Patient and Family

Children and families facing life-threatening conditions have many clinicians on their side. The PPC consultant generally adds support for the family and the team rather than assuming care. Although PPC teams are each unique in composition they are usually a consistent group of clinicians that follow the patient longitudinally. This continuous relationship over the course of an illness allows the PPC team to readdress sensitive topics and significant decisions, such as advance care planning, which may also evolve over time. Often the most therapeutic intervention by PPC teams is impartial listening. A family’s desire not to harm a relationship with the primary team may prevent expression of frustration, anger, and disappointment. The PPC team can clarify a family’s perspective and help the family interpret medical realities in situations ripe for misunderstanding. Good communication also helps to assess the impact of illness on all members of the family. This information is useful in the process of helping parents navigate decisions and in aiding the family as they deal with their individual emotional, spiritual, and social reaction to the events that are unfolding.

The Primary Care Team

Pediatricians are caring for an increasingly complex group of children. PPC consultation contributes to the care of these children with specialized knowledge of symptom management, familiarity with common life-limiting scenarios, teaching of primary palliative care, and support in difficult ethical and emotional situations. Life-threatening illness often brings a symptom burden that weighs heavily on children and families. Attention to symptoms should be a top priority regardless of the goals of care. PPC teams specialize in assessment and treatment of pain, nausea, delirium, insomnia, anxiety, and the myriad of other symptoms common in sick children. Treatment includes pharmacologic and nonpharmacologic methods, with an emphasis on preserving quality of life. Specialized training and experience with uncommon illnesses allows the PPC clinician to be an asset in situations not often encountered by inpatient teams. PPC consultation service is a resource for trainees and experienced clinicians to gain the PPC and pediatric hospice care (PPC-PHC) skill set recommended for all pediatricians ( Box 1 ) by the American Academy of Pediatrics (AAP). ^(p970) Every palliative care team is equipped to support the family and the primary team as they grapple with difficult ethical and moral decisions. PPC consultation does not take the place of an ethics consultation, but may offer experience and recommend formally involving the hospital ethics committee as appropriate. Physicians stand to gain expertise in symptom management, familiarity with common life-threatening scenarios, teaching, and support in ethically complex situations with a PPC consultation.

Medical assistants, respiratory therapists, nurses, and associated staff work at the bedside contributing to the often complex care that hospitalized children receive. They bear witness to the suffering that can occur despite the best efforts of the team. The AAP has specifically tasked PPC with support of hospital ancillary staff. ^(p970) Involvement of a PPC team can use the knowledge of these team members, educate concerning end-of-life issues, and decrease the distress that is often a factor in burn out. In reporting their subjective and objective experience with the patient, staff distress regarding suffering can be channeled to help influence care in a productive way. PPC teams commonly include a nurse or nurse practitioner who may be well-positioned to connect with nursing staff or other clinicians at the bedside. Ethical and moral dilemmas faced by patients and their families lead to staff distress. By establishing contact with members of the healthcare team, the PPC service can either address these issues on their own or suggest a way to help decrease the distress. Although the involvement of the PPC team does not automatically resolve any of these challenges, they have the potential to support, educate, and involve staff in such a way that staff satisfaction and retention are positively impacted.

Hospitals

Experience suggests that hospitals supporting PPC increase positive inpatient interactions, minimize negative experiences of especially vulnerable families, and keep up with industry standards. Emphasis on patient and family concerns, values, and understanding by PPC teams optimizes satisfaction. Word of mouth is the most powerful tool that a hospital can have on its side. One story of a positive patient experience, or conversely a negative experience, lives on in the discourse between friends and can be immortalized on public and private forums. Heightened emotions at the end of life put families and clinicians at a significant risk for miscommunication, a common factor in legal action taken against hospitals and clinicians. The care and compassion shown by the healthcare team including PPC can create a bond of trust and potentially curtail litigious behavior. Focus on goals, symptom management, and communication by PPC can help a vulnerable family feel heard and valued. Although PPC services rarely generate the revenue to cover all involved expenses, the benefit to families and cost savings have led to 69% of pediatric hospitals recently surveyed having some form of a palliative care service. ^(p3) The AAP recommends that “all large health care organizations serving children with life threatening conditions have dedicated interdisciplinary PPC-PHC teams.” ^(p968) In the era of measuring satisfaction and optimization of care, it behooves any hospital seeking to keep up with the standard of care to invest in their PPC service. This is a situation where doing the right thing for patients and families pays off for all involved parties.

