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Integrating Palliative Care Into the ICU: From Core Competency to Consultative Expertise

Morrison, Wynne E., MD, MBE, FCCM1,,2; Gauvin, France, MD, MSc3; Johnson, Emily, MSN4; Hwang, Jennifer, MD, MHS1,,5

Pediatric Critical Care Medicine: August 2018 - Volume 19 - Issue 8S - p S86–S91
doi: 10.1097/PCC.0000000000001465
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Objectives: To propose a model describing levels of integration of palliative care into the care of ICU patients.

Data Sources: Literature review and author opinion.

Conclusions: All critical care team members should demonstrate and foster their core competencies in caring for patients with complex illness and uncertain prognosis, including at the end of life. We describe these core competencies of the ICU team member as “primary” palliative care skills. Some ICU team members will have special expertise in end-of-life care or symptom management and decision-making support and will serve as local experts within the ICU team as a resource to other team members. We call this skillset “secondary” palliative care. Some patients will benefit from the full range of expertise provided by a separate consulting team, with additional training, focused on caring for patients with palliative care needs across the full spectrum of patient locations within a health system. We term the skillset provided by such outside consultants “tertiary” palliative care. Solutions for meeting patients’ palliative care needs will be unique within each system and individual institution, depending on available resources, history, and structures in place. Providers from multiple professions will usually contribute to meeting patient needs.

1Pediatric Palliative Care, The Children’s Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.

2Anesthesiology and Critical Care, The Children’s Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.

3Department of Pediatrics, Pediatric Palliative Care, University Hospital Center Sainte-Justine, University of Montreal, Montreal, QC, Canada.

4Pediatric Palliative Care, Bloomberg Children’s Center, Johns Hopkins Hospital, Baltimore, MD.

5Department of Pediatrics, The Children’s Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.

Dr. Morrison is supported by the Justin Michael Ingerman Endowed Chair in Palliative Care. She has also received support for editorial board participation with the American Academy of Pediatrics and presentations at academic institutions. Dr. Hwang is supported by the Millbank Foundation and the Y.C. Ho/Helen and Michael Chiang Foundation for her work in palliative care. The remaining authors have disclosed that they do not have any potential conflicts of interest.

For information regarding this article, E-mail: morrisonw@email.chop.edu

By the very nature of their roles as providers for the most complex and critically ill children in the hospital, pediatric critical care clinicians will care for many children at the end of their lives. More than 6 million children under age 14 die yearly worldwide (1), and although the proportion of children who die in an ICU varies widely by country, a large number of these deaths will occur in the hospital (2–7). ICU teams will be involved in supporting patient and family decision-making regarding potentially life-sustaining technologies, managing pain and symptoms at or near the time of death, coordinating the withdrawal of technological support, assuring that ethically appropriate choices are offered to families, determining the appropriate disposition for patients nearing the end of life, and supporting families after a patient’s death.

Pediatric palliative care is a rapidly growing subspecialty within pediatrics (8, 9). Palliative care has been defined as “patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering … throughout the continuum of illness and involves addressing patient and family physical, intellectual, emotional, social, and spiritual needs as well as facilitating autonomy, access to information and medical decision making.” (10) In healthcare systems where pediatric palliative care teams exist, these specialists are often involved in the care of patients for months if not years before the time of a child’s death (11). This difference from typical practice in adult medicine occurs because of the large variety of congenital and acquired diagnoses that lead to life-threatening illness in pediatrics, challenges with prognostication in pediatrics, and because it is common for pediatric palliative care specialists to assist in symptom management and decision-making support for many patients and families who are still pursuing potentially curative or life-prolonging treatments (6). Palliative care is distinct from hospice. Hospice is a system of care focused on providing exclusively comfort directed therapies at home for patients with a prognosis of less than 6 months. Although palliative care teams often help families decide if hospice support is appropriate for their child, only a subset of patients followed by palliative care use hospice services.

While mortality in many PICUs is low (< 3% of patients) and decreasing over time (12), complex chronic illness and patient morbidity may be increasing as many children survive illnesses that would have ended their lives in years past (13). Although many of these patients with ongoing morbidity and complex care have palliative care needs, variability in systems of care and workforce challenges (8, 14–18) mean that specialist teams are not available to all patients who might benefit. So, although the American Academy of Pediatrics recommends that a palliative care needs assessment begin at the time of diagnosis of a potentially life-limiting illness (19), this task cannot (and should not) always be performed by an outside consultant. For many patients in the PICU, the ICU team will need to be prepared to assess and manage palliative care needs.

In this article, we will describe various methods of integrating palliative care practice into pediatric critical care, ranging from the primary skills that are core competencies for any ICU team, to more focused skills developed with additional expertise or education within the ICU team itself, to the expertise delivered by a specialty consulting team. Flexibility within these models will often be necessary based on structural factors, individual patient and family needs, and provider comfort level (20, 21).

