Newsletter of the Network on Ethics and Intellectual D isability

Vol. 9, No. 1 Summer 2005 Terri Schiavo and Disabled Persons

n March 11, 2005, 41 -year old Florida findings of the court that she was in a permanent resident, Terri Schiavo, died after 15 vegetative state and that her wishes were that she years of what the courts determined not be fed. Since her severe, indeed total, mental Owas a permanent vegetative state. She diedimpairment after played a key role in the controversy, nutrition and hydration supplied through a gas­ many committed to the rights and welfare of the trostomy was discontinued based on the claim of disabled have expressed great concern about the her husband confirmed by many courts that there implications of her case for the disabled. In this was clear and convincing evidence that her wishes issue of the Newsletter on Ethics and Intellectual expressed while she was mentally competent were Disability, four scholars provide perspectives on not to have the feeding continued if she were the importance of the case for those with severe ever in this condition. Her parents rejected the mental disabilities.

Not Yet Dead Terri Schiavo Steve Eidelman and Was Not Disabled Steve Drake Ronald Cranford

By the time you read this, Terri Schiavo The case of Terri Schiavo in Florida has may already be dead. Her fate has been a topic turned out to be the most extensively litigated, of intense debate for months, and it’s likely most widely debated, and most controversial that her death will not end the dialogue. In fact, legal and ethical case in the history of the Terri Schiavo’s death may propel end-of-life American right to die cases; in some respects, issues even further into public consciousness. even more so than the previous two most widely If there is anything positive to emerge from publicized cases of Karen Quinlan and Nancy her ordeal, perhaps it is that more Americans Cruzan. will consider having the difficult end-of-life conversation with all of their loved ones. However, in one important respect, Terri’s case was very similar to many of the previous The case of Terri Schiavo raises a number landmark right to die cases of the past two of troubling questions for Americans, ques­ decades - a patient in a permanent vegetative tions that reach far beyond Ms. Schiavo’s family. state where the central non-treatment issue was

(Continued on page 2) (Continued on page 4)

Catholic Perspectives on Nutrition, John Langan, S.J., Page 3 Euthanasia and Disability, Hans S. Reinders, Page 6 2 Not Yet Dead

(Continued from page 1) abilities Act, that Disability is a natural would be the last to deprive her of her part of the human experience. So is right to self-determination regarding the For people with disabilities and their death. There is unreliability regarding end of her life, had her wishes only been families, the case represents a slippery the persistent vegetative state diagnosis. documented in a living will with power slope and raises the possibility that the The question of just allocation of health of attorney. But they were not. right to life of people with significant care and long term support resources is Given these ambiguities, the dis­ intellectual and or physical disabilities often in the back of our minds, whether ability community feels that the courts might one day be questioned. It was we talk about it or not. These are ample should err on the side of sustaining her only 20 years ago that the starvation reasons why we must put aside the life, not allowing her to die. This is the and dehydration of an infant with Down partisan posturing and have an open position of 26 national disability groups, syndrome exposed this all-too-com- and inclusive discussion of the issues many of which represent people under mon practice in the United States. In at hand. that case, two judges sanctioned the guardianship, like Terri Schiavo. One thought that troubles the death of the infant, an infant whose life The disability community has disability community is that Terri could have been saved without heroics. grappled with these issues in the past Schiavo’s life, and death, may cause Although few would agree with that and has come to the conclusion that in legal protections for people under ruling now, it was fiercely defended as such cases, it is best to assume that life guardianship to be dismantled, making it a private matter between families and is preferable over death. Is that not what doctors back in the mid-1980s. the Schiavo case is all about? Laws governing surrogate decision-making Today, there are thousands of people There must be a way to vary among states and are often the with various physical and cognitive dis­ balance a person’s right to result of well-funded advocacy from a abilities who use feeding tubes as their expressly refuse treatment narrow group of professionals. In most normal means of getting food and water. against a person’s right not to cases, disability organizations were not For these people, a feeding tube is not be deprived of life without due included in changes of statutes on the life support or heroic intervention. It is process of law. state level, and the drafters of those a simple way of getting hydration and statutes did not take into account the nourishment. When they are hospital­ views of those with disabilities. This ized for any reason - however minor | easier for guardians to kill by withholding case focuses our attention on the need - they risk having their normal means food and water. There must be a way to for a “federal floor” to protect people of eating and drinking be classified balance a person’s right to expressly under guardianship. as “extraordinary treatment” or “life refuse treatment against a person’s support.” right not to be deprived of life without In situations in which a guardian due process of law. That due process of is indicated - particularly a state- Of course, the Schiavo case is a law must understand the wishes and appointed guardian - the possibility complicated one. There are conflicting interests of people with disabilities, for conflicts of interest is clear. Many stories about what Terri Schiavo would even if their lives are devalued by other families are left to deal with very seri­ have wanted. And few of us have enough people. Today, we fear it does not. ous disabilities with few or no supports. experience with severe disability to Research indicates that people with make an informed choice in an advanced Terri Schiavo’s wishes were not living wills and advance directives directive. Having a significant disabil­ documented, and her husband and frequently change their minds when the ity does not mean you are “pre-dead.” family have many conflicting needs time comes to implement those direc- People with disabilities are within the that may be clouding their memory or precepts of the Americans with Dis- judgment. Advocates for the disabled (Continued on page 3)

