Running Head: THE BENEFITS OF PALLIATIVE CARE

Introducing Benefits of Palliative Care to Parents of Dying Children

When Treatment is Futile
Gladys Dushane
University of Central Florida

THE BENEFITS OF PALLIATIVE CARE

Abstract
Palliative care is an adjunct service to family-centered care. It should be introduced early
in the diagnosis of a life-threatening ailment. The purpose of this paper is to explain why
early introduction of palliative care is important and why prolonging futile treatment
during end of life is not beneficial. The theory of comfort is the foundation of palliative
care and should be at the forefront of palliative care initiatives. Educating healthcare
workers is the key to initiating palliative care for patients. Education will empower
nursing staff to strategize, and implement the theory of comfort in terminally ill patients.
Keywords: pediatrics, pediatric palliative care, death, dying, end of life

THE BENEFITS OF PALLIATIVE CARE

Introducing Benefits of Palliative Care to Parents of Dying Children

When Treatment is Futile
Jacob was a 17-year-old leukemia patient that had been admitted multiple times to
the pediatric intensive care unit. His hospitalizations had become more frequent and
longer in duration. His pain was difficult to manage. On the last admission, he was
hospitalized for graft versus host disease and required mechanical ventilation. Jacob was
dying and the family had a hard time accepting that. Every treatment option was explored
but there were none left that would change the end result of death in the immediate
future. The physician ordered continuous renal replacement therapy (CRRT) to buy his
family time to cope. The parents viewed this therapy as life-saving and were optimistic
that he would get better. The physician continued daily to focus on the small positive
changes that were being made, for example a relatively insignificant change in platelets
that increased from 25,000 to 30,000. The family held out hope that that was good. In
addition to recommending treatment options for Jacob, the family also requested minimal
pain medication be ordered because they did not want to alter the mental state of their
child. The physician agreed wanting to appease the parents. Jacob died approximately
one month later, on a ventilator, with CRRT, poor pain control and bowels sloughing.
It is never easy to hear that a child, especially your child, is going to die
(Braganza, 2014). Parents do everything they can do to help their children be successful
in life and to thrive. When the news sinks in that they can no longer protect their child
from the inevitable, parents are faced with a decision about how the end of life will look
for their child. Due to a focus on family-centered care, often physicians will continue

THE BENEFITS OF PALLIATIVE CARE

treatments that will preserve the childs life but will not change the outcome for the child.
Further, said treatments may in fact be causing pain during this end of life period.
Pediatric palliative care is an area of growing education and research and in 1998 the
Initiative for Pediatric Palliative Care (IPPG) was developed (Adams, Green, Towe &
Huett, 2013).
Offering futile treatment is a problem for many reasons. Treatments that will
preserve life but not change the outcome are costly, painful, and traumatic for both child
and parent. This is a nursing problem because we are patient advocates and we need to
not only focus on family-centered care (which often is misinterpreted as appeasing
families) but on what is in the best interest of the patient.
Statement of the Problem
Over-emphasis on family-centered care has masked the need to put the patient
first. Patients with a long-term illness need to have the palliative care team involved early
in the disease process.
Significance of the Problem
Nearly 50,000 children die every year in the United States, and 500,000 have
diseases with life-threatening prognoses (Harrison, 2014). A little over 50% of those
deaths happen in infancy (Knapp, C., Madden, V., & Fowler-Kerry, S. 2012). Death
causes in order of largest percentages are: accidents, assaults, cancers, suicide, congenital
malformations, chromosomal anomalies, and heart disease. The Childrens Project on
Palliative/ Hospice Services published a paper in 2001 that stated that 5,000 children out
of the 53,000 children that died that year received hospice care (Knapp, C., Madden, V.,
& Fowler-Kerry, S. 2012). Futile treatments during end of life on a terminally ill patient

THE BENEFITS OF PALLIATIVE CARE

are costly to insurance providers and to hospitals that may have to absorb the costs of the
treatment. Physicians and nurses are taught survival. They are taught how to keep patients
alive and modern medicine has allowed healthcare workers to become very good at that.
Although a childs death feels unnatural to both provider and parent, it is an unfortunate
fact of life. It is important for healthcare providers to incorporate palliative care
guidelines at their institutions. Palliative care is foundational to true family-centered care.
Palliative care can be introduced at the beginning of a diagnosis of a long-term illness
(Haut, Maloney-Harmon & Michael, 2012). The palliative care team should be involved
at diagnosis so that the parents can build a relationship with this group (Johnson &
Vadeboncoeur, 2012). Often, the palliative care team is consulted in the childs last days
and that is very scary to the parents. It is as if they have to admit that their child is dying
and if they are not willing, then the palliative team has to go away. However, if the team
is established at the beginning, then when the parents and child need this team, they will
be received and able to help.
Education on palliative care is necessary for the nursing and physician staff to be
comfortable providing end of life care (Haut, Maloney-Harmon & Michael, 2012). The
Initiative for Pediatric Palliative Care (IPPC) has established materials that educate staff
on how to approach death and dying with families, which include power point
presentations, lectures, video curriculum, case-based scenarios and resource tools
(Rollins, 2006).
Specific Aims
Annual, 2% of the death population will be pediatric. Of those deaths, less than
10% will receive palliative care. These findings have spurred the development of

