Content includes advance care planning, surrogate decision-making, regulatory and legal considerations, and related palliative care issues, focusing on ethical imperatives and processes to support patient autonomy.
Ethical principles are described and integrated into Domain 8 and a clear distinction is made that in all cases the surrogates are obligated to represent the patient’s preferences, not the surrogates’ preferences.
A rural hospital has no formal palliative care team, but the hospitalist physicians, physician assistants, advanced practice registered nurse, and hospital nurses, commit to developing and growing palliative care at their institution. They form a workgroup of interested hospital staff and community members. The hospital has seen a dramatic shift in the population served as its community has welcomed many Eastern European immigrants. Furthermore, the closure of the county hospital in the neighboring urban area has led to higher ethnic diversity than the hospital had known. Working through the NCP Guidelines, the palliative care workgroup recognizes that it should prioritize the diverse spiritual needs of patients who are seriously ill or dying in the hospital. The Ethics Committee also notes that many consultations have been related to cultural clashes involving spiritual beliefs and practices. The social work department works with the palliative care workgroup to identify spiritual care providers in the community who are available to come to the hospital as requested to meet the diverse needs of the patients. An educational series is held for all staff to increase understanding of the range of spiritual and religious traditions of community members. The hospital adopts a new policy on “Compassionate Care Near the End of Life” which incorporates key principles from the NCP Guidelines. The palliative care workgroup arranges to meet via videoconference with the palliative care specialty service at a regional hospital each quarter to discuss challenging cases.
6.4.5 When discussing diagnosis and/or prognosis, preferences regarding taboo language, as well as truth telling are respected, prioritizing fidelity to the patient (see Domain 8: Ethical and Legal Aspects of Care, including 8.4.6 for truth-telling with children and adolescents living with serious illness).
The palliative care interdisciplinary team (IDT) applies ethical principles to the care of patients with serious illness, including honoring patient preferences, as well as decisions made by legal proxies or surrogate decision-makers. It is important to note that in all cases surrogates’ obligations are to represent the patient’s preferences or best interests. Familiarity with local and state laws is needed relating to advance care planning, decisions regarding life-sustaining treatments, and evolving treatments with legal ramifications (eg, medical marijuana), especially when caring for vulnerable populations, such as minors, prisoners, or those with developmental disability or psychiatric illness.
The core ethical principles of autonomy, substituted judgment, beneficence, justice, and nonmaleficence underpin the provision of palliative care.
Criteria:
8.1.1 Palliative care in all care settings is modeled on and consistent with existing professional codes of ethics, conflicts of interest, scopes of practice, and standards of care for all relevant disciplines.
8.1.2 All IDT members have education in the fundamental ethical, legal, and regulatory principles guiding care of the seriously ill.
8.1.3 Clinicians aim to prevent, identify, and resolve ethical dilemmas common to the provision of palliative care, such as forgoing or discontinuing treatments, instituting do not resuscitate (DNR) orders or other state-specific portable medical orders (eg, POLST/MOLST), and the use of sedation of the imminently dying.
8.1.4 Ethical issues are documented, and referrals are made to ethics consultants or an ethics committee for case consultation and assistance in decision-making and conflict resolution, as needed.
8.1.5 Ethics consultants or committees guide policy development and provide staff education in areas, such as:
a. Medically non-beneficial care
b. A patient’s right to decline treatments of any kind
c. Cessation of medically provided nutrition and hydration
d. Foregoing or discontinuing technology (eg, ventilators, dialysis)
e. Use of high-dose medications
f. Sedation of the imminently dying
g. Requests for physician-assisted death
8.1.6 IDT protocols are developed to ensure patient and family access to ethics resources and support in all care settings.
8.1.7 IDT members maintain professional boundaries, setting clear role expectations with patients, family members, and caregivers, balancing objectivity with caring compassion.
