krankenhaus zeigt neben einer Vielzahl an Chancen auch Herausforderungen auf, welche es im gemeinsamen Diskurs zu bewältigen gilt. Bei der Einbettung eines ACP-Angebots im Krankenhaus müssen die Besonderheiten der Klinik und insbesondere die Abgrenzung von ACP zu anderen Arbeitsfeldern der Ethikberatung, wie beispielsweise die Ethikfallberatung, bedacht werden. (shrink)

The conventional wisdom about advance care planning holds that the normative force of my prior wishes is simply that they are mine. It is their connection to me that matters. This paper challenges conventional thinking. I propose that the normative force of prior wishes does not depend exclusively on personal identity. Instead, it sometimes depends on a special relationship that exists between a prior, capacitated person and a now incapacitated person. I consider what normative guidance governs persons who stand (...) in a special relationship, and contrast these with the standard model of respect for autonomy. My conclusion is that advance care planning for individuals who have lost decision-making capacity should incorporate the virtues of prudence and integrity, even when one and the same person ceases to exist, and respect for personal autonomy is no longer relevant. (shrink)

Background: Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures. Aim: To explore the view of people in the early stage of dementia on planning for future care. Research design: The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven. Participants and research context: Dementia nurses assisted in the recruiting of (...) people with dementia for participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study. Ethical considerations: People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information. Findings: The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now. Discussion: High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group. Conclusion: The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

Background A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. Objectives To examine to what extent engagement in advance care planning practices (e.g. conversations, advance directives), knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. Design Survey study. Participants/setting The study involved a (...) purposive sample of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff (e.g. social workers, physical therapists) completed a survey. Ethical considerations The study was approved by the University Hospital of Brussels (B.U.N. 143201834759), as part of a cluster randomized controlled trial (clinicaltrials.gov NCT03521206). Results One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated (67% response rate). After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations (odds ratio 4; 95% confidence interval 1.73–9.82; p < 0.001) and documented advance care planning (odds ratio 2.67; 95% confidence interval 1.29–5.56; p < 0.001); differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses (estimated mean difference 0.13 (score range 0–1); 95% confidence interval 0.08–0.17; p < 0.001) and allied staff (estimated mean difference 0.07; 95% confidence interval 0.03–0.12; p < 0.001) scoring higher than care assistants. We found no significant differences regarding self-efficacy. Discussion While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. Conclusions Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage. (shrink)

Advance care planning (ACP) is considered a pivotal aid in the decision‐making process, especially for many people living with dementia, who inevitably will lose the capacity to make decisions at the end of life. In Italy, ACP has been recently regulated by law 219/2017, leading to the investigation of how physicians deal with ACP in dementia. In order to comprehend the perception of physicians who provide care for patients with dementia regarding ACP and to describe their difficulties and (...) needs, this study presents the results of a qualitative research study performed within a local health authority in northern Italy. Data were collected by semi‐structured interviews with 11 physicians dealing with patients with dementia and were analysed using interpretative phenomenological analysis. Four superordinate themes were identified, describing both the difficulties and challenges perceived by physicians in performing shared ACP in their daily activities. This study demonstrates that physicians experience troubles synchronizing the time of shared ACP with the more rapid development of dementia. Results also suggest that further training about communication on ACP is urgently required to ease the implementation of shared ACP. A broader involvement of institutions and other professionals is also important in spreading ACP among healthcare institutions. (shrink)

This article examines care plan meetings between professionals and clients held in a mental health supported housing unit. The article asks what is discussed about the recording of the plan and how it is discussed in the meetings. The study focuses on intertextual institutional interaction. The methodical tools used are genre and the genre chain. As a result of the analysis, we gain information on how the plan form, as a product of joint discussion through the meeting interaction, becomes (...) the basis of the care plan. In addition, the article highlights at which stages and for what purposes the care plan is discussed, and how earlier texts and discussions about the client’s situation serve as resources for making the plan. Plan forms have a significant role in directing the meeting conversation, the transferring of the information and producing and maintaining the care plan discourse. (shrink)

