ACT -- for Pediatric Palliative Care

Carrie Lynn Calabrese, BSN, RN

Pediatr Nurs. 2007;33(6):532-534. 2007 Jannetti Publications, Inc.
Posted 02/05/2008

Abstract and Introduction

Abstract

There are approximately 400,000 children living in America with lifethreatening conditions, and every year approximately 55,000 children die.
Many of these children suffer at the time of their death due to lack of
aggressive symptom management. While curative medicine is always the
primary goal of treatment, there may come a time when parents must
choose another option of care for their child. Aggressive Comfort
Treatment (ACT) is the option that will make the difference in the life and
loss of a child. ACT proposes aggressive symptom management with
attention to psychosocial and spiritual needs. Allowing the individual and
family to have a voice in the dying process, palliation is pursued just as
aggressively as cure once was. In support of ACT, the American Academy
of Pediatrics (AAP) recommends the development and broad availability
of pediatric palliative care services (AAP, 2007). Promoting life
enhancement rather than life extension, ACT will have a monumental
impact on the care of a dying child.
In April 2006, Jane died peacefully with her family at her bedside in their
home. She was a charismatic, bright, 17-year-old young woman who at
the age of 12 had been diagnosed with a brainstem glioma. After
enduring years of different chemotherapy protocols and multiple courses
of radiation, Jane's tumor disappeared and then reappeared all too often.
After 5 years of therapy, Jane was diagnosed with Acute Myleogenous
Leukemia (AML), an ill-fated side effect of years of chemotherapy. As
Jane's condition began to deteriorate, the possibility of a cure became
highly unlikely. As an African American family with solid family values and
a strong Baptist faith, her parents struggled with how to proceed with
Jane's care. Should cure continue to be the sole focus of Jane's care?
They could not imagine ever being comfortable with allowing Jane to die.
As weeks passed, Jane became more fragile. Her parents continued to
want chemotherapy administered and nasogastric tubes placed for
feeding and medications. To some staff on the oncology unit, aspects of
Jane's care had become overly burdensome to her. When the parents
were approached about signing a "Do Not Resuscitate (DNR)" order for
Jane, they refused.
Introduction

History has shown that palliative care has been overshadowed by

curative medicine for the past 50 years (Price, 1997). And while curative
medicine should predominate in the majority of medical cases, there may
come a time when a switch to palliative care must be adopted. There are
approximately 400,000 children living in America with life-threatening
conditions and every year approximately 55,000 children die. Half of
these children die of chronic, sometimes life-long disorders (Rushton &
Catlin, 2002). Many endure substantial suffering, and attempts to control
their symptoms are often unsuccessful. In 2000, Wolfe and colleagues
(2000) found that children with cancer continue to undergo painful
procedures and suffer from the symptoms of advanced disease.
Accordingly, The American Academy of Pediatrics (AAP) recommends the
development and broad availability of pediatric palliative care services
based on child-specific guidelines and standards (AAP, 2007). In 2002,
Catlin and Carter published a new protocol for Neonatal End-of-Life
Palliative Care. The purpose of this project was to educate medical
professionals and enhance their preparation and support for a peaceful,
pain-free, and family-centered death for dying newborns. This protocol
helps to establish palliative care efforts that are equally as meaningful to
patients and families as the provision of continued life-extending
endeavors.
In addition, in 2001, the End-of-Life Nursing Education Consortium for
Pediatric Palliative Care (ELNEC-PPC) was launched. This project,
funded by the Robert Woods Johnson Foundation, is a curriculum
developed to enable nurses to recognize the knowledge and skills
needed to provide quality pediatric palliative care. Developed as a "train
the trainer" course, it is the intention that those individuals trained in
ELNEC-PPC curriculum will be integral in the dissemination of palliative
care skills to other pediatric care providers (Bednash et al., 2002).

