Integrating Palliative Care Into the PICU
Integrating Palliative Care Into the PICU
Caring for patients and families in the PICU presents several challenges that improved generalist- and specialist-level palliative care services can help to address (Table 1).
The importance of assessing and managing pain and other symptoms is a sine qua non of intensive care. Pediatric intensivists report a high level of confidence in their ability to prevent and treat pain, yet successful symptom management may still be difficult to attain. Wolfe et al found that distressing symptoms before death were reported more frequently by parents of children with cancer than by physicians and that parents felt the majority of children suffered "a lot" or "a great deal." Gaps in optimal pain and symptom management may result, in part, from the challenges in assessment. A child's variable and evolving development necessitates targeted pain assessments and treatment tools. In addition, if parents' assessments of a child's symptoms are systematically different than clinicians' assessments, there can be an opportunity to explore and explain the differences. Tools to reliably assess pediatric symptoms, such as fatigue, delirium, respiratory distress, or nausea, are not as available as for adult patients. Whereas involvement of palliative care experts in pain and symptom management in the PICU may often be deferred until after a transition to end-of-life care, earlier engagement can be appropriate and could provide broader support for patients, families, and PICU clinicians. For example, a palliative care consultant might collaborate with the PICU team to include parent assessments of a child's symptoms or to more broadly address a child's emotional and psychological distress related to these symptoms.
The stressful PICU environment can have far reaching ramifications for patients and families. The provision of palliative care has the potential to improve quality of life, reduce pain and suffering, and in some cases extend longevity. Children may be in the ICU for weeks, making it especially important to assess and optimize quality of life during a child's hospitalization. Children with chronic conditions are at risk of the longest ICU stays as well as repeat admissions. Interdisciplinary palliative care services can help these patients maintain connections to school, friends, and activities to promote quality of life.
The quality of life of the entire family is impacted by a child's PICU hospitalization. Balluffi et al reported that over 20% of parents endorsed some aspect of posttraumatic stress disorder after PICU discharge, regardless of the child's outcome. Critical illness threatens the ability of parents to protect and provide for their children. Parents must maintain a reserve of physical and mental health in order to manage the ongoing demands of parenting, including caring for other siblings, and preparing for an uncertain and potentially frightening future. Families can better cope with the acute stressors in the PICU given adequate resources and support. Meyer et al found that families' highest priorities for improving the PICU experience were honest and complete information, ready access to staff, effective care coordination, emotional expression and support by clinicians, preservation of the parent-child relationship, and freedom to express their faith. Overall, 73% of parents reported spiritual/religious themes including prayer, access to spiritual care, and belief that the parent-child relationship endures beyond death. Support for the family unit can be optimized by the collaboration of the PICU team with palliative care providers, who can help ascertain and address family needs throughout the PICU experience.
Parents of PICU patients often face difficult and value-laden decisions in the context of bewildering amounts of information and an "irreducible amount of uncertainty". Families are guided in this process by a large number of clinicians, many of whom they do not know yet must entrust with the well-being of their children. Communication expertise around eliciting patient and family preferences and integrating them into serious decision making is part of the core set of skills for PICU providers, but can also be supported by palliative care specialists. The continuity that palliative care specialists may have across the different sites of care for a patient and family further strengthens the capacity of the healthcare team to communicate effectively in an ongoing process.
The PICU is a technologically focused environment with constantly emerging, highly detailed patient information. Many parents prefer that this information be integrated into the larger context of the child's overall care, so that individual treatments, status changes, and decisions are viewed within a "big picture" perspective. These conversations should account for potential differences in cultural beliefs, education, values, and preferences that may exist between clinicians and families. Decisions are often needed quickly in the ICU, giving parents little time to absorb the complicated ramifications. Conflicts between family members and medical teams regarding care decisions are common in ICUs. Studdert et al documented conflict in over 50% of cases where children spent more than 8 days in the PICU. Team-family conflicts were the most common and were more often associated with poor communication than other types of conflict. Intrateam conflict may occur in over one third of PICU cases and often centers on clinician disagreement about the continued use of aggressive interventions. When conflicts arise, a palliative care specialist can serve a valuable role as a medical interpreter for both the family and staff, reducing the burden of stress and conflict, and promoting consensus for the benefit of the child. Palliative care specialists can also help to clarify when conflicts warrant ethics consultation.
