Complex Moral Issues: End-of-Life Decisions for People with Significant Intellectual Disabilities

Reference Guide

This page contains over 40 articles that cover topics ranging from end-of-life decision-making and the quality of life for people with intellectual disabilities. Use the pull-down menu below to filter resources by focus area.

Communication Challenges

  • Cantor, Norman L. “The Voice of the Profoundly Disabled Person” in Making Medical Decisions for the Profoundly Mentally Disabled. Cambridge: MIT Press, 2005. 203-214.
    • This chapter discusses some of the ways in which a profoundly mentally disabled person can communicate preferences, satisfaction, and discomfort. Cantor points out the ambiguities of some of these communications, but he argues that surrogates should nonetheless make attempts (themselves or with the help of experts) to solicit and interpret patients’ reactions. Making these attempts is morally required of surrogates, and it  can prove fruitful by giving evidence of the patients’ desires. Cantor gives some guidance on how surrogates can use the sounds, gestures, and facial expressions of these patients to make informed decisions.
  • Tuffrey-Wijne, Irene & Linda McEnhill. “Communication Difficulties and Intellectual Disability in End-of-Life Care.” International Journal of Palliative Nursing, vol. 14, no. 4 (2008): 189-194.
    • These authors present research on the difficulties of communicating information to intellectually disabled individuals, such as the time investment required as well as the high rate of misunderstandings. They provide a number of recommendations for using clear, unambiguous language with these patients.

Disability Advocacy

  • Asch, Adrienne. “Disability, Bioethics, and Human Rights” in Handbook for Disability Studies. Eds. Gary L. Albrecht, Katherine D. Seelman, & Michael Bury. Thousand Oaks: Sage Publications, 2001: 297-326.
    • Asch delineates the goals of bioethics and disability advocacy and the role of human rights language in protecting individuals in medical settings. She analyzes some controversial court decisions that had important implications for the disabled community. She also outlines several ethical challenges in different realms of medicine, such as end-of-life decision-making.
  • Berns, Peter. “An Open Letter to the Dr. Phil Show: People with Disabilities Have a Voice.” 
    • The Arc Blog. The Arc, 18 May 2012. Web. Accessed 3 August 2012.
      This letter is in response to Dr. Phil’s “Deadly Consequences” show in which two of his guests were individuals with profound intellectual disabilities. The letter argues that the show gave a false and biased impression about the quality of life and communication abilities of individuals with developmental disabilities.
  • Carlson, David, Cindy Smith, & Nachama Wilker. Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights. Washington, DC: National Disability Rights Network, 2012.
    • This advocacy document has chapters devoted to the historical development of human rights protections for disabled individuals, growth attenuation and sterilization, withholding life-sustaining treatment, background on the disability movement, perspectives of disabled individuals, an argument that civil rights conflict with certain medical procedures, and recommendations put together by expert panels. The document includes a brief survey of relevant state and federal legislation, along with personal stories and testimonies from individuals with a range of disabilities and experiences in health care.
  • Jenny Hatch Justice Project. Supported Decision-Making: An Agenda for Action. 2013. Online publication.
    • This report is the result of the JHJP’s First Annual Symposium, which brought together 65 national and international leaders on disability issues. The report argues that individuals with cognitive disabilities can be subjected to overbroad guardianship. They offer a number of action steps for advancing supported decision-making and integrating the first-person perspectives of disabled individuals.
  • Ouellette, Alicia. “The End of Life” in Bioethics and Disability: Towards a Disability-Conscious Bioethics. New York: Cambridge University Press, 2011. 271-314.
    • Ouellette provides a legal analysis of the cases of Terri Schiavo and Sheila Pouliot. Both of these women had severe disabilities, and end-of-life decisions were made for them with the assistance of court-appointed guardians (in both cases) and an ethics committee (in Pouliot’s case). She discusses opinions from the disability community and from the bioethics community on these cases. She scrutinizes law proposals (coming from disability advocates) that would limit the treatment options available to surrogates.
  • Parmenter, Trevor R. “Intellectual Disabilities—Quo Vadis?” in Handbook for Disability Studies. Eds. Gary L. Albrecht, Katherine D. Seelman, & Michael Bury. Thousand Oaks: Sage Publications, 2001: 267-297.
    • This chapter surveys historical attitude towards intellectual disability; he concludes that these individuals have been consistently denied personhood and devalued as members of humanity, as epitomized in the eugenics movement. The author describes the gradual shift in attitude that has started to include and recognize these individuals as persons who should be able to participate in human communities.

