“Symptoms, suffering and palliative care at
the end of life in children with cancer” to synthesis best evidence for practice: A meta analysis
Abstract
Objective:
To review various studies to
identify Symptoms and suffering perceived by children at the end of life with
cancer and the need of palliative care.
Purpose of
review: Symptoms and suffering perceived by children at the end of life with
cancer and identifying Paediatric palliative care, is an important
aspect of care of children with life-threatening illnesses like cancer. We review recent publications with implications
for care of these children.
Data
sources: The
following database were searched i.e published research papers from different
sources such as original journals, E journals and electronic database for
example Pubmed, Medline, etc. The search
of literature was archived by searching the references using several key words
related to title and subject of the review. Literature was also archived from
online Journal of American academy of pediatrics and general search portal such
as Google search. Only articles written in English were included. The following keywords were used in
combinations: symptoms of cancer, palliative care, end of
life in children with cancer etc.
Study
Selection:
Studies were eligible if 1) studies conducted on perspective of parents on
suffering of their children due to cancer only were included in this study ( there were many
studies that evaluated the psychological and physical symptoms experienced by
children with cancer at end of life were included), 2. The need of palliative therapy for children
with end of life care was evaluated. 3. The
studies were published in refereed journal were evaluated. However few studies
were found that dealt with palliative care for children with cancer at end of
their life’s, and all studies that evaluate palliative care were included. There
were 10 studies met our criteria and were selected.
Data
Synthesis: Results of the studies were measured in terms physical
and psychological symptoms and sufferings of children with at end of life, and
palliative care provided as well as palliative care needed for children with
cancer at end of life. All studies
reviewed have shown that children with cancer is suffering with more physical
and psychological symptoms apart from physical pain at end of their life that
was not addressed properly by health care professional and need more palliative
care.
Conclusion: The
result of research review support that the children with cancer suffer
from fatigue, poor appetite, dyspnea,
status epileptics and commonly suffering
from pain, and psychological sufferings.
these sufferings are not addressed adequately by health care professionals and
need more palliative care and need additional systematic study, improved
education and support for staff members, and continued development of more
effective and compassionate delivery of pediatric palliative care
Introduction
Cancer is the leading cause of non accidental death in childhood. There has, however, been little
evaluation of the overall experience at the end of life of children who are
dying of cancer or of their symptoms other than pain. A number of studies have demonstrated
that among adults, the quality of care at the end of life is suboptimal. For
example; one study of elderly patients found that there was considerable
suffering at the end of life, with up to 25 percent of patients experiencing
moderate-to-severe pain in the last three days of life. It is not known whether the
experiences of dying children are similar.
Suffering is a complex multifaceted phenomenon,
which has received limited attention in relation to children with terminal illness. The care of
children at the end of life may be particularly complex. For most children with
cancer, the primary goal of treatment is to achieve a cure. Considerations of the toxicity of
therapy, the quality of life, and growth and development are usually secondary
to this goal. As a result, it may be difficult for physicians to change their
focus even when there is little hope of a cure. Unfortunately, about 25 percent
of children with cancer eventually die of their disease Studies reviewed that
Children who are receiving potentially curative treatment are more likely to
die in hospital (where they will receive intensive care) than those receiving
palliative treatment that are more likely to die at home or in a hospice. .
High-quality palliative care is now an expected standard at the end of life. Yet it is not known whether the care of children with
cancer meets this standard. Palliative care is philosophy of care that evolved
from the hospice philosophy to meet the gaps in care for seriously ill and
dying patient. Palliative care is appropriate for children with wide range of
condition even when cure remains a distinct possibility. Primary care provider should be taught to
recognise a child’s need for palliative care, to assess the emotional and
spiritual needs of the child and family, to facilitate advanced care planning,
to assess and manage the child’s pain and symptoms, to provide to a specialist.
Generalist and specialists alike can and should provide palliative
care. When needed. At a minimum the team can include a well trained primary
physician, ac care coordinator and in some cases, a bereavement specialist, in
addition a support should be available from specialist such as child
psychologist and child life specialist to deal with psychological problems
faced by children and family.
Once a need for palliative care is identified primary provides have a
central role in initiating critical discussion about the trajectory of illness
and about advance care plan
This
present systematic review of various studies was undertaken to identify symptoms, suffering and
need for palliative care at the end of life in children with cancer” to synthesis best evidence for practice.
Material
and Methods:
The systemic review was conducted using
the vide variety of literature of the subject of study i.e published research
papers from different sources such as original journals, E journals and
electronic database for example Pubmed, Medline, etc. the search of literature was archived by
searching the references using several key words related to title and subject
of the review. Literature was also archived from online Journal of American
Academy of Pediatrics and general. Only articles written in English were
included. The following keywords were
used in combinations: symptoms of cancer,
palliative care, end of life in children with cancer .