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MODELS FOR DELIVERING PALLIATIVE CARE WITHIN THE ICU

Primary Palliative Care

The concept of “primary” palliative care refers to the core competencies in palliative care that should be a component of the armamentarium of any generalist or subspecialist in a field other than palliative care. Just as ICU specialists need to know a lot about cardiology, neurology, pulmonology, and many other specialty areas, they also need to be comfortable with symptom management and decision-making for patients with complex needs and patients at the end of life. Many of the areas of expected knowledge and expertise in critical care outlined by the American Board of Pediatrics and the Royal College of Physicians and Surgeons of Canada (Tables 1 and 2) would also be considered core skills in palliative care. Some components of end-of-life care related to declaration of death by neurologic criteria or management of the organ donor are managed almost exclusively by critical care specialists.

TABLE 1

TABLE 1

TABLE 2

TABLE 2

These primary palliative care skills will be learned in general or subspecialty training, or through practice in the subspecialty. All ICU clinicians should be prepared to have conversations about goals of care or the withdrawal of technology, and will likely participate frequently in such discussions. They should also be prepared to manage pain, dyspnea, or delirium with a recognition of how that management changes at the end of life. ICU clinicians should also be knowledgeable about many of the administrative and regulatory issues that impact end-of-life care, including pronouncing death, discussing autopsies, and completing legal paperwork. The ICU interprofessional team is often highly experienced in addressing the psychosocial and spiritual support of families at the end of life and often provides initial support for grief and bereavement as well.

The presence of a pediatric palliative care team in an institution in no way detracts from the importance of and need for these primary skills on the part of the frontline team. The ICU clinicians will need to provide this care to patients on a regular basis and determine when there is added value (for the patients, families, or the team itself) in bringing in outside consultants. In many institutions, consulting teams may not be available to the ICU, in which case, the ICU team’s primary skills will be the only avenue for meeting the palliative care needs of the patient.

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Secondary Palliative Care

Within any ICU team, there will be providers with special expertise in a certain area within critical care, such as a physician whose research focuses on resuscitation or sepsis. This person might be an important resource for his or her colleagues when clinical questions arise related to the research interest. Or, there might be a nurse who is a resource to others regarding renal replacement therapy, skin care, or ethical questions, as other examples. A team member could similarly serve as a resource with special expertise in palliative care.

We call the skill set provided by such a local expert “ secondary” palliative care. The person who has a secondary palliative care skillset has enhanced knowledge or experience in end-of-life care, communication, or symptom management. He or she may have pursued additional education or training in these areas, have overlapping research interests, or have other relevant areas of clinical expertise such as clinical ethics consultation or pain management.

In addition to adding clinical expertise, a team member with secondary palliative care skills will be influential in helping other ICU team members decide when subspecialty consultation is helpful or in sharing knowledge about available resources for patients and families. Educating other team members in primary palliative care skills is likely a significant part of this role. Such responsibilities could involve education about processes of care (e.g., ventilator withdrawal), communication skills training, sharing knowledge of legal, ethical and regulatory requirements, or advanced symptom management. Education in these areas can also help training programs in the team member’s primary area meet Accreditation Council of Graduate Medical Education requirements for competencies in subspecialties. The team member with the secondary palliative care skillset is, however, typically still a full-time member of the ICU team. There are often benefits to having this added expertise available from a trusted colleague who is well-known to the team and readily available. Other words we have heard used for a secondary palliative care provider include “local expert,” “regional expert,” “ambassador,” “resource,” “champion,” “focus,” or even “enthusiast.”

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Tertiary Palliative Care

Tertiary or consultative palliative care refers to the skillset provided by a subspecialized team who usually consults on patients throughout the hospital. These providers spend a significant portion, or sometimes all, of their time providing symptom management, psychosocial support, and help with determining goals of care for patients with complex illness who may or may not be near the end of life. Many such consultants will follow patients across the continuum of care, from the ICU to the ward or to home. They are usually very familiar with what home supports, such as hospice, might be available to patients and when it is appropriate, from a clinical and regulatory standpoint, to use such services. Clinicians on the consulting team increasingly have completed subspecialty training leading to board eligibility in the specialty or have pursued advanced certification in the field.

Although many ICU clinicians are well-versed in primary or secondary palliative care skills, there are many situations where there can still be a benefit to bringing in a consultative team (Table 3). Again, when it is appropriate to do so may be highly variable depending on the resources available both within and outside of the ICU at any given institution.

TABLE 3

TABLE 3

It is important that a consulting team bring these additional resources to the frontline team while at the same time avoiding undermining their primary palliative care skills. Even if a consulting team is often involved when goals of care are discussed in the ICU, the ICU clinician needs to be skilled in these conversations. The ICU social worker or case manager needs to be familiar with the community resources available for patients at the end of life, even if questions are frequently directed to the palliative care team. In our experience, the presence of a robust palliative care team often adds to the skills and knowledge base of the ICU team members rather than detracting from them.

