Ethics consultation in patients with behavioral and psychological symptoms of dementia

Abstract

The increasing age of the patient population around the globe and in the United States has resulted in a growing number of patients with dementia. In this manuscript, we examined the role of the ethics consultation service in patients who have dementia and associated cognitive and neuropsychiatric sequelae. We addressed a particularly challenging case presenting with behavioral and psychological symptoms of dementia. We discussed the ethical questions and challenges considered by the ethics consultation service and compared these with current suggestions and expectations from the research literature regarding the role of ethics consultation service in dementia management. We demonstrated two potentially useful approaches of clinical ethical analysis, the principalist theorem and Jonsen's four quadrants approach. While the number of consults in patients with behavioral and psychological symptoms of dementia is likely to increase in clinical ethics, the role of the ethics consultation service in this cohort of patients still remains to be determined. There are significant gaps in understanding of the ethics consultation service role in dementia management, and much work remains to be undertaken on the part of regulatory and healthcare systems in clarifying their roles, expectations, and competencies.

Keywords

Elderly octogenarian death and dying clinical ethics

Introduction

Worldwide life expectancy is increasing,¹ and this is accompanied by a growing number of people being diagnosed with dementia.² Patients admitted to the hospital who suffer from dementia pose many ethical challenges beyond medical needs, including involuntary treatment and hospitalization, use of restraints, surrogate decision making, and disposition. Decision-making capacity may be complex depending on local regulations and the presence of family support. Discharge options might be limited by lack of family support and societal resource availability.³ Clinical management, decision making, and discharge of patients with dementia is significantly more challenging in patients with behavioral and psychological symptoms of dementia (BPSD).⁴ The hospital ethics consultation service (ECS) is commonly consulted by inpatient teams caring for BPSD patients. We discuss the potential role of the ECS in BPSD decision making and management along with potential methodologies of ethical analysis. We present a case involving ECS and explore two established approaches of the clinical ethics analysis, the Beauchamp and Childress principalist approach and Jonsen's four quadrants approach. This case illustrates the challenges in the treatment and safe disposition of patients with BPSD. In addition, we review the current literature as part of a more general examination of what is known about the current role, expectations, and competencies of ECS in dementia management. We hope to contribute to further discussion of this challenging topic that is relatively underrepresented in the research literature and has, so far, lacked universal consensus.

Case description

A 75-year-old man presented to the emergency department (ED) from his nursing home because of BPSD. He had a previous diagnosis of Alzheimer's disease but no other significant medical history. He had a previous admission for BPSD, but after some period of relative stability, he had been discharged to a nursing home. He returned to the ED when nursing home staff became concerned about behavioral issues as well as aggressive behavior. It had previously been established by his physician that his BPSD was a result of his advanced Alzheimer's dementia, combined with his past history of post-traumatic stress disorder (PTSD).

During the current admission, there were reports that, due to his advanced dementia, the patient had hit and possibly bitten the nursing staff. These reports necessitated frequent application of four-point restraints that served to protect the patient and the nursing staff, such that proper medical care could be provided. Physical exams demonstrated no acute medical issues in need of inpatient management. His serological exams were all normal. There was clear evidence of advanced dementia with a severe cognitive impairment and a strong aphasia component; communication was severely limited, with poor responsiveness to conversation and speech that was unfortunately difficult to comprehend.

An opinion from the ECS was sought regarding the appropriateness of the use of four-point restraints when needed in the patient's care. Additionally, since the behavioral health service judged the patient not to meet the criteria for involuntary mental health treatment, the ECS was asked to render an opinion regarding how best to proceed with involuntary hospitalization and disposition. The ECS agreed that involuntary treatment and detention was justified given the patient's lack of decision-making capacity. A significant factor in this decision was the agreement of the patient's daughter, who was his next of kin and served as his surrogate decision maker. His daughter agreed with restraint use as well, given that they helped to ultimately protect the patient and to aid in the administration of proper medical treatment. After 109 days in the hospital, the patient was discharged to a skilled nursing facility with the consent of his daughter. Unfortunately, he was not properly cared for at this facility, and after presentation at another hospital, he was discharged to a different facility. This second facility has not been a healthy fit either, and his daughter is still in search of a facility where her father will receive high-quality care.

