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PAIDSan Francisco, CAPermit No. 1741

Paths

Bulletin of the Pr

Ethical Togram in Medicine & Human Values

imes No. 27, Autumn 2011

Inside

1 Bioethics and the Care of Children with Developmen­tal Disorders

1 We Are Grateful

2 The Ethicist Is In

3 Bioethics and the Care of Children with Developmen­tal Disorders (cont.)

5 Doing Quality Ethics

6 Happenings

We are Grateful…. Our Program is in its ninth year and we are delighted with our successes in continuing to offer ethics consulta­tion services and resources to patients, families, and caregivers. The generous philanthropic support we have received over the years sustains our Program. This past year alone we completed over fifty clinical ethics consultations, provided more than twenty education programs, initiated an Ethics Quality initiative, and started our expansion of medical eth­ics into Sutter West Bay hospitals. We invite you to invest in the work that is so meaningful to patients, their families, and providers at critical times. We hope you will consider making a contribution to the Program in Medicine and Human Values. This will assure we can continue provid­ing valuable medical ethics services.

Our address: 2395 Sacramento Street, 3rd Floor San Francisco, CA 94115. You can also make a contribution online at http://www.cpmc.org/giving/ philanthropy/gift/cash.html Please designate your gift to the Program in Medicine and Human Values.

Happy Holidays!

Bioethics and the Care of Children with Developmental Disorders Albert R. Jonsen, Ph.D.

Bioethics started at the movies. In 1971, a short film opened the Joseph P. Kennedy Jr. Foundation International Symposium of Human Rights and Retardation. It depicted a young couple faced with a terrible deci-sion. Their newborn son was, as the obstet-rics nurse reports, a “Mongol.” This term was commonly used at that time to describea person affected with Down Syndrome, a genetic disorder that always promises a future of mild to severe mental retardation. The baby also had an intestinal obstruc-tion making feeding impossible. The doctorexplains that the intestinal obstruction can be easily repaired. The developmental future of the child, however, cannot be altered. The parents decline the surgery and the baby dies several days later of starvation.

This short film, in which all the persons,except the parents, were the real participants in such a case at Johns Hopkins Hospital,shocked the audience which was filled with notable politicians, journalists and

Continued on page 3

Suzanne Giraudo, Clinical Director of Kalmanovitz Child Development Center, stands with PMHV Co-Director Albert Jonsen.

The Ethicist Is In:

Today’s Ethicist: Ruchika Mishra, Ph.D.

This case was presented to the ethicist by a health care provider during a recent lecture event:

A premature infant with failure to thrive presents to the newborn follow-up clinic. Neonatologists have recommended artificial feeding. The family is of Asian origin. The mother of the infant is resistant to feeding via a naso gastric tube. She does not want a gastrotomy feeding tube to be placed either. She has been known to discontinue prescribed medica tions in favor of over the counter herbal medicines. The infant’s mother wants to take the child to her native country because she believes an alternative therapy offered there will be able to cure her child. Should this parent’s refusal of treatment for her child be respected?

The aim of this case discussion is to familiarize the Ethical Times (ET) audience with the process of analysis used by bioethicists and clinical ethi-cists in practice. The last issue of ETdealt with patient refusal of treatment and this issue will discuss parental refusal of treatments for their children.

There is an important distinction between patient refusal of treatment and parental refusal of treatment. The distinction rests on the concepts of autonomy and decision making. Whilepatients who have decision makingcapacity can make decisions regard-ing their own treatments and have the right to make an informed refusal of treatments, children are not consid-ered competent under the law and

their parents are giventhe right to makemedical decisions for them. The standard for decision makingmost commonly usedin pediatrics is called the ‘Best Inter-est’ standard. What this means is that parents must make decisions that pro-mote the best interests of their child. The best interest standard involves weighing the benefits and burdens of a possible course of action. Factors thatneed to be taken into consideration are the relief of pain and suffering, resto-ration or preservation of function, and quality and extent of the life sustained.

In the case described above, both the health care provider as well as the parent must remember that their obligations are toward the child. While the health care provider must make medical recommendations regard-ing what will benefit the patient andprevent harm, the parent then has an obligation to make a decision on thebasis of the provider’s recommenda-tions regarding what will promote the child’s welfare. A parent is after all, a guardian of the child. It is the respon-sibility of the parent in that role to safeguard the child’s interests.

