Proxy Decision Research Articles

Physician-facilitated designation of proxy decision-makers: family physician perceptions.

BackgroundAmong the challenges encountered during the care of patients at the end-of-life (EOL), eliciting preferences of patients with whom there is no ability to communicate is common and stressful for all those concerned and charged with patient care. Legal facilities available include patient delegation of proxy decision-makers (PDM) prior to communication incapacity. We sought to estimate family physician awareness and attitude with regard to these aspects of patient care.MethodsA telephone survey of family physicians in the Jerusalem, Israel, district using a standard questionnaire.Results74 family physicians responded to the survey. The response rate was 42 % and the cooperation rate was 66 %. Most of the respondents, (64 %), reported knowing that the PDM delegation facility exists, though only 24 % claimed to have suggested to their patients that they consider this option. Approximately three-quarters, (78 %), treat patients with whom they discussed other aspects of severe disease, disability or EOL. None of the physicians working predominantly with religiously observant groups reported suggesting PDM delegation.ConclusionsThere is an apparent gap between family physician knowledge and their performance to empower the persistence of patient autonomy, should communication ability cease. System-wide interventions to increase EOL communication skills, starting at medical school and henceforth, are necessary in order to promote better EOL care and meaningful resource use.

Balancing digital information-sharing and patient privacy when engaging families in the intensive care unit.

Patients in intensive care units (ICUs) may lack decisional capacity and may depend on proxy decision makers (PDMs) to make medical decisions on their behalf. High-quality information-sharing with PDMs, including through such means as health information technology, could improve communication and decision making and could potentially minimize the psychological consequences of an ICU stay for both patients and their family members. However, alongside these anticipated benefits of information-sharing are risks of unwanted disclosure of sensitive information. Approaches to identifying the optimal balance between access to digital health information to facilitate engagement and protecting patient privacy are urgently needed. We identified eight themes that should be considered in balancing health information access and patient privacy: 1) potential benefits to patients from PDM data access; 2) potential harms to patients from such access; 3) the moral status of families within the patient-clinician relationship; 4) the scope of relevant information provided to PDMs; 5) issues around defining PDMs' authority; 6) methods for eliciting and documenting patient preferences about their family's information access; 7) the relevance of methods for ascertaining the identity of PDMs; and 8) the obligations of hospitals to prevent privacy breaches by PDMs. We conclude that PDMs should typically have access to health information from the current episode of care when the patient is decisionally impaired, unless the patient has previously expressed a clear preference that PDMs not have such access.

Preservation of Fertility Potential for Gender and Sex Diverse Individuals.

Gender and sex diverse individuals—transgender individuals and those with disorders of sex development (DSD)—both face medical treatments that may impair biological fertility potential. Young DSD patients also often have abnormal gonadal development. Fertility preservation for these populations has historically been poorly understood and rarely addressed. Future fertility should be discussed with gender and sex diverse individuals, particularly given recent advances in fertility preservation technologies and evolving views of fertility potential. Key ethical issues include parental proxy decision-making and uncertainty regarding prepubertal fertility preservation technologies. Many opportunities exist for advancing fertility-related care and research for transgender and DSD patients.

Expert and patient consensus on a dynamic model for shared decision-making in frail older patients

ObjectiveShared decision-making (SDM) is widely recommended as a way to support patients in making healthcare choices. Due to an ageing population, the number of older patients will increase. Existing models for SDM are not sufficient for this patient group, due to their multi-morbidity, the lack of guidelines and evidence applicable to the numerous combinations of diseases. The aim of this study was to gain consensus on a model for SDM in frail older patients with multiple morbidities. MethodsWe used a three-round Delphi study to reach consensus on a model for SDM in older patients with multiple morbidities. The expert panel consisted of 16 patients (round 1), and 59 professionals (rounds 1–3). In round 1, the SDM model was introduced, rounds 2 and 3 were used to validate the importance and feasibility of the SDM model. ResultsConsensus for the proposed SDM model as a whole was achieved for both importance (91% panel agreement) and feasibility (76% panel agreement). ConclusionsSDM in older patients with multiple morbidities is a dynamic process. It requires a continuous counselling dialogue between professional and patient or proxy decision maker. Practice implicationsThe developed model for SDM in clinical practice may help professionals to apply SDM in the complex situation of the care for older patients.