Ethical analysis

The ECS was asked to address the following ethical uncertainties pertaining to the patient's care: (1) appropriate use of restraints; (2) involuntary hospitalization and treatment; and (3) safe discharge and disposition.

The pricipalist theorem

One pragmatic approach that the ECS may employ to aid in decision making, in this case, is the principalist theorem as described by Beauchamp and Childress.⁵ While not universally applicable to all clinical scenarios of patient care,⁶ the four pillars of the principalist theorem (autonomy, beneficence, non-maleficence, and justice) provide useful infrastructure to begin an ethical analysis for the case described above.

In recent bioethical conflicts in Western countries such as the United States, autonomy has generally been the foremost guiding ethical value. In advanced dementia, autonomy is often compromised due to impairment in cognitive functioning, decision making, and self-awareness of medical needs. In inpatient dementia management where such an autonomy limitation is determined by the treatment team, mental health specialist, or the ECS, some preservation of autonomy may be achieved by either advanced directives (in which decision-making preferences are recorded while the patient has decision-making capacity), medical power of attorney ((MPA) in which a surrogate decision maker is assigned in advance whose duty is to represent the extrapolated will of the patient), or identification of a next of kin whose duty is to represent the extrapolated will, values, and decision-making preferences of the patient. In the absence of the aforementioned representations of the patient's preferences, patients are considered unrepresented, and hospitals may have other ethical and legal means to bypass autonomy—typically through decision making by physicians, ECS, or guardianship depending on local policies and regulations.⁷

Beneficence must also be considered in all healthcare decisions, including in pharmacologic interventions for BPSD, non-pharmacologic interventions, restraints when needed, the choice of specialty consults, the decision of when to discharge, and ultimately the choice of which posthospital disposition best suits the care needs of the patient. Arguably, beneficence becomes a relatively more important pillar when autonomy is compromised due to dementia. Restraints are a particularly challenging and controversial issue, and they inevitably give rise to an ethical conflict. The use of restraints compromises autonomy and may impinge on the principle of non-maleficence in the interest of beneficence and justice. According to The Joint Commission, “the hospital uses restraint or seclusion only to protect the immediate physical safety of the patient, staff, or others.”⁸ All hospitals should have specific policies governing the use of restraints, and local health regulations may also influence policy and procedure. Restraint use comes with ethical and practice concerns about loss of autonomy as well as a small risk of harm,⁹ but they may be justified if the risk of harm to self or others is significant and less restrictive interventions and pharmacologic treatments have been attempted. Consultation with a surrogate decision maker is important, and the ECS may be called on to weigh in the ethical justification of restraints.

The issues which the ECS was asked to consider in this case—involuntary hospitalization, involuntary medical treatment, use of restraints, facilitating disposition in the absence of consent, and assignment of a surrogate decision maker, are all common issues faced by ECS in dementia consultations, as noted in the United States by the American Academy of Neurology Ethics and Humanities Subcommittee¹⁰ and in both the United States and Europe in an excellent more recent review by Strech et al.¹¹

We believe that the treatment and decision-making questions presented in this case were reasonably addressed. Regarding the patient, the severe compromise of autonomy, functional limitations, and high clinical care burdens dictated a focus on beneficence and on external support of autonomy through the ECS's collaboration with the patients’ next of kin. The patients needed to stay in the hospital to receive care and have their health care needs addressed such that no harm would occur to him (non-maleficence). In collaboration with the ECS and care teams, surrogate decision makers could reasonably be assigned given that they were close family members who are best able to represent the will and values of the patient. Restraints were judged to be acceptable to use as needed after weighing the balance between non-maleficence, beneficence, and justice. Disposition could be pursued in an appropriate long-term care setting with the agreement of the surrogate decision maker based on the principle of beneficence as well as justice. The latter principle of justice would suggest a fair distribution of long-term care resources to those who need them, optimizing outcomes for the whole system.

