Behavioral health professionals often support patients and families through some of the hardest decisions of the end of life. This course covers the practical, ethical, and legal considerations that shape that work. It begins with the burdens on family caregivers and surrogate decision makers, the legal standards that govern surrogate decisions, and the role of advance care planning, including psychiatric advance directives and the limits on behavioral health professionals' scope of practice. The course also covers culturally responsive end-of-life care, including cultural humility and the legal and clinical importance of professional interpreters. It closes with the specific considerations for patients with dementia, children and adolescents, people with intellectual or developmental disabilities or serious mental illness, and LGBTQ+ patients.
This course is designed for behavioral and mental health professionals involved in the care of clients at the end of life.
The purpose of this course is to give social workers, counselors, therapists, and psychologists the knowledge and skills to handle the practical, ethical, and legal issues of end-of-life care.
Upon completion of this course, you should be able to:
- Describe surrogate decision-making standards, advance care planning tools, and the scope-of-practice limits that apply to behavioral health professionals in advance care planning.
- Apply the principles of biomedical ethics and discipline-specific ethics codes to end-of-life issues, including decision-making capacity, desire for hastened death and medical aid in dying, confidentiality, elder abuse, professional boundaries, continuity of care, and clinician self-care.
- Outline strategies for culturally responsive end-of-life care, including cultural humility, the appropriate use of professional interpreters, and ethical and legal considerations for special populations at the end of life.
Lisa Hutchison, LMHC, has more than 20 years of experience providing individual and group counseling with adults. She specifically focuses on teaching assertiveness, stress management, and boundary setting for empathic helpers. Ms. Hutchison graduated from the University of Massachusetts, Boston, with a Master’s degree in education for mental health counseling.
Contributing faculty, Lisa Hutchison, LMHC, has disclosed no relevant financial relationship with any product manufacturer or service provider mentioned.
Alice Yick Flanagan, PhD, MSW
Margaret Donohue, PhD
The division planners have disclosed no relevant financial relationship with any product manufacturer or service provider mentioned.
Sarah Campbell
The Director of Development and Academic Affairs has disclosed no relevant financial relationship with any product manufacturer or service provider mentioned.
The purpose of NetCE is to provide challenging curricula to assist healthcare professionals to raise their levels of expertise while fulfilling their continuing education requirements, thereby improving the quality of healthcare.
Our contributing faculty members have taken care to ensure that the information and recommendations are accurate and compatible with the standards generally accepted at the time of publication. The publisher disclaims any liability, loss or damage incurred as a consequence, directly or indirectly, of the use and application of any of the contents. Participants are cautioned about the potential risk of using limited knowledge when integrating new techniques into practice.
It is the policy of NetCE not to accept commercial support. Furthermore, commercial interests are prohibited from distributing or providing access to this activity to learners.
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The role of implicit biases on healthcare outcomes has become a concern, as there is some evidence that implicit biases contribute to health disparities, professionals' attitudes toward and interactions with patients, quality of care, diagnoses, and treatment decisions. This may produce differences in help-seeking, diagnoses, and ultimately treatments and interventions. Implicit biases may also unwittingly produce professional behaviors, attitudes, and interactions that reduce patients' trust and comfort with their provider, leading to earlier termination of visits and/or reduced adherence and follow-up. Disadvantaged groups are marginalized in the healthcare system and vulnerable on multiple levels; health professionals' implicit biases can further exacerbate these existing disadvantages.
Interventions or strategies designed to reduce implicit bias may be categorized as change-based or control-based. Change-based interventions focus on reducing or changing cognitive associations underlying implicit biases. These interventions might include challenging stereotypes. Conversely, control-based interventions involve reducing the effects of the implicit bias on the individual's behaviors. These strategies include increasing awareness of biased thoughts and responses. The two types of interventions are not mutually exclusive and may be used synergistically.
#77640: Practical, Ethical, and Legal Considerations at the End of Life
Planning ahead provides patients with the most control over their end-of-life care, but not all patients have the opportunity to do so. End-of-life planning for the patient will include knowing the type of care they need and want, knowing where they want to receive this care, knowing what documents (e.g., advance directives) and associated costs to include in planning, and determining who will help carry out their wishes [1].