8.1.8 Attention is paid to patient and family cultural and spiritual values that impact care preferences and potentially conflict with clinicians’ values. The IDT is aware that cultural factors can influence decision-making and autonomy (see Domain 6: Cultural Aspects of Care).
8.1.9 Guidance is provided to surrogate decision-makers about the legal and ethical basis for surrogate decision-making, including honoring the patient’s known preferences, substituted judgment, and best-interest criteria.
8.1.10 Social justice principles and costs of care are considered in the allocation of resources across all populations to improve the health outcomes of seriously ill people and address healthcare disparities.
8.1.11 IDTs without ready access to ethics consultation identify avenues to access consultations and resources (eg, consult with specialty palliative care experts or establish a collaborative relationship with a medical center ethics program).
8.1.12 Ensuring IDT sustainability and avoiding clinician burnout is considered an ethical obligation in all care settings to preserve team members’ health and ability to remain engaged in palliative care (see Domain 1: Structure and Processes of Care).
The provision of palliative care occurs in accordance with federal, state, and local regulations and laws, as well as current accepted standards of care and professional practice.
Criteria:
8.2.1 Clinicians who care for patients with serious illness are knowledgeable about organizational policies, as well as federal and state statutes, regulations, and laws regarding:
a. Disclosure of medical records and health information
b. Medical decision-making
c. Advance care planning and advance directives
d. The roles and responsibilities of surrogate decision-makers
e. Guardianship
f. Abuse and neglect
g. Concurrent hospice care provision for pediatric patients
h. Prescribing of controlled substances
i. Death pronouncement and death certification processes
j. Autopsy requests, organ and anatomical donation
k. Emerging issues (eg, medical marijuana, physician aid in dying, opioid abuse)
8.2.2 The IDT adheres to legal and regulatory requirements for disclosure, decision-making capacity assessment, confidentiality, and informed consent.
8.2.3 Attention is paid to the rights of children and adolescents in decision-making, as well as applicable statutes.
8.2.4 The IDT establishes and implements policies regarding:
a. IDT compliance with state and federal legal and regulatory requirements regarding patient and family abuse, neglect, suicidal ideation, self-harm, and potential harm to others
b. Conflicts of interest, including the receipt of gifts from patients, families, or other care providers
c. Care of and communication about minor patients in state custody, including involvement of biological, adoptive, or foster families in decision-making and treatment planning
d. Other emerging issues, as needed
8.2.5 Legal counsel is accessible to advise providers regarding common palliative care situations including, but not limited to:
a. Determination of capacity to make medical decisions
b. Safety and other considerations for patients without caregivers or support
c. Patient or family requests for care that is not medically indicated or may cause undue burden on the patient
d. Withdrawal of technology (eg, ventilators, dialysis, cardiac devices)
e. Cessation of medically provided oral nutrition and hydration
f. Sedation of the imminently dying
g. Requests for physician aid-in-dying
h. Patients who are in custody, on parole, or have other legal issues impacting their care
i. Children in foster care or protective custody
8.2.6 The IDT recognizes the role of cultural and spiritual factors in the application of professional obligations, including diagnosis, disclosure, decisional authority, acceptance of, and decisions to forgo treatments (see Domain 6: Cultural Aspects of Care).
8.2.7 Patients and families are routinely encouraged to create or update legal and financial documents, such as wills, guardianship agreements, and custody documents.
8.2.8 Clinicians are aware of legal guidelines and processes to determine and document when a patient has no surrogate (ie, the unbefriended patient), as well as the laws relevant to clinicians making care decisions for these patients.
The patient’s preferences and goals for medical care are elicited using core ethical principles and documented.
Criteria:
8.3.1 Clinicians discuss achievable goals of care in the context of patient values and preferences.
8.3.2 Advance care planning education is provided to the patient and family to promote communication and understanding of the patient’s preferences across the care continuum, including completion of advance directives, such as:
a. Designation of a surrogate health care decision-maker (except for minors)
b. Living wills
c. Inpatient and out-of-hospital do-not-resuscitate orders and other portable medical orders
8.3.3 The patient-expressed values, care preferences, spiritual beliefs, and cultural influences are elicited, routinely reviewed, and documented, with particular attention to changes in health care status or transitions of care.