Medical Decision Making for Patients Without Proxies: The Effect of Personal Experience in the Deliberative Process

The number of admissions to hospitals of patients without a proxy decision maker is rising. Very often these patients need fairly immediate medical intervention for which informed consent--or informed refusal--is required. Many have recommended that there be a process in place to make these decisions, and that it include a variety of perspectives. People are particularly wary of relying solely on medical staff to make these decisions. The University Hospitals Case Medical Center recruits community members from its Ethics Committee to serve on a subcommittee, the Patients Without Proxies (PWP) Committee, which works with medical staff during the decision-making process for these patients. Generally, the community members go to the bedside to observe patients. This article looks at how those unused to observing hospitalized patients who are sick and/or dying are affected, comparing them to mock jurors in a research study who are exposed to graphic photographs related to a fabricated crime scene. Judgments made by the mock jurors are affected by viewing such images. The personal experience of witnessing unfamiliar and shocking scenes affects their subsequent judgments. While it may be difficult to tease out whether observing patients causes PWP members to be benefited or harmed, they are affected by what they see. If a variety of perspectives is desirable to reduce possible bias or error, this article argues that at least one community member should refrain from seeing the patient in order to add a different and valuable voice to the decision-making process. Members of the subcommittee base their judgments on the various kinds of information available. Sometimes the things they see, hear, or feel may affect them particularly deeply, and affect their judgments as well. In this article I explore the idea that something like this may be happening in a particular kind of clinical ethics case consultation.

Key stakeholder perceptions about consent to participate in acute illness research: a rapid, systematic review to inform epi/pandemic research preparedness.

BackgroundA rigorous research response is required to inform clinical and public health decision-making during an epi/pandemic. However, the ethical conduct of such research, which often involves critically ill patients, may be complicated by the diminished capacity to consent and an imperative to initiate trial therapies within short time frames. Alternative approaches to taking prospective informed consent may therefore be used. We aimed to rapidly review evidence on key stakeholder (patients, their proxy decision-makers, clinicians and regulators) views concerning the acceptability of various approaches for obtaining consent relevant to pandemic-related acute illness research.MethodsWe conducted a rapid evidence review, using the Internet, database and hand-searching for English language empirical publications from 1996 to 2014 on stakeholder opinions of consent models (prospective informed, third-party, deferred, or waived) used in acute illness research. We excluded research on consent to treatment, screening, or other such procedures, non-emergency research and secondary studies. Papers were categorised, and data summarised using narrative synthesis.ResultsWe screened 689 citations, reviewed 104 full-text articles and included 52. Just one paper related specifically to pandemic research. In other emergency research contexts potential research participants, clinicians and research staff found third-party, deferred, and waived consent to be acceptable as a means to feasibly conduct such research. Acceptability to potential participants was motivated by altruism, trust in the medical community, and perceived value in medical research and decreased as the perceived risks associated with participation increased. Discrepancies were observed in the acceptability of the concept and application or experience of alternative consent models. Patients accepted clinicians acting as proxy-decision makers, with preference for two decision makers as invasiveness of interventions increased. Research regulators were more cautious when approving studies conducted with alternative consent models; however, their views were generally under-represented.ConclusionsThird-party, deferred, and waived consent models are broadly acceptable to potential participants, clinicians and/or researchers for emergency research. Further consultation with key stakeholders, particularly with regulators, and studies focused specifically on epi/pandemic research, are required. We highlight gaps and recommendations to inform set-up and protocol development for pandemic research and institutional review board processes.PROSPERO protocol registration numberCRD42014014000Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-015-1110-6) contains supplementary material, which is available to authorized users.

Proxy decision about long-term gastrostomy tubes (PEG catheters) in patients with dementia in long-term nursing care: reducing decision uncertainty in health related taboo topics

Proxy decision about long-term gastrostomy tubes (PEG catheters) in patients with dementia in long-term nursing care: reducing decision uncertainty in health related taboo topics

Advance directives in mental health care: evidence, challenges and promise.

Psychiatric advance directives (PADs) are written documents or oral statements that allow adults with decision-making capacity to declare their treatment preferences and/or to designate proxy decision makers to act on their behalf should they be deemed incapable in the future of making informed choices on their own. In the U.S., the Patient Self-Determination Act (1) created momentum for recovery-oriented care, which has led to the enactment of mental health-related advance planning legislation in about two-thirds of the states (2,3). Internationally, increasing attention to such tools is found in the U.K., Ireland, Germany, Belgium, Canada, New Zealand, Australia and India.

Role of Advance Care Planning in Proxy Decision Making Among Individuals With Dementia and Their Family Caregivers.

