during the assessment, will be provided. Discussion and decisions about Robert’s and the family’s goals of care are paramount. The benefits and risks of any treatment options will be considered before making any determination about treatment choices. Diane will conduct a thorough assessment of any psychological, social, spiritual, or existential needs of Robert or the family unit. Stress is a common symptom of patients with serious illness, and Diane will address any reports or symptoms of stress in Robert or the family unit. A decision point that might come up is when to stop treating Robert’s pancreatic cancer. This will be a very difficult decision and should include Robert, his family, perhaps close family friends or religious/spiritual leaders, and his healthcare team. 2. The integration of palliative care in Robert’s plan of care will begin with an assessment of the quality of care that is currently being provided. Diane will emphasize that palliative treatment does not mean ending care for Robert. In addition to Robert’s current care providers, it is also routine practice for palliative care specialists to co-manage the patient’s care. Palliative care services for Robert may include the following. ● Providing relief from pain and other physically distressing symptoms ● Providing a caring approach that embraces psychological, social, and spiritual support for Robert and his family members ● Offering a support system to help Robert live as actively as possible until death and to help his family cope in their bereavement ● Incorporating services as early as possible in Robert’s course of illness, in conjunction with other therapies that are intended to prolong life, to better understand and manage clinical complications 3. By using a palliative care team approach to address the needs of Robert and his family, including bereavement counseling if indicated, quality of life is improved for Robert and his family. Multiple care providers, including oncologists and other medical providers, primary nurses and nursing assistants, chaplains and other religious leaders, and social workers, will all work together to meet Robert’s needs, reduce distress, and minimize suffering. Case Study 3 Baby Brooke suffered a prenatal hypoxic injury of unknown e tiology, was born at 37 weeks’ gestation at a local hospital center, and had Apgar scores of three at one minute and six at five minutes. She was intubated, provided ventilation support, and transferred to a neonatal intensive care unit (NICU) outside the hospital facility 90 minutes away from the family home. Baby Brooke developed seizures on day one of life and was in the NICU for two months until seizures were controlled with Phenobarbital (initial), then Levetiracetam (maintenance) and she was extubated and breathing independently and effectively. She was discharged to home with her parents, Kelly (19 years old) and Jim (21 years old) with an apnea monitor, which both parents and all grandparents received training on. Kelly and Jim currently do not have full-time work and live with Jim’s parents. Kelly’s parents are involved in the care of Brooke; however, they are not supportive of Kelly and Jim’s relationship, as they are not married. At three months of age, after suffering from several apneic episodes that required Kelly and Jim to stimulate Brooke along with more frequent and longer lasting seizures at home, Brooke’s pediatrician sent her to the emergency department (ED) for further medical evaluation and treatment, and to admit her to the pediatric intensive care unit (PICU). At the same time, he referred the family to the hospital’s palliative care team to be evaluated for the potential of a life-limiting brain injury. Jim’s parents were supportive; however, they were concerned about the distance (90 miles away), the cost of this type of consult, and what it means to have palliative care. Brooke is covered by Medicaid for her medical care.
Upon admission to the ED, Brooke was crying and inconsolable. Her mother was cradling and rocking her to try to soothe her. Brooke’s vital signs were stable, except for her respiratory effort, which was tachypneic, yet weak, and her oxygen saturation (SaO2) was 88% on room air (RA). The RN provided Brooke with 4 LPM of oxygen via a nasal cannula, which increased her SaO2 to 92% and reduced her inconsolability. After evaluation by the ED, PICU, and pediatric surgical teams, Brooke was admitted to the PICU, where the palliative care team provided a consult. A few days later, the infant received a tracheostomy and g-tube placement because of her apnea and her ineffective swallow. There were no complications. Her parents and grandparents were informed of this plan. Three weeks later, she was sent home with her parents and was required to be on home ventilator support and intermittent tube feedings, which required around- the-clock home care nursing. The palliative care team also provided a home care plan to help manage Brooke’s comfort. At eight months of age, Brooke was referred to hospice care by the palliative care team after multiple referrals to the ED by her pediatrician and extended readmissions to the PICU for seizures. After being evaluated by the PICU team, child life, social work, nutritional services, and multiple ancillary services, requests were made to nursing to help with advanced care planning. Brooke’s pediatrician, however, did not initially agree that Brooke was suffering from a life-limiting or terminal illness and informed the family of his opinion. Two weeks later, after Brooke suffered from more seizures and deteriorated neurologically with loss of consciousness, further meetings occurred without the palliative care team; however, the team agreed with the terminal prognosis and diagnosis. Unfortunately, Brooke’s parents did not agree with the healthcare team, and the family didn’t agree with one another. Mom wanted to do everything possible and did not believe Brooke was deteriorating, nor did she believe the prognosis. She believed the PICU team was providing too much morphine, which was causing her not to wake up. Dad did believe Brooke’s health status and prognosis and wanted to move forward with hospice care. Brooke’s grandparents (Kelly’s parents) sided with Jim and wanted the best care possible, recognized the need for hospice care, but didn’t want Brooke to die at home. When approached by the family, the pediatric nurse was unable to provide any information on options regarding advance directives or hospice care. The nurse requested a social work consult, but no one was available. The family could not come to an agreement, and Brooke was not admitted into hospice care. Brooke remained in the PICU until her death six days later. Her parents and grandparents planned on being in the hospital that day but were unable to be with Brooke when she died. Questions 1. Brooke’s care was complex from the beginning and most likely was impacted by what factors? 2. When would have been the best time to refer Kelly and Jim to the palliative medicine team? 3. What is the biggest barrier to hospice care in this case and among many other pediatric patients? Responses 1. Brooke’s care was complex from the beginning because of multiple factors, including having multiple disciplines involved in her care, including several subspecialty care teams. In addition, the care professionals, including the nursing staff and social worker, most likely did not have the skills or tools to educate and help the family be more involved in the decision-making process. Lastly, Brooke’s parents were young and reliant on their own parents, and quite possibly limited in their understanding and capabilities. 2. Understanding that Brooke suffered a prenatal event, a palliative care consult would have been optimal during the prenatal period. An additional opportunity would have been during Brooke’s time in the NICU, instead of waiting until finally receiving this service in the PICU. There were several lost opportunities to help the family
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