8.3.4 Acknowledging that preferences change over time, the IDT revisits and updates a patient’s decisions and desires for care when the clinical status changes. All changes are documented in the medical record, especially prior to care transitions.
8.3.5 To ensure availability of advance care planning documents, the IDT uses electronic medical records or advance directive registries whenever possible. Clinicians ensure that the treatment plan is concordant with the patient’s evolving goals across settings.
8.3.6 Patients with disabilities are assumed to have decision-making capacity unless determined otherwise, according to applicable laws.
8.3.7 When caring for pediatric patients with serious illness, the child or adolescents’ views and preferences for medical care, including assent for treatment (when developmentally appropriate), are assessed, documented, and given appropriate weight in decision-making.
8.3.8 For patients who are not developmentally able, or have cognitive and/or communication impairment or incapacity, and have not previously expressed their values, preferences, or beliefs, IDT members follow state laws to identify a default decision-maker.
8.3.9 Clinicians consider the aspects of patient care that may burden or have ill effects on family members. The IDT has a responsibility to identify these difficulties when possible and within its scope of practice and assist in identifying resources to meet these needs.
Within the limits of applicable state and federal laws, current accepted standards of medical care, and professional standards of practice, person-centered goals form the basis for the plan of care and decisions related to providing, forgoing, and discontinuing treatments.
Criteria:
8.4.1 The patient’s plan of care reflects ethical principles and the assessment of treatment preferences. The plan of care is accurately documented to reflect the patient’s previously stated goals in terms of providing, forgoing, and discontinuing care.
8.4.2 The IDT ensures that existing treatments align with the patient’s goals and the standard practices of care, and the team actively works to prevent medically non-beneficial care.
8.4.3 When a family member or surrogate decision-maker seeks to override the patient’s documented treatment decisions, the patient’s preferences are reviewed, and ethics consultation is sought if needed.
8.4.4 Failure to honor patient preferences is considered an ethical concern and is addressed by the IDT.
8.4.5 Children receive open and honest, developmentally appropriate information about their serious illness and treatment options, and are given the opportunity to participate in decisionmaking according to their wishes, age, and developmental capacity. When the child’s wishes differ from those of the adult decision-maker, staff is available to assist the child and family work towards a resolution, prioritizing fidelity to the patient.
8.4.6 When parents or legal decision-makers express a strong preference for non-disclosure of a poor prognosis to a seriously ill child or adolescent, the IDT assesses family motivations and values regarding truth-telling practices and preferences. While it is sometimes ethically permissible to defer to family values regarding nondisclosure of prognosis, clinicians work collaboratively with the family to meet the child or adolescent’s individual needs while respecting the parent or decision-makers’ expectations and boundaries.
8.4.7 All treatments provided are directed at the relief of suffering, in accordance with the doctrine of double effect.
8.4.8 The IDT educates the patient and family regarding the cost of care and financial burdens associated with treatment options.
8.4.9 In cases where the wishes of the patient (or patient preferences expressed by the surrogate) conflict with the clinicians caring for the patient, processes are in place to honor clinician conscientious objection in a manner that ensures patients are never abandoned and continue to receive quality, safe care.
8.4.10 When treatments are forgone or discontinued, the IDT ensures appropriate symptom control at all times, as aligned with the ethical principle of nonmaleficence.
Clinical Implications
Ethical and legal principles are inherent to the provision of palliative care to patients with serious illness, including principles of self-determination, beneficence, nonmaleficence, and justice. Clinicians caring for seriously ill patients understand ethical principles underlying health care delivery in the context of their own professional practice setting and discipline, as well as the laws and statues governing health care. In all contexts, the IDT provides attention to moral agency and emphasis on collaborative practice. The IDT works to recognize and be mindful of its own values and beliefs when facilitating informed decisionmaking, and participating in ethical dilemma resolution. As the team works to maintain relationships with the patient and family, it also recognizes the importance of maintaining professional boundaries across all settings and contexts, regardless of patient age.