The Newsletter of the Network on Ethics and Intellectual Disabilities, Vol. 9, No. 1, Summer 2005 3 Not Yet Dead Catholic (Continued from page 3) Perspectives tives. Once people experience severe The disability community is on Nutrition disability, their horror of it might evapo­ grateful that so many in Congress rate. We now know, too, that people who supported Terri Schiavo’s right to live, John Langan, S.J. “cannot speak for themselves” are often even though we are concerned about able to use assistive technology that the precedent they set. We would like What are we bound to do to preserve would allow them to communicate their to see them follow up with the same life in those who are suffering from wishes, hopes, fears and good-byes even level of concern for making sure we grave illnesses or who have suffered if they can no longer speak. In today’s can provide care and support for the devastating injuries? Human feeling climate, it might be even more important millions of Americans with disabilities and respect for human dignity require to write down what you do want in terms by supporting the Medicaid Community that we make strenuous efforts to help of treatment or supportive care and as- them. Common sense, medical experi­ sistance with communication, not just When a person has serious ence and economic rationality suggest what you don’t want. disabilities, the debate should that these efforts will have to be lim­ ited. If care is to be limited, who is to Our society must stop using the not be about whether or not decide where the limits are, and what is term “persistent vegetative state.” Too they are going to “get better” to be the basis for the decision? A key many people with significant disabilities some day. part of the Catholic response to these have been called “vegetables,” and this widely shared human dilemmas has must stop. It is beyond demeaning; it Attendant Services and Supports Act, been the distinction between ordinary is dehumanizing. In fact, some of the which would allow people receiving and extraordinary means of preserving people who use the term most freely Medicaid funding to have a life, not one’s life. Both for individuals who are are doctors, and what comes next is a just stay to alive. We call on them to able to make decisions for their own care discussion of the death or warehousing ensure continued appropriate funding and for surrogates and institutions who of the individual labeled that way. of Medicaid and other programs that have to decide for others, the guiding people need; and we look forward to the When a person has serious disabilities, norm has been that there is an obligation passage of the Family Opportunity Act, the debate should not be about whether or to take or to provide ordinary means for to allow families of children with signifi­ not they are going to “get better” some day. the maintenance of life and that there is cant disabilities to buy into Medicaid, For millions of Americans, disability is a not an obligation to employ extraordi­ to help their sons and daughters live at fact of life, every day of our lives. People nary means. This, of course, cries out home in the community, not banished to with disabilities have wonderful lives. And for interpretation and clarification.. Just a nursing home or institution. some have lousy lives. In that way, they are what counts as an ordinary means or extraordinary means? A medical proce­ just like other Americans. Just because a Terri Schiavo’s case is every family’s dure which puts this question in a direct person has a significant disability does not nightmare. Disability doesn’t have to be and pressing form is artificial nutrition mean that they do not love their life. It does a nightmare. Even if our nation disagrees and hydration. On the one side, it seems not mean that they should be assumed to on how we define compassion, we must to be perfectly ordinary to provide food be better off dead. certainly agree that all lives are equal and water to a sick patient. The denial under the law. It is time for a call to conscience to of food and water seems to fall below both the Right and the Left. Guardianship This is an Op-Ed piece pending the minimal standard of care which should not be a death ship. People like Terri publication written by Steve Eidelman, everyone should expect to receive. On Schiavo are persons under the law, and they Executive Director of The Arc and deserve constitutional protection. Steve Drake o f Not Dead Yet. (Continued on page 4)