Health care proxies make important end-of-life decisions for individuals with dementia. A cross-sectional survey was conducted to examine the role of advance care planning in proxy decision making for 141 individuals with cognitive impairment, Alzheimer's disease, or other types of dementia. Proxies who did not know the preferences of individuals with dementia for life support treatments reported greater understanding of their values. Proxies of individuals with dementia who did not want life support treatments anticipated receiving less support and were more uncertain in decision making. The greater knowledge proxies had about dementia trajectory, family support, and trust of physicians, the more informed, clearer, and less uncertain they were in decision making. In addition to advance care planning, multiple factors influence proxy decision making, which should be considered in developing interventions and future research to support informed decision making for individuals with dementia and their families.

Suicidal behavior and assisted suicide in dementia

Concerns about suicide risk in people with dementia have been increasing in recent years along with a discourse about rational suicide and assisted suicide. A systematic narrative literature review of suicidal behavior and assisted suicide in persons with dementia. Most studies that have examined the spectrum of suicidal ideation, attempted suicide and suicide in dementia have methodological limitations but the overall suicide risk does not appear to be increased. When suicidal behavior does occur, common themes include the presence of psychiatric comorbidity, mainly depression; occurrence early in the dementia course with preserved insight and capacity; and an increased risk in younger people. The emerging discourse on rational and assisted suicide has been spurred by early and pre-symptomatic diagnosis and poses a number of ethical challenges for clinicians including the role of proxy decision-makers. Although dementia might not confer a significant overall risk for suicidal behavior, clinicians still need to consider the potential for suicide in vulnerable individuals particularly early in the dementia course.

A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia.

Relatives of people with dementia report that proxy decision-making is difficult and distressing. We systematically reviewed the literature about barriers and facilitators to family carers of people with dementia making proxy decisions, and interventions used to facilitate their decision-making. We searched electronic databases and references of included papers up to February 2014. Two authors independently evaluated study quality using a checklist. We included the 30/104 papers from our search which fitted predetermined criteria and prioritized higher quality papers. Family carers report that proxy decision-making is challenging and can be distressing, especially when decisions are made against the wishes of the care recipient and support from healthcare professionals is lacking. Decision-specific manualized aids have been developed, and while results for those supporting decisions about respite and percutaneous endoscopic gastrostomy (PEG) feeding have shown promising results in pilot trials, no intervention has yet been shown to significantly reduce decisional conflict or carer burden, or increase knowledge in randomized controlled trials; a decision aid for advance care planning increased decisional conflict. We recommend development and testing of decision aids targeting the decisions carers report finding most distressing, including those around where people should live, accessing services, and end of life treatments. Being provided with information to make decisions which have not previously been considered may increase feelings of conflict, suggesting these aids should be carefully targeted.

Withdrawal of life-sustaining treatment: patient and proxy agreement: a secondary analysis of "contracts, covenants, and advance care planning".

Families of critically ill patients often make difficult decisions related to end-of-life (EOL) care including the withdrawal of life-sustaining therapies. This study explored patient and proxy decisions related to mechanical ventilator withdrawal in scenarios characterizing 3 distinct disease trajectories (cancer, stroke, and heart failure [HF]) with different prognoses. The relationship between patient directives, modification of directives, prognosis, trust, and EOL decisions were examined. This secondary analysis of data obtained in the "Contracts, Covenants, and Advance Care Planning" study included a sample of 110 subjects with 50 patient-proxy pairs. Patient and proxy agreement was assessed in response to questions regarding mechanical ventilator withdrawal while considering directives or modification of directives in 3 different scenarios. Patient and proxy agreement ranged from 48% (n = 24 pairs) to 94% (n = 47 pairs). Agreement was lowest in HF (uncertain prognosis) when the directive indicated "do nothing" or "did not indicate any preference." Modified directives yielded 48% (n = 24 pairs) to 84% (n = 42 pairs) agreement. Changing directives from "do nothing" to "more hopeful" in HF (uncertain prognosis) had the highest agreement among modified scenarios. Despite wide variability in agreement, patients reported a high level of trust in their proxies' decisions. This study highlighted differences in patient and proxy agreement about withdrawal of mechanical ventilation. Critical care nurses provide a key role in supporting EOL decisions. Encouraging ongoing communication about preferences and understanding the role of disease process and prognosis in decision making are paramount. Future research needs to explore factors that may improve patient and proxy agreement in EOL decisions and ways critical care nurses can support patients and proxies in these decisions, ultimately improving EOL care.