Exploring the dynamics of power: A Foucauldian analysis of care planning in learning disabilities services This paper draws upon a study completed in 2000 that focused upon health and welfare provision for people with learning disabilities in one English county. This study drew upon the theoretical insights of Michel Foucault to provide an analysis of the micro politics of care planning. This involved the analysis of text from two sources: the academic literature and interview material gained from a (...) number of professionals working in health and welfare services for people with learning disabilities. Drawing upon this research material, the first part of this paper briefly explores the relationship between policy, professional practice and the people who are the subjects of that practice. The discussion then moves on to consider Foucault's five methodological precautions and the way power produces a localised web of activity that identifies specific targets for management. In this process power draws into the web a range of informal and formal practices that initially lie outside of the web. The discourse produced through the activity surrounding care planning provides the evidence of this flow of power. This discourse then takes on the status of science (truth), which reproduces this activity. (shrink)

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. (...) Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions. (shrink)

McGovern, Kevin On 12 November 2008, the Caroline Chisholm Centre for Health Ethics ran a conference on Advance Care Planning. This is the Director's talk from that conference.

McGovern, Kevin This is an edited record of the presentation given by Revd Kevin McGovern, Director of the Caroline Chisholm Centre for Health Ethics, at the Centre's conference on palliative care on 3 October 2013. It explores the processes, challenges and benefits of Advance Care Planning. It also argues that Advance Care Planning will change the provision of health care significantly.

Patients with end-stage renal disease experience significant mortality and morbidity, including cognitive decline. Advance care planning has been emphasized as a responsibility and priority of physicians caring for patients with chronic kidney disease in order to align with patient values before decision-making capacity is lost and to avoid suffering. This emphasis has proven ineffective, as illustrated in the case of a patient treated in our hospital. Is this ineffectiveness a consequence of failure in the courtroom or the clinic? Through (...) our own experience we affirm what has been written before: that legal precedent favors intensive treatment in virtually all cases without ‘clear and convincing evidence’ of a patient’s previously declared wishes to the contrary. Equally clear is that more than 20 years of support in the clinical literature suggesting advance care planning early in the course of disease can address challenges in the legal system for those lacking capacity. However, many physicians fail t... (shrink)

In the fast-paced world of clinical medicine, recognizing and acknowledging differences in worldviews is often overlooked. When dealing with the delicate issues broached in advance care planning, such oversights can lead to deep rifts within the health care provider-patient relationship. By providing guidance to those engaged in such endeavors and setting advance care planning in a global context, health care practitioners will be better able to care for their patients and achieve the noble goal of (...) advance care planning_giving volume to the voice of the patient in the last chapter of her life. (shrink)

The ageing population is increasing worldwide with an increase in chronic disorders. At the same time, person‐centred care has become a policy within both health and social care. To facilitate coordination and collaboration and integrate the older adult's perspective in the decision‐making process the collaborative care planning process with the development of a written care plan can be used. In this study, the result of an interpreted analysis of four empirical studies of the collaborative care (...) planning as a person‐centred practice will be discussed and reflected on. A framework based on the French philosopher Paul Ricoeur's little ethics was used in the synthesis of the studies. The findings revealed two common threads: personhood and power asymmetry. Both challenges in achieving a person‐centred collaborative care planning. Ricoeur's dialogical thinking and description of a person served as an underpinning in discussing and reflecting upon the findings of the interpreted synthesis. Collaborative care planning is a complex process. However, Ricoeur's philosophy contributed to a greater understanding of the collaborative care planning as a person‐centred practice and accentuated that ethics, human values, and the older adults and care partners perspectives need to be given the same importance and considerations as the medical and social sciences perspectives for the collaborative care planning process to truly become person‐centred. (shrink)

