Ethics Consultations in Neuro-Oncology

Abstract Background Management of patients with brain tumors can lead to ethical and decisional dilemmas. The aim of this study was to characterize ethical conflicts encountered in neuro-oncologic patients. Methods Retrospective review of ethics consultations performed upon patients with primary and metastatic brain tumors at a tertiary cancer center. An ethics consultation database was examined to characterize ethical conflicts, contextual factors, and interventions by the consultation team. Results Fifty consultations were reviewed; 28(56%) patients were women, median age 54 (range 4-86); 27(54%) patients had a primary central nervous system malignancy; 20(40%) had brain metastasis. At the time of consultations, 41(82%) patients lacked decisional capacity; 48(96%) had a designated surrogate decision maker; 3(6%) had an advance directive outlining wishes regarding medical treatment; 12(24%) had a Do Not Attempt Resuscitation (DNAR) order. Ethical conflicts centered upon management of end-of-life (EOL) circumstances in 37(72%) of cases; of these, 30 did not have decisional capacity. The most common ethical issues were DNAR status, surrogate decision making, and request for non-beneficial treatment. Consultants resolved conflicts by facilitating decision making for incapacitated patients in 30(60%) cases, communication between conflicting parties in 10(20%), and re-articulation of patients’ previously stated wishes in 6(12%). Conclusions Decisional capacity at EOL represents the primary ethical challenge in care of neuro-oncologic patients. Incomplete awareness among surrogate decision makers of patients’ prognosis and preferences contributes to communication gaps and dilemmas. Early facilitation of communication between patients, caregivers, and medical providers may prevent or mitigate conflicts and allow enactment of patients’ goals and values.

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Ethics consultations in patients with neuro-oncologic diseases.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.e13519 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. e13519-e13519

Author(s):

Ugur Sener ◽

Elizabeth C. Neil ◽

Alan Carver ◽

Eli L. Diamond ◽

Louis Voigt

Keyword(s):

Decision Making ◽

Family Conflict ◽

End Of Life Care ◽

Ethical Issues ◽

Ethics Consultation ◽

Surrogate Decision Making ◽

Life Care ◽

Ethical Conflicts ◽

Surrogate Decision ◽

Oncologic Diseases

e13519 Background: In patients with cancer, ethical issues regarding patient autonomy, surrogate decision making, and end-of-life care often arise. Ethics consultation can help clarify perspectives of different stakeholders involved in a patient’s care, facilitate communication, and resolve conflicts. Neurologic manifestations of cancer can cause impairment of cognition, communication, and functional independence. Ethical conflicts in the specific context of neuro-oncologic diseases have yet to be characterized. Methods: In this retrospective study, we reviewed 50 cases where ethics consultation was requested for patients with neurologic malignancies or neurologic complications of cancer treated at Memorial Sloan Kettering Cancer Center (MSK). Results: Of 50 patients (ages 4-76, 56% female) reviewed, 27 had a primary central nervous system (CNS) malignancy, 21 had CNS metastasis, one had a vascular malformation, and one had no clear diagnosis. Neurologic issues contributing to patients’ clinical status included toxic metabolic encephalopathy (14), leptomeningeal disease (10), intracerebral hemorrhage (10), hydrocephalus (9), seizures (6), cord compression (5), and ischemic stroke (3). At the time of ethics consultation, 39 patients lacked decision-making capacity, 47 did not have an advance directive, and 38 did not have a do not resuscitate (DNR) order. Ethical issues identified included surrogate decision making (20), DNR (18), capacity (6), refusal of treatment (5), futility (4), brain death (4), and research ethics (2). Contextual issues included staff-family conflict (22), cultural or religious considerations (10), intra-family conflict (7), intra-staff conflict (6), and physician attitude toward treatment (3). Conclusions: Neuro-oncologic diseases present a unique constellation of ethical conflicts, particularly about end-of-life care. Language and cognitive deficits, impaired decision-making, and sudden neurological decline are factors that shape ethical conflicts in this clinical setting. Further study of ethical issues in neuro-oncology may help patients receive care that is consistent with their goals and values.