In some centers, the clinicians may be dual trained and also practice palliative care. In this setting, the individual may sometimes provide secondary palliative care (a local expert within an ICU practice) and sometimes provide tertiary palliative care (a consultant who makes recommendations in the care of the ICU patient). This person will often become the de facto local expert. In the “integrative” versus “consultative” model of palliative care within an ICU (22), tertiary palliative care would fall under a consultative model, and primary and secondary palliative care would fall under an integrative model (Table 4). In reality, there is often a large degree of overlap between the consultative and integrative models.

TABLE 4

TABLE 4

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ELEMENTS TO CONSIDER

Timing of Consultation of Subspecialty Teams and Screening Criteria

Just as the level of involvement of a subspecialty team must be individualized based on system resources and patient needs, the appropriate timing for palliative care consultation may vary widely. For some patients and families, close attention to palliative care needs by the primary team may feel more seamless than meeting a new team, whereas for others having a consulting team whose main focus is symptom management and decision support is very helpful.

There has been a push within palliative care for earlier involvement of specialty teams. Earlier involvement allows relationship building over time and can lead to consulting teams being more familiar with a family’s values and priorities if a patient deteriorates at a later date. Earlier involvement runs a risk, however, of diluting a consulting team’s time and effort, so that it is less focused on the patients most likely to benefit from specialist involvement. Some centers have established screening criteria (“triggers”) for consultation (23, 24). Reported screening criteria vary widely and range from specific diagnoses (e.g., end-stage lung disease undergoing transplant evaluation, “terminal” dementia) to healthcare utilization or severity of illness indicators (e.g., > 3 ICU admissions in 1 yr, > 10 d on extracorporeal support, comatose for > 1 wk). Some reported “screening” criteria essentially refer to using team judgment as to when consultation would be helpful (e.g., “need for clarification about goals of care” or “team feels patient or family would benefit”). In some pre-post intervention studies with adult patients, implementation of screening criteria led to earlier establishment of goals of care and reduced ICU length of stay without any increase in eventual mortality (25–28). It is important to individualize any screening process based on the needs and relationships within an institution, so that a consulting team is helpful to the primary team rather than being intrusive. A secondary or local expert may improve awareness of when a subspecialist consultation would be most helpful.

When considering the timing of consultation, it is also important to remember that a decision to remove or limit technological support does not mean that death is imminent in all cases. Some patients will be able to return home after a decision is made not to perform cardiopulmonary resuscitation or a tracheotomy, and some patients may survive longer than expected following ventilator withdrawal. For some of these patients, it may be clear that they are nearing the end of life, but for others, they may live for some time, and families may consider rehospitalization to manage symptoms or attempt to support a patient through a reversible illness. A palliative care team can often offer some continuity in support from the ICU to the ward, and to the home setting, in order to help make sure that the location of care is most consistent with the patient and family goals. So, although a specialty consultation should not be necessary for every patient for whom invasive procedures or technological support are limited or withdrawn, consultant involvement may be particularly helpful if the trajectory is uncertain or a transition home is a possibility. Meeting these families before technology is removed may help the palliative care team form a supportive relationship.

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Interprofessional Expertise and Solutions

The practice of both critical care and palliative care requires collaboration between team members from multiple professions and with a variety of experience, training, and expertise. A palliative care–focused team member within the ICU could be a nurse, social worker, physician, chaplain, or psychologist. Palliative care certification programs exist for advanced practice nurses, but experiences that improve team member knowledge and skills without leading to a separate certification may also be very beneficial (7, 29–32). Additional education as well as dedicated time may help such a team member focus on the unmet palliative care needs of a large number of patients. Some centers have also increased palliative care presence in the ICU by “embedding” interdisciplinary team members from a palliative care team within ICU rounds (33). These experts may offer perspective to the ICU team on many patients while reserving a full team consultation for a minority of them. Such models may increase utilization of the specialty team but require the availability of staff and time for the integration to happen. In some countries, resource limitations may make improving primary palliative care skills the only or best option available (34–37) and could therefore be the first focus for advocacy efforts and government programs.

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CONCLUSION AND SUGGESTED DIRECTIONS

Although pediatric palliative care teams are available at more and more pediatric centers, workforce and time limitations may mean that this resource is not available to all patients and families. It is therefore vitally important that all ICU team members maintain primary palliative care skills. In addition, there may be added benefit from nurturing a secondary palliative skillset in some providers within the ICU. Needs will vary depending on the patient, family, skill set of all involved, institution, and community resources. As is always the case when caring for patients and families in clinically and emotionally challenging situations, flexibility will be required. The addition of short-term educational and training experiences to improve the primary and secondary palliative care skills of ICU providers will help those clinicians who want to enhance their practice within the ICU. Such experiences may also be of great benefit to those practicing in systems without access to a consultative team.

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ACKNOWLEDGMENTS

We would like to acknowledge Drs. Tammy Kang and Chris Feudtner for their insight into conceptual models of palliative care, and wish to thank Ms. Kaitlyn Snyder for assistance with a literature review.

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Keywords:

clinical competence; end-of-life care; interprofessional; palliative care; pediatrics

©2018The Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies