1 The Language of Pediatric Palliative Care
Joanne Wolfe, Pamela S. Hinds, and Barbara M. Sourkes
The Word
Oh, a word is a gem, or a stone, or a song,
Or a flame, or a two-edged sword;
Or a rose in bloom, or a sweet perfume,
Or a drop of gall is a word.
You may choose your word like a connoisseur,
And polish it up with art,
But the word that sways, and stirs, and stays,
Is the word that comes from the heart.
You may work on your word a thousand weeks,
But it will not glow like one
That all unsought, leaps forth white hot,
When the fountains of feeling run.
ELLA WHEELER WILCOX
Words are, in my not-so-humble opinion, our most inexhaustible source of magic. Capable of both inflicting injury, and remedying it.
j. k. rowling (Harry Potter and the Deathly Hallows)
Introduction
Family Reflection
Several months into our son Steve’s cancer treatment, we experienced one of many stressful situations.
Because Barb is a nurse, the doctors generally directed their technical medical explanations to her, even when we stood side by side. Barb quickly developed the habit of pointing at me and instructing them to make sure I understood the information they were trying to convey—translate it into civilian language—and let me ask questions.
In this particular incident, however, that was not the problem. Throughout his hospitalizations Steve frequently endured extremely high fevers and severe rashes. One of these incidents landed him in the ICU. After a very difficult night, the head of the ICU stopped in and casually said something along the lines of, “Your son is the sickest child in the unit.” We were floored. Did we really need to know that? How did comparing him to other patients provide us with actionable information? Our worries sky-rocketed. Since we were in the largest children’s hospital in a major metropolitan area, we started to wonder if Steve was the sickest child in the city that day. Was his death imminent?
While we stood there trying to process that news, Steve’s oncology fellow managed to track us down in the ICU. She approached us with a cheerful smile on her face. Unaware of the news we just received, she excitedly told us that his recent scan showed that his tumors were shrinking!
We were constantly searching for hope, but wondered how exactly should we process this news? How does it align with the words of the ICU head? Was our family having a good day or a bad day?
Seventeen years later, we still think about this.
Bob & Barb Calla
In memory of our son, Steven Calla
Definition of Terms
The definitions of words in this chapter were derived through consensus. Specifically, for the first edition of this textbook, the list of terms and definitions 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, 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. For the current edition, the editors re-examined all terms and suggested updated terminology when indicated.
Illness. The subjective experience of a patient with an underlying disease or medical condition.1
Life-threatening, life-limiting, or serious illness? The term “life-threatening” suggests a range of possible outcomes including living a long or shortened life, and that the outcome is uncertain. The term “life-limiting” may imply that there is no realistic hope for a long life or that the condition limits the fullness of the life experienced. “Serious illness” is a health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life or excessively strains the caregiver.2 In this text we recommend using the broadest terms, either life-threatening or serious illness.
Children with complex chronic conditions. Formally defined by Feudtner et al., these are children with chronic conditions that involve different organ systems or one organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center.3 Many, though not all of these children have life-threatening illness.
Palliative care (from Latin palliare, to cloak). The World Health Organization (WHO) defines palliative care as an approach to care 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.4
Palliative care
• considers the child/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 or 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;
• aims to enhance quality of life and may also positively influence the course of illness;
WHO definition of palliative care for children (adapted)4: Palliative care for children represents a special, albeit closely related field to adult palliative care. The WHO’s definition of palliative care appropriate for children and their families is as follows:
• Care should be developmentally appropriate and in accordance with family values.
Primary palliative care and specialty palliative care.5 As described, palliative care is an approach to caring for seriously ill people and their families. This approach can be delivered by a primary interdisciplinary team, such as a cardiology team caring for someone with advanced heart disease, or a specialty palliative care team. All clinicians caring for the seriously ill should have basic primary palliative care skills in communication, advance care planning, symptom management, and coordination of care. The role of the specialty palliative care team is severalfold: (1) to provide added expertise for more complex clinical circumstances; (2) to provide education and training to clinicians caring for the seriously ill; (3) to advance the field of palliative care through innovation, quality improvement, and research; and (4) to advocate across systems for improved care of the seriously ill.
End-of-life care or terminal care (from Latin terminalis). Unlike most of palliative care, which is often delivered in the context of prognostic uncertainty, the terms “end-of-life care” or “terminal care” refer 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 being maintained on high ventilator settings and this technological support is being discontinued. Needless to say, exceptions arise and patients may survive well beyond what was expected to be an earlier death. Comfort care is often used to describe the interdisciplinary care provided at end of life. However, there is little consensus on what comprises comfort care, and, as such, the term should be avoided.
Hospice. In the United States, hospice is a Medicare and Medicaid benefit and is defined as a special way of caring for people who are terminally ill. Hospice care involves a team-oriented approach that addresses the medical, physical, social, emotional, and spiritual needs of the patient. Hospice provides support to the patient’s family or caregiver as well. Hospice care is given by a public agency or private company approved by Medicare. It is for all age groups, including children, adults, and the elderly during their final stages of life. The goal of hospice is to care for a terminally ill patient and family, not to treat the underlying illness.
Outside the United States, “hospice” is a term used to describe a philosophy of care which focuses on the palliation of terminally ill patients. The term is also often used in association with a building that may house patients receiving terminal care and/or a hospice program serving patients in the community.
Dying. “Dying” refers to the period when a patient is approaching death within days, hours, or moments. Although in conversations with patients clinicians may echo terms used by patients and/or family members such as “passing away” or “at life’s end,” these gentler terms are not used in this text unless being used as a communication example.
Hospice and palliative care. “Hospice and palliative care” is the term used to denote the interdisciplinary field as a whole.
Hospice and palliative medicine. “Hospice and palliative medicine” is the term used by the American Board of Medical Subspecialties to denote this physician subspecialty, established in 2006.
Multidisciplinary. A collection of disciplines in which each discipline retains its methodologies and assumptions without change or development from the others. It is a linear model—the disciplines run parallel to one other.
Interdisciplinary or interprofessional. An integrative model wherein people from multiple disciplines or professions work together in addressing a common challenge. This model can be seen as overlapping circles (as in a Venn diagram) where each specialty maintains its own identity while also sharing some common methodologies and assumptions with other disciplines in the web. This collaborative work is more typical of pediatric palliative care and is the underlying tenet of this book (as per the title!). Notably, there is some debate in the literature regarding which of these two terms is better. “Interdisciplinary” can refer to healthcare providers with the same foundational training but different specialties, such as physicians who are oncologists and surgeons. At the same time, the term can refer to those with different foundational training, such as nursing and child life. Some suggest that “professional” is a more empowering and inclusive term,6 however, it is behavior rather than a term that leads to more inclusive outcomes. Of note, “interprofessional” is used at times in this textbook in the context of education and training.
Transdisciplinary. A term used with increasing frequency that does not yet have a stable, consensus meaning. Usage suggests that a transdisciplinary approach dissolves boundary between disciplines. In a still emerging field, porous boundaries may create confusion and undercut the richness and uniqueness of each discipline.
Medical provider, medical caregiver, or clinician? Psychosocial clinician? The most general term we would recommend using to refer to a practitioner of palliative care would be “clinician,” no matter what the underlying discipline, including physician, nurse, pharmacist, etc. “Medical provider” may connote physician, and “caregiver” is often used in referring to a layperson such as a family member who cares for a patient. Other acceptable terms include healthcare provider and mental health provider for psychologists, social workers, etc. However, if referring to a skill set unique to one of these types of clinicians, then that discipline is explicitly named.
Child life specialist. Child life specialists provide both therapeutic play interventions and social recreation for children on an individual and group basis.