In Japan, most residents with Hansen’s disease live in dedicated sanatoria because of an established quarantine policy, even after being cured of the primary disease. They suffer from secondary diseases and are advancing in age, and advance care planning is increasingly crucial for them to live their lives with dignity in a sanatorium. In this study, we have three aims: to understand how to promote communication about their wishes for medical treatment, care, and recuperation; to identify required assistance; (...) and to explore how to promote ACP in a sanatorium. This study is a qualitative research conducted through semi-structured interviews. The study included 57 ex-Hansen’s disease patients and 66 staff from 10 facilities. Ex-Hansen’s disease patients were expected to consider ACP, but this was in the context of uncertainty about whether a sanatorium would close and whether there would be doctors to manage their needs. They reported being confused when staff rushed to confirm their advance directives, feeling that they were not provided with enough information before being approached. Barriers to promoting ACP were found to be insufficient of team-based care and information sharing, ex-Hansen’s disease patients’ weak interest in their end of life, and their conservative thoughts. We believe that ACP can be achieved by listening to the wishes of recovered patients through regular home care visits by nurses and everyday support by care workers. Furthermore, multidisciplinary coordination is urgently needed for promoting ACP. (shrink)

Volume 20, Issue 8, August 2020, Page 93-95.

Although advance care planning can lead to more patient-centered care, the communication around it can be challenging in acute care hospitals, where saving a life or shortening hospitalization is important priorities. Our qualitative study in an acute care hospital in Japan revealed when specifically physicians and nurses start communication to facilitate ACP. Seven physicians and 19 nurses responded to an interview request, explaining when ACP communication was initiated with 32 patients aged 65 or older. Our qualitative (...) approach employed descriptive analysis to identify major themes, which included “initiation by patients” and “initiation by healthcare professionals.” In the latter case, seven specific triggers were identified: when the patients’ medical condition changed in terms of symptom relief, when the patients’ medical condition changed in terms of prognostic prediction, when serious events occurred, when a choice of treatment was presented, when the location for end-of-life care was chosen, when the patients’ cognitive function deteriorated, and when serious events settled down. Within this group of healthcare professionals, physicians were more focused on changes in their patients’ medical condition, whereas nurses focused more on their patients’ desire for a long-term perspective. Nurses encouraged patients to consider ACP themselves, which developed into an approach to respect patients’ autonomy. In acute care hospitals, it appeared to be desirable to have an early discussion where patients could understand the significance ACP, which would matter even after their discharge from the hospital. (shrink)

Advance care planning (ACP) is promoted as beneficial practice internationally. This article critically examines different ways of understanding and measuring success in ACP. It has been 50 years since Luis Kutner first published his original idea of the Living Will, which was thought to be a contract between health carers and patients to provide for instructions about treatment choices in cases of mental incapacity. Its purpose was to extend a patient's right to autonomy and protect health carers from charges (...) of wrong-doing. Yet, it can be doubtful whether different types of ACP achieve these goals rather than aiming at secondary gains. My discussion suggests that the current promotion of ACP is not always engaging critically with the original ACP intentions and may even pursue notions of success that may run contrary to respecting autonomy. The risk of this may especially be the case when high participation rates are taken as indicators of success for institutional ACP programs. I further suggest that Kutner's two original aims of protecting patient autonomy and preventing charges of wrong-doing are near impossible to achieve in conjunction, because their simultaneous pursuit fails to acknowledge that patients and carers have opposing needs for reassurance about possible judgment errors. I conclude that the most realistic idea of success of modern ACP is an acknowledgement of the importance of ongoing dialogue about what constitutes appropriate care and a diversity of aims rather than any kind of advance, contractual insurance in the face of controversy. (shrink)

ZusammenfassungPatientenverfügungen für spätere Zustände schwerer kognitiver Beeinträchtigungen, wie sie für Spätphasen der Demenz typisch sind, stoßen auf weitergehende Vorbehalte als Patientenverfügungen für anderweitige Zustände eingeschränkter Einwilligungsfähigkeit. Einer der Gründe dafür scheinen die ethischen und psychologischen Konflikte im Gefolge von Patientenverfügungen zu sein, mit denen Patienten in gesunden Tagen für bestimmte Phasen der Erkrankung die Nichtbehandlung interkurrenter Erkrankungen oder die Unterlassung künstlicher Ernährung verfügt haben, während sich unter den in der Patientenverfügung gemeinten Bedingungen keine Anzeichen finden, dass sie unter ihrer Situation (...) leiden. Der Beitrag argumentiert für diese Situation für eine „gemischte“ ethische Strategie: Patientenverfügungen im rechtlichen Sinne sollten insbesondere dann, wenn sie im Rahmen eines Advance Care Planning erstellt sind, befolgt werden, um zu verhindern, dass den Vorausverfügenden das Vertrauen in die spätere Befolgung ihres Wunsches nach Abbruch oder Nichtaufnahme medizinischer Behandlungen genommen wird. Dagegen sollten darüber hinausgehende „Pflegeverfügungen“ ohne rechtlich verbindlichen Status nur in Fällen beachtet werden, in denen zwischen vorausverfügtem und „natürlichem“ Willen Konkordanz besteht. (shrink)