One criticism of the ECS management of the case described could be that the ECS could have provided more patient advocacy, longitudinal involvement, and collaboration with family regarding disposition and longer-term well-being. Though this is likely not commonly regarded as within the scope of the ECS, their roles are not well delineated, and arguments have been made for the potential permissibility and benefits of patient advocacy and longitudinal collaborations with family members to better oversee patient well-being.¹² The allocation of ECS resources and member participation to these roles may be consistent with the principle of justice but may not be feasible however, and may stretch the limits of time, energy, and morale.

Jonsen's four quadrants approach

The principalist model of ethical decision making is not the only clinical ethical model available to the ECS. First, sole use of the principalist framework has been criticized for not adequately accounting for complexity in decision making and in integrating complex moral obligations between physician and patient.⁶ Second, alternative clinical ethical models to principalism have been proposed. The most notable is Jonsen's four quadrants approach, which involves weighing the considerations of medical indications, patient preference, quality of life, and contextual features.^12,13 In this model, all items carry similar weight and a final decision is made after all have been analyzed. The first quadrant, medical indications, identifies the medical problems and weighs the extent to which medical treatment benefits the patient, addresses treatable conditions, and improves the patient's quality of life. In this case, involuntary hospitalization was necessary to address a number of medical concerns despite the patient's decision-making incapacity. First, screening for addressable medical conditions through physical exam, laboratory assessments, and observation was necessary to address potential reversible medical conditions and rule out the possibility that a medical perturbation is worsening behavior or contributing to an overlying delirium. Second, aggressive behavior must be managed, as it has severe consequences for the quality of life of a patient as well as for people interacting with the patient. These consequences include the deficit in life quality due to behavioral disturbances themselves, inability of family or nursing facilities to manage the care of the patient's activities of daily living due to aggression, and the risk to the patient's own safety from combative behavior. There is certainly an indication for a diagnostic assessment and treatment consideration of aggression, both with pharmacologic and non-pharmacologic interventions. Third, the indication for restraint as a clinical intervention must be weighed, which is particularly difficult given the restrictive nature of the treatment. In this case, it may be acceptable if all other interventions have been exhausted and if there is an imminent risk of harm to the staff and patient. Finally, the ECS may weigh the indication and nature of the appropriate post-discharge care setting for the patient. There is a clear indication for an appropriate nursing care facility given the patient's lack of independence and nursing needs, but the degree to which ECS can and should be involved in this level of decision making is more murky.

The second quadrant represents patient preference. The main questions are (1) is the patient capable of rationally voicing care preferences? And if not, (2) is there a surrogate decision maker who can appropriately extrapolate the patient's wishes? An ideal surrogate should reflect decisions that accurately mirror the patient's values and desires in case of incapacitation and loss of autonomy. The patient's daughter served as a surrogate decision maker and worked with the treatment team collaboratively to consent to treatment. In this case, it was unclear what was known about the patient's preferences and values prior to neurological disease onset and to what extent the daughter's decisions were reflective of those. This analysis is parallel to the principalist analysis of the autonomy principle.

The third quadrant represents quality of life. Relevant considerations, given the irreversibility of dementia diagnoses, are whether involuntary hospitalization, clinical interventions for aggressive behavior, and disposition to a skilled nursing facility improve quality of life. The answer is likely affirmative, given the conclusion that the ultimate post-discharge goal is a stable and consistent care setting outside of a hospital in which life needs are met with more compliant and meaningful and less combative interactions with peers and nursing staff. This would represent improved quality of life by most judgments. Thus, treatment of BPSD by necessary pharmacologic and non-pharmacologic means would address a barrier to achieving this. The most controvertible aspect of this quality of life determination may be restraints, but the clinical team may judge that a brief decrement in quality of life due to restraint application may be necessary for the overall treatment and decision-making picture.