Objectives:
To review various studies to
identify Symptoms and suffering perceived by children at the end of life with
cancer.
To review the need
regarding palliative care at the end of life in children with cancer
Table
2 Literature Search
|
Database
|
No.
of studies
|
No.
of study selected
|
Key
words
|
|
Pubmed
|
11
|
6
|
Sufferings and symptoms of children
with cancer at end of life,
Palliative care
|
|
Medline
|
4
|
2
|
Sufferings and symptoms of children
with cancer at end of life,
Palliative care
|
|
American academy of pediatrics
|
7
|
3
|
Sufferings and symptoms of children
with cancer at end of life,
Palliative care
|
Inclusion
criteria
Studies were included if it met the
following criteria:
1.
Studies conducted on perspective of
parents on suffering of their children due to cancer only were included in this
study.
2.
The need of palliative therapy for
children with end of life care ware evaluated.
3.
The studies were published in refereed journal
were evaluated
4.
The paper were available in English
Exclusion
criteria;
Studies were excluded if:
1.
Studies on chemotherapy for children
with cancer at end of life
2.
Studies on radiation therapy for
children with cancer at end of life.
3.
Studies on surgical management for
children with cancer at end of life.
4.
Studies on incidence of cancer in
children
Results
The result of systematic review
identifies that, the focus of pediatric oncology
research was principally on the binary outcome: death or survival. As survival
rates improved, attention turned to reducing the toxic effects of therapy.
However, there are very few data looking at palliative care outcomes. In
addition, it is important to distinguish
between symptoms that occur at the end of life from those that occur in
children with cancer during their treatment, whether they survive or not. It is
important to differentiate the symptoms that are caused by the disease from
those that occur from treatment.
Collins and colleagues conducted a study to
define the most prevalent symptoms in children with cancer used the Memorial Symptom Assessment
Scale (MSAS) to prospectively assess children referred to Memorial
Sloan-Kettering Cancer Center over a 12-month period. The study population
consisted of 190 English-speaking children aged 10-18 years, of whom 160
patients consented to be tested and 159 completed the MSAS 10-18 using a
4-5-point scale. Greater than 35% of patients experienced clinically
significant lack of energy, pain, drowsiness, nausea, cough, lack of appetite,
and psychologic symptoms (sadness, nervousness, worrying, and irritability).
The most distressing symptoms were difficulty in swallowing, mouth sores, pain,
and insomnia. There is a marked difference in the number of symptoms between
inpatients (12.7 ± 4.9 symptoms) versus outpatients (6.5 ± 5.7 symptoms).
Children with solid tumors or who received recent chemotherapy experienced more
symptoms. Finally, pain was reported in 84.4% of the inpatient group.
Wolfe and colleagues examined retrospectively the symptoms
that children experience at the end of life. They interviewed, over a 1-year
period parents of children who died. One
hundred sixty-five families were identified, 143 were located, 107 agreed to
participate, and 103 English-speaking parents were interviewed either by phone
(98) or in person (5) to recall, through a questionnaire, the experiences of
their child at the end of life. The average age of the children at death was
10.8 ± 6.7 years, and that of the parents at the time of the interview was 4.3
± 7.7 years. Fifty-one percent of the children died at home, and of the 49% of
children who died in the hospital, 45% died in the intensive care unit. The
parents were asked whether their children experienced the following symptoms:
fatigue, pain, dyspnea, poor appetite, nausea or vomiting, constipation, or
diarrhea. The most common symptoms the parents reported were fatigue (nearly
100%), followed by pain, dyspnea, and poor appetite (all greater than 80%). Of
all the symptoms, fatigue, pain, and dyspnea were by far the most common in
causing a great deal of suffering at the end of life. Regardless of the seven
symptoms that parents were asked about, palliative treatment was inadequate,
because children continued to suffer. The two most common symptoms treated were
pain (76%) and dyspnea (65%), with only 27% and 16% benefiting from the
treatment. Less than 20% of patients with fatigue were treated, and very few
were reported to derive benefit from the treatment. Finally, of the seven
symptoms screened for, only pain, dyspnea, nausea or vomiting, and diarrhea
were mentioned in the patient's chart, whereas the treatment team failed to
recognize fatigue, poor appetite, and constipation. Despite the failure of the
health care team to recognize or treat effectively symptoms at the end of life,
the parents rated the care given by the oncologist (81%), nurse (90%), and
psychosocial staff (77%) as good to excellent. Clearly, parent satisfaction is
an inadequate indicator of quality palliative care.