The vast majority (80%) of care given to hospice patients is provided by informal and unpaid caregivers who are often family members. They can be responsible for everything from the management of household and finances to medical and personal care. Providing this level of care can contribute to increased stress and health problems [2]. Caregivers often report significant levels of anxiety, depression, and perceived stress as well as poorer physical health and decreased quality of life compared with non-caregivers [3]. In one study, nearly one-third (31%) of caregivers reported moderate-to-high levels of anxiety [4]. Even family members who are not caregivers experience distress and require support. Supporting the growing number of family and other unpaid caregivers is an urgent public health issue. The need for adequate support is especially pressing when older patients and the loved ones who assist them are most vulnerable, as at the end of life [5]. Health and mental health professionals can help the caregiver and/or family by preparing them for their loved one's death, treating symptoms of burnout and stress, and offering grief counseling when desired [6].
Family members may be called upon to make decisions on their loved one's behalf if incapacitation becomes an issue. Ideally, the decision-making process will reflect the patient's physiologic realities, preferences, and recognition of what, clinically, may or may not be accomplished [7,8]. Being a surrogate decision maker is stressful for many and can have negative emotional effects that last months or years [9]. Frequent tension can occur between the desire to respect the patient's values and the fear of responsibility for a loved one's death, a desire to pursue any chance of recovery, and a need to ensure family well-being [10]. Counseling for the surrogate both during and after the decision-making process can be beneficial.
Who serves as the surrogate, and how that person should decide, is shaped by law. When a patient has not appointed a healthcare agent and no guardian has been appointed, most states have default surrogate (family consent) statutes that set a priority list of decision makers, typically beginning with a spouse, followed by adult children, parents, and siblings; some states also recognize domestic partners or close friends, while others do not [11,12]. Surrogates are expected to use substituted judgment, making the decision the patient would have made based on the patient's known wishes and values, and to rely on a best interest standard only when the patient's wishes cannot be determined [13,14]. In practice these standards often blend, and clinicians can help surrogates by asking what the patient would have wanted and valued, rather than what the surrogate wants for the patient [14]. Some patients have no advance directive and no available surrogate (so-called unrepresented or "unbefriended" patients). Approaches to decision making for these patients vary by state and institution and may include ethics committee review or court-appointed guardianship [15].
Shared decision making also has been found to be beneficial. Healthcare providers can encourage decision makers to involve other family members. They can repeat relevant information in simple language, prompt them to think about what the patient would or would not want, and frequently remind them that everything that can be done is being done [16]. Support for the surrogate should foster respect for patient preferences and values and help reduce guilt about decisions made following the patient's death [16]. An ideal surrogate will participate in collaborative decision making with care providers. If a surrogate avoids communication or requests interventions that are clearly not considered in the patient's best interest, counseling should be provided. If counseling is unsuccessful, replacement of the surrogate should be considered [17]. Family members who reside far away and who are not designated as the decision maker also can create difficulties by trying to undo, contest, undermine, or alter decisions made by local family members who have long been involved in the patient's care. These disagreements can compromise the ability of the patient's healthcare team to provide quality care. These limits of formal advance care planning have led some practitioners to assert that informal conversations with patients' significant others are most critical to end-of-life planning [18].
Current practice frequently fails to promote patient goals. This is an area for future research and improvement. In the meantime, clinicians should encourage patients to document their own goals, including treatment preferences and preferences regarding how they want decisions to be made for them during periods of decisional incapacity. This is achieved through advance care planning [19,20].
Advance care planning is widely considered an essential step toward achieving end-of-life care that is consistent with the preferences of dying patients and their families. Advance care planning typically includes a living will and a durable power of attorney for health care, which enable patients to articulate and convey their treatment preferences while they are cognitively intact [20]. Advance care planning documents also can include do not resuscitate (DNR) orders, medical/physician orders for life-sustaining treatment (MOLST/POLST), and informal documents of preference or other healthcare proxies. Ideally, these documents reflect discussions among the patient's family, surrogate, and healthcare provider about the patient's preferences for health care in the context of serious illness [8]. Advance care planning is considered an essential step for achieving a "good death" in which physical pain and emotional distress are minimized and the patient's and family members' treatment preferences are respected [18]. Advance care planning is associated with greater use of palliative care among dying patients, lower medical expenditures at the end of life, and less distress among patients and patients' families.