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initiatives to improve Palliative and Hospice Care in the pediatric population. The
specific aim of this paper is to educate the reader on the importance of implementing
palliative care at diagnosis. Outcome: the reader would research their palliative program
at their institution. If their was no palliative care program or a program that is not
involved at diagnosis, that the reader would be inspired to join the team and begin to
implement change based on the initiatives that IPPC have developed. In order for
pediatric palliative care to advance, nursing involvement is crucial. Nurses are at the
forefront of advocacy and as we educate ourselves and our profession, we will be better
equipped to advocate for our patients.
Theory/ Concept Framework/ Model
Katherine Kolcaba initially published the Theory of Comfort in 1994. Kolcaba
stated that within the nursing practice, comfort was the satisfaction (actively, passively,
or co-operatively) of the basic human needs for relief, ease or transcendence arising from
healthcare situations that are stressful (McEwen, M., & Wills, E. M., 2011, p. 244).
Main concepts of this theory are comfort, comfort care, health seeking behaviors,
institutional integrity, and intervening variables. The purpose of this theory is to improve
the comfort of the client by improving comfort measures offered by providers. Some of
the proposals of comfort theory include: nurses identifying comfort needs of the patient
and families, nurses strategize and organize interventions of comfort, and nurses
intervene and address comfort needs.
The theory of comfort meets the evaluation framework for a middle range theory.
The evaluation criteria for middle range theories are substantive foundations, functional
adequacy and structural integrity. The theory of comfort can be applied to a variety of

THE BENEFITS OF PALLIATIVE CARE

practice environments and client groups. The theory of comfort as March & McCormack
(2009) wrote explained that environment was the external surroundings of the patient.
The patient is the receiver of nursing care. The receiver of care could be an individual,
family, institution, or community. The external environment could be a hospital setting, a
home care setting, an outpatient setting, an urgent care, etc. A family receiving the theory
of comfort may find that a social worker provided them with meal tickets to go to the
cafeteria because of a financial need they had, the social worker provided them with
comfort in the transcendence sense. The theory of comfort is extremely versatile and can
be applied in every situation, from every person that touches base with a patient, in any
environment.
Empirical indicators have been identified for the concepts of the theory of
comfort. According to McEwen & Willis (2014), several empirical indicators are in place
for the comfort of theory. The General Comfort Questionnaire, Verbal Rating Scale
Questionnaire, the Radiation Theory Comfort Questionnaire, the Hospice Comfort
Questionnaire, the Urinary Incontinence and Frequency Comfort Questionnaire, and the
Comfort Behaviors Checklist. Many research articles have used these tools to successful
complete their studies.
There are published examples of research related to the theory of comfort. March
& McCormack (2009) wrote an article and proposed that nursing theory has been
borrowed among disciplines but this is not well documented however. In their article,
they propose that the nursing comfort of theory should be the healthcare comfort of
theory. In Katherine Kolcabas theory of comfort she describes comfort in 3 forms: relief,
ease, and transcendence. She describes four contexts in which patient comfort can occur

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such as physical, psychospiritual, environmental, and sociocultural. When comfort is

achieved, the patient and the institution benefit. The Theory has evolved through
scholarly inquiry. The first example the General Comfort Questionnaire was originally 48
questions but had now been modified to 28 and has been modified to use for different
populations. Also another example is the article by March & McCormack (2009). The
article proposed after research that this nursing theory of comfort should transcend and be
the healthcare theory of comfort.
Any patient, in any setting, can use the Comfort Theory. Often, the patient needs
are first identified by the nurse, who will intervene to meet their comfort needs.
Application of the Theory to the Problem
Nursing interventions suggested by the comfort of theory in pediatric palliative
care include:

Comfort. Derived from the Latin word comfortare, which means to strengthen
greatly. Nursing intervention is aimed at enhancing comfort.

The process of comfort. This involves active participation from the patient and
family to enhance the patients comfort. Palliative care and hospice teams are
coaches through the process. Having the needs for relief, ease, or transcendence
met in physical, psychospiritual, environmental, and social contexts is comfort.

Enhanced comfort. This ensures the desired outcome (Vendlinski, S., & Kolcaba,
K. Y., 1997).

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(Kolcaba, K., 1991)

The types of comfort include relief, ease, and transcendence. Comfort is
obtainment is a state.
Relief: the patients specific need is met.
Ease: calm or contentment.
Transcendence: rising above the problem or pain.
The context in which comfort occurs includes physical, psychospiritual,
environmental, and social (Vendlinski, S., & Kolcaba, K. Y., 1997).
Physical: bodily sensations.
Psychospiritual: internal awareness of self; relationship with a higher being
Environmental: human experience
Social: relationships

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10

Summary and Conclusions

The theory of comfort is the foundation of palliative care. Identifying the types of
comfort and the context in which comfort occurs, allows institutions to implement
initiatives to palliative care programs. When the theory of comfort is provided to patients
with terminal illness, the result will be peaceful death. Peaceful death is equally
important to the family as it is to the patient. Peaceful death will allow the family to go
on with life knowing they did everything to help their child and that their child died at
peace.
The theory of comfort is beneficial to patients, families, nurses, other healthcare
providers and institutions. When families feel as though they have received comfort for
both themselves and their loved ones, they are likely to recommend the institution. When
nursing staff feels as though they can adequately comfort their patient, they have a higher
job satisfaction and are likely to stay with an institution.
The educational material provided by the IPPC should be mandatory education
for all healthcare providers. Nurses are at the forefront of comfort and palliative care.
Education is important to empower nursing staff to nurses strategize and organize
interventions of comfort.
Palliative care allows patients to live every day to its fullest by improving a
patients quality of life. Palliative care does not replace family-centered care, rather it is
an extension of family-centered care. Palliative care should be introduced at the time of
diagnosis of a long-term illness. Education is the key to equipping healthcare providers
with the comfort necessary to adequately take care of a dying patient.

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11

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