Initiating ACT: An Alternative Approach to Therapy

What is best for the families of all children with potentially life limiting
conditions is that at the time of diagnosis, patients and families are told
that cure is a goal but not always attainable. They must also be told that
exquisite symptom management will always be a part of treatment. A time
may come when family members realize that their child will die despite
efforts at curative therapy. It is at this time that the medical team should
focus on the alternative approach to therapy. This approach to therapy,
with different goals and expectations, will now focus purely on comfort,
rather than cure. This approach to treatment is termed "Aggressive
Comfort Treatment." Dr. Patricia Murphy, a nurse specializing in
bereavement and clinical ethics coined the acronym "ACT," or Aggressive
Comfort Treatment (Murphy & Price, 1995). Dr. Murphy proposed a more

positive and aggressive approach to the ethical question about foregoing

cure-oriented treatment. The central idea of ACT is to characterize an
individual's receiving two equally aggressive therapy options. Both
aggressive comfort treatment and curative treatment are vigorous and
ongoing forms of therapy. Cure-oriented treatment aims to promote life
extension, while ACT promotes life enhancement (Price, 1997). Life
enhancement helps one to be clear about the few things that are really
important in life, especially family, work, and relationships.
ACT, offering intensive caring, would include a DNR order in Jane's chart.
In addition, a written order would also entail everything that the medical
team will provide for Jane. Utilizing ACT involves hard work, technical
expertise, and attention to detail. It focuses upon what might have been
thought of as less valued interventions, such as meticulous skin and
mouth care, more frequent visits from loved ones, obtaining favorite
foods, and the elimination of unnecessary tests and procedures. ACT
refocuses energy on what caregivers still can do for the patient and it
helps the patient and family to set meaningful and life-enhancing goals.
Family caregivers of dying individuals need to feel that they are
aggressively pursuing treatment options for their loved ones. While
abandoning curative treatment options might have felt like they are
abandoning their loved one, ACT allows a new realm of options to be
pursued.

Operationalizing ACT
So how does the medical team operationalize ACT and what makes the
enactment of this care modality so invaluable? First, communication
among the patient, family, and healthcare team would detail a list of endof-life symptoms that the patient is currently experiencing. Next, the
healthcare team and family would determine the most aggressive
measures that would treat these symptoms. This treatment option would
also be extremely non-invasive, and be able to be carried out in the
hospital setting or the patient's home.
At home, at the end of her life, Jane experienced seizures. Her parents
were given valium (diazepam) suppositories to be used at home to stop
her seizing. This would aggressively treat her seizures, while allowing
Jane to stay at home with her family. The alternative option would be
traveling to the hospital, have an intravenous catheter placed and be
given ativan (lorazepam). Jane also experienced excess oral secretions
and terminal respirations at the end of her life. To aggressively treat this
symptom, Jane was started on a transderm-scop (scopolamine) patch.
This small patch, placed behind her ear, helped to dry up the copius
secretions enough so that Jane no longer had to be suctioned with a
catheter. For restlessness, agitation, confusion, or delirium that may be

experienced at the end-of-life, ACT proposes that there is a decrease in

all excessive stimulation (Bednash et al., 2002) to the patient. This may
be achieved by the patient having vital signs once a day, or not at all, the
lights dimmed in the room, and a sign may be placed on the patient's
door, asking for all visitors or health care professionals to please check
with the nursing staff before entering the room.
For patients experiencing dyspnea, or air hunger, the patient may utilize a
fan at the bedside, rather than an invasive nasal cannula delivering
oxygen (Bednash et al., 2002). When experiencing anemia or bleeding,
care providers will use pressure, ice and/or topical thrombin to stop the
bleeding, rather than a platelet transfusion, which requires intravenous
access and either a trip to the hospital or a visit from home care. Family
members may come to use burgundy colored towels, so as to not upset
the patient or themselves with the bleeding that may be occurring
(Bednash et al., 2002). When selecting pain medications, those drugs
that can be delivered by oral, mucosal, rectal, transdermal, or topical
route are first utilized (Bednash et al., 2002). Fentanyl citrate (fentanyl)
patches can be used first for pain control. The alternative more invasive
option might entail trialing a patient controlled analgesia pump (PCA),
which involves IV access and always being attached to a pump.
Aggressive supportive measures could also be determined for vomiting,
cough, constipation, diarrhea, and fevers.
While dying patients have many physical needs, they also have
psychological and spiritual needs. Like adults, children and teens likely
have an end-of-life "To Do" list, whether they are cognizant of it or not
(Fitzsimons, 2006). Aggressive comfort treatment will help define
activities that will facilitate them in saying their goodbyes. ACT
encourages dying individuals to discuss their fears, concerns, and
distress about the dying process, while also enabling them to find
purpose and meaning in the experience.
ACT supports and promotes patients to have a voice in their dying
process. Life-enhancing goals for these individuals may be defined by
how they choose to leave their mark on the world. Patients may express
themselves through photography, writing, picture journals, poetry, and
music. ACT enables the patient to focus on compiling a memory box or
detailed song list for their portable media player, writing letters to loved
ones, and bequeathing favorite things to family members and friends.
Other enriching goals, such as getting a driver's license, or owning a
puppy will be facilitated if possible. Trips or visits from loved ones will take
precedence over medical tests or procedures. Social work may contact
the Make-a-Wish Foundation and help to make a patient's wishes a
reality. Psychologists will strive to lessen the fears and anxiety that
accompany the dying process, and help the patient to express his or her
needs and wants to others. Other members of the interdisciplinary team,