The first question that arises from the context of the case is the reason for the parent’s refusal. When health care providers who routinely interact with parents and children encounter parental refusal of medically indicated treatments, it is essential to explore the reasons for refusal. It must be deter-mined what the parents understand of their child’s current situation and the implications of that understanding fortheir child’s future. What, according to the mother, are her child’s health is-sues? Does she understand her child’s

Ethical Times 2

diagnosis and the require-ment for a feeding tube?Given that the mother bringsthe child to the newborn follow-up clinic, what wasshe told by the neonatologyteam at the hospital aboutthe treatments that the child

would require? Does the mother have the ability to understand what is beingcommunicated to her? If languagemay be an issue, a competent inter-preter should be considered.

It is obvious in this case that the parent’s refusal has cultural issues at its center. It is important to consider how cross-cultural issues may be affecting the mother’s decisions and leading to conflict between the provid-er and the parent. Is the child’s feeding tube a reflection of her own failure, of motherhood? In some cultures, a feed-ing tube may be perceived negatively. How does this parent perceive a feed-ing tube, does she feel that a feedingtube may label her child in a particularcategory that is looked down upon inher community and culture? Or is it that she personally knows somebodywho has had a particularly bad experi-ence with being on a feeding tube andthat may be a contributing factor toher refusal?

If this is a parent who does not believe in the effects of conventional medicine and hence, wants to make decisions for the child on the basis of what she believes is a more effective form of treatment, i.e. herbal medicines, it is the duty of the health care provider to assess what kind of risks and harms may occur if this parent were to decline medically indicated treatments and provide alternative treatments to the child that are consistent with her cultural or personal beliefs. Whileparents are given the right by law to make decisions on behalf of their

Bioethics and the care of children with Developmental Disorders Continued from page 1

children, parents do not have a right to deny a child access to medicallyindicated treatments. The parental right to make decisions for their childis not an absolute right. It is limited bythe best interests of the child and the obligations that a health care provider has toward their patient, the child.

It is interesting to note in this case that the parent wants to take the child to another country for treatment. This may be evidence of possible trust issues that the parent may have with the current medical team or the health care system in general. Perhaps this parent has only recently moved to the United States and is not familiar with health care practices here. If that is the case, she may be more comfortable and trusting of practices she knows and believes she has seen the effects of. What kind of alternative treatments is she considering? Is this a decisionshe has arrived at after consultingalternative therapy practitioners in thecountry where she wants to take her child to, what would she do if these alternative therapies did not work outfor her child? To address some of the cross-cultural issues in this case regarding a preference for a particular form of medicaltreatment, it may be helpful for the health care providers to consult a local expert in thatfield of alternative therapybeing considered by the patient’s mother.

Knowing the social andcultural backgrounds of parents is very impor-tant while caring forchildren since there may be culturally rooted notions or perspectivesregarding certain treat-ments within different settings or contexts thatcould cause conflict. In cases like the one described here, it is

crucial that the entire health care team works in coordination with the child’s mother, assessing what the parent’s understanding of the child’s situationis, the implications of the diagnosis forthe child’s health and future, the need for recommended treatments, reasons for parental refusal of medically indi-cated treatments and parents’ under-standing of consequences of refusing medical recommendations. This parent may be under the impression that she has the sole right to make decisionsfor her child and that nobody else caninterfere with it. It may be necessary to educate the parent regarding what her refusal of medically appropriate recommendations could lead to within the current social, legal and health care system. If the parent’s refusal is insis-tent and health care providers have reason to suspect that the infant would be harmed due to the parent’s refusal of treatment, child protective agency should be consulted and appropriately involved.

While parents have the right to make medical decisions for their children, their right is limited by the best

interest of the child.

scholars. They had been gathered by the Kennedy family to learn aboutan almost undiscussed topic: therights of retarded people. The Kennedys cherished a “retarded” sister, Rosemary and in subsequent years sponsored many programs, including the Special Olympics, tosupport and celebrate the lives ofthose with developmental problems. For the Kennedy family—and formany who viewed that film—thequestion was not, “should theylive?” but “how should they live?”

A few years later, federal law rein-forced this view. “All medically indi-cated treatments must be provided to infants unless such treatment would merely prolong dying, not be effective in ameliorating or correct-ing all of the infant’s life-threatening conditions, or otherwise be futile in terms of the survival of the infant” said Public Law 98-475, known as the Baby Doe Law. It clearly ruled out consideration of the child’s fu-ture quality of life. Over subsequent years, the initial case of a Downsyndrome child expanded into many cases of various sorts, previously poorly understood, barely noticed (except for those touched by them)developmental problems: attention deficit disorder, autism, motor and speech delay, a range of learning disabilities. It slowly became evidentthat, for many of these problems, carefully designed therapy could improve the capacity and quality of life of these children.