The Newsletter of the Network on Ethics and Intellectual Disabilities, Vol. 9, No. 1, Summer 2005 Catholic Perspectives on Nutrition Terri Schiavo (Continued from page 3) Was Not Disabled the other side, the provision of food patients were beyond hope of recovery. (Continued from page 1) and water through a tube inserted in the His position should probably be seen the withdrawal of artificial nutrition and body seems to be an extraordinary pro­ as a valuable warning against the hasty hydration (ANH). Beginning with the cedure which is used for patients whose removal of feeding tubes rather than as case of Paul Brophy in Massachusetts bodies are no longer able to function definitive teaching on a matter where in 1986, then Nancy Jobes in New in a normal way. It is associated in the both our knowledge and our ability Jersey, all the way to Nancy Cruzan to minds of many with a mechanization of to solve the problems of patients are the body’s functions and with the end likely to grow. It is worth remembering of normal human life. Making the use that as his own illness entered its last Terri’s brain was so of such procedures a matter of obliga­ stage, John Paul II did not return to the severely atrophied; it weighed tion seems to put an unnecessary and hospital and received what was prob­ only 615 grams, less than even futile burden on patients who are ably little more than palliative care. But 50% of the weight of a normal near death, even while it prolongs their his 2004 statement led many Catholic brain and 25% less in weight survival. Not surprisingly, the existence commentators and bishops to oppose than Karen Quinlan’s brain. of this polarity of interpretations led to the withdrawal of the feeding tube from divergent responses within the Catholic Terri Schiavo. The results of the autopsy community, with bishops in different made it clear that the medical judgment the US Supreme Court in 1990, over 10 states coming out with contradictory that there was no point in further landmark cases in various states have views on whether there was or was not treatm ent was correct. W hat is not clear focused on the legal permissibility of a moral obligation to provide nutrition is how Benedict XVI will want to move withdrawing artificial feeding from a and hydration. the tradition forward. PVS patient. So Schiavo broke no new ground nor established any legal prece­ John Paul II in an allocution in April John Langan, S.J., is a Senior dents not already well established in case 2004 came down on the affirmative Research Scholar and is the Joseph and statutory law. The withdrawal of side. He was focusing particularly on Cardinal Bernardin Professor of ANH from a PVS patient is well-estab­ patients in a persistent vegetative state, Catholic Social Thought at the Joseph lished and settled law in many jurisdic­ and he was clearly urging caution in P. and Rose F. Kennedy Institute of tions, including Florida with both case making and acting on judgments that Ethics, Georgetown University. and statutory law for withdrawing this form of treatment from PVS patients.

MAILING LIST The critical distinguishing feature of the Terri Schiavo dilemma which made To add your name to the mailing list for the Network on Ethics and Intellectual Disability write: this case so uniquely different from most of the others was the longstanding, Prof. de Johannes S. Reinders Robert M. Veatch Institute for Ethics Joseph P. and Rose F. Kennedy acrimonious disagreement between Free University Institute of Ethics Amsterdam, The Netherlands OR Georgetown University Terri’s parents and blood relatives, the [email protected] Washington, DC 20057 USA Schindler family, and her husband, veatchr@ georgetown. edu Michael Schiavo, over Terri’s true neu­

The Newsletter of the Network on Ethics and Intellectual Disability is published twice a year and rological condition and the appropriate is a publication of the Network. Address correspondence to The Joseph P and Rose F. Kennedy Institute treatment or non-treatment based on this of Ethics, Georgetown University, Washington, DC, 20057-1065, USA or the Institute of Ethics, Free University, Amsterdam, The Netherlands condition, and their interpretations of (continued on next page)