Racial and socioeconomic disparities in rates of advance care planning have been documented. Policy advances (e.g., Medicare reimbursement for doctor-patient consultations) may increase rates of planning among populations who may not have access to professionals who encourage such preparations [20]. Health and mental health professionals can assist families in the process of preparing advance care planning documents. Being a mediator in advance care planning conversations can provide clarity for patients and family members about the patient's wishes regarding death [21].
Behavioral health professionals play a valuable role in advance care planning, but they should remain within their scope of practice. Explaining the purpose of advance directives, helping patients clarify their values and priorities, and facilitating family communication are appropriate counseling functions. Advising a patient on how to execute legal documents or interpreting state law is legal advice and should be referred to an attorney or to the facility's designated staff. Requirements for a valid advance directive (e.g., witnesses, notarization, statutory forms) vary by state, and many states restrict who may serve as a witness. California, for example, prohibits the patient's healthcare provider, an employee of the healthcare provider, and operators or employees of certain care facilities from witnessing an advance health care directive [22]. Clinicians should know their state's requirements and their employer's policies before agreeing to witness a document. They should also decline to serve as a client's healthcare agent, which would create a conflict of interest and a multiple relationship [23,24]. Finally, POLST/MOLST forms are medical orders that must be signed by a physician or other authorized practitioner; behavioral health professionals can support the goals-of-care conversation that informs these orders but cannot complete them [25].
Psychiatric advance directives (PADs) allow people with serious mental illness to document treatment preferences (e.g., preferred and refused medications, preferred facilities, crisis contacts) and to appoint an agent to make mental health treatment decisions during periods of psychiatric incapacity. Many states have PAD-specific statutes, and in others, mental health decisions may be addressed through a general healthcare power of attorney [26]. In a randomized trial, a facilitated PAD intervention improved the working alliance between patients and clinicians and increased the likelihood that patients received mental health services consistent with their preferences [27]. For a patient with serious mental illness who also has a life-limiting illness, clinicians can help ensure that the psychiatric and end-of-life directives are consistent with each other and that the appointed agents know about both documents.
Ethical concerns and legal considerations can influence counseling at the end of life. Health and mental health providers are on the front line supporting and guiding the patient and the patient's family through the dying process. In addition to the principles of biomedical ethics described in this section, behavioral health professionals are guided by the code of ethics of their profession and bound by the licensing laws and regulations of the states in which they practice [13,23,24,28,29].
Autonomy, as viewed from the perspective of patients at the end of life, includes two core domains: "being normal" and "taking charge" [30]. These two domains account for the circumstances and clinical realities of people with life-limiting illness and allow clinicians to better understand their needs. Autonomy is, however, not just a concern when making choices of treatment for end-of-life care but also when supporting patients in their daily lives and active preparations for dying. This support can help relieve the patient of stress and the fear of being a burden to family [30]. When a patient expresses a fear over the loss of autonomy, it is important for clinicians to determine the source of the fear. Common sources of such fear include fear of becoming physically dependent on life-supporting technology; fear of losing independence; and fear of loss of engagement in meaningful activity. Often, the patient is simply expressing a desire to preserve self-determination regarding end-of-life care and planning [31]. The healthcare team respects patients' autonomy by giving them the information needed to understand the risks and benefits of a proposed intervention, as well as the reasonable alternatives (including no intervention), so that they may make independent decisions [32].
Distributive justice is the fair, equitable, and appropriate distribution of healthcare resources. It requires impartiality in the delivery of health service. Issues of distributive justice encountered in healthcare settings include the allotment of scarce resources, care of uninsured patients, conflicts of interest based on religious or legal grounds, and public health and safety issues. Despite these constraining influences, healthcare providers have an ethical obligation to advocate for fair and appropriate treatment of patients at the end of life [33,34].
The principle of beneficence is the obligation of health and mental health professionals to act in the best interest of the patient [21]. Beneficence also includes preventing and avoiding harm and defending the most useful intervention for the patient [33,34]. Beneficence is fundamental to dilemmas about the discontinuation, withholding, or withdrawal of medical treatment [21]. When wishes about end-of-life care are not known or cannot be communicated by the patient, end-of-life decisions are generally made by the patient's legally authorized surrogate (e.g., a healthcare agent, guardian, or default surrogate under state law) in consultation with the healthcare team. The surrogate should rely on the patient's known wishes and values (substituted judgment) whenever possible; a best interest standard, grounded in beneficence, applies only when the patient's wishes and values cannot be determined [13,14].