Bioethics, which is the systematicreflection on the moral questions associated with the application of

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modern medical methods to the care of patients, was just beginning at the time this film was shown. The film stimulated vigorous discussion about the dignity ofpersons with special problems and wrestled with the moral crises that attend their care. The major prob-lem at the time was the one facingthose young parents: should the lives of such children be saved? The bioethical discussion made it clear that their lives matched our lives in human worth. They must be cher-ished and cared for. But how? Many of these children have problems beyond the ability of parents to cope. And care is beyond coping: it frequently required skilled and sometimes techni-cal intervention. Thus, special pro-grams, such as CPMC’s KalmanovitzChild Development Center, have comeinto existence. These excellent pro-grams which provide such specialized medical and developmental care, have multiple ethical concerns.

“Ashley’s story” is a vivid exampleof an ethical problem that can arise in this population. In the first month ofher life, Ashley was a floppy, unre-sponsive infant. Diagnosis of a seri-ous, incurable brain injury was made.Ashley was taken home by her griev-ing, yet loving parents. At six years of age, she was unable to hold up herhead, roll, change position, sit, hold a toy, or use language. At age twelve and a half, signs of early puberty andof accelerated growth appeared. Her parents who “considered her an inte-gral and much loved member of theirfamily felt out-of-home care would not be consistent with their view of the family or Ashley’s quality of life.” After consultation with experts, they

requested hormonal treatment to stop her growth, hysterectomy and surgical removal of breast buds.

The ethics committee of one of the finest Children’s hospitals in the country reviewed the case with care and judged the parents’ choices ethi-cally appropriate. When the involved physicians published the case, a stormof dispute arose. In a second article, those physicians answered with great care twenty five criticisms. They con-cluded that many of the criticisms hadmerit but did not counter the decision made thoughtfully by family and onlywith Ashley’s best interest in mind. However, the most cogent criticisms serve as “warnings…arguing for caution, the establishment of thought-ful criteria prior to implanting theseinterventions in other children and a mechanism for monitoring the use ofthese technologies in order to better assess the true risks and benefits for those in whom they are applied.” All this is the work of bioethics, in collaboration with parents and care-givers. (Gunther DF, Deikema DS. 2006 Attenuating growth in children with profound developmental disabili-ty: a new approach to an old dilemma. ArchPedAdolescMed 160: 1013-1017;

California Pacific Medical Center 4

Diekema DS, Fost N. Ash-ley revisited: a response to critics. 2010. AmJBioethics 10: 30-44)

Relatively few cases will be as dramatic as Ashley’s. The dominant ethical problem of this new field of intensive biomedical and behavioral therapy for children with devel-opmental disability will

remain how to accommo-date the growing numbers of children in need, and how to continue supportin less expensive settings. CPMC’sKalmanovitz Child DevelopmentCenter has a constant flow of new patients—at present, 120 new referralsa month and 280 families on a wait listfor evaluation of their children. Many children admitted need more attentionthan was originally expected, puttinggreat strain on the time and energy of dedicated personnel. Now the ethicalquestion becomes, “who should betreated when not all can be treated?” This is the agonizing ethical problem of rationing care.

If a new Johns Hopkins Baby filmwere to be made today, some 50 years after the first, it would not be a short documentary. It would be an epic, showing the multitude of children who can benefit from the new skills ofcare, and the drama of providing suit-ably for them in a world of strainedresources. It would also depict the many moral crises that face parents and providers.

cGaughey presenting data.

Ethical Times 5

Doing Ethics Quality J. Wes McGaughey

Promoting ethical health care prac-tices is the “right thing to do.” But,not only is it right, it also brings real benefits. Organizations with strong ethics programs have improved health care quality, improved employee morale, increased patient satisfaction, reduced legal risk, fewer ethics viola-tions, superior accreditation reviews, and lower utilization of wasteful or unwanted treatments. Each health care professional has an important interest in the ethical norms and values that are adopted by the other professionals at CPMC. These recipro-cal interests necessitate the creation of valid and reliable methods to assess each individual’s fundamental ethical obligations. Promoting and improving ethics quality leads to the achievementof, and excellence in, these benefits and a higher level of quality healthcare delivery. This is the reason why our Program is engaged in the work of quality improvement.