The Newsletter of the Network on Ethics and Intellectual Disabilities, Vol. 9, No. 1, Summer 2005 5 Terri Schiavo Was Not Disabled (Continued from page 4)

Terri’s wishes. It should be noted that reviewed the opinions of the neurologists, ability groups about this case, two major previous two major right to die cases in the CT scans, and videotapes of the clinical factors should be kept in mind. First, the US, Michael Martin in Michigan and examinations and strongly agreed with the this case broke no new ground, nor set Robert Wendland, both involved irrec­ conclusion of the trial court judge on Terri’s any precedent not already established oncilable disputes between the families, neurological condition. It should be noted previously in numerous right to die more specifically in each case between that the evidentiary hearing before the trial cases on neither the neurological con­ the mother and the spouse. However, in court judge, as mandated by the appeals dition of the patient nor the withdrawal Martin and Wendland, the patients were court, was the longest, most extensive of artificial nutrition and hydration. clearly conscious to some degree and evidentiary hearing on a right to die case The opinions of the Florida judicial thus in a minimally conscious state. in the history of American law. Not only system were consistent with the con­ were there uncontroverted opinions from sensus medical-legal-ethical standards The other unique features of Schiavo the neurologists at the evidentiary hearing, were the battle of the videotapes, the of the last two decades—from the but the CT scans of Terri’s brain showed President’s Commission on the Study extensive use of the internet by special extremely severe atrophy of the cerebral of Ethical Problems in M edicine and interest groups and commentators, and hemispheres (indicating irreversibility, and eventually the unprecedented conflict Biomedical and Behavioral Research no chance whatsoever that Terri was a can­ of 1983, the Hastings Center report between the proper roles of the executive didate for treatment or rehabilitation), and and legislative branches of government of 1986, the consensus statements of two EEGs which were flat (confirming that numerous national medical organi­ and the judicial branches, both at the Terri was unconscious and thus in a vegeta­ zations, and the US Supreme Court state and federal level. tive state). The autopsy performed by the decision in Cruzan in 1990. In retrospect, however, throughout medical examiner of Pinellas County, the this seven year conflict over the removal most complete and comprehensive autopsy Second, it is unfair to compare the of the feeding tube, from 1998 through and medical examiner’s report in any right permanent vegetative state to lesser 2005, there never was any doubt as to die case in the US, showed unequivocal degrees of neurological dysfunction, or to the neurological condition of Terri changes in the brain compatible with pro­ disabilities, since the vegetative state is Schiavo, notwithstanding the feelings of found hypoxic-ischemic encephalopathy the most extreme neurological dysfunc­ the Schindler family and the videotapes that correlated extremely well with the tion possible, short of brain death. apparently showing Terri interacting clinical diagnosis, and CT scans and EEGs. with her family. Of the eight board-certi­ Terri’s brain was so severely atrophied, it fied neurologists who personally exam­ weighed only 615 grams, less than 50% Ronald Cranford, MD, is Assistant ined Terri, seven (four were consulting of the weight of a normal brain and 25% Chief in Neurology at the Hennepin neurologists who cared for Terri from less in weight than Karen Quinlan’s brain. County Medical Center (HCMC), Minneapolis, Minnesota; Professor of 1990 the time of the evidentiary hearing The autopsy findings were exactly what Neurology, University of Minnesota in October, 2002, and three neurologists the neurologists had predicted Terri’s brain Medical School; and Faculty Associate, who examined Terri and testified in would look like at autopsy, compatible with Center for Bioethics, University of court) said that Terri was in a permanent the clinical findings, the CT scans, and Minnesota. He was one of the board- (persistent) vegetative state. The creden­ the EEGs and thoroughly undermined the certified neurologists who examined tials and testimony of the other board- testimony of those doctors who said Terri Terri Schiavo on behalf of the court. He was co-chairman of the Multisociety certified neurologist were thoroughly was conscious, and capable of improving Task Force on Medical Aspects of the discredited by the trial court judge. In or responding to treatment. Persistent Vegetative State, which pub­ addition to the trial court judge, the lished its report in the New England three-person appeals court in Florida also With respect to the concern of dis­ Journal of Medicine, May-June, 1994.