PurposeAdvance directives have been criticized for failing to help physicians make decisions consistent with patients’ wishes. This pilot study sought to determine if an interactive, computer-based decision aid that generates an advance directive can help physicians accurately translate patients’ wishes into treatment decisions.MethodsWe recruited 19 patient-participants who had each previously created an advance directive using a computer-based decision aid, and 14 physicians who had no prior knowledge of the patient-participants. For each advance directive, three physicians were randomly assigned to review (...) the advance directive and make five to six treatment decisions for each of six (potentially) end-of-life clinical scenarios.From the three individual physicians’ responses, a “consensus physician response” was generated for each treatment decision (total decisions = 32). This consensus response was shared with the patient whose advance directive had been reviewed, and she/he was then asked to indicate how well the physician translated his/her wishes into clinical decisions.ResultsPatient-participants agreed with the consensus physician responses 84 percent (508/608) of the time, including 82 percent agreement on whether to provide mechanical ventilation, and 75 percent on decisions about cardiopulmonary resuscitation (CPR).Across the six vignettes, patient-participants’ rating of how well physicians translated their advance directive into medical decisions was 8.4 (range = 6.5-10, where 1 = extremely poorly, and 10 = extremely well). Physicians’ overall rating of their confidence at accurately translating patients’ wishes into clinical decisions was 7.8 (range = 6.1-9.3, 1 = not at all confident, 10 = extremely confident).ConclusionFor simulated cases, a computer-based decision aid for advance care planning can help physicians more confidently make end-of-life decisions that patients will endorse. (shrink)

Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected “choices” about specific interventions which either revolve around broad themes or whether or not to utilize particular interventions, both of which about most laypersons know little and, more (...) importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility—creating a burden for which most patients are unprepared—and hence reducing healthcare providers’ responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients and physicians for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient’s values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue—or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity. (shrink)

Simonet, Emanuel Nicolas Cortes Advance care planning is a significant and important process of end-of-life care. It provides the opportunity for persons to express their medical treatment preferences prior to losing the capacity to decide for themselves. It also allows for the appointment of substituted decision maker to make medical decisions for persons who have lost capacity. Whilst advance care planning can be beneficial when it is used effectively, the legislative framework surrounding advance care planning is (...) complex and confusing. This brief article will summarise advance care planning, its current legislative framework in Victoria and how proposed recommendations offered by the Inquiry into end of life choices may simplify advance care planning. (shrink)

In January 2016, Medicare began reimbursing clinicians for time spent engaging in advance care planning with their patients or patients’ surrogates. Such planning involves discussions of the care an individual would want to receive should he or she one day lose the capacity to make health care decisions or have conversations with a surrogate about, for example, end‐of‐life wishes. Clinicians can be reimbursed for face‐to‐face explanation and discussion of care and advance directives and for the completion (...) of advance care planning forms. Although it seems that political barriers to reimbursement for such planning have largely faded, the Medicare policy's impact on provider billing practices appears to be limited, suggesting other barriers to clinician engagement in advance care planning. Additionally, the effects of this policy on patient behavior and the clinician‐patient relationship are not yet known. (shrink)

BackgroundAs part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family (...) members’ participation and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning.MethodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.ResultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.ConclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences. (shrink)

The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values (...) of social justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. (shrink)