The fourth and final quadrant is contextual features, which may include, among others, economic, religious, and cultural factors, confidentiality issues, legal issues, and the impact of the decision on the patient's family and medical team. In this case, there are contextual factors influencing the decision. First, the patient's dementia severity and associated care needs and BPSD precludes the family from providing care for the patient. This necessitates a nursing home disposition for the patient and influences the need for more intensive management of aggressive behavior in order to facilitate nursing home admission (including involuntary hospitalization, the use of restraints, and pharmacological interventions). Second, the presence of safety concern in the hospital in the form of acute violence risk to the health care team provides additional justification to brief applications of restraint. Third, financial and insurance constraints may affect the feasibility and availability of appropriate post-discharge nursing care settings for the patient.

Both the principalist and Jonsen's four quadrants models are useful models to examine questions that arise in clinical cases such as the present case. Guidance is lacking regarding which model to choose and which categories of clinical questions lend themselves better to one or the other model (or perhaps some questions might be better suited to a different ethical model entirely). It is also important to note that there is insufficient research applying these models specifically to patients with dementia (though see one excellent review¹⁴), and regardless of the source of ethical dilemmas, these methods require considerable individual judgment on the part of the ECS clinicians. Additionally, these models are primarily Western and are not fully congruent across the global cultural spectrum.

Table 1 shows the ethical analysis for each question posed to the ECS. Topical items specific to each model are listed. Notably, both models lead to equivalent outcomes pertaining to typical consultation concerns encountered in clinical ethics, such as use of restraints, involuntary hospitalization, and individual involuntary treatments. The choice of methodology for ethical analysis is subject to ethicists’ preference. Our conclusion and experience of BPSD consultation are that it is clear that ECS involvement in involuntary hospitalization, treatment, and restraint decisions is useful. However, uncertainty remains. The degree to which other questions such as disposition and post-discharge monitoring are within the ECS scope is far from clear, as are questions regarding to what degree ECS should be involved in clinical management and whether it is appropriate for ECS to provide advocacy. Much work remains to be done to clarify the role of ECS in dementia management, BPSD, and more general clinical care. It is, therefore, worthwhile to broaden the discussion to a more general review of what is the current expected role of ECS in hospital care, where ECS started, and where it is going.

Table 1.

Analysis of relevant ethical questions: Principalist versus Jonsen's four quadrants.

Principalist approach	Jonsen's four quadrants approach
Ethical question: Appropriate use of restraints
Autonomy Patient lacked medical decision-making capacity; appropriate surrogate is identified Beneficence It was in the best interest of the patient to be restrained to receive appropriate medical treatment in order to improve quality of life and facilitate long-term care needs Non-maleficence Restraints could prevent harm to the patient and to the medical team Justice Restraint use would improve safety for all in the health care setting	Medical indication Medical indication is to facilitate necessary diagnostic evaluation and treatment of BPSD in the setting of aggressive behavior Patient's preference Supposition that an appropriately identified surrogate will extrapolate the will of the patient if he were competent Quality of life Restraints necessary for the treatment of BPSD and aggression, which precludes stable care setting and quality of life Contextual issues Restraint use is also influenced by institutional and local government policy. Risk of violence to medical team provides additional consideration
Ethical question: Involuntary hospitalization and treatments
Autonomy Patient lacked medical decision-making capacity; appropriate surrogate is identified Beneficence It was in the best interest of the patient to be hospitalized and to receive appropriate diagnostic assessment and medical treatment for BPSD given the significant sequelae of aggressive behavior Non-maleficence Hospital admission or treatment do not result in harms that outweigh the consequences of BPSD Justice Treatments and hospitalization for all patients in need represent justice principle	Medical indication Medical indication is based on the recognition that treatment of aggression requires diagnostic assessment, hospital observation, and interdisciplinary clinical treatment planning Patient's preference Supposition that an appropriately identified surrogate will extrapolate the will of the patient if he were competent Quality of life Recognition that aggression and BPSD severely decrease quality of life by negatively impacting meaningful interactions and long-term care feasibility Contextual issues Additional contributors to this hospitalization are the patient's care needs overwhelming the family supports, as well as financial limitations
Ethical question Appropriate disposition
Autonomy Patient lacked medical decision-making capacity; appropriate surrogate is identified Beneficence The patient's lack of independence and severe cognitive deficits require an adequate level of placement for care needs and quality of life. Non-maleficence A disposition with an adequate level of care would decrease the risk of harm to the patient Justice Matching appropriate level of care to all patients with dementia in the setting of limited resources and financial limitations would represent the justice principle	Medical indication Lack of independence and severe cognitive deficits require an adequate level of placement to meet care needs Patient's preference Supposition that an appropriately identified surrogate will extrapolate the will of the patient if he were competent Quality of life Recognition that meeting the patient's long-term care needs would be a meaningful contributor to quality of life. Contextual issues Securing an appropriate care setting is affected by limited community resources, financial constraints, and some care facilities’ exclusion of BPSD

