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 (...) class='Hi'>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)

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)

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)

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)

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)

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

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)

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)

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)

We examined the management of completed advance directives including why participants completed a document, what procedures and values they chose, with whom they held end-of-life conversations, and where they stored their document. Participants elected to complete a SurveyMonkey survey that was made available to individuals who wrote an advance directive through Texas-LivingWill.org; 491 individuals elected to fill out the survey, aged 19 to 94 years. The survey asked multiple questions about why participants completed an advance directive, where (...) they would store it, and with whom they had conversations about their end-oflife wishes. A list of procedures and values allowed participants to indicate what they refused or requested in their advance directive. Advance directives are most often completed to allow patients to prepare and control the healthcare they wish to receive when dying. One-half to two-thirds of individuals refuse common end-of-life medical procedures, and the rest request the procedures. We found a correlation between the choice to refuse or request a procedure and the age of the participant. Participants reported that their end-of-life conversations most often occurred with their spouse. Respondents often reported that their advance directive was stored with their physician and power of attorney for healthcare, conversations with those individuals rarely happened. Advance directives document patients’ requests for and refusals of end-of-life care. Physicians and surrogates need to be better educated so that the documents are part of a meaningful conversation with the patient. Because patients’ choices change over their lifespan, these documents need to be revisited regularly and not completed as a onetime event. (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)

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)

Background Advance care planning (ACP) is a process in which adults engage in an ongoing dialogue about future medical treatment and care. Though ACP is recommended to improve the quality of end-of-life care, the details of the dialogue experience in ACP are unknown. Objective To explore participants’ experiences of dialogue in an ACP educational program that encouraged them to discuss the value of a way of life. Research design This qualitative descriptive study used the focus (...) group interview method. Data were analyzed using qualitative content analysis. Participants and research context A dialogue-based ACP educational program was conducted in four regions in Japan for local citizens to discuss the value of their way of life. A total of 66 individuals (mean age = 55.5 ± 17.2 years; 50 women and 16 men) participated in focus group interviews. Ethical considerations This study was approved by the Ethical Review Committee of Tokyo Women’s Medical University (no. 4723) and Kyoto University (no. R2099). Findings Five main themes were extracted: discussing one’s thoughts with others in a considerate manner, reflecting on one’s way of life through others, feeling a sense of connection with others through storytelling, realizing the difficulties of talking about “what if” topics, and turning one’s eyes toward the future through the dialogue. These themes were interrelated and illustrated the complexity of the experience of discussing values. Conclusions The results suggest that dialogue in ACP is useful in clarifying values. They also indicated the need for dealing with the ethical challenges of discussing value and the importance of caring for the interlocutor to have a safe dialogue. In the ACP process, safety in dialogue may improve readiness in ACP, and health practitioners who support ACP need to address the ethical challenges entailing dialogue about values. (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 (...) class='Hi'>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)

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)

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use (...) of advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments. (shrink)

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use (...) of advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments. (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)

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)

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)

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, 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 completed a survey. Ethical considerations The study was approved by the University Hospital of Brussels, as part of a cluster randomized controlled trial. Results One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated. After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations and documented advance care planning ; differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses ; 95% confidence interval 0.08–0.17; p < 0.001) and allied staff 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)

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)

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)

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)

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.

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.

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)

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)

Volume 20, Issue 7, July 2020, Page 202-204.

BackgroundEverybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer’s dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, (...) and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is ‘Respecting Choices’®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study’s aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD.MethodWe intend to recruit at leastN = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed.DiscussionThe results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD.Trial RegistrationDRKS, DRKS00026691, registered 15th of October 2021,https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691. (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)

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)

Background and AimsEnd-of-life discussions can be difficult for seriously ill adolescents and young adults. Researchers aimed to determine whether completing Voicing My CHOiCES —a research-informed advance care planning guide—increased communication with family, friends, or health care providers, and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, (...) conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family and friends reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience, difficult experience, appreciated a guide to facilitate discussion, provided relief, and created worry/anxiety. Only 1 HCP noted a treatment change. Family, friends, and HCP did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult. (shrink)

