Recent public interest in legal cases related to the withdrawal of artificial nutrition and hydration at the end of life, such as the highly publicized Terri Schiavo case (Quill, 2005), have created a climate in which a potentially life-sustaining intervention, such as gastrostomy tube (G-tube) feeding, might be questioned as futile, and even cruel, when suggested for a person with a severe disability experiencing a health crisis. Lack of understanding exists among some in the health care community and among members of the general public (including some guardians and family members) concerning the distinction between managing medical challenges associated with a chronic disability and providing care at what might be mistakenly perceived to be the end of life (King, 2005). This can have potentially devastating consequences. As suggested by Pugh (2005), the distinction between living with a disability and a terminal illness may be become “blurred” (p. 35), and treatment routinely provided individuals with a disability, such as G-tube feeding, might be denied as futile. The result may be an otherwise preventable death (Turnbull, 2005a).
The Case of Alice
Alice was a 49-year-old woman with congenital hydrocephalus and lifelong intellectual disability living in a state-funded community care facility. Her diagnoses included profound intellectual disability, bipolar disorder, seizure disorder, legal blindness, and scoliosis. Her strengths included the ability to feed herself with assistance, walk short distances with a walker, communicate using one- and two-word phrases, and sing songs she had learned as a child. Alice was described by her caregivers as a charming, outgoing woman with a good sense of humor who enjoyed singing, visits and phone calls from her family, animals (especially puppies), “swimming” at the community YWCA, and eating her favorite foods.
For unknown reasons, Alice became lethargic and unresponsive, stopped talking, and stopped eating and drinking. Medical tests failed to indicate a reason for her decline, and although there was no evidence of a terminal illness, her family believed she was dying. The nursing staff at the group home where she had lived for 13 years suggested that a G-tube be placed to provide nutrition and hydration, but family members expressed their adamant opposition. They argued that a feeding tube not be placed because Alice's joy in life was from eating. Furthermore, they didn't want to prolong Alice's suffering and wanted to allow her a natural death. Her uncle, Alice's guardian, acknowledged that Alice “wasn't eating enough to sustain life” but justified his refusal of a G-tube through referencing recent literature (Gillick, 2000) indicating that feeding tubes are ineffective in prolonging life and that, rather than preventing suffering, they can actually bring it about through causing aspiration pneumonia. Alice's physicians, bound by the standards of their profession to generally accept the decision of a surrogate decision maker in such cases (American Medical Association, 2007) and privately expressing their own concerns regarding the quality of Alice's life, declared further treatment futile. The central venous line through which Alice received hydration and medication was disconnected; she was diagnosed with failure-to-thrive, a terminal diagnosis making her eligible for placement in a hospice; and she was moved to a hospice a short time later.
This example is based upon an actual case. A brief review of its important elements may prove beneficial in clarifying the rights of people with disabilities to life-sustaining medical treatment and, thereby, enable others to more effectively advocate in support of these rights. The issues to be addressed include legal and professional guidelines related to withholding nutrition and hydration, determinations of futility, and recent research on the risks and benefits of G-tube feeding.
Legal and Professional Guidelines
Principles guiding health care decision making have been laid out in federal regulations implementing the Child Abuse Prevention and Treatment Act (42 U.S.C. Sec.5101; 45 C.F.R. Part 84, Section 84.55). These principles prohibit discrimination due to disability in health care and require that medically beneficial treatment be provided. A presumption in favor of treatment is articulated, although this presumption may be rebutted if (a) the individual is in an irreversible comatose state, (b) the treatment would be painful and not produce benefit, or (c) the treatment would not prevent death (Turnbull, 2005b). In Pennsylvania, where Alice resided, a state policy directive (MR Bulletin No. 00-98-08, 1998) consistent with these principles and referencing the Americans with Disabilities Act requires that people with intellectual disability have access to the same life-sustaining treatment as provided to those without a disability. Substitute decision makers may only terminate treatment if an individual has a terminal condition or is permanently unconscious.
Relevant professional guidelines are consistent with these legal standards. An American Association on Intellectual and Developmental Disabilities (AAIDD, 2005) position statement provides that nutrition and hydration may be withheld only if such treatment would prolong the process of dying, cause suffering, or if an individual is in an irreversible coma. An ARC policy statement (The Arc, 2002) asserts that surrogate decision makers have the authority to refuse nutrition and hydration only if a person's condition is terminal and death is imminent. Standards of the National Guardianship Association (National Guardianship Association, 2007) indicate that when making decisions regarding the withholding of medical treatment, including artificial nutrition and hydration, there should in all cases be a presumption in favor of continued treatment. This same presumption in favor of treatment is articulated in a position statement of Syracuse University's Center on Human Policy (2005), with the additional provisions that life-sustaining treatment, including the provision of food and liquids, should not be withheld unless death is genuinely imminent and the treatment is objectively futile. Because judgments of futility are sometimes based on subjective views regarding an individual's quality of life, the position statement's requirement that futility determinations be based on an objective appraisal of the chances that a treatment would be successful represents an important contribution to policy guidelines.