A Qualitative
descriptive study with semi-structured interviewed mothers and fathers of hospitalised children (0-16 years old) with a terminal
illness in Granada (Spain). Of 13 parents were interviewed. They described children's suffering as manifested through sadness, apathy,
and anger towards their parents and the professionals. The isolation from their
natural environment, the uncertainty towards the future, and the anticipation
of pain caused suffering in children. The pain is experienced as an assault that
their parents allow to occur.
A study was
conducted to explore the psychological experiences
of children with brain tumours at the end of life: parental perceptive. Twenty-four parents of children diagnosed at less than 18 years of age
with a brain tumor, and who died between 2 and 12 years prior, were approached
for this qualitative, retrospective study. Three main domains were identified
that describe parents' perceptions of their child's psychological experiences:
(1) intrapsychic changes--those processes within oneself, and encompassing
internal aspects of a person such as cognitive and emotional variables; (2)
interpersonal interactions--those interactions between oneself and others,
including being treated like their same aged healthy peers and maintaining
relationships with others; and (3) posttraumatic growth--those positive
personal changes that can occur as the result of a significant struggle or
hardship.
A
descriptive study was conducted to analyses Critical Situations in Children,
Adolescents and Young Adults with Terminal Cancer within
the Home Setting. The records of 133 children cared
by paediatric palliative care team (PPCT) from 01/1998-12/2009 was analysed.
The majority of children who died sustained no critical situation. In 38
(28.6%) pts 45 critical situation occurred. These accumulated towards the end-of-life (62.2%
within the last week). About two-thirds were anticipated. There was no
clustering of critical situation during the night/weekend. Leading symptoms were neurological. In 4 critical
situations pre-hospital emergency physician was alerted. 5 children were
readmitted to hospital. Most critical situation (88.9%) could be controlled in
the home setting. Despite anticipation, a relevant number of children developed
critical situation, which needed either additional medical intervention or
other support by the PPCT. Considering the distressing and suffering character of status epilepticus and
dyspnoea, it is important to thoroughly address these conditions in palliative
care.
A study was conducted to describe
the circumstances surrounding the deaths of hospitalized terminally ill
children, especially pain and symptom management by the multidisciplinary
pediatric care team. Patients in the neonatal intensive care
unit, pediatric critical care unit, or general pediatric units of Vanderbilt
Children’s Hospital (USA) who were hospitalized at the time of death, between
July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey
had received inpatient end of life care (EOL) care at the hospital for at least
24 hours before death. A retrospective medical record review was completed to
describe documentation of care for these children and their families during the
last 72 hours of life. Records of children who had received inpatient EOL care
were identified (n = 105). A majority (87%) of children were in an intensive
care setting at the time of death. Most deaths occurred in the pediatric
critical care unit (56%), followed by the neonatal intensive care unit (31%).
Pain medication was received by 90% of the children in the last 72 hours of
life, and 55% received additional comfort care measures. The presence of
symptoms other than pain was infrequently documented.
A study was
conducted to describe and show effectiveness of the outreach team model of
palliative care (PC) in allowing home death for children with incurable cancer
by Children’s Cancer and Leukaemia Group United Kingdom. A
period of 7 months among 185 children from Uk oncology centre were recruited to a prospective questionnaire survey.
One hundred sixty-four children from 22 centers died (median age, 8.7 years).
Around 132/164 parent’s preferred home death for their children. And 68/164
parents requested no OPD or IPD visit for their children. A named
individual provided on-call palliative care advice by phone or home visit in 22
oncology centres, As palliative care
progressed, involvement of oncologist and social worker appeared less, whereas
paediatric oncology outreach nurse specialists (POONSs) remained prominent. Home
death is facilitated by this model. Professional roles change during PC and
after death. An ongoing role for the oncology team in bereavement support is
highlighted.
A study reviewed
about Development of a
paediatric palliative care program was preceded by a needs assessment that
included a staff survey and family interviews regarding improving pediatric
palliative care. Four hundred forty-six staff members and community physicians
responded to a written survey regarding comfort and expertise in delivering end
of life care. Sixty-eight family members of 44 deceased children were
interviewed regarding treatment, transition to palliative care, and bereavement
follow-up contact. Frequencies were generated for responses to the staff
survey. Five interviewers reviewed the families' narratives and identified
frequently occurring themes. Staff members reported feeling inexperienced in
communicating with patients and families about end of life issues, transition
to palliative care, and do not resuscitate status. Families reported distress
caused by uncaring delivery of bad news and careless remarks made by staff
members. Staff members reported feeling inexperienced in symptom and pain
management and described occasions when pain could have been better managed.
Families believed pain had been managed as well as possible despite observing
their children suffer. Fifty-four percent of staff members reported that
adequate support was not provided for those who treat dying children. Staff
members and family members stated their desire for more support. Staff members
who described their most difficult experiences caring for a dying child
referenced personal pain and inadequate support most frequently.