District of Columbia Procedures, Laws, Codes, Regulations and Case Law

Title 7 of the District of Columbia Official Code (“Citizens with Intellectual Disabilities”) sets forth the services to be made available to District residents with intellectual disabilities (ID) and mandates that people with ID be supported in a manner that develops each person’s abilities and potential “to the fullest possible extent, no matter how severe his or her degree of disability.”

Title 21 of the D.C. Code (“Fiduciary Relations and Persons with Mental Illness”) provides the statutory powers and duties of the guardian which can be exercised without special order of the Court.

D.C. Code § 21-2047.01 sets forth the limitations on a guardian’s authority and specifies that the guardian may seek authority from the Court to make otherwise prohibited decisions.

Filing for Guardianship/Conservatorship of an Adult in the District of Columbia.” Superior Court, DC. Office of the Register of Wills, Probate Division, Last updated April 2010: Contains the necessary paperwork to be filed in order to establish.

In re Genevieve Kelly, Int. 12-97 (J. Long, 3/22/00) and In re Theresa Pipkins, Int. 163-00 (J. Long, 8/15/00), holding that a general guardian has legal authority to consent to a DNR order without specific court authority.  Judge Burgess made a related finding regarding a limited medical guardian’s authority to consent to a DNR order without specific court authority in In re Barbara Carter, IDD. 295-06 (J. Burgess, 10/2/08), citing In re Genevieve Kelly.

In re Mollie Orshansky, 804 A.2d 1077 (D.C. App., 2002), concluding that the lower court abused  its discretion by not giving the ward’s advance planning instruments adequate consideration when appointing an attorney as guardian rather than family members named in the ward’s advance planning instruments.

In re Renee Atwater, No. 08-PR-1075, slip op. (D.C. App., 2010), affirming the Probate Court’s decision that it is an inherent conflict of interest for the ward’s appointed attorney in the Mental Habilitation Court to be appointed as the same ward’s limited health care guardian.

Guardianship: Guidance and Standards

  • Casasanto, Michael, Mitchell Simon & Judith Roman. “A Model Code of Ethics for Guardians.” Whittier Law Review, vol. 11 (1989): 543-567.
    • Originally written in the 1980’s, this Model Code of Ethics proposes an outline for how guardians can make decisions for their wards, including commentary.
  • Cesasanto, Michael D., Mitchen Simon, and Judith Roman. A Model Code of Ethics for Guardians. National Guardianship Association. 1988.
    • The authors describe the best interest standard, substituted judgment standard, and intermittent incompetence. The included model code delineates general decision-making principles, relationship between the guardian and ward, custody, consent to care, estate management, and termination and limitation of guardianship.
  • Clark, Elizabeth. “Substituted Judgment: Medical and Financial Decisions by Guardians.” Estate Planning, vol. 24, no. 2 (1997): 66-73.
    • In this article, the author explores the ways in which substituted judgment has been defined and determined in case law throughout the states.
  • National Guardianship Association. “Guardianship and Developmentally Disabled Individuals.”
    • This document briefly describes when guardianship is needed and the role and responsibilities of a guardian in the case of developmentally disabled wards.
  • National Guardianship Association. “The Guardian as Surrogate Decision-Maker” and “Guardianship Terminology.”
    • Substituted judgment and best interest standard are explained, and the basic requirements of the guardian are described.
  • National Guardianship Association. Standards of Practice. 3rd ed. 2007.
    • This document outlines the duties, responsibilities, and professional relationships of a guardian. Conflicts of interest, self-determination of the ward, withdrawal of treatment, and quality assurance are among the topics covered.