The Newsletter of the Network on Ethics and Intellectual Disabilities, Vol. 9, No. 1, Summer 2005 Euthanasia and Disability: Comments on the Terry Schiavo Case Hans S. Reinders

The decision to remove the feeding consensus-building capacity that most ethics” with a well established body tube of Terri Schiavo and her subsequent of the authors attributed to it is in fact of knowledge from which such moral death has stirred considerable debate not functioning, which in turn accounts principles could be inferred, it would be in the US and abroad. For observers for the continuing prominence of moral irrelevant to know who represents it. As from abroad such as myself, the way arguments based on court decisions in it stands, the self-congratulatory title of Americans tend to cast hard cases in American textbooks. being leaders in the field only testifies to medical ethics is in terms of how they the implicit recognition of their partisan are — or ought to be — handled by the In the Schiavo case the failure of role in the conflict. courts. It remains a significant differ­ bioethics to provide moral guidance From the many questions to be ence between both continents that the capable of transcending the boundaries raised I will raise only one, mainly for intertwinement of ethics and the law of particular “moralities” is most con­ reasons of space, but also because of the appears to be much stronger in the US spicuous in the Amicus Curiae Brief other contributions to the present issue. than it is in Europe. Explanations of this Michael Schiavo decided to ask for an observation, assuming there is some autopsy of his wife’s brain in order to truth in it, must remain hypothetical. My If autonomous decision­ find out which of the conflicting medical own hypothesis would be that in the US making is the decisive issue in cas­ assessments of her condition was correct. “ethics” has come to be regarded as be­ es like this one, why do we need It turned out that a large part of her brain longing to a particular group defined by three instead of two bioethical was irreparably damaged such that the — a mixture of — religious, cultural, or models for decision-making? diagnosis PVS apparently had been the ethnic identity. More in particular in the correct one. Question: does the condition US “bioethics” — probably even more of PVS warrant the decision of a life not than “medical ethics” — has come to be that a number of American colleagues worth living? I know, of course, that this perceived as being deeply enmeshed in submitted to the Supreme Court in question was circumvented by presenting the culture wars that have been sweeping the State of Florida on behalf of the Terri’s case as a case about autonomous through the country in recent decades. plaintiff, Terri’s husband acting as her decision-making regarding the right to On this hypothesis, the law suggests legal representative. Framing the issue refuse medical treatment. Presenting it as itself as the only viable alternative for exclusively as an issue of autonomous such made it necessary, first, to assume the resolution of moral conflict. decision-making, without asking any that using a feeding tube to feed some­ further questions, these colleagues chose one amounts to a medical procedure. From a theoretical perspective it to represent only one perspective of the The assumption is discussed by Father would be interesting, in this respect, case. The fact that they claimed to pres­ Langan elsewhere in this issue, but my to revisit the various proposals for a ent moral principles that “bioethics” has position is that it does not. Second, as a philosophical grounding of the field, established, as if that were in any way case of autonomous decision-making, it either defined as medical ethics or as a unified field with a body of authorita­ was necessary to rely on information by bioethics, that have been published since tive knowledge, does not help to build proxy about Terri’s will with regard to the 1970s. If my observation regarding the plausibility of their argument. Nor the question of discontinuing medical the public perception of “ethics” in did the further fact that they identified treatment in her condition. America holds true, this suggests that themselves as being among the nation’s these proposals have failed to be con­ leading figures in bioethics help, because vincing insofar as the pacifying role and if there were a unified field called “bio­ (continued on next page)

The Newsletter of the Network on Ethics and Intellectual Disabilities, Vol. 9, No. 1, Summer 2005 7 Euthanasia and Disability