Nonmaleficence is the principle of refraining from causing unnecessary harm (i.e., first, do no harm) [21]. It also refers to the moral justification behind an intervention that might cause some pain or harm; harm is justified if the benefit of the intervention is greater than the harm to the patient and the intervention is not intended to harm [21]. The emphasis in nonmaleficence is on relieving the symptoms that harm the patient [35]. Health and mental health providers can exercise nonmaleficence by having an understanding of the moral principles and ethical codes governing end-of-life care. They can prevent undue harm by being as knowledgeable as possible about impending illnesses through relationships with the interprofessional team [21].
Each behavioral health discipline's code of ethics addresses end-of-life practice, either directly or through its general standards. The NASW Code of Ethics emphasizes client self-determination (Standard 1.02), competence (1.04), cultural competence (1.05), and privacy and confidentiality (1.07) [23]. The NASW Standards for Palliative and End of Life Care further describe expectations for social workers in this area, including standards on ethics and values, assessment, documentation, interdisciplinary teamwork, cultural competence, and attitude and self-awareness [36].
The ACA Code of Ethics includes a standard devoted specifically to end-of-life care for terminally ill clients (Standard A.9) [28]. It directs counselors to help clients obtain high-quality end-of-life care, exercise the highest degree of self-determination possible, and receive an assessment of their ability to make competent decisions from a mental health professional experienced in end-of-life care. It also recognizes that counselors may choose whether to work with terminally ill clients who wish to explore end-of-life options (providing appropriate referrals if they do not) and gives counselors the option to maintain confidentiality when a terminally ill client is considering hastening his or her own death, depending on applicable laws and the specific circumstances and after seeking consultation or supervision [28].
The APA Ethical Principles of Psychologists and Code of Conduct addresses these issues through its general principles (e.g., Respect for People's Rights and Dignity) and its standards on competence, avoiding harm, multiple relationships, and confidentiality [24]. The AAMFT Code of Ethics contains comparable standards on client autonomy, confidentiality, and professional competence [29]. Because codes are revised periodically, clinicians should consult the current version of their own profession's code.
Decision-making capacity is a clinical determination of whether a patient can make a specific decision at a specific time; competence is a legal determination made by a court [37]. Capacity is decision-specific (e.g., a patient may be able to choose a healthcare agent but unable to weigh complex treatment options) and may fluctuate with delirium, medication effects, pain, fatigue, or the progression of dementia. Clinicians typically assess four abilities [37]:
Communicating a choice
Understanding the relevant information
Appreciating how that information applies to one's own situation
Reasoning about the options
The level of scrutiny should increase with the seriousness of the consequences of the decision, and disagreement with the treatment team's recommendation is not, by itself, evidence of incapacity [37]. Behavioral health professionals, particularly psychologists, are often asked to help determine whether depression, anxiety, or cognitive impairment is distorting a patient's decision, as distinct from a reasoned choice with which others disagree. Who may formally determine incapacity varies by state and setting; in many jurisdictions, the determination rests with the patient's primary or attending physician [12]. Behavioral health clinicians should therefore clarify their role, and the purpose of their evaluation, before conducting a capacity assessment.
Patients near the end of life may say that they want to die or wish their death would come sooner. Such statements are not equivalent to suicidal ideation and should be explored rather than dismissed or reflexively treated as a psychiatric emergency. An international consensus definition describes the wish to hasten death as a reaction to suffering in which the patient can see no way out other than to accelerate his or her death; it may be expressed spontaneously or after being asked and should be distinguished from the acceptance of impending death or a wish to die naturally, although sooner [38]. Depression and hopelessness are strong, independent predictors of a desire for hastened death among terminally ill patients, and both are treatable [39]. A careful assessment explores what the statement means to the patient and contributing factors such as uncontrolled symptoms, depression, fear of being a burden, loss of autonomy, and existential distress, as well as any intent, plan, or access to means.
