Reference no: EM133914099
"Knowledgeable Client" and "Knowledgeable Nurse"
Regardless of the cause of disability, the nurse must see beyond the disabling impairment, carefully assessing each affected person's perceptions of the disability experience. A person who lives with a disability commonly becomes an expert at knowing what works best for his or her body. This case differs significantly from the person with a new disabling illness or injury, or the parent of a child with a newly diagnosed disability, who needs information and time to adapt to their new change in circumstance. The Intersystem Model (Artinian et al., 2011) refers to the first-described person as the "Knowledgeable Client." In this case, a client has been living with disability for an extended time and has become sensitive to the needs of his or her body. The nurse should ask the client what works best for him or her and what goals the client is pursuing. The client wants the nurse to listen to his or her concerns and may benefit from a referral to health-related resources. However, if the nurse attempts to tell the Knowledgeable Client what to do without seeking input, the client may become angry and seek help elsewhere.
The clients in the second situation need the services of the "Knowledgeable Nurse" (Artinian
et al., 2011). The client with a newly diagnosed condition can benefit from the nurse's information about the disability and the available community and governmental resources. It is important to note that if the nurse is unable to help a newly diagnosed client learn how to manage the disability and accept himself or herself as disabled, the nurse may compromise the client's adaptation and future client/nurse interactions.
Active collaboration between the client and nurse is required to develop a plan of care that both will find acceptable. Health care for PWD must incorporate remedies that address issues surrounding access to health care and the resolution of environmental and social barriers that prevent their full participation in society. Encouraging recreational time and physical activity provides a positive stimulus for PWD and multiple psychosocial and physiological benefits-for example, hippotherapy, a therapeutic method of horseback riding, shows evidence that it enhances motor strategies, which can improve functional task performance by enhancing reaction time among individuals with intellectual disabilities. Not only does the activity of horseback riding provide a rich social environment with the interaction between the PWD and the animal as well as other equestrians, but it also has demonstrated improvement in balance and strength in individuals with IDD, which could have a profound impact on their quality of life (Giagazoglou et al., 2012).
Ethical Issues for People Affected by Disabilities
PWD and their families are concerned about the same contemporary ethical and legal issues that concern all people. However, some of the associated issues carry particular interest for PWD and their families, including questions and problems surrounding definitions of respect for human beings, beneficence (do good), and nonmaleficence (do no harm), as well as the rights of PWD. The Patient Self-Determination Act (PSDA) of 1990 is one example. This law mandated that health decisions are communicated and protected and that patients, upon admission to a health care facility, are asked if they have a durable power of attorney or an advance directive. Families, guardians, or individuals are reluctant to address end-of-life decisions when health is good, so when conditions decline, bioethical principles must be balanced and applied, sometimes by a team or committee.
Determining the appropriate care for infants, children, and adults with disabilities is a complex issue for families to consider. Associated issues include choosing between abortion and continuing the pregnancy when prenatal screening suggests the presence of impairments and health problems. In 2009, parents filed a $14 million malpractice suit when prenatal testing failed to correctly diagnose Down syndrome. They stated that an accurate test result would have led them to end the pregnancy (Green, 2009). Health care professionals may convey negative attitudes about life with a disability, so it is vital that accurate and balanced information be provided. The Prenatally and Postnatally Diagnosed Awareness Act of 2008 (PL 110-374) uses federal resources to produce and distribute information about prenatally and postnatally diagnosed conditions (Dresser, 2009).
Clients' spiritual perspectives play an important role in decision making when there is a change in health status or a life-threatening illness. People who establish hope and meaning in their lives may choose to positively reframe the difficulties associated with functional limitations that others may find intolerable. Holistic caregiving requires the nurse to assess and promote spiritual health along with physical and psychological well-being.
Differences in quality of life and justice perspectives intersect with concerns about the control of health care costs. Advances in neonatology are responsible for increasing numbers of very-low- birth-weight babies, who are at high risk for cognitive disorders and other serious health problems (Reichman et al., 2008). Many parents of CWD desire or incur (costly) life-sustaining treatment. In contrast, some people who are either newly disabled or nondisabled may see future life as a disabled person so burdensome that they may refuse extraordinary medical treatments and/or actively seek to end their lives (Hahn and Belt, 2004).
For health care professionals to understand the end-of-life desires of the disabled population, more research is needed. Focus groups can yield beneficial information; however, feasibility is challenging. Participants may struggle to understand abstract concepts such as death; furthermore, physical environment supports and consulting for recruitment and consent among this vulnerable population are difficult (Savage et al., 2015). End-of-life decision making for children with severe developmental disabilities must involve a determination of whether the caregiver or parent will continue care necessary to sustain life, such as maintenance of a ventilator or artificial nutrition via gastrostomy tube, or cease support. In a meta-analysis of end-of-life decisions among the severe IDD population aged 0 to 18, parents felt physician information regarding their child's situation was insufficient and that to speak with other parents who had faced similar dilemmas would be most helpful (Zaall-Schuller et al., 2016). Shared final decision making was favored 40% of the time, whereas independent decisions without the physician were favored 41% of the time. A key influence was perceived suffering evidenced by visible facial expressions and eye movement and declining quality of life (Zaall-Schuller et al., 2016).
Genetic technology, such as prenatal cell-free DNA screening for chromosomal abnormalities, may lead to elective abortions but also offer hope for the prevention and cure of diseases. A recent study reported the elective termination rate at 67% for singleton and 60% for twins after prenatal testing resulting in aneuploidy, an abnormal number of chromosomes (Dobson et al., 2016). At the other end of the life continuum, advocacy groups, such as Not Dead Yet, have taken a strong stance against physician-assisted suicide, fearing it will lead to the early or forced death of PWD. Disability rights proponents recognize that the devaluation of PWD may promote their unnecessary and untimely deaths (Ne'eman, 2009). The case of Terri Schiavo, described in the Ethical Insights box, illustrates some of these issues.
Ethical Insights
When Is Life Worth Continuing?
The world watched while Terri Schiavo's situation unfolded amid numerous legal and legislative challenges surrounding whether her feeding tube should be discontinued, and conflict developed between her parents and her husband/guardian, Michael. Disability rights groups and right-to-life advocates kept vigil for weeks outside the nursing home where Terri resided. Terri, at age 34, experienced an anoxic event that led to brain damage. Although previous court decisions have clearly established a person's right to discontinuation of treatment, including the provision of food and fluids, there was no documentation or advance directive indicating Terri's wishes. Terri's parents offered to assume guardianship of their daughter, believing her to be both responsive to her environment and desiring life in her current condition. Michael fought to have her feeding tube removed, stating that in previous discussions Terri had said that, in a similar situation, she would not want to continue living. Medical discussions focused on the extent of her "vegetative state" and capacity to respond to her environment. Seven years later, amid numerous court challenges and Michael's obtaining a reported million-dollar-plus malpractice settlement designated for his wife's care, the court ordered that Terri's feeding tube and all hydration be stopped as requested by her husband. She died several days later.
What are the relevant issues when families are in conflict about what medical treatment the person with a severe disability would want in the absence of written advanced directives? What values and ethical principles should be considered? As health care professionals, evaluate this case in terms of the principles of utilitarianism and beneficence or nonmaleficence.