Discussions regarding preferences for life-sustaining treatments near the end-of-life are particularly challenging, and clinicians may avoid or delay these important conversations. Children's physiological resilience and variability complicate predictions about their responses to ICU treatment. New surgical techniques and other treatments make it harder to define a therapeutic endpoint. Many PICU clinicians and subspecialists are on a weekly or monthly rotation schedule, making continuity difficult for optimal care coordination and medical decision making. Frank discussions about prognosis may only occur after clinicians judge the child's future quality of life as unacceptable when they wish to recommend discontinuation of life-prolonging interventions.
Data suggest that missed opportunities exist for engaging in family conferences with parents of PICU patients who face life-altering decisions. Protocols for routine family conferences for adult ICU patients with a mortality risk greater than 25% have been shown to reduce ICU length of stay and resource utilization. Randomized controlled trials in adult ICUs suggest that improving family-clinician communication in the ICU can dramatically reduce symptoms of anxiety, depression, and posttraumatic stress disorder among family members. Palliative care consultants can support family conferences both through their presence at these conferences as well as supporting ICU clinician education regarding family conferences.
Regardless of the child's condition and prognosis, integration of palliative care principles from the time of diagnosis can optimize continuity of care as the patient transitions across sites of care—including PICU, general pediatric wards, hospice, or home. In 2013, Keele et al reported on a cohort of over 24,000 hospitalized children and found that palliative care consultation reduced the use of invasive interventions, decreased hospital lengths of stay (17 vs 21 d), and reduced deaths in the PICU from 80% to 60%. In academic pediatric hospitals with mature palliative care programs, most palliative care consultations are for children with potentially life-limiting illnesses who are not at the end-of-life, as evidenced by the fact that over 70% of patients may still be alive after 1 year. A palliative care consultant can assist in determining sites of care that can accommodate a patient's medical needs and maximize the family's quality of life. Parents become accustomed to constant monitoring of and attention to their child's needs by skilled professionals in the PICU, and fear of assuming responsibility for the child's care may make it difficult for them to absorb information and training for post-ICU care. Thus, parents may feel unprepared for their role in the next care setting after the ICU, may not understand essential management steps, and have difficulty accessing resources for guidance.
Together with the PICU team, the palliative care consultant can assist families in articulating goals of care across settings and anticipate challenges that arise during transitions. Direct involvement in care after the PICU affords the palliative care consultant opportunity to facilitate smoother transitions and reduce PICU readmissions. Pierucci et al reported that patients in the PICU who received palliative care consultation and subsequently died had significantly shorter PICU stays and were more often transferred to less intensive care settings for the last days of their lives.
Bereavement encompasses the entire experience of anticipating death, death itself, and subsequent adjustment to living. Aspects of grief and bereavement are experienced by all families of PICU patients regardless of a child's outcome. Parental grief can be intense and prolonged, especially for parents whose children die acutely. Multidisciplinary palliative care interventions, with an emphasis on psychological and spiritual care, can provide anticipatory grief and bereavement supports throughout the PICU experience and potentially reduce the risk of pathologic grief responses after ICU hospitalization and/or death. In 2012, Meert et al found that the Bereaved Parent Needs Assessment tool was a reliable and valid method to assess parent needs in the PICU. Data suggest that grief experiences are affected by individual, familial, and organizational cultures and by the methods of care delivery. Interventions to reinforce caring staff attitudes can positively affect parental bereavement. Legacy activities, from handprints to organ donation, play a vital role because they support the family's ability to maintain a connection with their child before, during, and long after death. Recent data suggest that a substantial minority of parents value structured follow-up meetings with ICU clinicians after a child's death.
PICU Opportunities: Existing Needs and Potential Solutions
Caring for patients and families in the PICU presents several challenges that improved generalist- and specialist-level palliative care services can help to address (Table 1).
Pain and Symptom Management
The importance of assessing and managing pain and other symptoms is a sine qua non of intensive care. Pediatric intensivists report a high level of confidence in their ability to prevent and treat pain, yet successful symptom management may still be difficult to attain. Wolfe et al found that distressing symptoms before death were reported more frequently by parents of children with cancer than by physicians and that parents felt the majority of children suffered "a lot" or "a great deal." Gaps in optimal pain and symptom management may result, in part, from the challenges in assessment. A child's variable and evolving development necessitates targeted pain assessments and treatment tools. In addition, if parents' assessments of a child's symptoms are systematically different than clinicians' assessments, there can be an opportunity to explore and explain the differences. Tools to reliably assess pediatric symptoms, such as fatigue, delirium, respiratory distress, or nausea, are not as available as for adult patients. Whereas involvement of palliative care experts in pain and symptom management in the PICU may often be deferred until after a transition to end-of-life care, earlier engagement can be appropriate and could provide broader support for patients, families, and PICU clinicians. For example, a palliative care consultant might collaborate with the PICU team to include parent assessments of a child's symptoms or to more broadly address a child's emotional and psychological distress related to these symptoms.
Quality of Life
The stressful PICU environment can have far reaching ramifications for patients and families. The provision of palliative care has the potential to improve quality of life, reduce pain and suffering, and in some cases extend longevity. Children may be in the ICU for weeks, making it especially important to assess and optimize quality of life during a child's hospitalization. Children with chronic conditions are at risk of the longest ICU stays as well as repeat admissions. Interdisciplinary palliative care services can help these patients maintain connections to school, friends, and activities to promote quality of life.
The quality of life of the entire family is impacted by a child's PICU hospitalization. Balluffi et al reported that over 20% of parents endorsed some aspect of posttraumatic stress disorder after PICU discharge, regardless of the child's outcome. Critical illness threatens the ability of parents to protect and provide for their children. Parents must maintain a reserve of physical and mental health in order to manage the ongoing demands of parenting, including caring for other siblings, and preparing for an uncertain and potentially frightening future. Families can better cope with the acute stressors in the PICU given adequate resources and support. Meyer et al found that families' highest priorities for improving the PICU experience were honest and complete information, ready access to staff, effective care coordination, emotional expression and support by clinicians, preservation of the parent-child relationship, and freedom to express their faith. Overall, 73% of parents reported spiritual/religious themes including prayer, access to spiritual care, and belief that the parent-child relationship endures beyond death. Support for the family unit can be optimized by the collaboration of the PICU team with palliative care providers, who can help ascertain and address family needs throughout the PICU experience.
Communication and Decision Making
Parents of PICU patients often face difficult and value-laden decisions in the context of bewildering amounts of information and an "irreducible amount of uncertainty". Families are guided in this process by a large number of clinicians, many of whom they do not know yet must entrust with the well-being of their children. Communication expertise around eliciting patient and family preferences and integrating them into serious decision making is part of the core set of skills for PICU providers, but can also be supported by palliative care specialists. The continuity that palliative care specialists may have across the different sites of care for a patient and family further strengthens the capacity of the healthcare team to communicate effectively in an ongoing process.
The PICU is a technologically focused environment with constantly emerging, highly detailed patient information. Many parents prefer that this information be integrated into the larger context of the child's overall care, so that individual treatments, status changes, and decisions are viewed within a "big picture" perspective. These conversations should account for potential differences in cultural beliefs, education, values, and preferences that may exist between clinicians and families. Decisions are often needed quickly in the ICU, giving parents little time to absorb the complicated ramifications. Conflicts between family members and medical teams regarding care decisions are common in ICUs. Studdert et al documented conflict in over 50% of cases where children spent more than 8 days in the PICU. Team-family conflicts were the most common and were more often associated with poor communication than other types of conflict. Intrateam conflict may occur in over one third of PICU cases and often centers on clinician disagreement about the continued use of aggressive interventions. When conflicts arise, a palliative care specialist can serve a valuable role as a medical interpreter for both the family and staff, reducing the burden of stress and conflict, and promoting consensus for the benefit of the child. Palliative care specialists can also help to clarify when conflicts warrant ethics consultation.
