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Bioethics Considerations Regarding The Development Delayed In-Patient

Submitted by Rev. William E. Dorman, D.Min.,
Director of Pastoral Services, Presbyterian Hospital, Albuquerque, NM;
Certified Clinical Bioethicist; member of the APCTM Bioethics Committee
August, 2000

Persons with developmental disabilities receive care in a variety of settings: homes, state institutions, and community living. A person with developmental disabilities is someone having deficits in three or more learning and/or living areas occurring from injury, genetics, or other insult to the brain occurring before birth or before early adulthood.

Today, there is a trend in the United States to end the practice of institutionalizing persons with developmental disabilities, utilizing instead the approach of community living. Community living is deemed to offer the person with developmental disabilities many advantages that are not available in an institutional setting. One clear distinction between institutional care and community living is in the area of medical care. Whereas institutions had on-site personnel and facilities to address some of medical needs of the person with developmental disabilities, persons with developmental disabilities in community living contexts access their medical care from the community at large. Consequently, community hospitals are seeing an increase in the number of patients with developmental disabilities being admitted to their facilities.

When bioethical questions arise during the hospitalization of the patient with developmental disabilities', there are unique features that come to bear on the bioethical decision-making process. What follows is a brief sketch of a situation intended to help identify some of those unique features.

One afternoon a person with developmental disabilities was rushed from his day program center to the hospital emergency room. He had fallen at the center. Upon examination at the ER, it was discovered that he had experienced a stroke. He was admitted to the ICU, and placed on a ventilator. Subsequently, he was extubated, moved to a subacute floor, and then to skilled nursing where a feeding tube was inserted. After a period of time, when it became apparent that the neurological damage was irreversible and debilitating, the family declared their preference that the feeding tube be withdrawn. At that point, the patient's medical care became the focus of ethical deliberations and discussions.

How is this situation different from other end-of-life treatment and care decisions, such as cessation or withdrawal of treatment, that routinely emerge' Clearly there are several common features and similarities between this situation and other common treatment dilemmas. Nonetheless, there are unique features that distinguish this case.

One feature is "Capacity." Capacity, sometimes referred to as "competency," is understood to be the ability to understand treatment options, the specifics of each option, and the possible outcomes or consequences (benefits, risks, burdens). Persons with developmental disabilities may have never had capacity; or, may have had capacity earlier, but no longer possess capacity. A person never having capacity never was able to state preferences and values. In these instances, treatment decisions are made on a "best interest" basis. If the person previously had capacity, but presently lacks capacity, that person's spokesperson(s)--agents, surrogates, guardians--have some basis for making treatment decisions based on a "substituted judgment" basis. Since the patient needs a spokesperson, identifying who may make treatment decisions (sign consent forms) is a critical, and often, complex undertaking (see "Context of Care" below).

The Americans with Disabilities Act ("ADA") is another distinguishing feature. A patient with developmental disabilities falls under the umbrella of this act, which was signed into public law by President George Bush on July 26, 1990. The ADA protects a wide-range of disabled persons, including persons with developmental disabilities, from discrimination. Persons with developmental disabilities have met with discrimination and prejudice in society at large, including the health care community. It should come as no surprise that family members or the broader team caring for this patient may be suspicious of, or even antagonistic, toward the health care team.

"Protection and Advocacy ("P & A")" is a federally funded organization created as an outgrowth of the "ADA." Its specific mandate is to protect disabled persons, including the person with developmental disabilities, from discrimination. Further, "P & A" is mandated to advocate for the rights of the disabled population in accordance with the ADA. By law, "P & A" has the right to insert itself into a situation where it is concerned for the well being of the person with developmental disabilities. It may come as a surprise to the hospital that at its discretion, "P & A" has the right to access patient charts, and participate in patient treatment discussions and decisions. P&A may seek a court hearing to determine guardianship.

Unlike the majority of hospitalized patients, persons with developmental disabilities are in a "context of care." "Context of Care" means that care and treatment plans and decisions in the community living setting typically involve many people. Those caring for the person with developmental disabilities include a treatment team (interdisciplinary professionals), direct care providers, administrators, the family, a guardian, and on occasion "P & A". Consequently, a sizeable number of persons are concerned about the patient's well-being, and have and want a voice in treatment decisions in the community living setting and the hospital itself. The Ethics Committee will want to be prepared for this chorus of voices. The health care team caring for the patient needs to be alerted that many people will want to see the patient, and may voice opinions about the patient's care.

Finally, when it becomes evident that a bioethics consultation is in order, the Ethics Committee faces several challenges. One challenge is that of inclusion. The Ethics Committee will want to be as inclusive as possible, while at the same time striving to identify who will authorize treatment decisions. Sometimes the Ethics Committee may have to wait while differing factions (the family; the guardian; "P & A") sort out which of them has the right to speak for the patient. While it is critical that the consult be as inclusive as possible in terms of participants, it is also important that the number of persons be manageable. During the consult, a second challenge may be to discern who speaks finally for the patient' Even if it is clear who has the final decision-making authority, others persons will want to have their perspective heard and respected as someone who cares about the patient. A third challenge is to assure everyone present that the patient's medical care is being considered in the same manner and guided by the same principles as would the care for any other patient, i.e., without prejudice.

Hopefully the identifying of these components will prepare others for some of the nuances and factors accompanying bioethical considerations for the patient with developmental disabilities.