RSS-Feed abonnieren
DOI: 10.1055/s-0044-1787775
Exploring Ethical Dimensions in Neuropalliative Care
Abstract
Neurologic illnesses can be challenging to diagnose, involve changes in consciousness, and are often complicated by prognostic uncertainty. These disorders can affect how individuals interact with their environment, and as a result, many ethical concerns may arise related to their medical care. Key ethical issues in neuropalliative care include shared decision-making, evolving autonomy and capacity, best interest and harm principles, beneficence and nonmaleficence, futile and inappropriate care, justice and equity, and ableism. The four core principles of medical ethics, beneficence, nonmaleficence, justice, and autonomy, are foundational in considering approaches to these ethical challenges. Shared decision-making is rooted in the principle of autonomy. Evolving autonomy and capacity evoke autonomy, beneficence, and nonmaleficence. The best interest and harm principles are rooted in beneficence and nonmaleficence. Questions of futility and inappropriate care are founded in the principles of nonmaleficence, autonomy, and justice. Ableism invokes questions of nonmaleficence, autonomy, and justice. Practitioners of neurology will encounter ethical challenges in their practice. Framing decisions around the core ethical principles of beneficence, nonmaleficence, autonomy, and justice will help clinicians navigate challenging situations while acknowledging and respecting each patient's individual story.
Publikationsverlauf
Artikel online veröffentlicht:
24. Juni 2024
© 2024. Thieme. All rights reserved.
Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA
-
References
- 1 Varkey B. Principles of clinical ethics and their application to practice. Med Princ Pract 2021; 30 (01) 17-28
- 2 Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 7th ed. Oxford University Press;; 2013
- 3 Iezzoni LI. Cancer detection, diagnosis, and treatment for adults with disabilities. Lancet Oncol 2022; 23 (04) e164-e173
- 4 Elwyn G, Frosch D, Thomson R. et al. Shared decision making: a model for clinical practice. J Gen Intern Med 2012; 27 (10) 1361-1367
- 5 Largent EA, Peterson A, Karlawish J. Supported decision making: facilitating the self-determination of persons living with Alzheimer's and related diseases. J Am Geriatr Soc 2023; 71 (11) 3566-3573
- 6 Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth 2004; 25 (04) 243-264
- 7 Kon AA, Shepard EK, Sederstrom NO. et al. Defining futile and potentially inappropriate interventions: a policy statement from the Society of Critical Care Medicine Ethics Committee. Crit Care Med 2016; 44 (09) 1769-1774
- 8 Lindsay S, Patel S, Ragunathan S, Fuentes K. Ableism among children and youth with acquired brain injury and their caregivers: a systematic review. Brain Inj 2023; 37 (08) 714-725
- 9 Varelius J. The value of autonomy in medical ethics. Med Health Care Philos 2006; 9 (03) 377-388
- 10 Orioles A, Morrison WE. Medical ethics in pediatric critical care. Crit Care Clin 2013; 29 (02) 359-375
- 11 Sullivan LS, Adler M, Arenth J, Ozark S, Vaughan L. Shared decision-making in palliative care: a maternalistic approach. Narrat Inq Bioeth 2021; 11 (02) 211-220
- 12 Kon AA. The shared decision-making continuum. JAMA 2010; 304 (08) 903-904
- 13 Kruser JM, Nabozny MJ, Steffens NM. et al. “Best case/worst case”: qualitative evaluation of a novel communication tool for difficult in-the-moment surgical decisions. J Am Geriatr Soc 2015; 63 (09) 1805-1811
- 14 Barstow C, Shahan B, Roberts M. Evaluating medical decision-making capacity in practice. Am Fam Physician 2018; 98 (01) 40-46
- 15 Diekema DS. Adolescent brain development and medical decision-making. Pediatrics 2020; 146 (Suppl. 01) S18-S24
- 16 Ross LF. Against the tide: arguments against respecting a minor's refusal of efficacious life-saving treatment. Camb Q Healthc Ethics 2009; 18 (03) 302-315 , discussion 315–322
- 17 Advance care planning: Ensuring your wishes are known and honored if you are unable to speak for yourself. CDC Healthy Aging Program. Accessed June 6, 2024 at: https://www.cdc.gov/aging/pdf/advanced-care-planning-critical-issue-brief.pdf
- 18 U.S. Supreme Court. Cruzan v. Director, Missouri Department of Health. Wests Supreme Court Report 1990; 110: 2841-2892