Clinicians should also understand which end-of-life options are lawful in their jurisdiction. Patients with decisional capacity have the right to refuse or withdraw life-sustaining treatment, and some patients choose voluntarily stopping eating and drinking (VSED) to hasten death [40]. A growing number of U.S. jurisdictions permit medical aid in dying (MAID), in which a terminally ill adult with decisional capacity may obtain a prescription for medication that he or she self-administers to end his or her life. Oregon's Death with Dignity Act, the model for most subsequent laws, requires the attending or consulting physician to refer the patient for counseling by a psychiatrist or licensed psychologist if either physician believes the patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, and it provides that actions taken in accordance with the Act do not constitute suicide or assisted suicide under the law [41]. A study of Oregon patients who requested aid in dying found that some met criteria for depression, raising concern about whether depression is consistently identified before a prescription is written [42]. Laws differ across jurisdictions regarding eligibility, waiting periods, which professionals may perform the mental health evaluation, and terminology. Behavioral health professionals should know whether MAID is lawful in their state and how their state's duty-to-protect provisions apply when a client is pursuing a lawful end-of-life option, a question that is unsettled in many jurisdictions and warrants consultation with a supervisor, ethics committee, or attorney. Clinicians may decline to participate in MAID-related services on grounds of conscience but should provide a timely referral [28].
Confidentiality obligations continue as a patient's capacity declines and after the patient dies. Under the HIPAA Privacy Rule, a person with legal authority to make healthcare decisions for a patient (e.g., a healthcare agent or guardian) is generally treated as the patient's personal representative with respect to relevant health information, and after death, the executor or administrator of the estate serves in that role [43]. Providers may share information relevant to a family member's or friend's involvement in the patient's care or payment for care, including after death, unless doing so is inconsistent with the patient's previously expressed preference. A deceased person's health information remains protected for 50 years after death, and psychotherapy notes generally require a specific authorization before they may be disclosed [43]. State law and professional codes may be more protective than HIPAA; the NASW Code, for example, directs social workers to protect the confidentiality of deceased clients [23]. While patients still have capacity, clinicians should ask what information may be shared with family members and surrogates and document the patient's preferences.
Patients at the end of life are often physically dependent, cognitively impaired, or socially isolated, which places them at increased risk of abuse, neglect, and financial exploitation [44]. Warning signs include unexplained injuries, poor hygiene or untreated conditions, a caregiver who will not allow the patient to be seen alone, and sudden changes to finances, wills, or advance directives. Undue influence, in which a trusted person uses a position of power to substitute his or her own wishes for the patient's, can be difficult to distinguish from legitimate family involvement. Clinicians should consider whether a patient's stated preferences are consistent with long-held values and whether the patient expresses the same preferences when seen privately. Every state has an adult protective services system, and most states have mandatory reporting laws for suspected abuse of older or vulnerable adults [44]. Because the professionals designated as mandated reporters, definitions of abuse, and reporting timelines vary, clinicians should know the requirements in each state where they practice.
End-of-life work often takes place in homes, hospice facilities, and hospitals, where the usual therapeutic frame can be harder to maintain. Clinicians may be offered gifts or named in a patient's will, invited to attend a funeral or memorial service, or present for intimate family moments. These situations are not inherently unethical, but each should be evaluated for the risk of exploitation, impaired objectivity, or harm to the client or family [23,24]. The ACA Code, for example, directs counselors deciding whether to accept a gift to consider the therapeutic relationship, the monetary value of the gift, the client's motivation, and the counselor's motivation [28]. Accepting a bequest or serving as a client's healthcare agent or executor raises significant conflict-of-interest concerns and may be prohibited by employer policy or licensing board rules. Attending a funeral or memorial service may be appropriate and meaningful to the family but should be done in a way that protects confidentiality (e.g., not disclosing the nature of the professional relationship to other attendees). When boundary questions arise, clinicians should consult with a supervisor or colleague and document their reasoning.
Ethics codes require clinicians to make reasonable efforts to plan for interruptions in services and to end services appropriately [24,28]. At the end of life, termination is often abrupt. Clinicians can prepare by discussing with the patient how the relationship will end, whether the clinician will have contact with the family after the patient's death, and what bereavement resources are available. Clinicians should also be aware of licensure limits when a patient relocates, for example, to receive hospice care or to live with family in another state, including for telehealth sessions. Practice across state lines is generally governed by the laws of the state where the patient is located at the time of service [45]. Interstate licensure compacts (e.g., PSYPACT, the Counseling Compact, and the Social Work Licensure Compact) may permit practice in other member states once operational, but clinicians must confirm both states' participation and the compact's requirements.