such as child life therapists, chaplains, and nutritionists, will also play an
integral part in helping the patient achieve specific goals. Most
importantly, the pursuit of any or all of these goals will be aggressive
(Murphy & Price, 1995).
Aggressive comfort treatment is an invaluable commitment to pediatric
palliative care. It facilitates a peaceful dying process. The dying are made
as comfortable as possible, surrounded by loved ones, and have been
helped to spend their remaining time concerned with their own priorities.
Children experiencing aggressive comfort treatment do not spend entire
days NPO for medical tests and procedures. They are not having a
venipuncture done at 6 am every morning for daily lab values that most
likely will not change the medical plan for the day. Their uncomfortable
and sometimes embarrassing nasogastric tubes are removed and these
children will eat only when they decide that they are hungry. They are
able to get a good night's sleep because they are not awakened for vital
signs every 4 hours, or having their IV site checked every hour. Rather
than exerting themselves with physical therapy, these children learn
relaxation techniques, how to utilize imagery to help with distraction, and
spend time writing letters to family and friends. Usually visiting hours do
not apply to them while in the hospital and the rule of only one parent
sleeping at the bedside is overlooked. Siblings are not only allowed to
visit, but they encouraged to stay as long as they wish.

Providing Choices
With the proposal of ACT in Jane's case, her family heard a detailed list of
interventions that would be provided for their child. This new way of
thinking persuaded Jane's family to choose palliative care and ultimately
sign the DNR order and discontinue some of the procedures that they had
been insisting she receive. Palliative care cannot be seen as the end of
therapy. It must be seen as aggressive symptom management and
attention to psychosocial and spiritual needs. All too often, the alternative
to chemotherapy and other life-preserving interventions is viewed as
"giving up." This defeatist language can foster negativity and
hopelessness. Parents often feel as if they have abandoned their sick
child if they have chosen to "give up" on curative therapy. Language is a
powerful tool. Perhaps if more medical professionals used the terms
"aggressive comfort treatment," more families, like Jane's, would feel
comfortable opting for palliative care for their dying child.
A choice between two equally aggressive therapy options is all that
parents want for their dying child. They will never agree to a treatment
option that allows them to feel that they have abandoned their child in any
sense of the word. After their child has died, they must feel that they did
everything that could have been done for their child. Simple, but

profound, ACT provides what both the child and parents need. With ACT,
palliation will be pursued with as much vigor, intelligence, and sense of
expectation as cure once was (Murphy & Price, 1995).
For Jane, the adoption of ACT meant that her parents were able to feel
that they were continuing to have the team aggressively care for their
daughter. They stopped their efforts to cure the disease in favor of efforts
to promote Jane's quality of life. The team provided aggressive comfort
measures up until the day that Jane died. Her family felt comforted in that
they had provided care for their daughter through her entire illness.
Ultimately they felt at peace with her death.
This article discusses a sensitive issue that is complex and provocative,
and will undoubtedly stimulate a variety of opinions. What do you think?
Post your comments about this topic on the Pediatric Nursing Web site
and read what others have to say as well. Visit our homepage at
http://www.pediatricnursing.net/ and click on 'Discussions.' The opinions
and assertions contained herein are the private views of the contributors
and do not necessarily reflect the views of Pediatric Nursing Journal or
the publisher.

References
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education consortium (ELNEC): Introduction to the ELNEC-core curriculum and to ELNEC
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dying teens on legacy activities. National Hospice & Palliative Care Organization (NHPCO):
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Rushton, C.H., & Catlin, A. (2002). Pediatric palliative care: The time is now! Pediatric Nursing,
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Carrie Lynn Calabrese, BSN, RN, Registered Nurse, Clinical Level III,
Childrens Hospital of Philadelphia, Philadelphia, PA.