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Ethical issues in neurology

Advocacy in Neurology ◽

10.1093/med/9780198796039.003.0004 ◽

2019 ◽

pp. 41-52

Author(s):

Jan J. Heimans

Keyword(s):

Decision Making ◽

Cognitive Functioning ◽

Ethical Issues ◽

Vegetative State ◽

Persistent Vegetative State ◽

Brain Dysfunction ◽

Emotional Disturbances ◽

Neurologic Diseases ◽

Surrogate Decision

Neurologic diseases may lead to brain dysfunction and consequently to impairment of consciousness, cognitive decline, and emotional disturbances. These conditions may give rise to a wide array of ethical issues. Cerebral dysfunction can be temporary but many conditions are chronic and/or progressive, and the impact of such long-lasting brain dysfunction on decision-making processes is substantial. In this chapter, disturbances of consciousness and the decision-making process, with focus on communication during the various stages of coma, persistent vegetative state, and permanent vegetative state, are discussed. Special attention is paid to the role of proxies, who often have to act as surrogate decision-makers. Further, some aspects of brain death and organ donation are reviewed and the role of the neurologist as a specialist with respect to brain functioning, but also as an advocate acting in the interest of the patient and the patients’ relatives is depicted. Subsequently, consequences of impaired decision-making capacity in dementia and other diseases leading to diminished cognitive functioning are discussed and a short reflection is dedicated to driving ability. Ultimately, ethical issues in connection with decisions on withdrawing and withholding life-sustaining treatment including end-of-life decisions are discussed, both in neurologic diseases with diminished cognitive functioning but also in neurologic disorders, like motor neuron disease, where cognitive functions are preserved.

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Physicians’ and nurses’ expectations and objections toward a clinical ethics committee

Nursing Ethics ◽

10.1177/0969733013478308 ◽

2013 ◽

Vol 20 (7) ◽

pp. 771-783 ◽

Cited By ~ 9

Author(s):

Maximiliane Jansky ◽

Gabriella Marx ◽

Friedemann Nauck ◽

Bernd Alt-Epping

Keyword(s):

Clinical Ethics ◽

Ethical Issues ◽

Ethics Consultation ◽

Ethics Committees ◽

Ethics Committee ◽

University Hospital ◽

Sufficient Information ◽

Interprofessional Communication ◽

Clinical Ethics Committee ◽

Ethical Conflicts

The study aimed to explore the subjective need of healthcare professionals for ethics consultation, their experience with ethical conflicts, and expectations and objections toward a Clinical Ethics Committee. Staff at a university hospital took part in a survey (January to June 2010) using a questionnaire with open and closed questions. Descriptive data for physicians and nurses (response rate = 13.5%, n = 101) are presented. Physicians and nurses reported similar high frequencies of ethical conflicts but rated the relevance of ethical issues differently. Nurses stated ethical issues as less important to physicians than to themselves. Ethical conflicts were mostly discussed with staff from one’s own profession. Respondents predominantly expected the Clinical Ethics Committee to provide competent support. Mostly, nurses feared it might have no influence on clinical practice. Findings suggest that experiences of ethical conflicts might reflect interprofessional communication patterns. Expectations and objections against Clinical Ethics Committees were multifaceted, and should be overcome by providing sufficient information. The Clinical Ethics Committee needs to take different perspectives of professions into account.

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Ethics

Oncology ◽

10.4018/978-1-5225-0549-5.ch028 ◽

2017 ◽

pp. 728-738

Author(s):

Natalia S. Ivascu ◽

Sheida Tabaie ◽

Ellen C. Meltzer

Keyword(s):

Decision Making ◽

Critical Care ◽

Informed Consent ◽

Ethical Issues ◽

Surrogate Decision Making ◽

Ethical Problems ◽

Decision Making Capacity ◽

Surgical Critical Care ◽

Surrogate Decision ◽

Special Circumstances

In all areas of medicine physicians are confronted with a myriad ethical problems. It is important that intensivists are well versed on ethical issues that commonly arise in the critical care setting. This chapter will serve to provide a review of common topics, including informed consent, decision-making capacity, and surrogate decision-making. It will also highlight special circumstances related to cardiac surgical critical care, including ethical concerns associated with emerging technologies in cardiac care.

