Caring for Children Who Have Severe Neurological Impairment by Julie M. Hauer

Author:Julie M. Hauer
Language: eng
Format: epub
Publisher: Johns Hopkins University Press
Published: 2013-10-15T00:00:00+00:00

SUMMARY OF DECISION MAKING FOR CHILDREN WHO HAVE SNI: DECLINING BASELINE HEALTH AND DECREASING BENEFIT FROM ACUTE TREATMENT OF RESPIRATORY EXACERBATIONS

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• When care plans and decisions are being considered, parents benefit from an opportunity to reflect on, share, and celebrate stories about their child’s life.

• Rather than focusing on the inherent issues of uncertainty, caregivers can use a schematic for anticipating risk and outcome (figures 6.3 and 6.5):

—Identifying children at risk for respiratory failure

—Assisting parents in reflecting on their child’s decline in health and decreasing benefit from acute and chronic treatment, thus facilitating reflection on the benefit and harm of acute treatment and surgical interventions: “When are we doing to versus doing for my child?”

—Use of the case illustrations and discussions in this chapter to empower the expertise of parents and other caregivers who see the child every day

—Use of expert information from parents to help medical teams better understand the potential benefit and harm of an intervention based on the child’s health trajectory

• Decisions about surgical interventions must (1) factor in what the intervention can “fix,” (2) acknowledge other possible contributing factors that the intervention will not alter, and (3) consider the interventions in the broader context of the child’s health trajectory.

• Ideally, decisions about intubation and mechanical ventilation are anticipated. Information and recommendations can be considered, without expecting a decision to be made.

• Decision making involves more than the medical facts; it also involves the values, hopes, goals, and worries of the family.

• When identifying and clarifying information, parents benefit from a team that attends to the emotional and spiritual needs of the family, including siblings, and recruits the expertise of social workers, chaplains, and child life specialists, for example.

• Fears can shift, such as from the worry that a child will not recover, despite treatment, to the worry that the child’s suffering will be prolonged with continued treatment.

• Hopes and goals can shift, such as from using treatment to maximize recovery of health to using care plans to maintain comfort.

• Fundamental is a parent’s desire to be a “good parent.”

• Parents benefit when their hopes are supported rather than viewed as an “unrealistic” view of their child’s future (Feudtner et al. 2010).

• Distressing symptoms must be identified, managed, and anticipated; the child’s suffering must be minimized.

—Management of distressing symptoms requires expertise; this can be provided by a palliative medicine specialist, for example.

—Without symptom management expertise, there is often an overemphasis on the risk of symptom management, which can leave families believing they need to choose between life-sustaining treatment or “comfort care” until their child dies.

—Symptom treatment for dyspnea can be incorporated into medical treatment plans for acute respiratory exacerbations, as outlined in figure 6.4.

—Addressing dyspnea can lessen decisions to use an intervention out of the fear that the child will suffer without the intervention.

• Families should have the opportunity to reflect on the benefits and burdens of care plans in the hospital and the home; this is an important consideration for all chronic conditions.

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