Operational Implications
Clinicians caring for seriously ill patients have access to legal and ethical experts for consultation to deliver high-quality palliative care regardless of setting or location of care. Conference calls and videoconferencing provides access to experts in all care settings.
Essential Palliative Care Skills Needed by All Clinicians
Many clinicians have studied medical ethics and understand the ethical principles most applicable at the end of life. All clinicians working with seriously ill patients benefit from learning about advance care planning and common scenarios that cause ethical and legal conflicts. In addition, all clinicians know how to access legal experts, ethicists, or ethics committees, as well as specialist-level palliative care teams, to ensure the provision of high-quality care in alignment with patient goals.
Key Research Evidence
The systematic review addressed the following key question: KQ8) What is the impact of advance care planning on substituted decision-making regarding life-sustaining treatments? Thirty-six systematic reviews were identified pertaining to KQ8. The evidence table in the systematic review describes the key findings of each included review. The summary of findings table summarizes the research evidence across identified reviews and describes the quality of evidence. The complete findings are published online in the Journal of Pain and Symptom Management (doi: 10.1016/j.jpainsymman.2018.09.008).
Practice Example D8-A
A long-term care setting is incorporating palliative care for patients in its day center, residential care, and long-term care programs. A physician assistant and social worker lead efforts to improve advance care planning and completion of formal directives. Varying levels of decision-making capacity pose a challenge to completing advance directives, and staff need help determining capacity. The facility develops a consultative relationship with a hospital-based palliative care team and ethics consult service for education on determination of capacity and help with challenging scenarios.
Practice Example D8-B
A community hospice regularly cares for patients who are discharged from the tertiary hospital. A number of these patients come to hospice without clear directives, often without clear understanding of their condition, prognosis, and what to expect in the future, sometimes leading to their continued desire for attempts at cardiopulmonary resuscitation at the time of death. Hospice staff are stressed by these situations and accuse the hospital teams of failing to get these patients and families “on the hospice page.” The groups meet to identify ways they can better manage care transitions for patients and families in general, and especially for patients without a do-not-resuscitate order. The hospice liaison begins to talk daily with the palliative care team to discuss ways to meet the needs of patients. This brings valuable context and history to patients’ care plans as they transition to hospice. The hospice team has a deeper appreciation for what the palliative team has done, and what patients are able (or unable) to understand and retain despite communication, and the palliative team is better equipped to communicate to the hospice team the patient’s level of understanding and preparation for hospice care.
Practice Example D8-C
A large, multi-site health system has reviewed its patient and family satisfaction reports, as well as staff surveys, to plan new initiatives. Staff surveys reveal feelings of inadequacy in how to best care for lesbian, gay, bisexual, transgender, queer, intersex, asexual (LGBTQIA) patients and their families. In some cases, staff voice distress in providing hands-on care for these patients, particularly when they are transgender. Staff members also highlight the challenges in navigating family conflicts, such as when the biological family is in overt conflict with the LGBTQIA partners or spouses. Some family members have also reported high levels of dissatisfaction at the time of death, and instances in which patients’ wishes were disregarded, partners/spouses were not notified of a change in patient status, or were excluded from family conferences despite clear patient directives about their wishes to have their partner/spouse involved. The health system addresses this gap in patient-centered care, asking for involvement from the palliative care service and ethics committee. The Human Resources Department Cultural Diversity committee, which had previously focused only on issues of ethnicity and race, has asked a local LGBTQIA center for consultation, education, and resources to effectively address the issues identified.