Chaplain. A chaplain is typically (although not always) a member of the clergy who serves in specific settings, including hospitals and hospices. Chaplains provide spiritual guidance and counseling for families as well as carry out religious rituals. In most instances, chaplains will meet with families of any faith, regardless of their own denomination, unless the family makes a specific request.
Opioid. An opioid is a chemical substance that has a morphine-like action in the body. These agents work by binding to opioid receptors, which are found principally in the central nervous system and gastrointestinal tract. The receptors in these two organ systems mediate both the beneficial effects and the undesirable side effects. Although the term “opiate” is often used as a synonym for opioid, it is more properly limited to the natural opium alkaloids and the semi-synthetics derived from them.
There are a number of broad classes of opioids:
• Semi-synthetic opiates, created from the natural opioids, such as hydromorphone, hydrocodone, oxycodone, oxymorphone, desomorphine, diacetylmorphine (heroin), nicomorphine, dipropanoylmorphine, benzylmorphine, and ethylmorphine.
• Fully synthetic opioids, such as fentanyl, methadone, and tramadol.
The term “narcotic” is believed to have been coined by the Greek physician Galen to refer to agents that benumb or deaden, causing loss of feeling or paralysis. It is based on the Greek word ναρκωσις (narcosis), the term used by Hippocrates for the process of benumbing or the benumbed state. Because the term is often used broadly, inaccurately, or pejoratively outside medical contexts and often instills fear in families, because of such associations, we prefer the more precise term “opioid.”
Resuscitation status and do-not-resuscitate. Resuscitation status refers to the outcome of a discussion (or a series of discussions) between a patient and family and a clinician regarding the potential use of certain medical interventions in the care of a patient with life-threatening illness. Most healthcare facilities have a specific order form, entitled “do not resuscitate” (DNR), that is used to denote the patient’s resuscitation status. The exact content of a DNR order varies widely depending on legal jurisdiction and individual facility interpretation. Terms such as “do not attempt resuscitation” (DNAR) and “allow natural death” (AND) have been proposed to replace DNR in order to emphasize differing qualities of such orders. For example, DNAR negates the underlying assumption that if an intervention is employed, the outcome will be successful. AND has been recommended as a more acceptable term from a patient perspective, although this has not been explicitly studied among families of children with serious illness. To add and clarify: the expression “the parents signed the DNR” is misleading since in most settings they are not required to do so. It is more accurate to state that the parents “agreed to the recommendations of the healthcare team regarding resuscitation status.”
Terms to Avoid
Aggressive care. Aggressive is often used to describe an approach to treatment of serious illness which can have positive and negative connotations. Similar to “fighting” and other battle terminology, the implication is that, with an aggressive approach, the patient will win; that is, defeat the illness. However, these words imply that the patient has control over the outcome of their illness, whereas the reality is that outcomes are beyond their control (Box 1.1).
Box 1.1 Nate Cavallo Eulogy: December 14, 2015
Nate
Funny, Active, Creative, Wise
Sibling of Lexi and Bennett
Lover of Halloween and Christmas
Who fears pitch dark
Who needs my Mom
Who gives a happy attitude
Who would like to see Disneyworld
Resident of Lexington
Cavallo
So insightful, even at a young age, this is how Nate described himself in a poem he wrote in Ms. Klein’s third grade class at Fiske School.
Three and a half years ago, Nate was dealt an unimaginable curve ball when he was diagnosed with stage 4 cancer within days of graduating from Fiske Elementary School. While most people, myself included, may have been derailed by this, Nate rallied and somehow only got stronger and more courageous as time went on.
Often we hear about a child battling cancer as if he is at war with his own body, but this metaphor is unfair. It assumes that the child somehow has control over his disease and plays a role in his own success or failure to cure it. Nate understood the complexity of his situation and chose to focus on making every day count. A few months ago, Nate posted a picture of himself on Instagram and was angered by somebody’s comment “keep fighting.” To the rest of us, it seemed like a perfectly reasonable comment, but Nate said, “Why do people think I spend my time fighting everyday? I am just living like everyone else.”
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