In the United States, hospice is a Medicare benefit ³ 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 and/or caregiver as well. Hospice care is given by a public agency or private company approved by Medicare. It is for all age groups during a patient’s final stages of life. The goal of hospice is to care for a terminally ill patient and family, not to cure the illness.

Outside the United States, hospice is a term used to describe a philosophy of care that focuses on the palliation of terminally ill patients. The term is also often used in association with a building, which 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. Though 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 should be avoided in this textbook unless being used as a communication example.

An integrative model wherein people from multiple disciplines 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 text (as per the title).

Transdisciplinary

A term used with increasing frequency that does not yet have a stable, consensus meaning. Usage suggests that a transdisciplinary approach dissolves boundaries between disciplines. In a newly 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 should be 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 such as hospitals, hospices, or the military. Chaplains carry out religious rituals for families in addition to providing spiritual guidance and counseling.

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 the 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:

• Natural opiates (alkaloids contained in the resin of the opium poppy including morphine and codeine),

• 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,

• Endogenous opioid peptides, produced naturally in the body, such as endorphins, enkephalins, dynorphins, and endomorphins.

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 for 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, 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, among 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), 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 life-threatening illness. The expression “the parents signed the DNR” is misleading because in most settings they are not required to do so. It is more accurate to state the parents agreed to the recommendations of the healthcare team regarding resuscitation status.

Additional terms to avoid

Summary

There are many other words used by clinicians in the care of children with life-threatening illness which can relay unintended potentially harmful messages to children, families, and members of the interdisciplinary team. Even simple words can be harmful. For example, Macdonald and Murray describe in detail how the term “appropriate” has replaced “normal” to describe what is suitable for a particular person, situation, or place.⁵ Its use is “appropriate” when being used as a descriptor for the physical condition of the patient; for example, “the child’s growth was appropriate for his age.” However, they argue that the term is increasingly used to pass moral judgment; for example, “the mother’s tears were appropriate given the news she had just received” or “the father’s series of questions were inappropriate.” From this example they conclude that there are many hidden values behind one’s choice of words and phrases and eloquently state, “it is essential that we bring an awareness to our language… and reflect on what we mean, what messages we are [trying] to convey.”⁵ This emphasis on language is not intended to impart a heightened sense of anxiety around communication, rather to underscore the importance of, “thinking before speaking” (Fig. 1-1).