Table:1 Major findings of the meta
analysis
|
Category
|
Description
|
|
Samples
|
·
Children who died due to cancer
·
Children who are suffering from cancer
·
Parents of children died and still suffering
from cancer
·
Health care provides who care for the
child with cancer
|
|
Physical symptoms and sufferings of
children,
|
·
Pain
·
Poor Appetite
·
Dyspnea
·
Status epileptics
·
Fatigue
|
|
Psychological suffering
|
·
Sadness
·
Apathy
·
Anger towards parents and health care
professionals
·
Isolation
·
Progressive neurological dysfunctions
(positively or negatively)
|
|
Palliative care
|
·
Advanced planning, close contact, good
communication, detailed parental information, and a 24-h on-call service can
reduce critical situation in children with
terminal cancer.
·
Treatment of critical situations should
focus on the child's symptoms and
wishes, and the needs of the whole family.
·
Pediatric oncology
outreach nurse specialists (POONSs) (outreach team
model of palliative care (PC)) show
effectiveness in allowing home death for children with incurable cancer. Home
death is facilitated by this model.
·
For
Development of a pediatric palliative care program there is
need for additional systematic study, improved education and support for
staff members, and continued development of more effective and compassionate
delivery of pediatric palliative care.
·
The documentation of pain and symptom
assessment and management can be improved but requires new tools in
interdisciplinary pediatric palliative care.
|
Discussion
Palliative
care includes the control of pain and other symptoms and addresses the
psychological, social, or spiritual problems of children (and their families)
living with life-threatening or terminal conditions. But health care professional were less aware in
perceiving the suffering of the children with cancer than the parents. Clinical
research concerning the effectiveness and benefits of pediatric palliative care
interventions and models of service provision should be promoted. In addition,
information about pediatric palliative care that is already available must be
effectively disseminated and incorporated into education and practice. So that
health care professionals can easily recognize the suffering of the children
and plan for appropriate palliative care.
.
Conclusion: The
result of research review support that the children with cancer suffer
from fatigue, poor appetite, dyspnea,
status epileptics and commonly suffering
from pain, and psychological sufferings
like fear, sadness, apathy, and anger towards their parents and the
professionals caused due to isolation
from their natural environment, the uncertainty towards the future, and the
anticipation of pain. Most children and parents preference is home to spend
their end of life only need on-call palliative
care advice by phone or home visit than outpatient visit or inpatient admission
because Children who received cancer-directed
therapy during the end-of-life period suffered from a greater number
of symptoms than those who did not receive
treatment. And these sufferings are not addressed
adequately by health care professionals and need more palliative care and need
additional systematic study, improved education and support for staff members,
and continued development of more effective and compassionate delivery of
pediatric palliative care.
.
Reference:
1.
World Health
Organization. Cancer Pain Relief and Palliative Care in Children. Geneva,
Switzerland: World Health Organization; 1998
2.
American
Academy of Pediatrics, Committee on Bioethics (1994) Guidelines on
forgoing life-sustaining medical treatment. Pediatrics. 93:532–536.
3.
American
Academy of Pediatrics, Committee on Bioethics (1996) Ethics and the
care of critically ill infants and children. Pediatrics. 98:149–152.
4.
Fleischman AR, Nolan K, Dubler N, et
al. (1994) Caring for gravely ill children. Pediatrics. 94:433–439.
5.
Frager G
(1997) Palliative care and terminal care of children. Child
Adolesc Psychiatr Clin North Am.6:889–909.
6.
Doyle D, Hanks
GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine. 2nd
ed. New York, NY: Oxford University Press; 1998 Collins JJ (1996) Intractable
pain in children with terminal cancer. J Palliat Care. 12:29–34.
7.
Sirkia K, Hovi L, Pouttu J, Saarinen-Pihkala UM,
(1998) Pain medication during terminal care of children with cancer.
8.
J Pain Symptom
Manage. 15:220–22Cassel CK, Foley KM. Principles for Care of
Patients at the End-of-Life: An Emerging Consensus Among the Specialties of
Medicine. New York, NY: Milbank Memorial Fund; 1999
9.
Fagen TS (1982) Music
therapy in the treatment of anxiety and fear in terminal pediatric patients.Music
Therapy. 2:13–23.
10. American Academy of
Pediatrics, Committee on Bioethics (1995) Informed consent, parental
permission, and assent in pediatric practice. Pediatrics. 95:314–317.
11. Nitschke R, Humphrey GB, Sexauer CL, Catron B, Wunder S, Jay S (1982) Therapeutic
choices made by patients with end-stage cancer. J
Pediatr. 101:471–476.
