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Family Perspectives on the Quality of Pediatric Palliative Care
Nancy Contro, MSW, LCSW;
Judith Larson, PhD;
Sarah Scofield, MSW, LCSW;
Barbara Sourkes, PhD;
Harvey Cohen, MD
Arch Pediatr Adolesc Med. 2002;156:14-19.
ABSTRACT
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Background As a prelude to establishing a Pediatric Palliative Care Program, we
solicited information from families about their experiences and their suggestions
for improving the quality of end-of-life care. Participants were English-
and Spanish-speaking family members of deceased pediatric patients who received
care at Lucile Salter Packard Children's Hospital, Stanford University Medical
Center, Palo Alto, Calif.
Methods Sixty-eight family members of 44 deceased children were interviewed
regarding treatment, transition to palliative care, and bereavement follow-up.
Four clinical social workers and one clinical psychologist reviewed the participants'
responses and identified frequently occurring themes.
Results Several areas of unsatisfactory interactions with staff were identified:
confusing, inadequate, or uncaring communications regarding treatment or prognosis;
preventable oversights in procedures or policies; failure to include or meet
the needs of siblings and Spanish-speaking family members; and inconsistent
bereavement follow-up. A discrepancy emerged between the high degree of pain
described by the families and parents' perceptions that pain had been managed
well. Community hospice programs are frequently poorly prepared to serve pediatric
patients.
Conclusions There is a need to improve pediatric palliative care. Recurring themes
in the family interviews suggest useful issues to consider in the development
of a palliative care program.
INTRODUCTION
WHILE technological advances in the area of children's health services
have resulted in improved medical care and outcomes, children still experience
incurable conditions that result in death. In most health care institutions
serving these children, the transition from curative to palliative care lacks
a comprehensive, coordinated, and evidence-based approach. Recognition of
such problems led the Palliative Care Committee at Lucile Salter Packard Children's
Hospital (LSPCH), Stanford University Medical Center, Palo Alto, Calif, to
commission a needs assessment in the area of pediatric palliative care. The
primary intent of this assessment was to obtain personal accounts of families'
experiences to learn ways to improve care for pediatric patients and their
families.
PARTICIPANTS AND METHODS
RECRUITMENT OF PARTICIPANTS
English- and Spanish-speaking family members of deceased children who
received treatment at LSPCH were recruited. Approximately 200 death certificates
of children who died between April 1, 1996, and October 31, 1997, were obtained
from hospital records. Social workers (N.C. and S.S.) reviewed the names and
identified families who should not be contacted (because of geographic distance
or because the cause of death was fetal demise, etc). A letter of invitation
was mailed to 156 families. The project coordinator (S.S.) followed the letter
with a telephone call to describe the project in more detail and to answer
any questions. If the family wanted to participate, the project coordinator
scheduled a time for an interview.
Of the 156 families who were invited to participate, 93 could not be
reached by telephone or by mail. Twenty families declined participation, stating
it would be too painful. One couple self-referred.
A total of 68 participants, representing 44 families, were interviewed
regarding their perspectives on palliative care at LSPCH and in their home
communities. The interviews were conducted from September 1, 1998, through
March 31, 1999. The time between the child's death and the interview ranged
from 6 months (for the couple that self-referred) to 2 years. Participants
signed an institutional review board–approved informed consent before
the interview. The average length of the interviews was 2 hours.
CHARACTERISTICS OF PARTICIPANTS
Table 1 presents the demographic
characteristics of the participants. Table
2 presents a breakdown of the patients' diagnoses, duration of illness,
and ages at the time of death. Family members interviewed included those who
felt positively about their experience with LSPCH, those who reported a mixture
of positive and negative experiences, and those who reported an overall negative
experience. Even families who reported mostly positive experiences offered
suggestions for improvement. All expressed hope that the information would
help others.
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Table 1. Characteristics of the 68 Participants
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Table 2. Children's Diagnoses, Duration of Illness, and Age at the
Time of Death
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Talking about it is hard, but it's one of those things, if somebody
else can get some good out of it . . . as awful as it was, I was given a gift
of experience. If I can use it to help someone else, it makes L's life mean
something still.
THE INTERVIEWERS
Initially, 11 LSPCH clinical social workers (N.C., S.S., and others)
and 1 Stanford University, Stanford, Calif, clinical psychologist (J.L.) conducted
the interviews. Early on, 7 interviewers withdrew from the project, leaving
a group of 5 interviewers (N.C., J.L., S.S., and others) who conducted most
of the interviews. With the exception of one family, the interviewers were
unknown to the participants.
THE INTERVIEW
The LSPCH Palliative Care Committee (composed of physicians, nurses,
chaplains, social workers, biomedical ethicists, and patient advocates) researched
methods used by children's hospitals throughout the United States and Canada
to assess the needs of pediatric palliative care patients and their families.
Using these methods as a guide, a task force developed the interview protocol.
Pilot interviews were conducted, and final revisions were made.
