Introducing Palliative Care

Hope is the thing with feathers that perches on the soul and sings the tune, without the words, and never stops at all. —Emily Dickinson

The introduction of palliative care into the plan of care for a pediatric patient can be challenging. It is important to understand that palliative care is not synonymous with end-of-life care. The World Health Organization (WHO) defines palliative care as:

• The active total care of the child's body, mind and spirit, and also involves giving support to the family,

• Beginning when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease,

• Requiring healthcare providers to evaluate and alleviate a child's physical, psychological, and social distress,

• Incorporating a broad interdisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited,

• Being provided in tertiary care facilities, in community health and hospice centers, and in children's homes.

End-of-life care refers to the care delivered when death is almost certain and close in time. Care at end of life can be incorporated into palliative care as the approaches to cure become less of a focus and symptom control becomes the goal. At this stage, the primary team may change its approach, leaving the life-limiting diagnosis aside, and focus on symptom control, quality time with loved ones and assurances of dignity and respect for the child and family.

Care at end of life can be synonymous with hospice care, but in the United States hospice is a Medicare benefit and is defined as a special way of caring for people who are terminally ill. As in palliative care and end-of-life care, hospice care involves a team-oriented approach that addresses the medical, physical, social, emotional, and spiritual needs of the patient and support to the patient's family or caregiver. Hospice care, however, is usually given by a public agency or private company approved by Medicare and is different from the original primary care team. The goal of hospice is to care for a terminally ill patient and family, not to treat the illness ( http://www.medicare.gov/publications/pubs/pdf/hosplg.pdf ). Several basic differences between palliative care and hospice are listed in Table 20-1 .

Incorporating palliative care at diagnosis can be challenging, even though approaches to control symptoms of discomfort and care for the psychosocial needs of the family are usually incorporated into excellent pediatric care specialties. Tertiary care centers, complete with specialists in most conditions, provide state-of-the-art treatment aimed at the cure of most life-threatening conditions. The hope for success is expected by the healthcare professionals as well as the families, and usually accomplished. Technological brinkmanship is described as pursuing aggressive treatment as far as it can go in the hope it can be stopped at just the right moment it turns out to be futile. As medical care accelerates in its technical and scientific sophistication, the fine line between prolonging life and prolonging suffering may become blurred. Acknowledging that not all children will be cured and that approaches to cure can cause discomfort or even harm can be difficult. Physicians may find it difficult to acknowledge to a child or family that cure is not likely and may feel that they have failed professionally when curative options have been depleted. Families may suspect that they are not receiving all possible information about treatment options from their healthcare team, or that potentially curative therapies are being withheld because the center where they are receiving care is not as capable as another center, or for financial reasons. The family and the healthcare team may struggle with the feeling of giving up on the child and not continuing to fight for the child's life. When palliative and curative approaches are offered in tandem throughout the illness, there is less of a sense of transitioning to a different plan of care.

The realization that a child will not be cured may be clear at the time of diagnosis or it may become apparent only later in the course of treatment. Reports from the Institute of Medicine (IOM) and the American Academy of Pediatrics (AAP) include recommendations that discussions of palliative care begin at diagnosis for some conditions. This allows for curative therapies to include measures to assure comfort and enhance quality of life throughout the disease process. The AAP policy includes statements that indicate inclusion of palliative care early in diagnosis could be of tremendous benefit to the children who eventually lose their lives to their diseases as well as to those who recover. Because the term palliative is frequently perceived as meaning a step away from curative approaches, it can be difficult to introduce the concept early in the plan of care. Identified obstacles include an uncertain prognosis, parents not being ready, and time and staff limitations.

When dealing with a diagnosis for which the outcome is uncertain, healthcare providers may be reluctant to introduce the perceived opposites of curative vs. comfort-focused approaches. This dichotomous model can be challenging for families and healthcare providers. A diagnosis with an uncertain outcome can instead be the signal to offer palliative care, even if end-of-life care discussions are not yet appropriate. Pediatric oncologists surveyed by American Society of Clinical Oncology report a key factor in their decisions to shift from curative to palliative care is the absence of effective therapy. This reluctance can subject the child to multiple treatment regimens in desperate attempts to find the elusive cure and can result in increased toxicities and potentially hampered quality of life. Healthcare professionals may find it challenging to confront the truth of a poor prognosis without removing hope and the decision to involve palliative care may be feared to constitute an abandonment of hope for a cure, regardless how remote. Allowing the family to hear possible outcomes of a diagnosis may offer them the opportunity to better collaborate with healthcare professionals and prepare for what may lie ahead for them.

The idea that a parent will ever be ready to hear that their child will probably not survive is inconceivable. Parents may intellectually understand that the prognosis is very poor but remain reluctant to accept the likelihood of their child's death while waiting for a cure. Denial can be an important coping mechanism, but it can also function as a barrier to providing comfort and quality-of-life choices to a child during intensive treatments and at end of life. Denial can be damaging to relationships within the family and can result in moral distress for healthcare providers as further curative attempts become perceived as prolonging suffering. Research findings indicate that parents want to know as soon as the healthcare team knows that their child may not survive and what assurances they have that their child's comfort needs and quality-of-life issues will be addressed. It has also been shown that families are more satisfied with their relationships with the healthcare providers when they are better informed of possible outcomes, even if discomforting. In a study looking at parents' priorities for quality end-of-life care in an intensive care setting, honesty and access to complete information were the key recommendations from families. Rather than parents' perceived readiness, the healthcare professional's comfort with discussing the topic that can be expected to be difficult and time consuming may be a more important issue.

The time and expertise required to discuss issues of symptom control and quality of life can easily exceed a healthcare team's resources. At the same time, social workers, chaplains, nurses, and physicians may believe that comfort and supportive care are included in their existing plan of care without the need to add a palliative care specialist specifically. However, a retrospective study looking at healthcare record documentation did not reflect the use of these services for supportive care for children at end of life. The need for more education and mentorship in palliative care to improve staff members' knowledge and experience in this area is well recognized. Reimbursement for specific palliative care services remains limited, but can usually be included as routine services charged along with treatment support.