- 19 Prince v. Massachusetts, 321 U.S. 158. Justia Law; 1944 . Accessed December 14, 2023 at: https://supreme.justia.com/cases/federal/us/321/158/
- 20 Abend N, Helfaer M. Pediatric Neurocritical Care. 1st ed. Demos Medical Publishing, LLC;; 2013
- 21 Russell JA, Epstein LG, Bonnie RJ. et al; Ethics, Law, and Humanities Committee (a joint committee of the AAN, ANA, and CNS), Ethics, Law and Humanities Committee, a joint committee of the AAN, ANA and CNS. Lawful physician-hastened death: AAN position statement. Neurology 2018; 90 (09) 420-422
- 22 Gerson SM, Preston NJ, Bingley AF. Medical aid in dying, hastened death, and suicide: a qualitative study of hospice professionals' experiences from Washington State. J Pain Symptom Manage 2020; 59 (03) 679-686.e1
- 23 Goelitz A. Suicidal ideation at end-of-life: the palliative care team's role. Palliat Support Care 2003; 1 (03) 275-278
- 24 Gramaglia C, Calati R, Zeppegno P. Rational suicide in late life: a systematic review of the literature. Medicina (Kaunas) 2019; 55 (10) 656
- 25 Section on Bioethics, American Academy of Pediatrics. Diekema DS, Leuthner SR, Vizcarrondo FE, eds. American Academy of Pediatrics Bioethics Resident Curriculum: Case-Based Teaching Guides. Revised 2017. Accessed June 6, 2024 at: http://www.aap.org/sections/bioethics/default.cfm
- 26 Greer DM, Kirschen MP, Lewis A. et al. Pediatric and adult brain death/death by neurologic criteria consensus guideline. Neurology 2023; 101 (24) 1112-1132
- 27 Truog RD. Defining death: lessons from the case of Jahi McMath. Pediatrics 2020; 146 (Suppl. 01) S75-S80
- 28 Truog RD, Tasker RC. COUNTERPOINT: should informed consent be required for apnea testing in patients with suspected brain death? Yes. Chest 2017; 152 (04) 702-704
- 29 Biel S, Durrant J. Controversies in brain death declaration: legal and ethical implications in the ICU. Curr Treat Options Neurol 2020; 22 (04) 12
- 30 Rothstein R. The color of law: a forgotten history of how our government segregated America. First published as a Liveright paperback 2018. Liveright Publishing Corporation, a division of W.W. Norton & Company; 2018
- 31 US Dept of Health and Human Services. Access to health services literature summary. Healthy People 2030. Accessed November 28, 2023 at: https://health.gov/healthypeople/priority-areas/social-determinants-health/literature-summaries/access-health-services
- 32 US Dept of Health and Human Services. Health literacy literature summary. Healthy People 2030. Accessed November 28, 2023 at: https://health.gov/healthypeople/priority-areas/social-determinants-health/literature-summaries/health-literacy
- 33 Wilson E, Chen AH, Grumbach K, Wang F, Fernandez A. Effects of limited English proficiency and physician language on health care comprehension. J Gen Intern Med 2005; 20 (09) 800-806
- 34 Divi C, Koss RG, Schmaltz SP, Loeb JM. Language proficiency and adverse events in US hospitals: a pilot study. Int J Qual Health Care 2007; 19 (02) 60-67
- 35 Truog RD, Brown SD, Browning D. et al. Microethics: the ethics of everyday clinical practice. Hastings Cent Rep 2015; 45 (01) 11-17
- 36 Race Forward. What is racial equity? Race Forward. Accessed May 31, 2024 at: https://www.raceforward.org/resources/what-racial-equity-1
- 37 Egede LE, Walker RJ, Campbell JA, Linde S, Hawks LC, Burgess KM. Modern day consequences of historic redlining: finding a path forward. J Gen Intern Med 2023; 38 (06) 1534-1537
- 38 Christakis DA, Iezzoni LI. Calling on the USPSTF to address ableism and structural ableism. JAMA 2023; 330 (14) 1327-1328
- 39 Bogetz JF, Lewis H, Trowbridge A, Jonas D, Hauer J, Wilfond BS. From monochromatic to technicolor: parent perspectives on challenges and approaches to seeing children with severe neurological impairment holistically. J Palliat Med 2022; 25 (03) 437-444
- 40 Fontalis A, Prousali E, Kulkarni K. Euthanasia and assisted dying: what is the current position and what are the key arguments informing the debate?. J R Soc Med 2018; 111 (11) 407-413
- 41 Canada H. Medical assistance in dying: overview. June 16, 2016 . Accessed January 3, 2024 at: https://www.canada.ca/en/health-canada/services/health-services-benefits/medical-assistance-dying.html
- 42 Hurst SA, Mauron A. Assisted suicide and euthanasia in Switzerland: allowing a role for non-physicians. BMJ 2003; 326 (7383) 271-273