In our last issue, I reported on our 2011 Staff Ethics Survey. We have since advanced resultant action plans and quality improvement initiatives. The realm of quality improvement can be somewhat esoteric. Quality im-provement refers to metrics like what percent of heart attack patients receive aspirin within 24 hours before or after they arrive at the hospital (Aspirinis beneficial because it reduces the tendency of blood to clot in blood ves-sels of the heart and improves survival rates). It also refers to service quality like patient satisfaction. Our ethicsquality initiatives fall into the realm of service quality.

Our work in quality was stimulatedduring a colloquium on ethics qual-ity hosted by our Program in 2008. It

brought together a diverse group of experts from medicine, quality, and philosophy to discuss how ethics andquality relate. Further exploration led us to William A. Nelson, PhD, Profes-sor of Health Policy and Clinical Prac-tice at Dartmouth. Dr. Nelson and Dr. Andereck, Medical Director of PMHV, collaborated on developing methodsof translating ethics into health care quality delivery systems. This culmi-nated in a joint presentation at the David Thomasma International Bioethics Retreat, University of Cambridge, in June 2011 on how ethical practices could be examinedusing the clinical microsystems model of quality improvement.

We began presenting the results of the Staff Ethics Survey to the executive management and quality teams withthe intention of developing actionplans for quality improvement. Dr. Andereck has identified four recurring ethics issues as his top opportuni-ties for improvement: working with difficult patients, decision making forunrepresented patients, understanding conflicts between policy and what’sbest for patients, and physician rela-tions with industry.

CPMC’s executive management hasaggregated the Staff Ethics Survey data with data from other quality surveys and metrics and is using thedata in developing the organization’s strategic development plan. CPMCuses the Toyota management quality delivery system. In this system, pro-cesses are identified for improvement and teams are developed to address them. These teams engage in a process called Kaizen, a Japanese word which translates roughly to “take apart and examine.” Dr. Andereck and I are

working as members of these teamsto take apart and examine old pro-cesses and develop new processes that address the four systems-level repetitive issues identified above.

Ethics quality is becoming yet an-other unique feature of excellence at CPMC. Soon other Sutter affili-ates will also see ethics quality as apriority as well. In August, the Staff Ethics Survey was conducted for thefirst time at another Sutter institution, Sutter Lakeside Hospital in Lakeport.The administration at Sutter Lake-side is currently in the process of determining their priorities for ethicsquality for their strategic develop-ment plan. Other Sutter institutionshave also shown interest in our ethics quality initiatives. One of our goals isto engrain ethics into the culture of all Sutter institutions so that our patientsexperience health care of the highest medical and ethical quality.

Wes M

Paths

Ethical Times 5

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HappeningsThe late summer and autumn seasons brought about invitation and opportunity to share our bioethics knowledge. To start, three different grand rounds were led by our bioethicists at three different CPMC campuses (Davies, Pacific, and St. Luke’s). In working with a newpartner, Drs. Albert Jonsen and Ruchika Mishra, respectively, led ethics pediatric trainings for the staff of the Kalmanovitz Child Development Center.

In keeping with our goal of outreach to our fellow ethics programs, Dr. Mishra took part in an ethics conference at Washington Hospital, Fremont. Dr. Jonsen was the keynote speaker and presented a paper at a conference titled “The Spark of Conscience Inflames Debate: Conflicts of Conscience in Health Care.” This was organized by and held at the Markkula Center for Applied Ethics, Santa Clara University.

Program in Medicine & Human Values

2395 Sacramento Street, 3rd floor San Francisco, CA 94115 Tel: 415-600-1647 Fax: 415-600-1355 Hotline: 415-600-3991 www.cpmc.org/ethics

Email CPMC Ethics Committee: ethics@sutterhealth.org

William Andereck, M.D. Co-Director and Medical Director

Albert Jonsen, Ph.D. Co-Director and Senior Ethics Scholar in Residence

Linda Hummel, Ph.D. Program Supervisor

Steve Heilig, M.P.H. Public Affairs Specialist

Antonio Kruger Administrator

Thomasine Kushner, Ph.D. Senior Bioethicist

Wes McGaughey Research Analyst, Grants & Study

Ruchika Mishra, Ph.D. Bioethicist

Lawrence Schneiderman, M.D. Visiting Scholar

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