BPSD: behavioral and psychological symptoms of dementia.

What is the general role of hospital ethics consultation?

A good history of the development of ethics committees was published by Rosner.¹⁵ Discussion about ethics committees began in the 1970s, as a confluence of factors catalyzed their formation, including advances in medical technology, concerns about moral decision making in the medical professions, worries about regulation and liability in end-of-life disputes, and societal discussion about informed consent and protection of rights in medical research subjects. Hospital ethics committees began their establishment in earnest rapidly in the 1980s, as concerns over patient autonomy, increasing legal challenges to patient care decisions and the increasing complexity of clinical care further accelerated the development of hospital ECS. Further catalyzing the widespread formation of ethics committees, The US Joint Committee for Accreditation of Healthcare Organizations (JCAHO, now known as The Joint Commission or TJC) has since mandated the establishment of mechanisms that allow hospitals to deal with ethical issues emerging in the context of patient care, which most hospitals now handle through ECS. Though TJC strongly encourages ECS, there is no universal guideline dictating the details of who should make up the ECS, what kind of clinical questions it should assist in answering, what should be its role in care and advocacy of the patient, and how ethical principles should be used in clinical decision making. Thus, the general question of what role ECS should take up within the hospital care system is limited by the lack of universal consensus.

The lack of consensus, lack of universal guidelines, and variability in ECS functioning across the United States has been researched and discussed in several studies. Fox et al. conducted a widespread survey of hospital ECS first in 2007 and then in a follow-up survey more recently in 2022.^16,17 The surveys found that most hospitals had ECS, and the primary goals of ECS were: protecting patients’ rights, resolving conflicts, improving quality of patient care, improving staff and patient satisfaction, education about ethics. The surveys also found that the makeup and practices of committees varied widely, that ethics education of committee members was relatively infrequent, and that these findings did not appreciably change in the 13 years between the two surveys. There have been attempts to establish core competency guidelines for ECS in the United States, most notably by the American Society for Bioethics and Humanities (ASBH),¹⁸ though additional guidelines have been influential, such as those by the Catholic Health Association and Ascension Health,¹⁹ and by the US Department of Veterans Affairs,²⁰ Another confounder in the variability of ECS roles and expectations is that there has been little adoption of these guidelines among US hospitals as hospitals continue to vary widely in ethics practice.²¹ The study of ECS nationally is further limited by the lack of consensus about appropriate ECS outcome measures to research,^22,23 though notably, some positive outcomes have been reported.^24,25

What is the role of hospital ethics consultation in dementia?

The scope of the problem of dementia is enormous and increasing. In 2020, the United Nations projected a global life expectancy of 73.2 years (84.1, 79.1, and 85.0 years in Italy, the United States, and Japan, respectively).¹ With this increase, it is likely that the population of older Americans will drastically increase along with patients suffering from dementia. By 2050, the global incidence of people with dementia will be over 115 million.² Patients with dementia suffering from behavioral and psychological symptoms pose complex challenges for all who care for them, including family members and caregivers, the health care team in the hospital and outpatient settings, and residential care facilities such as skilled nursing homes. Not the least of these care complexities are ethical issues for which the ECS should be available to play an important role.

