The Language of Pediatric Palliative Care

1 The Language of Pediatric Palliative Care



Joanne Wolfe, Pamela S. Hinds, Barbara M. Sourkes, With Contributions from All Chapter Authors




Words are deeds. The words we hear


May revolutionize or rear


A mighty state. The words we read


May be a spiritual deed


Excelling any fleshly one,


As much as the celestial sun


Transcends a bonfire, made to throw


A light upon some raree-show.


A simple proverb tagged with rhyme


May colour half the course of time;


The pregnant saying of a sage


May influence every coming age;


A song in its effects may be


More glorious than Thermopylae,


And many a lay that schoolboys scan


A nobler feat than Inkerman


—William Charles Wentworth


Basic words such as palliative care, end-of-life care, and terminal care are often used interchangeably, yet they convey very different meanings to clinicians, patients, and families. Those different meanings can lead to unintentioned harmful consequences. As stated by Dr. Eric Cassell, “Similar to scalpels for surgeons, words are the palliative care clinician’s greatest tools. Surgeons learn to use their tools with extreme precision, because any error can be devastating. So too should clinicians who rely on words.” (Personal communication) A primary focus of the textbook is to promote consistent use of predefined terminology as a means of exemplifying this critical tenet of palliative care.



Definition of Terms


The definitions of words in this chapter were derived through consensus. Specifically, the list of terms were generated by the editors and distributed to all authors for review. Any suggested edits were then considered by the editors and if consensus agreement was reached, then the edit was incorporated. Additional terms were also suggested by chapter authors and the same process was used to determine whether such terms should be included in this overview.



Life-threatening or life-limiting?


Differences of opinion exist about whether the term life-threatening (where cure may be possible) or the term life-limiting (no realistic hope of cure) is more appropriate when defining palliative care conditions. In this textbook we use the broadest term, life-threatening, because we believe that most serious illnesses are characterized by prognostic uncertainty, with little consensus among experts regarding which conditions have “no reasonable hope for cure.”



Illness


The subjective experience of a patient with an underlying disease or medical condition.1



Palliative care


The term palliative care is from the Latin palliare, to cloak.2


Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. Palliative care:


• Considers the patient and family as the center of the unit of care,

• Provides relief from pain and other distressing symptoms,

• Affirms life and regards dying as a normal process,

• Intends neither to hasten nor to postpone death,

• Integrates the psychological and spiritual aspects of patient care,

• Offers a support system to help patients live as actively as possible until death,

• Offers a support system to help the family cope during the patient’s illness and in their own bereavement,

• Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated,

• Aims to enhance quality of life, and may also positively influence the course of illness,

• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage distressing clinical complications.


WHO Definition of Palliative Care for Children (Adapted)2


Palliative care for children represents a special, albeit closely related, field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families:


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

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

• Demands that health providers evaluate and alleviate a child’s physical, psychological, and social distress,

• Requires a broad interdisciplinary approach,

• Includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited,

• Can be provided in tertiary care facilities, in community health and hospice centers, and in children’s homes,

• Should be developmentally appropriate and in accordance with family values.


End-of-life care or terminal care


Unlike most of palliative care, which is often delivered in the context of prognostic uncertainty, the term end-of-life care or terminal care refers to the care delivered when the prognosis of death is almost certain and close in time. Examples include a patient with advanced refractory metastatic cancer who is expected to die within days or weeks, or a patient with end-stage lung disease who had been maintained on high ventilator settings when this technological support is withdrawn. Exceptions arise and patients can survive well beyond what was expected to be an earlier death. Comfort care is often used to describe the interdisciplinary care provided at this time. However, there is little consensus on what comprises comfort care, and as such, the term should be avoided.

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Related posts:

  1. Introducing Palliative Care
  2. Faith, Hope, and Love: An Interdisciplinary Approach to Providing Spiritual Care
  3. Solid Organ Transplant
  4. Anticipatory Grief and Bereavement

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Jul 11, 2016 | Posted by in PEDIATRICS | Comments Off on The Language of Pediatric Palliative Care

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