Because Alice was diagnosed with a condition that made her eligible for hospice placement (failure-to-thrive) and Alice's doctors stated that further treatment was futile, it appeared legally and professionally defensible to withhold nutrition and hydration. However, in Alice's case, failure-to-thrive occurred not in conjunction with a terminal illness but because she had, for unknown reasons, stopped eating. Failure-to-thrive is generally treatable in such cases (Bicket, 2004; Egbert, 1996), and temporary feeding via a G-tube may have helped Alice safely through her medical crisis.
It is likely that placement of a G-tube would have been successful in providing Alice with life-sustaining nourishment and hydration. That being the case, the statement by her physicians that a feeding tube would be futile was not based upon physiological or objective futility but on a conception of qualitative futility that has been questioned both in the fields of medicine and disability rights (Noble, 1999; Veatch, 1994; Weijer, 1999; Werth, 2005). Qualitative futility is assessed through asking questions such as, “Will the quality of life resulting from a medical intervention be so poor that the intervention does not actually benefit the person?” and “Will that person's life be worth living?”
In Alice's case, the relevant question was, “Is the quality of Alice's life sufficient to justify its preservation through providing artificial nutrition and hydration?” Despite caregivers' description of Alice as a charming woman who enjoyed many aspects of life, her family and physicians felt the quality of her life was so poor that efforts to keep her alive were not warranted. However, the use of subjective judgments based on quality of life to determine whether to withhold life-sustaining treatment is inconsistent with public policy (Syracuse University, Center on Human Policy, 2005), case law (Goldworth & Benitz, 1995; In the Matter of Baby K., 1993; Paris, Crone, & Reardon, 1990), as well as Pennsylvania state policy (MR Bulletin No. 00-98-08, 1998). Concern that citizens with disabilities in Pennsylvania might be discriminated against due to negative appraisals of the value of their lives is reflected in policy that prohibits determinations of futility based on value judgments regarding an individual's quality of life. Unfortunately, at the time Alice was denied a feeding tube, those advocating for her were not familiar with this state policy nor were they aware that determinations of futility could be based on questionable quality-of-life considerations.
Benefits and Risks of Feeding Tubes
Alice's guardian used recent research (Gillick, 2000) questioning the value of tube feeding to reject placement of a feeding tube. Although tube feeding in cases of advanced dementia and other terminal conditions is no longer recommended (Angus & Burakoff, 2003), feeding by G-tube is considered safe and effective for people with disabilities who have severe feeding difficulties (Borowitz, Sutphen, & Hutcheson, 1997; Heine, Reddihough, & Catto-Smith, 1995; Mathus-Vliegen, Koning, Taminiau, & Moorman-Voestermans, 2001; Samson-Fang, Butler, & O'Donnell, 2003). Especially pertinent to Alice's case is the indication for placement of a feeding tube in individuals who refuse to eat but show no evidence of a terminal illness (Angus & Burakoff, 2003). Feeding via G-tube has been shown to be of consistent benefit in bringing about weight gain and improving the quality of life of individuals with disabilities and their caregivers (McGrath, Splaingard, Alba, Kaufman, & Glicklick, 1992; Smith, Camfield, & Camfield, 1999; Sullivan et al., 2004; Tawfik, Dickson, Clarke, & Thomas, 1997).
There are complications associated with G- tubes: They may fall out, leak, or become blocked and bleeding or infection may occur at the ostomy site. However, the risks associated with these complications are outweighed by benefits in cases where this treatment is indicated (DeLegge et al., 2005). A concern that G-tube feeding might increase the risk of aspiration pneumonia (a fear expressed by Alice's guardian) was addressed in two recent studies involving individuals with severe disabilities. Both Gray and Kimmel (2006) and Sullivan et al. (2006) looked at rates of pneumonia and other chest infections prior to and 1 year following G-tube placement. They reported significant decreases following placement of feeding tubes. The fears expressed by Alice's guardian were not supported.
People with severe disabilities are at risk due to negative attitudes concerning the quality of their lives and the process through which physicians make judgments regarding futility of treatment. When questions arise concerning the provision of artificial nutrition and hydration, life-sustaining treatment may be withheld because of negative biases regarding the value of their lives. Misinformation regarding the risks and benefits of tube feeding in people with disabilities and confusion because this intervention has recently been noted to lack effectiveness in some other populations pose additional risk factors. Practitioners are urged to take care when explaining to surrogate decision makers the complex issues involved in decisions to withhold treatment, and they need to be aware that physicians give considerable weight to the decisions made by surrogates when making determinations of futility.
Back to Alice. Fortunately, a short time after her placement in a hospice, she began to eat again, and 3 weeks after she had been given a terminal diagnosis, the diagnosis was withdrawn. However, Alice's life had been put at risk due to fear and the lack of accurate information. Vigilance is needed to prevent others from experiencing similar risk.