The relative lack of research and academic study examining ethics consultation is even more applicable to the role of ECS in the management of patients with dementia. Some of this is generalizable to the general structure of ECS, including the lack of universal guidelines, practice, and makeup of ethics committees, leading to the need for healthcare organizations to design their own policies and mandates.^16,21 Another driver for the lack of research may be the inconsistency of inclusion of ethical guidelines within recognized dementia clinical practice guidelines themselves.²⁶ A lack of ethical practice consensus is likely to greatly hamper a standardization of practice and core competencies within ECS for dementia.

Nonetheless, there has been some illuminating study on this topic, including a survey from the American Academy of Neurology¹⁰ and a more recent systematic quality review.¹¹ These studies reveal clinical issues that are most likely to be pertinent to ECS in dementia. These include decision-making capacity, autonomy, and clinical information disclosure, consent and involuntary treatment, surrogate decision making and health care proxies, long-term resource management and end-of-life care (including tube feeding), restraints, medication treatment, and appropriate placement. These identified issues mirror well the issues addressed by the ECS in the case presented in the current report and confirm our belief that these clinical issues are typical of ECS requests in dementia management.

The assignment of a surrogate decision maker is a frequent question; sometimes this is straightforward if capacity decisions are unequivocal and the next of kin agrees and is readily available (or there is a well-delineated advanced directive). There may be other situations in which capacity determinations are equivocal, there are no clear next of kin available, or hospital procedures or local/state regulations require court intervention to assign a surrogate.⁷ In such cases, an ECS may be able to assist the care team in the interim. Capacity determinations themselves are common questions in consultative services. In dementia, they are more frequently needed, and it has been argued that attention to capacity should be paid more carefully during ongoing informed consent processes.²⁷ The use of restraints also requires ethical consideration, particularly in patients with dementia, delirium, or psychiatric disturbances. As discussed previously, consideration should be given to patient autonomy, the risk of harm from restraints, and potential harm which could come to the patient or clinical team if alternative methods to calm or de-escalate the patient are unsuccessful.⁹ Though alternatives to restraints are highly preferred in most clinical situations, there are some in which their use is unavoidable, and ECS can assist in this determination. Involuntary medications in the absence of capacity also arise as a clinical question. This is a challenging dilemma, because there are no Food and Drug Administration (FDA)-approved medications for acute behavioral management of dementia or BPSD, and many medications have an adverse safety profile. Indeed, despite the widespread historical use of antipsychotics in BPSD, clinical trials such as the Clinical Antipsychotic Trials of Intervention Effectiveness-Alzheimer's Disease study (CATIE-AD) trial²⁸ and others²⁹ reveal a lower tolerability and efficacy than previously believed. Nonetheless, medications such as antipsychotics, serotonin reuptake inhibitors, acetylcholinesterase inhibitors, and memantine may have utility in controlling BPSD when other measures have been unsuccessfully attempted.²⁸ It is reasonable for the ECS to help the clinical team weigh the risks and benefits of medication against the patient's capacity and autonomy. In weighing all risks and benefits of these interventions both the pricipalist theorem and the Jonsen's four quadrants approach might assist the ECS in arriving at a well-reasoned recommendation to the clinicians and family members.

One final question that may arise is the appropriate disposition of the patient. We find that the current models of ethical analysis are less helpful in this regard. While this is a clinical decision made in collaboration with the patient, family, possible surrogate decision makers, financial constraints of the patient and payer, and the availability of resources in the local community, there still may be a role for the ECS. There has been a suggestion that advocacy and long-term follow-up could be within the scope of the ECS role,³⁰ which might argue for the ECS to advocate for an ethical alignment between the patient's preference, functional needs, and ultimate post-discharge disposition. To summarize, despite the common questions facing ECS in dementia and BPSD patients being known, there is no universal consensus, and more research is needed. Advocacy for patients’ well-being and quality of life should be the guiding principles.

