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.
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.”
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.
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.
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.
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.
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.
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:©2018The Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies
clinical competence; end-of-life care; interprofessional; palliative care; pediatrics