The interview began with demographic questions. Participants were then
asked to describe the course and treatment of their child's illness. Next,
they were asked about interactions with hospital staff, quality of support
for their child and for siblings, and the family's experiences at the time
of their child's death. Finally, participants were asked about follow-up support.
Most questions could be answered yes or no or on Likert-type scales (eg, never,
sometimes, often, or always). Participants were encouraged to elaborate, especially
concerning areas needing improvement, and to bring up any issues or suggestions
that were not directly addressed in the interview.
RESULTS
ANALYSES
A group composed of the 5 interviewers who conducted most of the interviews
(4 clinical social workers [N.C., S.S., and others] and 1 clinical psychologist
[J.L.]) reviewed the responses of the participants and discussed what appeared
to be the most salient themes. The group first identified as many themes as
possible and computed frequencies to use as a guide to identify themes that
occurred more (or less) often. The collections of themes were then collapsed
into categories. Themes that were found to be the most prevalent are described
further. Because this assessment was exploratory and descriptive in nature,
and because quantitative analyses were not appropriate owing to the small
number of respondents and participation of multiple family members, only qualitative
results are presented.
FAMILIES' INTERACTIONS WITH STAFF
Parental Involvement
Parents appreciated it when they felt actively involved in making decisions
concerning their child's treatment and care. The parents' descriptions of
an effective caregiver were highly consistent. Honesty, clinical accuracy,
compassion, and availability were among the most desirable caregiver traits.
They treated me as an active member of the treatment team. They
would definitely listen. Before they made a decision they would always ask
for my input. And they were honest about not knowing how it was going to go,
but they would do everything they could to keep her within the comfort zone.
That was so important to me. And the fact that they acknowledged that this
is a situation that is not going to have a good outcome.
Isolated Incidents Can Be Extremely Painful
One of the most striking findings was how a single event could cause
parents profound and lasting emotional distress. Parents recounted incidents
that included insensitive delivery of bad news, feeling dismissed or patronized,
perceived disregard for parents' judgment regarding the care of their child,
and poor communication of important information. Such an event haunted them
and complicated their grief even years later. Parents did not pursue existing
complaint procedures because they were too overwhelmed to file a formal complaint
or because they feared repercussions.
We knew how serious it was all along, but we had the intention
of keeping positive. The one bitterness I have left [sobbing] . . . for some
reason, some doctors feel that you're not allowed to have hope, that you're
just supposed to accept it and move on. About two weeks before D passed away
I was sitting with him, holding his hand. This doctor, who wasn't even part
of our team, came in and said, "You know, you need a reality check. He's going
to die." I thought, "Who the hell are you to tell me when to give up hope?"
I can't let that one thing go, as perfect and wonderful as everybody else
was.
Upsetting experiences that related to preventable oversights and/or
errors in procedures, such as failures to comply with hand washing and compromised
immune system policies, were also prevalent, and left families feeling angry
and victimized.
We got a 3 AM call saying we should be there right away. We'd
had so many of those calls. So, when we arrived we just expected him to be
in a different room. No one met us. When we entered his room, we saw the blanket
pulled up over his face. My first reaction was, "Oh well, maybe he covered
himself." [Weeping] But then I went to his bed and there he was [dead].
Delivery of Difficult News
There were recurring reports that the delivery of difficult news was
problematic. Even those who rated communication of difficult news positively
had suggestions for improvement. Families stressed their need for a familiar
person to deliver difficult news about diagnosis, treatment, and prognosis.
This was especially critical with the news that their child was going to die.
Participants also emphasized that difficult news should be conveyed with compassion
and care, using straightforward nontechnical language. Above all, family members
recommended giving difficult news directly and honestly while still allowing
for hope. Parents also mentioned they would have appreciated better preparation
that bad news was coming.
Doctors need to relay medical facts honestly but always allow
for a glimmer of hope, even if only for a miracle. The doctors who best connected
with S always had hope. Be sensitive, honest, cautious about word choice.
It should come from someone the parent already has a relationship with.
Family members were asked if they received mixed messages regarding
their child's diagnosis, treatment, or prognosis. Several families reported
that some staff seemed more hopeful than others did, and that some staff gave
contradictory information or conflicting recommendations regarding their child's
treatment. Mixed messages resulted in confusion and emotional turmoil, and
added an additional layer of stress for families.
The morning nurse said, ‘He had a great night,' then she
leaned over and told the doctor, ‘His "sats" went down.' I felt they
weren't being honest with me. Just tell me! Sometimes I felt like they were
telling me what they thought I wanted to hear.
Family members expressed the preference for one caregiver to be "in
charge" throughout all phases of treatment. Having access to a familiar, consistent
caregiver was viewed as essential to quality care.
Having one constant person throughout was important. He was honest
with us, sometimes he'd say, ‘I have no idea,' but then he'd go talk
to someone and get the answer for us. Having one person follow you throughout
is probably the biggest sense of relief.