사전지시와 Physician Orders for Life-Sustaining Treatment의 윤리적ㆍ법적 쟁점*

This article examines advance directives (ADs) and physician orders for life-sustaining treatment (POLST), analyzes the differences between them as well as the differences between their English and Korean versions, considers some of the legal and ethical issues surrounding ADs and POLST, and proposes directions for their improvement in South Korea. In the United States, ADs consist of living wills and durable powers of attorney (DPA), both of which have merits and defects and give rise to unique ethical issues. However while POLST overcome some of the limitations of ADs, they cannot fully replace them. This article argues that ADs and POLST have a complimentary relationship. While Korean ADs are similar to those in the United States, the introduction of DPA into Korea may be difficult due to some special features of Korean culture. It is argued that public debate and academic analysis concerning the identity of proxy decision-makers is needed in order to prepare the legal and ethical ground for surrogate decision-makers in Korea. Additionally, this article emphasizes the need for establishing an institution that can assist patients in crafting ADs.

Commentary: shared decision making must be adopted, not adapted.

I their Open Forum, Dr. Hamann and Dr. Heres (1) discuss limited adoption of shared decision making in psychiatric services. They propose SDM-PLUS, a platform that might help speed adoption. In their model, three types of decisions are delineated: life-and-death decisions, best-choice decisions, and preference-sensitive decisions. According to the model, preference-sensitive decisions require classic shared decisions, whereas lifeand-death decisions fall outside the purview of shared decision making. The third category—best-choice decisions—is for people who clinicians anticipate will resistmedication treatment, such as those with psychotic disorders or those who lack insight. In these situations, the authors believe clinicians should choose the best option for the individual. Furthermore, the authors suggest that motivational interviewing and other interventions that support behavior change can be used to help achieve adherence. I would argue that we do not need an adaptation of shared decision making for behavioral health care. Legal statutes already exist to guide proxy decisionmaking in situations of decision incapacity and psychiatric emergencies. Similarly, introducing a category of bestchoice decisions brings us back to the paternalism that shared decision making seeks to avoid. It also reintroduces a familiar form of circular clinical reasoning. That is, if the client is compliant, then shared decision making is a virtue; but when there is disagreement about the course of treatment, the person lacks insight and shared decision making is risky. SDM-PLUS also confounds decision support interventions (shared decision making and decision aids) with behavior change support interventions, such as motivational interviewing. These are two distinct classes of interventions with different aims and should not bemerged (2,3). Rather than adapting shared decision making, we must focus on helping our field adopt it. Learning to use psychiatric medications to support recovery is a journey that often takes time. Along the way, people face many preference-sensitive decisions, including the decision to have electroconvulsive therapy or psychosurgery, the decision to use psychiatric medication during pregnancy, the decision to return to work or school, and the decision to use psychiatric medications. These are not just medical decisions. They are also personal decisions that have a profound impact on individuals’ lives. Psychiatric medications can be effective. However, they also can be harmful and ineffective for some people. Using antipsychotics is not always a best-choice decision. Individuals must have a voice and a choice in such decisions. As we learned in the CATIE study, decision incapacity is the exception rather than the rule, even among people with psychotic conditions (4). We should, therefore, expect that when faced with preference-sensitive decisions in behavioral health care, most people will participate in shared decision making if the care pathway is carefully designed to support it. Designing the infrastructure to support routine use of shared decision making holds promise for more widespread adoption of the practice. Training alone is usually not sufficient to achieve adoption of a new practice. More significant adoption results when training is reinforced through on-site coaching, determined leadership, and alignment of funding resources (5). Might it be possible for clinicians who engage in shared decisionmaking to bill at higher rates on the basis of the complexity of the visit? In addition, technology and other decision support strategies should be easily accessible, with some used during the consultation and others used prior to it or even from home. Finally, brief measures of shared decision making are becoming available that can help leadership teams gauge the success of their adoption efforts and make adjustments as needed.

Moral Authority and Proxy Decision-Making

Moral Authority and Proxy Decision-Making

Acceptability of an Advance Directive That Limits Food and Liquids in Advanced Dementia.

Some individuals fear living with advanced dementia and may even commit suicide if they receive dementia diagnosis. Living with advanced dementia could be prevented if a person who cannot feed himself or herself would not be fed by others. The purpose of the study was to find out how acceptable would be an advance directive that includes discontinuation of feeding at certain stage of dementia for relatives of persons who died with dementia. All participants of 2 focus groups would be willing to indicate at least 1 condition in which they would not want to be fed. Some of them would be willing to make a proxy decision to stop feeding in the absence of advance directives.