Limitations of this study

There are two major issues that limit the generalizability of any discussion of the role of ECS in dementia patients. First, there is great variation among ECS, with no standardization, significant variation in experience and qualification of members, and no mechanism to ensure a high level of quality in how ECSs operate.^16,17,21 Recent reviews of ECS have suggested a relative lack of experience and ethics education among many members,^16,17 and in response, suggested remedies have included certification for ECS members and development of appropriate outcome measures that may be applied by hospitals.²² In the absence of universal adherence to core competencies, variability in ethics education among ECS members, variability in guiding principles and roles, variation in mandatory ECS triggers, and lack of accepted certification systems, significant divergence in the perceived role of ECS in dementia management is inevitable. Solutions to the problems of standardization of process and education and development of appropriate outcome measures are not trivial ones, both generally and in dementia management. Nonetheless, Fox et al. did show that there was some agreement regarding the primary role of ethics committees,^16,17 and reviews of ethical considerations in dementia do find commonality in ethical questions typically addressed.¹⁰

The second limitation is the focus on Western ethical principles in the United States and on patients originating from that culture. The case presented here was from a government-operated VA medical system in Texas, and the references evaluated here are primarily from the United States, Canada, and Europe. The principalist and Jonsen's four quadrants approach both represent Western ethical principles as seen in the United States, Canada, and Europe, though these countries may also represent a diversity of ethical views among themselves. It is oversimplified to argue that Western countries are represented by a monolithic ethical belief system, and indeed, differences in ethical guidelines have been noted among Western countries.³¹ Nonetheless, this Western bias may be particularly pertinent to the general primacy of patient autonomy and preference in Western cultures; one related concept to this is the spectrum of individualistic self-determination to a more collectivistic self-determination, on which Western countries are biased toward the individualistic end. The ethical decision making discussed in this study cannot be universally applied to other countries and cultures, not even to all patients in the United States given its degree of cultural diversity. Indeed, there is ample study of how cultural differences in groups alter bioethical principles of medical decision making.^32–34 In medical decision making in East Asia, a shift in locus of decision making from the patient to the family system as part of the collectivist, or confucionist, social structure, has been noted, though others have argued that this view is too simplified.³⁵ It is also worth pointing out a considerable amount of research on the contribution of cultural differences to bioethical decisions in other cultural groups and geographies, such as in Japan,³⁶ Latin America,³⁷ Korean Americans,³⁸ and the Navajo Nation.³⁹ Ethics committees should be aware of the variability in cultural viewpoints, communication, and relational styles, and decision-making expectations; a good case can be made for recommended or mandated education on this topic. In summary, the ethical principles discussed herein are less applicable to the competencies and workflow of ECS in other countries for these reasons. When considering the formation of ECS, the establishment of their charters and competencies, and the delineation of their roles in dementia and BPSD, particular attention should be paid to the cultural, social, and bioethical contexts and nuances of the country in question.

Summary

Hospital ECSs have become widespread in hospital settings, though universal guidance and understanding about their role is not well circumscribed. Clinical decision making involving patients with BPSD present a unique challenge to ethics consultation. Current ethical models of analysis such as the principlist theorem and Jonsen's four quadrants approach provide useful framing of ethical analysis for ECS to generate well-reasoned recommendations to clinicians and patient's families with regards to commonly encountered ethical issues. However, in patients with BPSD, disposition remains a challenging dilemma. Many uncertainties remain due to the complexity of clinical issues encountered, the necessity for decision making under conditions of diminished capacity, and the relative lack of guidance and research on how ethics committees should approach this topic. More education and research are needed to prepare for the inevitability of steadily increasing numbers of BPSD patients in the United States, with government agencies, hospital systems, and ECS requiring increased preparation, education, and thoughtful guidelines for the growing problem of dementia-related care.

Footnotes

Author’s contribution

All authors have contributed significantly to this manuscript according to the ICMJE criteria.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Ethical approval

All procedures performed in the studies involving human participants were in accordance with the ethical standards of the institution and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Ethical standards

Appropriate consent from the patients was obtained for the study.

Human and animal rights

This article does not contain any study with animals performed by the authors.

Informed consent

Appropriate informed consent as requested by the Journal of Clinical Ethics was obtained from the patient's next of kin for the writing and publication of these case reports.

ORCID iD

Sergio Huerta

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