Unrepresented patients—people without capacity to make medical decisions who also lack a surrogate decision‐maker—form a large and vulnerable population within the United States health care system. The burden of unrepresentedness has rightly prompted widespread calls for more and better advance care planning, in which still‐healthy patients are encouraged to designate a surrogate decision‐maker and thus avoid the risk of becoming unrepresented. However, we observe that some patients, even with available social contacts and access to adequate advance care (...) planning services, simply decline to name a surrogate decision‐maker. We propose a novel concept of “informed refusal of representation” (“IRR”) to characterize the position held by some such patients, who are often overlooked in prior work on unrepresentedness. We then discuss physicians’ ethical obligations in the face of such a refusal and avenues by which physicians can support patients without surrogates in receiving goal‐concordant care. (shrink)

The purpose of advance care planning is to allow an individual to maintain autonomy in end-of-life medical decision-making even when incapacitated by disease or terminal illness. The intersection of EOL medical technology, ethics of EOL care, and state and federal law has driven the development of the legal framework for advance directives. However, from an ethical perspective the current legal framework is inadequate to make ADs an effective EOL planning tool. One response to this flawed AD process has (...) been the development of Physician Orders for Life Sustaining Treatment. POLST has been described as a paradigm shift to address the inadequacies of ADs. However, POLST has failed to bridge the gap between patients and their autonomous, preferred EOL care decisions. Analysis of ADs and POLST reveals that future policy should focus on a communications-based approach to ACP that emphasizes ongoing interactions between healthcare providers and patients to optimize EOL medical care to the individual patient. (shrink)

Florida is currently collecting data on the “costs of uncompensated care for aliens who are not lawfully present in the U.S.” (Statutes of Florida, 2023). The Florida data collection law, enacted in 2023, is part of aggressive anti-immigrant legislation. Hospitals accepting Medicaid must inquire about patients’ immigration status and submit de-identified reports. In August 2024, the Governor of Texas signed an Executive Order comparable to the Florida statute. Although presented as a data-collection measure, the legal requirements have far-reaching consequences. (...) The potential adverse impacts on immigrants’ health pose bioethical concerns. Immigration-related inquiries create barriers to healthcare access and advance care planning, exacerbating healthcare disparities and presenting ethical concerns. This article examines the effects on immigrants and the resulting ethical challenges, including respect for persons, beneficence, non-maleficence, and justice. The article proposes recommendations for mitigating these challenges, including community outreach, patient education, policy development, in-service education, and advocacy. While the legal requirements apply specifically to Florida and Texas, the ethical issues have nationwide relevance. (shrink)

Background: A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population. Research aim: To identify challenges in implementing the ‘Let Me Decide’ advance care planning programme in long-term-care. Research design: This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families. Participants and research context: long-term-care residents in two nursing homes (...) and one community hospital. Ethical considerations: The local research ethics committee granted ethical approval. Findings: Following implementation, over 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training. Discussion: The challenges encountered were largely concerned with preserving resident’s autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources. Conclusions: Although it may be too late for many long-term-care residents to complete their own advance care directive, the ‘ Let Me Decide’ programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of mind among all parties involved became apparent in practice. (shrink)

Advance care planning refers to the process of determining how one wants to be cared for in the event that one is no longer competent to make one's own medical decisions. Some have argued that advance care plans often fail to be normatively binding on caretakers because those plans do not reflect the interests of patients once they enter an incompetent state. In this article, we argue that when the core medical ethical principles of respect for (...) patient autonomy, honest and adequate disclosure of information, institutional transparency, and concern for patient welfare are upheld, a policy that would allow for the disregard of advance care plans is self-defeating. This is because when the four principles are upheld, a patient's willingness to undergo treatment depends critically on the willingness of her caretakers to honor the wishes she has outlined in her advance care plan. A patient who fears that her caretakers will not honor her wishes may choose to avoid medical care so as to limit the influence of her caretakers in the future, which may lead to worse medical outcomes than if she had undergone care. In order to avoid worse medical outcomes and uphold the four core principles, caregivers who are concerned about the future welfare of their patients should focus on improving advance care planning and commit to honoring their patients’ advance care plans. (shrink)

