PALLIATIVE CARE PRINCIPLES

These principles can and should be integrated into every intensive care provider’s practice.

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  Prevent and minimize suffering:

  
  
  
  
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    Suffering includes physical pain and other uncomfortable symptoms, as well as emotional distress and spiritual isolation.

    
    
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    Suffering is experienced by the patient but also by family members or other significant relationships.

    
    
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    Every critically ill patient and their loved ones are at risk for substantial suffering.

    
    
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    Suffering should be addressed, regardless of the clinical situation, the treatment plan, or whether the choices of the family align with the preferences of the care team.

  
  
  
  
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  Enhance and support quality of life:

  
  
  
  
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    What constitutes an acceptable “quality of life” is subjective and quite variable among individuals and families.

    
    
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    Supporting quality of life means making each day as good as it can be and, in particular, supporting important relationships for the patient and their family.

    
    
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    In the PICU, this might look like facilitating a sibling visit, encouraging parents to hold their child or participate in bathing, or simply taking the time to look at family pictures and listen to cherished stories.

  
  
  
  
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  Understand and advocate for patient/family goals of care:

  
  
  
  
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    The goals of care should always be discussed openly so that a shared understanding is reached between the patient, family, and medical team.

    
    
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    Goals of care are constrained by what is possible; thus, the medical team should be clear with the family about what can or cannot be reasonably hoped for.

    
    
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    However, goals of care are primarily informed by what is most important to patients and families—their values and priorities.

    
    
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    Patients and families may hold many different kinds of hope, often simultaneously. For many, the hope of complete healing never goes completely away, yet they may also be able to focus on more achievable goals like relieving pain, being with loved ones, or celebrating a milestone like a birthday.

  
  
  
  
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  Facilitate medical decision making:

  
  
  
  
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    In the ideal form of shared decision making, the patient/family shares information about the patient’s values, goals, and preferences relevant to the decision at hand. Clinicians share information about the relevant treatment options and their risks and benefits. Clinicians and patients/families then work together to determine which option is most appropriate for the patient.

    
    
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    Facilitating authentic decision making means ensuring that patients/families have all the information they need about the various treatment options and providing whatever kind of support they need to consider these options in light of their values, hopes, and needs.

  
  

PALLIATIVE CARE SUPPORT

Sometimes additional specialty-level support is needed.

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  Inpatient palliative care consultation: A growing number of hospitals offer an inpatient consult service for palliative care. Most pediatric palliative care teams are multidisciplinary and may include physicians, advanced practice nurses, chaplains, social workers, and nurse case managers, as well as supportive therapies such as child life, music therapy, and art therapy. When a child has a life-threatening or life-limiting (likely to cause death before adulthood) diagnosis, palliative care consultation is appropriate for any of the following reasons:

  
  
  
  
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    Symptom management: The patient has a high degree of pain or other uncomfortable symptoms, including nausea, spasticity, dyspnea, anxiety/depression, and fatigue.

    
    
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    Assessing goals of care: Specialty-level expertise (and/or significant time) is needed to evaluate the patient’s/family’s goals of care.

    
    
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    Extra support: The patient and/or family exhibit signs of significant emotional or spiritual distress and would benefit from an extra layer of support.

    
    
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    Long-term management: The patient is likely to survive the current PICU stay but has a life-limiting diagnosis and would benefit from longitudinal palliative care support.

  
  
  
  
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  In-home palliative care (and hospice): Specialized teams of nurses, social workers, chaplains, child life specialists, and other therapists provide in-home palliative care or hospice support for children with life-limiting illness.

  
  
  
  
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    In palliative care, the child continues to receive at least some disease-directed therapies and may not have any limitations in place regarding resuscitation. Disease-directed care and equipment continue to be billed through their insurance company while the palliative care team provides weekly to monthly (depending on the needs of the patient/family) visits to help manage symptoms and enhance quality of life.

    
    
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    In hospice, the patient/family has usually made a decision not to return to the hospital and to focus on staying at home and maintaining comfort until death. Typically (though not always—and not required) the patient has a do not attempt resuscitation (DNAR) order. The palliative care team visits as often as necessary in order to deal with escalating symptoms and to help support the family through the process of their child’s decline and eventual death. All medication and equipment come through the hospice company and can usually be delivered to the family.