Practice Example D8-D
A rural palliative care program provides care in patients’ homes across a large geographic area. The staff is often alone on these visits and sometimes do not see other team members for several days at a time. Team members express stress with some of the ethical issues they confront, particularly when patients have impaired decision-making, when they receive requests for physician aid-in-dying, and when there are family conflicts. The program develops an ethics forum for education, discussion of challenging cases, and identification of practical measures for support. The forum is hosted online, so staff can either listen in or see each other via the computer. The program provides educational podcasts for team members. Leadership facilitates dual visits of the practitioners and social workers to help with challenging cases, and facilitate greater professional and team support.
Practice Example D8-E
A hospital-based pediatric palliative care team was approached by members of the pediatric intensive care unit (PICU) care team, who expressed that they were often uncomfortable with the ethical and legal implications of withdrawal of life-sustaining therapies. The PICU care team did not feel that issues including decision-making capacity of the patient, disclosures to the child, staff moral distress, and sedation of the imminently dying were consistently addressed prior to withdrawing the therapies. A multidisciplinary group, including members of the children’s hospital Ethics Committee, was convened to initiate the standardization of the withdrawal of life-sustaining therapies process that included addressing potential legal and ethical issues. The process included structured huddles, or team discussions, using a new withdrawal of life-sustaining therapies checklist to document decision-making in the medical record in real time. The checklist of items to be addressed included ensuring presence of child life, chaplaincy and social work, anticipatory symptom management strategies, confirmation with medical decisionmaker and, if appropriate, the patient. Following these interventions, staff reported improvement in team communication and reduction of distress surrounding withdrawal of life-sustaining therapies.
Practice Example D8-F
A community pediatric palliative care team routinely assesses parental and child/adolescent preferences regarding goals of care, working to meet each family’s individualized communication and decision-making needs. A teen with advanced cancer disclosed to the team that he no longer wanted chemotherapy and was ready to die, but he did not want to disappoint or anger his parents. The palliative care team acknowledged the teen’s honest expression of his wishes and provided support. With his permission, the team coordinated goals of care discussions with the parents separately, and subsequently with the parents and teen together. The palliative team also drew upon the expertise of their child life specialist, the teen’s oncology team at the hospital, along with the hospital’s pediatric ethics committee to facilitate a new plan that honored all family members’ needs.
Autonomy: “The principle of respect for autonomy is usually associated with allowing or enabling patients to make their own decisions about which health care interventions they will or will not receive.”5
Advance care planning documents: “…allow individuals to share their treatment preferences in the event they can no longer speak for themselves.” There are two kinds: legal documents and medical orders (eg, legal: living wills, health care surrogate; medical: do not resuscitate (DNR) orders, physician orders for life-sustaining treatment (POLST)).3
Beneficence: “The ethical principle of beneficence requires healthcare professionals to treat their patients in a way that provides maximum benefit to that patient.”6
Decision-making capacity: “Medical decision-making capacity refers to the time-sensitive determination of a patient’s ability to make a specific clinical choice.” 17 Thoughtful assessment of capacity is essential for providing care that preserves and respects a patient’s autonomy, while meeting the ethical and legal standards of informed consent.
Doctrine of double effect: “…draws a distinction between impermissible intended consequences and permissible (merely) foreseen consequences.” There are four conditions that are applied: 1) “the action itself (as distinct from its consequences or effects) must not be inherently morally wrong,” 2) “the intention must be to produce the good effect,” 3)“the good effect must not be brought about via the bad effect,” 4) “…there is an appropriate balance (ie, proportionality) between the good and the bad effects, such that the good effect must outweigh the bad.”19
Nonmaleficence: “Obligation not to inflict harm intentionally.”33
Substituted judgement: Substituted judgement refers to the ethical duty of guardians and surrogate decision-makers to make an effort to understand the patient’s beliefs and values prior to making decisions on the patient’s behalf.
Source
https://www.nationalcoalitionhpc.org/wp-content/uploads/2018/10/NCHPC-NCPGuidelines_4thED_web_FINAL.pdfIKA SYAMSUL HUDA MZ