This issue’s “Legal Briefing” column covers the recent decision by the Centers for Medicare and Medicaid Services (CMS) to expand Medicare coverage of advance care planning, beginning 1 January 2016. Since 2009, most “Legal Briefings” in this journal have covered a wide gamut of judicial, legislative, and regulatory developments concerning a particular topic in clinical ethics. In contrast, this “Legal Briefing” is more narrowly focused on one single legal development. This concentration on Medicare coverage of advance care planning (...) seems warranted. Advance care planning is a frequent subject of articles in JCE. After all, it has long been seen as an important, albeit only partial, solution to a significant range of big problems in clinical ethics. These problems range from medical futility disputes to decision making for incapacitated patients who have no available legally authorized surrogate. Consequently, expanded Medicare coverage of advance care planning is a potentially seismic development. It may materially reduce both the frequency and severity of key problems in clinical ethics. Since the sociological, medical, and ethical literature on advance care planning is voluminous, I will not even summarize it here. Instead, I focus on Medicare coverage. I proceed, chronologically, in six stages: 1. Prior Medicare Coverage of Advance Care Planning 2. Proposed Expanded Medicare Coverage in 2015 3. Proposed Expanded Medicare Coverage in 2016 The Final Rule Expanding Medicare Coverage in 2016 4. Remaining Issues for CMS to Address in 2017 5. Pending Federal Legislation. (shrink)

An increasing recognition over the past five decades of the importance of patients’ autonomy and the right to be able to choose to limit medical treatment at the end of life has led to the development of a number of documents related to advance care planning, including the advance directive, medical power of attorney, and portable orders for life-sustaining treatment (POLST). While these documents are important aspects of advance care planning, without having goals-ofcare conversations, a specific plan, and (...) necessary supports to achieve these goals, the documents alone offer a false promise. Healthcare professionals must be trained on how to have indepth goals-of-care conversations with patients and their families, and effectively document the decisions. Advance care planning needs to be viewed as a process that must continue as the patient’s health status, social support system, and living environment change. Designating a healthcare representative who participates in goals-of-care conversations and can work with the healthcare team to make “just in time” decisions about care reduces the burden and stress on friends and family. In this article we discuss the strengths and limitations of advance directives, medical power of attorney forms, and POLST forms; propose concrete changes to optimize the effectiveness of each; and present a comprehensive approach to advance care planning that we hope will improve care for those nearing the end of life, and ensure that their wishes and goals to have or to limit treatment are more consistently honored. (shrink)

Our objective was to better understand the values and ethical dilemmas surrounding advance care planning through stories told by registered nurses and licensed social workers, who were employed as care managers within Area Agencies on Aging. We conducted eight focus groups in which care managers were invited to tell their stories and answer open-ended questions focusing on their interactions with consumers receiving home-based long-term care. Using narrative analysis to understand how our participants thought through particular experiences (...) and what they valued, we identified seven themes representative of their work with consumers and families: humility, respect, responsibilities, boundaries, empowerment, courage, and veracity. (shrink)

Australia is committed to looking at ways to modernize its healthcare delivery further by integrating digital health. Advance Care Planning (ACP) is an area of healthcare that would likely benefit from further digitalization. However, while greater integration of technology in the delivery of ACP could help improve practices and lead to increased uptake, the extent to which this is achievable will be influenced, in part, by current approaches to ACP regulation. This article canvasses recent developments and trends in Australian (...) law relevant to ACP and reflects on how these developments may impact the further digitalization of ACP. (shrink)

Advance care planning allows patients to articulate preferences for their medical treatment, lifestyle, and surrogate decision-makers in order to anticipate and mitigate their potential loss of decision-making capacity. Written advance directives are often emphasized in this regard. While these directives contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of (...) medical options, and cultural disparities. Given these issues, it is vital to increase the use of patient and healthcare provider conversations as an advance care planning tool and to increase integration of such discourse into advance care planning policy as adjuncts and complements to written advance directives. This paper reviews current legislation about written advance directives and dissects how documentation of spoken interactions might be integrated and considered. We discuss specific institutional policy changes required to facilitate implementation. Finally, we explore the ethical issues surrounding the increased usage and recognition of clinician–patient conversations in advance care planning. (shrink)