Repeated exposure to death, grief, and suffering places clinicians at risk of compassion fatigue, burnout, and their own grief reactions [46,47]. Clinicians may also experience moral distress, which occurs when a professional believes he or she knows the ethically appropriate action but feels constrained from taking it, such as when a family insists on interventions the patient would not have wanted [48]. These are ethical concerns as well as wellness concerns. Professional codes require clinicians to maintain competence and to take steps to address personal problems that may impair their professional performance, and the NASW Code identifies professional self-care as paramount for competent and ethical practice [23,24]. Protective strategies include regular supervision or peer consultation, debriefing after patient deaths, reflection on one's own losses and attitudes toward death, reasonable limits on workload, and self-awareness practices [47].
The clinician/patient discussion about end-of-life care is often a challenge and one that can be further complicated when the patient's cultural norms differ from those of the clinician. As discussed, values of medical care emphasize autonomy and individual rights to make life choices [49]. The Patient Self Determination Act of 1990 ensured that those rights are protected. This includes the rights to treatment choices, informed consent, truth telling, open communication with healthcare providers, and control over the individual's own life and death [49,50]. However, these core values may be in conflict with the values of many ethnic and culturally diverse groups in the United States and may lead to health disparities, fragmented care, inadequate or inappropriate symptom management, miscommunication with the patient and family, and a difficult and poor death for the patient [49].
Enhanced cultural competency in end-of-life issues continues to be identified as a need for clinicians who provide care for patients at the end of life [49]. Healthcare providers should understand and recognize the specific influences that culture has on a patient's behavior, attitudes, preferences, and decisions about end-of-life care. It is important to note that a patient's identification as a member of a particular ethnic group or religion does not necessarily mean that the patient or patient's family adheres to beliefs associated with that ethnicity or religion [49]. Other factors (e.g., age, race, sex, ethnicity, health status, religion) also can influence how patients approach the end of life, and their cultural and religious backgrounds influence their definitions of and perceptions about what constitutes quality of life, suffering, and pain [51].
It is important to pair cultural competence with cultural humility, which has been described as a lifelong commitment to self-evaluation and self-critique, to addressing power imbalances in the clinician-patient relationship, and to developing partnerships with communities [52]. Rather than relying on generalizations about particular groups, the clinician approaches each patient and family as the experts on their own beliefs and values. NASW's cultural competence standards similarly emphasize awareness of one's own cultural identity and biases, and the NASW Code was amended in 2021 to call on social workers to demonstrate cultural humility through critical self-reflection [23,53].
Other areas of end-of-life care that vary culturally include the method used for communicating "bad news," the locus of decision making, and attitudes toward advance directives and end-of-life care specifics [54]. In contrast to the emphasis on "truth telling" in the United States, it is not uncommon for healthcare professionals outside the United States to conceal serious diagnoses from patients, because disclosure of serious illness may be viewed as disrespectful, impolite, or even harmful to the patient. The emphasis on patient autonomy may conflict with the patient's preferences for family-based, physician-based, or shared family-physician-based decision making. Lower rates of completion of advance directives by patients of some ethnic backgrounds suggest a distrust of the healthcare system, healthcare disparities, and underutilization of health care [54,55,56].
An assessment should be made of how acculturated a patient and family are, their language skills, and whether an interpreter is needed [49]. The clinician should assess for [57]:
Openness/willingness of the patient/family to discussing/accepting the diagnosis, prognosis, and death
How decisions are made and what influences decision making (e.g., age, gender, hierarchy, quality of interfamily communication)
Meaning of the physical pain and how it should be managed
Presence of spiritual pain (Does the patient desire the help of a spiritual advisor? Does the patient/family want time and space for praying, meditation, and other rituals?)