(Continued from page 6) depends on what the doctor involved learned American colleagues suggests. Appearance to the contrary, how­ makes of your judgment in the decision The refusal must be assessed and the ever, the Schiavo case does presuppose at hand. In other words, doctors will assessment must regard the judgment a judgment on whether Terri’s life in a only respect your right to refuse medical on which it is based. If it is accepted, it PVS was worth living. My argument treatment in a given case when they is accepted because the wish to be dead for this claim concerns the basis of think your decision does not harm your rather than to continue to live in a PVS is professional responsibility in medicine. own interests, otherwise they will press considered not to go against the patient’s In recent times it has been argued in the for having you declared incompetent. own interest. context of bioethics that in some cases What follows is that when doctors Here is final proof for this claim death would be morally preferable to respect a patient’s refusal as a matter of merely being alive. For someone who her right in a case where this will result from the B rief itself. If autonomous holds this view, there are clearly cases decision-making is the decisive issue in which continuing to feed a patient by in cases like this one, why do we need means of a feeding tube would not be When a person has serious three instead of two bioethical models considered to contribute to that patient’s disabilities, the debate should not for decision-making? Only the models well-being. Presumably the case of Terri be about whether or not they are of advanced directives and substituted Schiavo would count as one of these going to “get better” some day. judgm ent regard the value of personal cases. decision-making; the third one regards best interest, which implies that your What follows is that the concept in her death, this in fact presupposes that proxy tells your doctor what she thinks of well-being and even the concept of they tacitly accept her judgment. In this about your condition because there is no health for that matter, has emerged as a way of knowing what you would have case, letting the patient die is not against contested concept. Public recognition of said about it. her own interest. this fact has changed the moral nature of the professional relationship into a “Bioethics” as represented Coming from a country that has political one, because the question now by America’s self-declared leading some expereince with these matters, is whose meaning is going to prevail in members of the field wants to be mor­ I know for sure that in cases where any given case. Contemporary bioethics ally and legally justified in passing patients declare they want to die, it still has answered this question by estab­ judgments on whether human life in is the doctor’s decision to accept their lishing the rights of patients to refuse Terri Schiavo’s condition is worth living. judgment as “reasonable.” If a patient medical treatment. When a patient does I know a number of people living with claims unbearable suffering and the not regard (the continuation) of a par­ a condition that in important respects is doctor complies with the request for ticular treatment to be contributing to similar to hers, people with profound euthanasia, this necessarily implies her well-being as she regards it, she may intellectual disabilities. I do not accept that he has accepted her judgment. The refuse it. But this right is not absolute. that it is in their best interest to die, so reverse is also true, of course. The right to refuse medical treatment is my understanding of bioethics must be limited by the condition that the patient different. Even when we think that feeding is not acting against her own interest a PVS patient with a tube is a medical because of incompetence. procedure, then the underlying issue in Competency, however, needs to be Terri Schiavo’s case is still not merely Hans S. Reinders is the Willem determined with regard to specific deci­ one of patient autonomy and the right to van den Bergh Professor of Ethics and sions. So, whether or not your right to refuse the continuation of feeding her by Disability at Vrije Universiteit, refuse medical treatment will stand up tube, as the Amicus Curiae Brief of my A m ste rd a m .

The Newsletter of the Network on Ethics and Intellectual Disabilities, Vol. 9, No. 1, Summer 2005 Bibliography human rights of persons with mental disabil­ carers of people with intellectual disability. Harriet Hutson Gray ities: a global perspective on the application Journal o f Intellectual Disability Research of human rights principles to mental health. 2004 November; 48(part 8): 754-763. Maryland Law Review 2004; 63(1): 20-121. Reinders, H. Parenting and social responsi­ Herr, Stanley S.; Gostin, Lawrence O. and Koh, bility. Journal of Intellectual Disability These books and articles have been added Harold Hongju, eds. The Human Rights R esearch 2004 June; 48(part 4-5): 378. recently to the collections of the National Refer­ of Persons with Intellectual Disabilities: Richard, Amanda and Turnbull, H. Rutherford, ence Centerfor Bioethics Literature (NRCBL). Different But Equal. Oxford/New York: III. 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The Newsletter of the Network on Ethics and Intellectual Disabilities, Vol. 9, No. 1, Summer 2005