Stakeholders

Palliative care is not limited to an organ or body system but rather is whole-person centered. Thus, palliative medicine consultations are perhaps more complex than other consultations, with multiple layers of stakeholders. Thorough consultation requires involving and meeting the needs of all appropriate stakeholders ( Box 2 ). The elements of a PPC consultation are listed in Box 3 and further detailed next.

The Referring Physician as Stakeholder

Determining the referring clinician’s specific reasons for consultation at the outset allows the palliative consultation to best serve the clinician. Common reasons to obtain a palliative care consultation for a child include assistance with

• •
  

  Establishing goals of care

  
  
• •
  

  Developing a care plan that has the best likelihood of achieving the goals of care

  
  
• •
  

  Assistance with medical decision making, including defining resuscitation wishes

  
  
• •
  

  Pain and symptom management

  
  
• •
  

  Prognostication

  
  
• •
  

  Assistance with communication with the healthcare team

  
  
• •
  

  Assistance with communication among family members

  
  
• •
  

  Assessment of spiritual or psychosocial distress

  
  
• •
  

  Discharge or end-of-life planning

Additionally, palliative care consultation may be requested when ethical, spiritual, or emotional issues arise among staff.

Child, Parents, and Family as Stakeholders

The patient and parents may differ from the referring physician in their goals and expectations of the consult. PPC can help elicit a child’s hopes, fears, understanding of their condition, and goals of care. In addition to choosing the best care for their ill child, parents often are concerned about the impact of a child’s illness on siblings. The PPC team can offer advice on how and what to tell siblings, how to handle behavior issues, or just empathetically listen to parents’ grief and concern about not being as available for siblings as they feel they should. Occasionally, extended family members may disagree with goals of care. Grandparents may suffer grief not only for their ill grandchild but also for their child, the parent. Palliative care teams are highly skilled at delicately drawing out these tender issues and helping a family problem-solve.

The Community of Medical Clinicians as Stakeholders

A medically complex child generally has a primary care physician and multiple specialists all contributing to their care plan. These care clinicians represent additional stakeholders, which a palliative care plan must include. A primary care physician manages care outside the hospital, and has valuable insights into a patient’s condition and family dynamics acquired over the course of caring for the child. Any care plan developed should include their input and they should be fully aware of goals of care and the treatment plan developed to achieve those goals. All specialists involved in the care of a child with complex illness should have similar input and awareness. In academic settings, medical students and residents add the dimension of learners to the list of stakeholders. Palliative care consultation is an opportunity to provide education about generalist-level palliative care, which research has been demonstrated to be lacking in medical training.

In the inpatient setting, the bedside nurse has intimate knowledge of the patient’s care needs, family dynamics, and disease course that may differ from a physician’s. Child life therapists, music therapists, occupational and physical therapists, speech therapists, and others all bring unique perspectives and knowledge to bear on a palliative assessment and care plan. Education specialists can help the palliative care team understand what supports may be available through the child’s local school system, such as special education and physical, occupational, and speech therapies. Interpretation services provide not only language translation, but also cultural translation. Social workers are trained to gauge coping skills and families’ strengths and challenges and serve as case managers in many institutions. They are uniquely trained to identify psychosocial needs and match them to available resources. Chaplains may have insight into a family’s spiritual belief system that can be very helpful in developing advance care plans. Each family has a belief system about the meaning of health and illness, and may need help making sense of their experience from a spiritual perspective. In some PPC teams many of these staff are part of the formal team; in others, PPC actively seeks input from these valuable colleagues.