Background: Frailty is a natural consequence of the aging process. With the increasing aging population in Mainland China, the quality of life and end-of-life care for frail older people need to be taken into consideration. Advance Care Planning has also been used worldwide in long-term facilities, hospitals and communities to improve the quality of end-of-life care, increase patient and family satisfaction, and reduce healthcare costs and hospital admissions in Western countries. However, it has not been (...) practiced in China. Research objective: This study aimed to evaluate the effectiveness of a modified Advance Care Planning intervention in certainty of end-of-life care, preferences for end-of-life care, quality of life concerns, and healthcare utilization among frail older people. Research design: This study used a quasi-experimental design, with a single-blind, control group, pretest and repeated posttest approach. Participants and research context: A convenience sample of 74 participates met the eligibility criteria in each nursing home. A total of 148 frail older people were recruited in two nursing homes in Zhejiang Province, China. Ethical considerations: The study received ethical approval from the Clinical Research Ethics Committee, the Faculty of Medicine, and The Chinese University of Hong Kong, CREC Ref. No: 2016.059. Findings: The results indicated the Advance Care Planning programme was effective at increasing autonomy in decision making on end-of-life care issues, decreasing decision-making conflicts over end-of-life care issues, and increasing their expression about end-of-life care. Discussion: This study promoted the participants’ autonomy and broke through the inherent custom of avoiding talking about death in China. Conclusion: The modified Advance Care Planning intervention is effective and recommended to support the frail older people in their end-of-life care decision in Chinese society. (shrink)

Advance care planning is a voluntary process whereby individual preferences, values and beliefs are used to aid a person in planning for end-of-life care. Currently, there is no local instrument to assess an individual’s awareness and attitude towards advance care planning. This study aimed to develop an Advance Care Planning Questionnaire and to determine its validity and reliability among older people in Malaysia. The Advance Care Planning (...) Questionnaire was developed based on literature review. Face and content validity was verified by an expert panel, and piloted among 15 participants. Our study was conducted from October 2013 to February 2014, at an urban primary care clinic in Malaysia. Included were those aged >50 years, who could understand English. A retest was conducted 2 weeks after the first administration. Participants from the pilot study did not encounter any problems in answering the Advance Care Planning Questionnaire. Hence, no further modifications were made. Flesch reading ease was 71. The final version of the Advance Care Planning Questionnaire consists of 66 items: 30 items were measured on a nominal scale, whilst 36 items were measured on a Likert-like scale; of which we were only able to validate 22 items, as the remaining 14 items were descriptive in nature. A total of 245 eligible participants were approached; of which 230 agreed to participate. Factor analysis on the 22 items measured on a Likert-scale revealed four domains: “feelings regarding advance care planning”, “justifications for advance care planning”, “justifications for not having advance care planning: fate and religion”, and “justifications for not having advance care planning: avoid thinking about death”. The Cronbach’s alpha values for items each domain ranged from 0.637–0.915. In test-retest, kappa values ranged from 0.738–0.947. The final Advance Care Planning Questionnaire consisted of 63 items and 4 domains. It was found to be a valid and reliable instrument to assess the awareness and attitude of older people in Malaysia towards advance care planning. (shrink)

Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential (...) benefits and limitations. Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common. (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)

Zusammenfassung Patientinnen und Patienten steht das Recht auf Behandlung nach ihren eigenen Vorstellungen auch dann zu, wenn sie aktuell keinen eigenen Willen bilden können. Advance Care Planning (ACP), als ein spezielles Verfahren der gesundheitlichen Vorsorgeplanung, zielt darauf ab, dieses Dilemma durch eine Willensbestimmung im Voraus aufzulösen. Besonders ausgebildete Gesprächsbegleiter*innen bieten an, bei der Ermittlung, Formulierung und Dokumentation eines solchen, die individuelle gesundheitliche Situation berücksichtigenden Willens zu helfen. Das Umfeld der Betroffenen soll in den Gesprächsprozess einbezogen und es (...) soll organisatorisch gesichert werden, dass deren Willensbestimmung den aktuell Behandelnden im Bedarfsfall faktisch zugänglich ist. Das Verfahren kombiniert also ein kommunikatives mit einem institutionellen Element. Aus ethischer Sicht stellen sich dabei zwei wesentliche Herausforderungen. Erstens erfordert Gesprächsbegleitung mit einem so komplexen Ziel Kompetenzen und setzt bestimmte Haltungen voraus, wie sie für Professionen im strengen Sinne typisch sind. Daher wäre es wichtig, entsprechende professionelle Normen explizit zu machen, beispielsweise in Form eines Berufs-Kodex. Zweitens muss das Verfahren trotz seiner institutionellen Form für die Betroffenen freiwillig sein. Dies ist entscheidend für die Validität des Prozesses, aber auch für dessen Ergebnis. Denn wenn Letzteres rechtlich bindend sein soll, müssen die Betroffenen freiverantwortlich, d. h. ohne sog. Willensmängel handeln können. Es ist deshalb ethische Pflicht, beim Eintritt in und im Verlauf der Beratung auf die Freiwilligkeit zu achten. (shrink)