Structure and Processes of Care

End of Life Period and Death Trajectories
The End of Life Period (EOLP) has previously been defined as a specific interval of time beginning with the decision to withdraw or withhold further aggressive treatment, and ending after the completion of postmortem care[82]. The EOLP is one of fundamental uncertainty, and may follow different courses. Some different trajectories of death and timing of bereavement care are shown below.

  1. Sudden Death: In this scenario only, bereavement care begins at the time of death as no anticipatory period exists.
  2. Steady Decline: An infant in previously good health who develops a chronic and life-limiting condition. In this situation, as in those that follow, bereavement care should be initiated at the time of physical decline and ongoing curative interventions. 
  3. Fluctuating Decline: A variation on Pattern B, with some episodes of relative recovery interspersed with chronic decline.
  4. Fragile: An overall fragile child with severe impairments of physiologic function who may experience life-threatening illness from a seemingly innocuous event. In this case, it can be difficult to determine when this child is actually dying, as the child’s baseline function is low.

Patterns B-D carry a scale for quality of life that extends below zero (zero being the quality of life associated with being dead). This is reflective of the understanding that some quality states of life may be worse than death[83].

Need for Integrative Palliative Care
To manage the uncertainty of death, different conceptual models of EOL care have been developed. Increasingly, there has been a movement towards “upstream palliative medicine” where palliative care is delivered at an earlier stage of the illness trajectory, as illustrated in the following diagram.

  1. Series: a traditional model originally established in the 17th century and not altered much until 1997. Care is represented in a sequential fashion against time. There is a specific division between curing, palliation, death and bereavement.
  2. Parallel: curative measures gradually decline, and palliative measures gradually increase, prior to death and bereavement.
  3. Integrative: a model presented in 2005, where palliative measures are introduced at the same time as curative measures as soon as a critical or chronic diagnosis is made. Since a loss may be experienced even in the absence of death, bereavement is represented as a continual process from the outset which increases after the death itself. This model also helps to decrease a sense of abandonment at the end of life through a mindset of “being with” the patient at the same time as providing curative care or “doing to”[84].

There is a difference between prolonging dying and prolonging a life in the face of incurable illness. Thus, a patient may, and often should, receive palliative care while still receiving curative interventions. Unfortunately, the majority of dying children do not currently receive any palliative care services.[85, 86]

Pillars of Palliative Care
When properly provided, integrative palliative and bereavement care includes aspects of problem-solving, decision-making, interventions, and logistics of the provision of care[83].

Palliative care begins when the problem or illness is identified. If possible, multiple family meetings are held in order to discuss all available options and treatments for the patient, as well as all goals and hopes parents and other family members have for the baby. The physician and interdisciplinary care team guides the family through the decision-making process. Excellent communication skills are vital and discussed separately under the domain of Social Aspects of Care.

Chronic illness, the EOL period, and the process of caring for the dying patient and affected family is physically, mentally, and emotionally challenging. Physical, psychological, social and spiritual interventions should therefore be planned for the patient, the patient’s family, and the staff caring for them. These interventions are further discussed at length in Physical Aspects of Care, Psychological and Psychiatric Aspects of Care, Spiritual, Religious and Existential Aspects of Care, Cultural Aspects of Care, and Care of the Imminently Dying Patient.

The delivery of these interventions may be provided in the hospital or at home, with the assistance of hospice and home health care. The logistics and coordination of these services, as well as payment, are discussed in this section.

Palliative Care in the Hospital Setting
Palliative care provided in the tertiary hospital setting is best coordinated through the use of an interdisciplinary palliative care team which includes a physician, nurse and/or nurse practitioner, social worker, spiritual advisor and a child life therapist[4, 24, 87], and may include a family advocate, clinical pharmacist, dietician, bioethicist, and psychiatrist or psychologist. Because palliative care patients receive interventions from such diverse disciplines, a designated “point person” may be helpful to coordinate referrals. It is advisable for the palliative care team to meet and review ongoing care plans for qualifying patients on a regular basis, as well as play an educational role and an example of effective teamwork.

These same principles may be applied in the community setting, although the resources available may be different. In this case, use of resources such as this toolkit may be helpful to the physician and care team. To increase accessibility to specialist interdisciplinary care in the community setting, partnership and communication with obstetricians and neonatologists at the nearest tertiary care center may also be feasible. A 24-hour hotline for palliative care support for physicians in associated community hospitals may improve end of life care for community patients and their families.