Legal & Policy Issues

  • Bailly, Rose Mary & Charis B. Nick-Torok. “Should We Be Talking?—Beginning a Dialogue on Guardianship for the Developmentally Disabled in New York.” Albany Law Review, vol. 75 (2011-2012): 807-840.
    • This article explains the standard in New York for guardians and end-of-life decision making, the history of the statute, as well as the case In re Chantel R., in which a developmentally disabled woman challenged the constitutionality of a guardian having control over her end-of-life decision under the equal protection clause, due process and vagueness.
  • Bergeron, Nicole E. “Resuscitating Elderly Wards in Michigan: Should a Legal Guardian be Allowed to Execute a ‘Do-Not-Resuscitate’ Order on a Legally Incapacitated Individual’s Behalf?Thomas M. Cooley Journal of Practical and Clinical Law, vol. 9 (2007): 257-286.
    • The author focuses on the constitutional due process liberty interest in the right to refuse treatment recognized in Cruzan and the ways in which decision-making is transferred to broad plenary guardians, as well as how that transfer of decision-making power infringes on the right of “incompetent” patients to refuse medical treatment. The author focuses primarily on Michigan and argues that guardians should have the ability to execute a DNR order for patients who have not previously expressed their desire to execute one.
  • Botsford, Anne L. & Angela King. “End-of-Life Care Policies for People with an Intellectual Disability: Issues and Strategies.” Journal of Disability Policy Studies, vol. 16, no. 1 (2005): 22-30.
    • These researchers outline the national, state, local, and agency factors that influence end-of-life care for intellectually disabled individuals. They describe the historical context and challenges of policies for this type of care for this population, taking into consideration a survey of what administrators noted as significant gaps and hurdles in constructing new policies. Their article also mentions some recent developments at the state and national levels.
  • Brown, Amy. “Broadening Anachronistic Notions of ‘Family’ in Proxy Decisionmaking for Unmarried Adults.” Hastings Law Journal, vol. 41 (1990): 1029-1076.
    • Although this article mainly focuses on advocating for expanding our notions of who makes an appropriate proxy decision-maker to include close friends and life partners who fall outside of traditional notions of “family member,” this article also includes an overview of the history of guardianship, the relationship of the guardian to the family, and the relationship of the guardian to loved ones who fall outside of the “family.”  
  • Buchanan, Allen E. & Dan W. Brock. “Deciding for Others: The Permanently Unconscious and the Severely and Permanently Demented” in Ethical Issues in Death and Dying. 2nd ed. Eds. Tom L. Beauchamp & Robert M. Veatch. Upper Saddle River: Prentice-Hall, 1996. 338-341.
    • In this brief chapter, Buchanan and Brock argue that profound intellectual disability seriously truncates the interests that these individuals could have, including interests in life-sustaining treatment and continued existence.
  • Delaney, Jeffrey J. “Specific Intent, Substituted Judgment and Best Interests: A Nationwide Analysis of an Individual’s Right to Die.” Pace Law Review, vol. 11 (1991): 565-641.
    • Surveying individual constitutional interests, state interests at stake and the role of the judiciary in protecting the rights of persons both competent and incompetent to refuse life-sustaining treatment, this article delves into the best interest and substituted judgment standards as applied in case law throughout the states as it stood in 1991. 
  • Feldhammer, Jon D. “Medical Torture: End of Life Decision-Making in the United Kingdom and United States.” Cardozo Journal of International and Comparative Law, vol. 14 (2006): 511-556.
    • The author in this article recognizes that administering “futile” treatment (a difficult word to define—also dealt with in the article) may risk violating the human rights of the dying patient. Unlike many approaches to end-of-life decisions that prefer life sustaining treatment, this article acknowledges that interests also exist in denying or ceasing life-sustaining treatment at the end of a patient’s life.
  • Fraleigh, Anna Schork. “An Alternative to Guardianship: Should Michigan Statutorily Allow Hospitals to Make Medical Treatment Decisions for Incompetent Patients who H ave Neither Identifiable Surrogates Nor Advance Directives?” University of Detroit Mercy Law Review, vol. 76 (1999): 1079-1134. 
    • In this piece the author critiques guardianship as a model for healthcare decision-making for incompetent patients. Drawing from statute examples in New York and California, the author proposes a statute for Michigan to adopt that would allow hospitals to make decisions for incompetent patients rather than resorting to the judiciary.
  • Frank, Casey. “Surrogate Decision-Making for ‘Friendless’ Patients.” Colorado Lawyer, vol. 34 (2005): 71-75.
    • This article outlines the number of ways that medical decision-making can be delegated to others than the patient and locates guardianship on the spectrum, including a discussion of institutional guardianship. 
  • Frolik, Lawrence. “Is a Guardian the Alter Ego of the Ward?Stetson Law Review, vol. 37 (2007): 53-86.