Palliative Illness and Symptom Assessment

A palliative care consultation involves a thorough and detailed history taking of the current illness, past medical history, and review of symptoms along with a comprehensive physical examination and review of medical records. A palliative care clinician focuses in depth on any symptoms that may be underrecognized or undertreated. Palliative care clinicians have expertise at diagnosing and treating persistent pain and other symptoms that do not respond to routine interventions. Sources of pain are investigated and classified by location and type (nociceptive vs neuropathic vs psychosomatic, acute vs chronic vs acute on chronic, mixed). The palliative consultation inquires about symptoms, such as nausea and vomiting, disturbed sleep, irritability, feeding intolerance, anxiety, delirium, dyspnea, and depression. PPC considers how emotional and spiritual distress interplay with physical distress, and may recommend integrative modalities to help reduce suffering, such as music therapy, play therapy, prayer, acupuncture or acupressure, massage, aromatherapy, and others as available.

The Family as the Unit of Care

Because palliative care focuses on the child and family individually and also as a unit, the interdisciplinary assessment includes the family. Members of the interdisciplinary palliative care team assess for coping, support systems, spiritual needs, and beliefs, and identify crises, such as family disruption, financial stress, transportation or housing issues, parental depression, parents’ and patients’ understanding of the medical condition, proposed treatments’ risks and benefits, and attendant hopes and fears. Many siblings of ill children have unique needs of their own that the PPC team can help identify and support. Goals of care are discussed to enable creation of an advance care plan, which may be unlimited medical treatment, limited interventions, or cessation of medical interventions except those aimed at comfort.

Prognosis and Medical Decision Making

The palliative care team may aid medical decision making and advance care planning by helping the medical team to establish and communicate prognosis. Experienced palliative medicine specialists can offer prediction of illness trajectory when, as is frequently the case, evidence-based prognostic information is lacking. Advance care planning includes discussing and documenting advance directive plans, such as Do Not Attempt Resuscitation orders and Physician Orders for Life Sustaining Treatment, and also other treatment and end-of-life preferences, such as preferred site of care, goals hoped for before death, and preferred location of death.

Recommendations, Advance Care Planning, and Continuum of Care

Because PPC considers the family holistically, interventions may be recommended for the child and family. Medical management suggestions for pain and other distressing symptoms may be given, including the use of opioids and sedatives; integrative medicine strategies, such as aromatherapy, acupuncture, and hypnosis; and other modalities as available. When patient or sibling distress is identified, child life therapy may be recommended. Music therapy can often be helpful in achieving specific goals, such as reducing procedural pain, developmental stimulation, relaxation, and grief therapy. PPC teams are uniquely positioned to know what resources are available and how to pull them in to help maximize daily quality of life and ease suffering for children with life-threatening illness and their families.

A family meeting between the parents, the child if appropriate and willing, the palliative care team, and other caregivers as indicated can be very valuable. Guided discussion can allow the patient’s story to unfold, along with their hopes and fears. Asking about the family’s and patient’s understanding of the illness or condition can lead to a conversation about prognosis, goals of care, and advance directives. This conversation can also reveal a family’s coping strengths, and shine light on areas where they may be struggling. The goal of these conversations is to help the care team give the right care at the right time.

Palliative care teams can discuss hospice services with patients and families and assist with making a hospice referral at the appropriate time. Although PPC programs vary in scope, increasingly PPC teams provide outpatient follow-up and home visits, and most are able to provide telephone support. ^(p3) When a child is discharged home, the PPC team can continue providing expert advice to the primary care pediatrician and hospice agencies as needed. Should the patient be readmitted for further treatment, acute exacerbations of illness, or symptom management the PPC team can provide consistency, a comforting presence, and unique insights into previously helpful medical management, successful coping strategies, and the family’s communication preferences. Because of the longitudinal relationship the palliative care team often has with a patient and family, they have a deep understanding of the medical course, psychosocial strengths and vulnerabilities, and history of decision-making and serve as a repository of this information.