Discussions regarding preferences for life-sustaining treatments near the end-of-life are particularly challenging, and clinicians may avoid or delay these important conversations. Children's physiological resilience and variability complicate predictions about their responses to ICU treatment. New surgical techniques and other treatments make it harder to define a therapeutic endpoint. Many PICU clinicians and subspecialists are on a weekly or monthly rotation schedule, making continuity difficult for optimal care coordination and medical decision making. Frank discussions about prognosis may only occur after clinicians judge the child's future quality of life as unacceptable when they wish to recommend discontinuation of life-prolonging interventions.
Data suggest that missed opportunities exist for engaging in family conferences with parents of PICU patients who face life-altering decisions. Protocols for routine family conferences for adult ICU patients with a mortality risk greater than 25% have been shown to reduce ICU length of stay and resource utilization. Randomized controlled trials in adult ICUs suggest that improving family-clinician communication in the ICU can dramatically reduce symptoms of anxiety, depression, and posttraumatic stress disorder among family members. Palliative care consultants can support family conferences both through their presence at these conferences as well as supporting ICU clinician education regarding family conferences.
Length of Stay and Sites of Care
Regardless of the child's condition and prognosis, integration of palliative care principles from the time of diagnosis can optimize continuity of care as the patient transitions across sites of care—including PICU, general pediatric wards, hospice, or home. In 2013, Keele et al reported on a cohort of over 24,000 hospitalized children and found that palliative care consultation reduced the use of invasive interventions, decreased hospital lengths of stay (17 vs 21 d), and reduced deaths in the PICU from 80% to 60%. In academic pediatric hospitals with mature palliative care programs, most palliative care consultations are for children with potentially life-limiting illnesses who are not at the end-of-life, as evidenced by the fact that over 70% of patients may still be alive after 1 year. A palliative care consultant can assist in determining sites of care that can accommodate a patient's medical needs and maximize the family's quality of life. Parents become accustomed to constant monitoring of and attention to their child's needs by skilled professionals in the PICU, and fear of assuming responsibility for the child's care may make it difficult for them to absorb information and training for post-ICU care. Thus, parents may feel unprepared for their role in the next care setting after the ICU, may not understand essential management steps, and have difficulty accessing resources for guidance.
Together with the PICU team, the palliative care consultant can assist families in articulating goals of care across settings and anticipate challenges that arise during transitions. Direct involvement in care after the PICU affords the palliative care consultant opportunity to facilitate smoother transitions and reduce PICU readmissions. Pierucci et al reported that patients in the PICU who received palliative care consultation and subsequently died had significantly shorter PICU stays and were more often transferred to less intensive care settings for the last days of their lives.
Grief and Bereavement
Bereavement encompasses the entire experience of anticipating death, death itself, and subsequent adjustment to living. Aspects of grief and bereavement are experienced by all families of PICU patients regardless of a child's outcome. Parental grief can be intense and prolonged, especially for parents whose children die acutely. Multidisciplinary palliative care interventions, with an emphasis on psychological and spiritual care, can provide anticipatory grief and bereavement supports throughout the PICU experience and potentially reduce the risk of pathologic grief responses after ICU hospitalization and/or death. In 2012, Meert et al found that the Bereaved Parent Needs Assessment tool was a reliable and valid method to assess parent needs in the PICU. Data suggest that grief experiences are affected by individual, familial, and organizational cultures and by the methods of care delivery. Interventions to reinforce caring staff attitudes can positively affect parental bereavement. Legacy activities, from handprints to organ donation, play a vital role because they support the family's ability to maintain a connection with their child before, during, and long after death. Recent data suggest that a substantial minority of parents value structured follow-up meetings with ICU clinicians after a child's death.
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