    • Frolik explores the relationship of the guardian to the ward and to the court. The author also breaks down the distinctions between the substituted judgment and best interest standards, as well as the complicated relationship between determining what “best interests” are and the relationship of best interest to the value system of both the guardian and judge. The author argues that courts around the country are moving toward an “amalgamation” of the substituted judgment doctrine, the best interest test and the reasonable person standard to guide guardians and their decision making.
  • Frolik, Lawrence & Linda S. Whitton. “The UPC Substituted Judgment/Best Interest Standard for Guardian Decisions: A Proposal for Reform.” University of Michigan Journal of Law Reform, vol. 45 (2012): 739- 760.
    • The authors point out the difficulties that arise when statutes mandate guardians follow both the substituted judgment and best interest standards without explaining what to do in the case they conflict or what to do if applying the standard leads to an “unreasonable result.” The authors argue for a proposed model in which substituted judgment and best interests exist on a spectrum: strict substituted judgment, expanded substituted judgment, expanded best interest and strict best interest. Such a model, the authors argue, allows guardians to respect “to the degree possible” the wishes of the ward.
  • Golden, Ben. “New Law Gives Guardians Authority to End Futile Treatment for Adults with Retardation.” New York State Bar Journal, vol. 75 (2003): 16-24. 
    • This article explores the shift from New York requiring clear and convincing evidence of a patient’s desire to end life-sustaining treatment to a standard that allowed guardians and family members more discretion to make these kinds of decisions. The article explores the details of the legislation. This article does not use People-First language.
  • Herring, Jonathan. “Caregivers in Medical Law and Ethics.” Journal of Contemporary Health Law and Policy, vol. 25 (2008): 1-37.
    • Herring reminds us that decisions regarding patients and end-of-life decisions do not only affect the person who is dying, but also those around him. Although this article focuses primarily on the UK, the article brings out a dynamic often ignored in the discussion of substitute decision-making: the impact on medical decision making on caregivers themselves. Herring “suggest[s] there are very few people… who would want decisions about them when incapacitated to be made entirely based on their own best interests with no consideration being given to the person caring for them, especially where that is a loved one.”
  • McLean, Sheila A.M. & Laura Williamson. Impairment and Disability: Law and Ethics at the Beginning and End of Life. New York: Routledge-Cavendish, 2007.
    • This book investigates conceptions of disability and a broad range of legislation related to the beginning of life, end-of-life decisions, assisted suicide, and countering discrimination. The authors look at court and legislative precedent from around the world and numerous types of physical and mental impairment.
  • Miller, Eric C. “Listening to the Disabled: End-of-Life Medical Decision Making and the Never Competent.” Fordham Law Review, vol. 74, no. 5 (2006): 2889-2925.
    • Miller surveys legal doctrine and court decisions on end-of-life decisions for the previously competent and the never competent. He pays close attention to how courts took into consideration the communications of incompetent patients, as well as the arguments for how these expressions should be incorporated into surrogates’ deliberations. Miller argues that surrogates have to consider any expressed preferences of these patients, even if informed consent is not possible.
  • Ouellette, Alicia. “Disability and the End of Life.” Oregon Law Review, vol. 85, no. 123 (2006): 123-182.
    • Ouellette discusses the standard position taken by disability advocacy groups on end-of-life decisions—namely, that there should be limitations on what choices are available to these individuals or their surrogates. Ouellette challenges this position, arguing that restricting freedom at end-of-life is not beneficial to individuals or the disability rights movement.
  • Robbins, Mary Kathleen. “New Life Given to the Right to Die in Michigan: In re Rosebush.” Thomas M. Cooley Law Review, vol. 10 (1993): 727-761.
    • This article outlines the Michigan court’s rationale in In re Rosebush, including exploring the origins of a right to die recognized in different states. The authors address surrogate decision-making in end-of-life decisions and they point out the interaction between the “best interest” standard and a perceived quality of life inquiry.
  • Strasser, Mark. “Incompetents and the Right to Die: In Search of Consistent Meaningful Standards.” Kentucky Law Journal, vol. 83 (1994-1995): 733-799. 
    • In this article, Strasser points out that we recognize the right to bodily integrity, which includes both the right to refuse invasive and risky procedures but also artificially delivered food and hydration. He explores the complexities and contours of the substituted judgment and best interest standards, and he suggests that using a substituted judgment standard with someone who has never truly expressed their preferences is just a best interest model in disguise. Finally, he argues that “when a guardian explicitly finds that non-treatment would be in accord with the patient’s intention or her best interests, the guardian’s finding should be honored unless doing so would be “medically unreasonable.’”