The relevance of religious beliefs regarding the meaning of death
How the body should be handled following death
The clinician also can take advantage of available resources, including community or religious leaders, family members, and language translators [57]. It is important to note that using professional interpreters for patients with limited English proficiency will help ensure quality care. Convenience and cost lead many clinicians to use "ad hoc" interpreters (e.g., family members, friends, bilingual staff members) instead of professional interpreters. However, professional interpreters are preferred for several reasons. Several states have laws about who can interpret medical information for a patient, so healthcare professionals should check with their state's health officials about the use of ad hoc interpreters [58]. Even when allowed by law, the use of a patient's family member or friend as an interpreter should be avoided, as the patient may not be as forthcoming with information and the family member or friend may not remain objective [58]. Children should especially be avoided as interpreters, as their understanding of medical language is limited, and they may filter information to protect their parents or other adult family members [58]. Individuals with limited English language skills have actually indicated a preference for professional interpreters rather than family members [59].
Also important is the fact that clinical consequences are more likely with ad hoc interpreters than with professional interpreters [60]. A systematic review of the literature showed that the use of professional interpreters facilitates a broader understanding and leads to better clinical care than the use of ad hoc interpreters, and many studies have demonstrated that the lack of an interpreter for patients with limited English proficiency compromises the quality of care. The use of professional interpreters improves communication (fewer errors and better comprehension), utilization, clinical outcomes, and patient satisfaction with care [58,61]. One review of case studies regarding professional interpretation noted that "patients with limited English proficiency in the United States have a legal right to access language services, and clinicians have legal and ethical responsibilities to communicate through qualified interpreters when caring for these patients" [62]. These obligations arise principally under Title VI of the Civil Rights Act of 1964, which prohibits national origin discrimination by recipients of federal financial assistance, and Section 1557 of the Affordable Care Act, whose implementing regulations require covered health programs to take reasonable steps to provide meaningful access to individuals with limited English proficiency, including the use of qualified interpreters [63].
Culturally competent counseling for patients at the end of life begins with understanding their differing cultural, religious, and other important influential factors. It involves listening to and learning about patients' varying attitudes, preferences, and practices in order to integrate them into an appropriate plan of care [64]. Clinicians should treat all patients with dignity, respecting their rich cultural traditions and incorporating them into the plan of care. It means communicating with the patient and the patient's family in advance about how the plan of care is aligned with their beliefs, concerns, values, and preferences [51]. To deny the expression of different cultural worldviews in the context of end-of-life care would be to rob patients of the security and serenity that their cultural beliefs give them when faced with uncertainty and fear [65].
Certain groups face distinct ethical and legal considerations at the end of life.
Because decision-making capacity declines over time, advance care planning should begin as soon as possible after diagnosis of dementia. Standard advance directives often do not address the decisions that arise in moderate-to-severe dementia (e.g., hand feeding, treatment of infections, hospitalization), and dementia-specific directives have been developed to fill this gap [66].
Minors generally cannot give legal consent, but ethical practice calls for seeking the child's or adolescent's assent in a developmentally appropriate way and giving increasing weight to the preferences of older adolescents [67]. State law determines when minors may consent to their own care, including some mental health treatment.
A diagnosis does not establish incapacity. Capacity should be assessed for the specific decision, with supports (e.g., plain language, visual aids, trusted support persons) provided to maximize the person's participation. Some states recognize supported decision-making agreements as an alternative to guardianship, and PADs can help people with serious mental illness plan ahead.
LGBTQ+ older adults are more likely than their heterosexual peers to live alone and to rely on partners and chosen family for support, and these individuals may not be recognized under default surrogate statutes [11,68]. Encouraging formal appointment of a healthcare agent helps ensure that the patient's chosen decision maker has legal authority.
End-of-life care requires clinicians to navigate complex clinical, ethical, legal, cultural, and interpersonal considerations while keeping the patient's values and preferences at the center of decision making. Advance care planning, clear documentation, careful assessment of decision-making capacity, and effective collaboration with surrogates and the interprofessional team can help ensure that care remains consistent with the patient's goals. Clinicians must also understand the boundaries of their professional roles, applicable state laws and institutional policies, confidentiality obligations, mandated reporting requirements, and the ethical standards of their disciplines.
Competent end-of-life practice extends beyond legal compliance. It requires cultural humility, compassionate communication, respect for diverse approaches to illness and death, and thoughtful attention to the needs of families, caregivers, and special populations. When ethical uncertainty or conflict arises, consultation with supervisors, ethics committees, legal counsel, and other members of the healthcare team can support a careful and defensible course of action. By combining professional competence with empathy, self-awareness, and respect for patient autonomy and dignity, clinicians can help patients and their loved ones approach the end of life with greater clarity, support, and confidence.
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