Hospice and Home Health Care
Death in the more familiar and comfortable home environment with hospice and home health support may be preferable to the hospital setting. Hospice care refers to a package of palliative care services (including durable medical equipment, diagnostic and therapeutic interventions), generally provided at a limited per diem rate by a multidisciplinary group of physicians, nurses, and other personnel, such as chaplains, health aides, and bereavement counselors. Hospice care provides a support system for families with children discharged from the hospital with an irreversible or terminal condition. There are no time limits for referral to pediatric hospice care, and this care may be provided in a facility or at home. There are four levels of hospice care: routine home care, continuous home care, general inpatient care, and respite care. Continuous home care is intended for crisis management of acute symptoms to maintain the patient at home, and involves intensive home nursing for a minimum of 8 hours a day. General inpatient care is intended for control of acute pain, management of the active process of dying, complicated psychosocial issues, or other symptoms that cannot be managed in the patient’s home. It is usually short-term and provided by a contracted hospice, hospital, or skilled nursing facility. Respite care is for patients whose caregivers need relief for a short period of time, is provided by a hospice, hospital, skilled nursing facility, or intermediate facility, and is usually reimbursed for 5 days each benefit period[88]. Pediatric hospice facilities vary by region, and may still be excellent resources even if they rarely care for children[89]. An assigned social worker usually has resources to help with placement.

Every infant in hospice care should be assigned a community pediatrician for ongoing medical care. Although it is not a prerequisite for hospice enrollment, an outpatient Do Not Attempt Resuscitation (DNAR) form should be completed prior to discharge if the family agrees. All prescription medications should also be filled prior to discharge. The family should be instructed to call the hospice rather than emergency personnel in the event of a home death.

Perinatal Palliative Care
Three considerations implicate palliative care treatment decisions: the certainty of the diagnosis, the certainty of the prognosis, and the meaning of the prognosis to the family[12]. When the diagnosis and/or prognosis is certain, some parents confronted with a lethal fetal diagnosis may decide to continue their pregnancy to its natural conclusion. These families are best served through a multidisciplinary perinatal hospice palliative care team. The goals of perinatal hospice include shared decision-making with the family regarding pregnancy management, after-birth care, and preparation for the loss that is consistent with the family’s wishes and values[21, 90]. The mother should be encouraged to make a plan for the birth and her baby’s care after delivery[91]. In many cases, infants with lethal diagnoses and a comprehensive birth plan may be delivered in the more familiar surroundings of the community hospital setting if the physicians caring for the family are comfortable with palliative care options. A sample birth plan can be accessed in the “forms” section of this website. Consideration of hospice care is appropriate if the baby does not expire soon after birth. If the diagnosis or prognosis is uncertain, an assessment of a response to a trial of therapy after birth may be an appropriate option[12].

Payment for palliative care services remains problematic. Although it is well-documented that infants who receive palliative care consultations have fewer medical interventions and lower health care costs[17], pediatric palliative care has long been encumbered by the federal Medicare model designed for adult patients with cancer used to construct most state hospice Medicaid benefits[92]. This model restricts hospice admissions to patients with a life expectancy of 6 months or less, while the average pediatric patient in hospice care lives greater than one year[93-97]. The current structure of a third-party reimbursement arrangement imposes significant financial constraints[98]. In addition, children living with a terminal or life-threatening condition may be receiving therapies which improve their quality of life, but these may not be adequately reimbursed through Medicaid hospice benefits. Families qualifying for Medicaid hospice benefits may lose other state-provided benefits, including skilled home nursing care and dietary supplements. Private insurance companies fare no better, as many of their benefits mimic those of Medicaid, and few have specific provisions for children[24]. Palliative care services are often financed by grants, philanthropic donations, and creative hospital support[99]. The March, 2010 passage of the Patient Protection and Affordable Health Care Act included Provision 2302, obligated children covered by public health insurance to be able to receive concurrent hospice services[100, 101]. However, this legislation has not yet been effectively activated in most states, and the provision extends only to children who continue to meet the 6-month prognosis criterion for hospice eligibility.