Patient Management and Professional Perspectives

  • Bailey, Susan. “Decision Making in Acute Care: A Practical Framework Supporting the ‘Best Interests’ Principle.” Nursing Ethics, vol. 13, no. 3 (2006): 284-291.
    • Bailey lays out the components of the best interest standard when trying to determine what counts as a sufficiently high quality of life. In her discussion of autonomy, she mentions some of the self-determining ability that can be exhibited by intellectual disabled individuals and how this ability is related to quality of life.
  • Botsford, Anne L. “Integrating End of Life Care into Services for People with an Intellectual Disability.” Social Work in Health Care, vol. 31, no. 1 (2000): 35-48.
    • This article describes some of the end-of-life challenges that commonly confront caregivers in cases of intellectual disability. Botsford recommends end-of-life education, grief counseling, bereavement services, support groups, crisis teams, and committees for improving responsiveness in this type of care.
  • End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities. Eds. Sandra L. Friedman & David T. Helm. Washington, DC: American Association on Intellectual and Developmental Disabilities, 2010.
    • This anthology includes articles on the following topics: historical perspectives; medical conditions and management; current controversies and ethical dilemmas; social, emotional, and spiritual considerations; and supports and resources. The contributors come from a variety of backgrounds, including medicine, philosophy, nursing, and education.
  • Lohiya, Ghan-Shyam, Lilia Tan-Figueroa, & Hugh Kohler. “End-of-Life Decisions in a Developmental Center: A Retrospective Study.” Western Journal of Medicine, vol. 176, no. 1 (2002): 20-22.
    • This study reports the prevalence of end-of-life decisions in a developmental center that provides care from early to old age for individuals with severe developmental disabilities. The researchers look at the type of decisions that were considered and the use of the best interest standard. Their study reveals that a small minority of residents had completed an advance directive, and a formal discussion about end-of-life options had only occurred in a quarter of cases.
  • McCarron, Mary & Philip MicCallion. “End-of-Life Care Challenges for Persons with Intellectual Disability and Dementia: Making Decisions about Tube Feeding.” Intellectual and Developmental Disabilities, vol. 45, no. 2 (2007): 128-131.
  • Scudder, Laurie. “End-of-Life Care in the ICU.” International Journal of Nursing Studies, vol. 49 (2012): 519-527.
  • Wagemans, A., H. van Schrojenstein Lantman-de-Valk, I. Tuffrey-Wijne, G. Widdershoven, & L. Curfs. “End-of-Life Decisions: An Important Theme in the Care for People with Intellectual Disabilities.” Journal of Intellectual Disability Research, vol. 54, part 6 (June 2010): 516-524.
    • This study focuses on the prevalence and nature of end-of-life decisions among intellectually disabled residents in a Dutch center. They found that non-treatment decisions were made in a minority of cases, and families were involved in half of the cases where any end-of-life decision occurred. The researchers point to the need to further investigate the processes of decision-making in these cases.