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The Decision to Limit or Withdraw Specific Therapies for Advanced Cancer and Hematological Malignancies: Physicians and Patients Points of View and Interactions.

Blood ◽

10.1182/blood.v118.21.2076.2076 ◽

2011 ◽

Vol 118 (21) ◽

pp. 2076-2076

Author(s):

Yvan Beaussant ◽

Lionel Pazart ◽

Christophe Tournigand ◽

Florence Mathieu-Nicot ◽

Elodie Cretin ◽

...

Keyword(s):

Decision Making ◽

Advanced Cancer ◽

Decision Process ◽

Primary Care Physicians ◽

Ethical Issues ◽

Conflicts Of Interest ◽

Hospitalized Patients ◽

Care Staff ◽

Cancer Center ◽

Points Of View

Abstract Abstract 2076 Context: The decision to limit or withdraw specific therapies (DLWT) in patients with advanced cancer is a complex process that is always painful for patients, relatives and professionals. For more than 10 years, shared decision making has been more and more emphasized. However, few data in the literature rely on clinical research. In order to understand their difficulties and issues, this study explores the determinants and modalities of DLWT and analyses the feasibility of different methods for investigating this decision making process. Method: We conducted a multi-center pilot study in oncology and hematology units of 5 institutions: 2 university hospitals, 1 general hospital, 1 cancer center and 1 private hospital. The study included two different approaches: an epidemiological section to identify the prevalence of these situations in different institutions and a qualitative study section exploring factors influencing the decision process. The epidemiological analysis included all hospitalized patients identified with advanced cancer for whom the question of DLWT was raised in a given week or during the two weeks preceding the investigation. The qualitative analysis was based on interviews with the referent oncologist (or hematologist) and his patient (conducted by a physician and a psychologist respectively) as well as interviews with other partners involved in the situation (care staff and relatives) depending on the center. Researchers also participated in multidisciplinary meetings and monitored changes in the decision over a three month period. Results: Of the 839 patients hospitalized in the inclusion week, the question of DLWT was raised in 3.5% of cases (no=30) and in 14.3% (no=27 of 188 patients) when excluding outpatients. All primary care physicians and 70% (no=21) of patients were questioned in interviews. Subjective determinants related to the physician/patient relationship, and their respective experiences seemed predominant in DLWT. Futility and poor general condition were the most frequently cited reasons to limit or withdraw specific therapies. The complexity of the DLWT was linked primarily to the uncertainty of benefit-risk balance, emotional aspects, communication issues and possible discrepancies between physician and patients' expectations. A mirror analysis of the two points of view indicated that the personal experience of physicians and patients, pertaining to the withdrawal of specific therapies, was often discerned as a failure or an abandonment of care. Patients' involvement in DLWT was often hindered by the complex communication in the end of life period. Communication training of health professionals, involvement of care staff and relatives, and early palliative care were factors facilitating the decision process. Discussion and Conclusions: This study demonstrates the feasibility of a multi-disciplinary qualitative approach to explore the DLWT process that is acceptable for physicians and patients. It shows the frequency of this type of questioning in hospitalized patients (about 15%) and proposes a pertinent analysis to understand these difficult and poorly investigated situations, in which uncertainty brings the subjectivity of each person to the heart of major ethical issues. This preliminary work prompts us to build a prospective study to develop and evaluate tools and training programs which could support the ethical questioning and decisions in these situations. Disclosures: No relevant conflicts of interest to declare.