A Clinical Pathway for Guardianship at Dartmouth-Hitchcock Medical Center

Guardianship may be necessary when inpatients lack medical decision-making capacity and are unwilling to go home to be cared for by interested proxy decision makers. Interventions, centered on a clinical pathway, were conducted at Dartmouth-Hitchcock Medical Center (DHMC; Lebanon, New Hampshire). Because guardianship occurs at the interface of clinical care and governmental bureaucracy, quality improvement efforts focused on "in-hospital" processes, while actions were taken to improve communication between clinical teams and the legal system. A multidisciplinary quality improvement team mapped the DHMC guardianship process and analyzed the causes for delays before creating the clinical pathway. Specific interventions were designed and implemented to address the identified improvement areas. For the 26 guardianship patients during a two-year period (May 1, 2011-May 1, 2013), the charges incurred totaled approximately $4,000,000--for an average of more than $150,000 per patient. The medically unnecessary days of their length of hospital stay decreased from an average of 27.8 to 11.3, a statistically significant result as demonstrated by statistical process control analysis. The shorter hospitalizations of the last 13 patients amounted to 214.5 medically unnecessary hospital days saved and more than $1.2 million in charges reduced during the two-year period. Guardianship is a complex process that generates significant delays in appropriate care and increases in charges. The redesigned, standardized guardianship process, as defined in the clinical pathway, reduced associated medically unnecessary days of hospitalization.

Advance Directive and End-of-Life Care Preferences Among Nursing Home Residents in Wuhan, China: A Cross-Sectional Study

ObjectivesTo describe Chinese nursing home residents' knowledge of advance directive (AD) and end-of-life care preferences and to explore the predictors of their preference for AD. DesignPopulation-based cross-sectional survey. SettingsNursing homes (n = 31) in Wuhan, Mainland Southern China. ParticipantsCognitively intact nursing home residents (n = 467) older than 60 years. MeasuresFace-to-face questionnaire interviews were used to collect information on demographics, chronic diseases, life-sustaining treatment, AD, and other end-of-life care preferences. ResultsMost (95.3%) had never heard of AD, and fewer than one-third (31.5%) preferred to make an AD. More than half (52.5%) would receive life-sustaining treatment if they sustained a life-threatening condition. Fewer than one-half (43.3%) chose doctors as the surrogate decision maker about life-sustaining treatment, whereas most (78.8%) nominated their eldest son or daughter as their proxy. More than half (58.2%) wanted to live and die in their present nursing homes. The significant independent predictors of AD preference included having heard of AD before (odds ratio [OR] 9.323), having definite answers of receiving (OR 3.433) or rejecting (OR 2.530) life-sustaining treatment, and higher Cumulative Illness Rating Scale score (OR 1.098). ConclusionsMost nursing home residents did not know about AD, and nearly one-third showed positive attitudes toward it. AD should be promoted in mainland China. Education of residents, the proxy decision maker, and nursing home staff on AD is very important. Necessary policy support, legislation, or practice guidelines about AD should be made with flexibility to respect nursing home residents' rights in mainland China.

Most Important Outcomes Research Papers on Cardiac Arrest and Cardiopulmonary Resuscitation

Cardiac arrest is a common and treatable cause of death and disability. Each year ≈424 000 people experience emergency medical services (EMS)-assessed out-of-hospital cardiac arrest (OHCA) in the United States.1 The actual burden of OHCA is likely significantly higher because a substantial number go unassessed. In a prospective analysis of deaths in a US county, 5.6% of annual mortality was attributable to cardiac arrest.2 Many patients who suffer OHCA do not receive prompt cardiopulmonary resuscitation (CPR). Among those who receive CPR, a large number do not survive because of an inability to restore spontaneous circulation, or anoxic cerebral injury even after restoration of circulation. Nevertheless, when timely interventions are provided, a small proportion of patients (10.4% of all EMS-treated OHCA) recover to resume normal lives. The key therapeutic interventions that make the difference between life and death, metaphorically characterized as the 5 links in a chain of survival by the American Heart Association, include: (1) immediate recognition of cardiac arrest and activation of the EMS, (2) early CPR with emphasis on chest compression, (3) rapid defibrillation, (4) effective advanced life support, and (5) integrated postcardiac arrest care.3 Resuscitation science has undergone major advances since the origins of modern CPR >50 years ago.4 The field continues to be dynamic with emergence of new therapies such as therapeutic hypothermia5 and improvements in systems of care. However, many questions remain on issues such as optimum compression rate, efficacy of chest compression only CPR (CCCPR), dispatcher-assisted CPR, and benefits of postresuscitation measures such as hypothermia. A critical challenge also lies in the translation of resuscitation science into practice. To improve outcomes, each of the links in the chain of survival needs to be executed promptly and effectively. There remain several lacunae, which need to be overcome to develop an …

Commentary on "Advance care planning and proxy decision making for patients with advanced Parkinson disease".

Commentary on "Advance care planning and proxy decision making for patients with advanced Parkinson disease".