Philosophical Questions

  • Buchanan, Allen E. & Dan W. Brock. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge: Cambridge University Press, 1990.
    • This book addresses philosophical conceptions of capacity and competence, and Buchanan and Brock also reflect on past and current policies related to surrogate decision-making. They have chapters discussing surrogacy in cases of never competent and previously competent patients, and they also analyze some of the ethical difficulties associated with best interest and substituted judgment standards, as well as the philosophical debates surrounding advance directives.
  • Cantor, Norman L. Making Medical Decisions for the Profoundly Mentally Disabled. Cambridge: MIT Press, 2005.
    • Cantor has chapters dedicated to philosophical and policy questions of moral status, rights-bearers, institutionalized persons, the best interest standard, and forced altruisms or sacrifices on the part of profoundly intellectually disabled individuals. Cantor argues that individuals within this population should be recognized as having full legal and moral status.

Quality of Life Determinations

  • Cummins, Robert A. “A Self-Rated Quality of Life Scales for People with an Intellectual Disability: A Review.” Journal of Applied Research in Intellectual Disabilities 10.3 (1997): 199-216.
    • The author analyzes scales that measure subjective quality of life in intellectually disabled populations. He discusses some key challenges for keeping these measures updated as our understanding of quality of life evolves.
  • Felce, D. “Defining and Applying the Concept of Quality of Life.Journal of Intellectual Disability Research 41.2 (1997): 126-135.
    • The author offers a survey of objective and subjective conceptions of quality of life and tries to synthesize them. The paper argues that there are several broad life domains that are relevant: physical, material, social, productive, emotional, and civic well-being.
  • Felce, D. “Defining and Applying the Concept of Quality of Life.” Journal of Intellectual Disability Research 41.2 (1997): 126-135.
    • The author offers a survey of objective and subjective conceptions of quality of life and tries to synthesize them. The paper argues that there are several broad life domains that are relevant: physical, material, social, productive, emotional, and civic well-being.
  • Logsdon, Rebecca G., Laura E. Gibbons, Susan M. McCurry, and Linda Teri. “Assessing Quality of Life in Older Adults with Cognitive Impairment.” Psychosomatic Medicine 64.3 (2002): 510-519.
    • The authors discuss the QOL-AD instrument for measuring quality of life in cases of dementia. They show that this measure can be reliable and valid for individuals with MMSE scores greater than 10.
  • McVilly, Keith R. “Quality of Life Issues in the Development and Evaluation of Services for People with Intellectual Disability.” Journal of Intellectual and Developmental Disability 23.3 (1998): 199-218.
    • The author considers the multidimensional and dynamic nature of quality of life as a construct. The paper contrasts process-centered and outcome-centered approaches to evaluating quality of life, and it also highlights the problems involved with using substituted proxy evaluations of quality of life in cases of intellectually disabled patients.
  • Schalock, Robert L. “The Concept of Quality of Life: What We Know and Do Not Know.” Journal of Intellectual Disability Research 48.3 (2004): 203-216.
    • This article outlines what is currently known about quality of life as a construct, what researchers are beginning to understand about it, and what remains in question. Although there is still uncertainty on how to use quality of life indicators for public and disability reform, there is a great deal of information on the measurements used, the results of data collection strategies, and the universal and cultural dimensions of it.
  • Schalock, Robert L., Ivan Brown, Roy Brown, Robert A. Cummins, David Felce, Leena Matikka, Kenneth D. Keith, and Trevor Parmenter. “Conceptualization, Measurement, and Application of Quality of Life for Persons with Intellectual Disabilities: Report of an International Panel of Experts.” Mental Retardation 40.6 (2002): 457-470.
    • The American Association on Intellectual and Developmental Disabilities published this article that reflects on the different conceptualizations, measurements, and applications of the term ‘quality of life.’ The authors’ analysis is meant to aid cross-cultural determinations.

Review of Literature


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