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Ethical Challenges in Independent Living Donor Advocacy

Progress in Transplantation ◽

10.1177/15269248211024600 ◽

2021 ◽

pp. 152692482110246

Author(s):

Sarah B. Vittone ◽

Nancy A. Crowell

Keyword(s):

Decision Making ◽

Independent Living ◽

Living Donor ◽

Ethical Decision Making ◽

Ethical Issues ◽

Ethical Challenge ◽

Ethical Challenges ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Research Questions

The Independent Living Donor Advocate, who is required on the transplant team, advocates, promotes, and protects the interests of the donor. Previously described ethical challenges perceived by these advocates and the variability of their responses prompted further inquiry. Research Questions: How are ethical obligations perceived by ILDAs? What ethical principles do ILDAs identify as the basis of their decision making? What are the ethical challenges for ILDAs? Study Design: A descriptive cross-sectional survey was designed and administered via REDCap. Participants were recruited from the National Kidney Foundation Living Donor Advocate email list. Quantitative and qualitative data on their role, ethical decision making, and perceived ethical issues, by seriousness and frequency, were collected. Results: Thirty-four participants responded. Nonmaleficence was ranked as the primary ethical principle used in decision making. Participants rated obligations to protect higher than advocacy. Participants reported experiencing internal ethical conflict to protect over advocate for the donor. The most serious ethical challenge participants perceived for donors was their decisional capacity, followed by their emotional or psychological distress, which was also described as a frequent donor challenge experienced in their role. Discussion: The results of this survey validate previous descriptions that the advocate role is largely perceived as protective. Their independent nature as well as the inherent vulnerabilities of the potential living donor compels the continued mitigation of ethical challenges, to enhance advocacy and protection for the living donor.

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Ethics

Healthcare Ethics and Training ◽

10.4018/978-1-5225-2237-9.ch001 ◽

2017 ◽

pp. 1-11

Author(s):

Natalia S. Ivascu ◽

Sheida Tabaie ◽

Ellen C. Meltzer

Keyword(s):

Decision Making ◽

Critical Care ◽

Informed Consent ◽

Ethical Issues ◽

Surrogate Decision Making ◽

Ethical Problems ◽

Decision Making Capacity ◽

Surgical Critical Care ◽

Surrogate Decision ◽

Special Circumstances

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Ethics

Advances in Medical Technologies and Clinical Practice - Modern Concepts and Practices in Cardiothoracic Critical Care ◽

10.4018/978-1-4666-8603-8.ch006 ◽

2015 ◽

pp. 124-134

Author(s):

Natalia S. Ivascu ◽

Sheida Tabaie ◽

Ellen C. Meltzer

Keyword(s):

Decision Making ◽

Critical Care ◽

Informed Consent ◽

Ethical Issues ◽

Surrogate Decision Making ◽

Ethical Problems ◽

Decision Making Capacity ◽

Surgical Critical Care ◽

Surrogate Decision ◽

Special Circumstances

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Ethical Conflicts in Surrogate Decision Making

Difficult Decisions in Surgery: An Evidence-Based Approach - Difficult Decisions in Surgical Ethics ◽

10.1007/978-3-030-84625-1_39 ◽

2022 ◽

pp. 553-567

Author(s):

Leah Conant ◽

Piroska Kopar

Keyword(s):

Decision Making ◽

Surrogate Decision Making ◽

Ethical Conflicts ◽

Surrogate Decision

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Ethics

Specialty Competencies in Geropsychology ◽

10.1093/med:psych/9780195385670.003.0009 ◽

2011 ◽

pp. 115-142 ◽

Cited By ~ 1

Author(s):

Michele J. Karel

Keyword(s):

Older Adults ◽

Decision Making ◽

Older Adult ◽

Ethical Decision Making ◽

Ethical Issues ◽

Detailed Review ◽

Decision Making Capacity ◽

Care Systems ◽

Surrogate Decision ◽

Fundamental Tension

Chapter 9 has three broad aims. Firstly it provides a detailed review of the foundational competencies for ethical geropsychology practice, including the fundamental tension between the values of respecting the autonomy versus protecting the safety of an older adult; the concept of decision-making capacity; the challenges of surrogate decision making; and legal, clinical, and social tools central to working with vulnerable older adults. It then covers specific ethical issues that can arise in psychological assessment, intervention, consultation, and research with older adults or care systems are identified, followed by a model for ethical decision making in geriatric care.

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