Siblings
Despite all that is known about the needs of the siblings of pediatric
patients, the reports of participants revealed that siblings still do not
receive the support they need. Any kindness and attention that staff extended
to siblings was appreciated. Suggestions for improving services to siblings
included access to playrooms during hospital visits, support groups, and respectful
attention from staff.
They should be allowed as much time together [with the patient]
as possible. Even if they don't show it, it affects them. They should be included
in discussions. Staff should pay attention to the siblings, too. Get to know
them.
Spanish-Speaking Families
Although the number of Spanish-speaking families was small, several
distinct issues emerged consistently in the accounts of their hospital experiences.
The language barrier between these families and hospital staff permeated every
aspect of the families' experiences. The lack of a common language compromised
parents' ability to acquire complete information and to fully understand their
child's medical condition, treatment, and prognosis. In addition, cultural
differences could be detrimental to care. For example, if the Spanish-speaking
parents' expectations that physicians show their child affectionate attention
were not met, this became a barrier to trust and confidence in the medical
team. These families reported feeling isolated, confused, and distrustful
of the hospital system.
No one ever told me the baby could die. I never understood what
was happening medically. The doctor came out during the operation and asked
my wife if they should stop or continue the operation. I didn't understand
that the baby would die either way at that point. No interpreter came during
this conversation.
Bereavement Follow-up
Continued contact with hospital staff after their child's death was
meaningful to the families who spent time at LSPCH. Follow-up by telephone,
mail, and/or in person was desirable and appreciated. Indeed, when offered
an off-site location for the interview to spare families further trauma, we
learned that many parents had already returned to the hospital to visit.
The phone calls are important. When her doctor called, I thought,
"Wow, you're still thinking of us!" The nurse practitioner still calls periodically.
When your child is sick like that, it becomes your life and the doctors and
nurses become your extended family. If they can continue some kind of periodic
contact, it's important.
PAIN MANAGEMENT
Pain management was an issue for families. Parents described their anguish
over seeing their child in pain. Yet, when asked specifically how well their
child's pain was managed (poorly, adequately, or well), the same parents whose
child experienced substantial pain also said their child's pain was managed
adequately or well.
We told them she didn't do well on morphine. We saw the pain
she was in. For 48 hours we kept telling them it wasn't helping. No matter
how much morphine they'd give her, she was flopping around on the bed. So
we stood there the whole time . . . she was moaning in pain. [Crying] Those
are the images that are the most painful, that she had to suffer. We were
helpless. I'm sure they thought what they were doing would work, I'm sure
for most kids it works. But for her, it didn't. At that time, we felt we weren't
being taken seriously. It's still the image we wake up thinking about.
HOME DEATHS
Of the 44 children represented in this assessment, 17 died at home.
Fifteen of these families used the services of a hospice, home care agency,
or both. Families reported problems ranging from frustrations with logistics
(eg, scheduling and inadequate staffing) to agency staff who freely admitted
they were unprepared to serve children, especially with regard to pain management.
For these families, inadequate home care left them wanting access to hospital
services that were unavailable to them on an outpatient basis.
We desperately needed pediatric pain control. The hospice didn't
know how to control his pain, but we couldn't use the hospital pain team because
we weren't ‘inpatient.'
COMMENT
The family interviews provided valuable information regarding specific
ways in which palliative care services to children and families might be improved.
Preventable errors in procedures and/or careless comments disturbed families
long after their child died. While technical care was important, a positive
relationship with the primary caregivers was also considered paramount to
good care.
This assessment illustrated that poor communication increased distress
for patients and families. In addition, the lack of a trusting bond with a
primary caregiver was identified as a major source of dissatisfaction. The
need for ongoing comprehensive information from a familiar and trusted staff
person was a recurring theme. The quality of the relationship between staff
and families was crucial to the families' appraisal of their experience. Even
one thoughtless remark could leave devastating and lasting impressions on
the families. The importance of the relationship with staff continued beyond
the child's death, particularly for those families who spent weeks to years
in treatment. Families were grateful when staff continued contact after the
child's death, and families who did not receive follow-up contact were disappointed
and felt dismissed.
There is much knowledge available regarding the impact of a child's
illness and death on siblings.1-6
Even so, the family interviews revealed that support for siblings continues
to be a necessary and lacking component of care.
Researchers7-14
in the field of thanatology have long recognized the role of language and
culture as it relates to a person's response to the death of a loved one.
The Spanish-speaking families in our assessment described a heightened sense
of despair resulting from their inability to communicate with staff. Further
systematic study is needed to elucidate the impact of language and culture
on provision of care. Once we are better informed, we can begin to improve
care for children and families from differing cultural backgrounds.
Failure to use opioid medication adequately with children and adolescents
has been well documented.15-20
A discrepancy between high levels of pain described by parents and their belief
that their child's pain had been managed "adequately" or "well" was noted.
One explanation might be that the hospital's reputation led parents to assume
that the most advanced technology would be used. Thus, they concluded that
their child's pain could not have been reduced. Another explanation may be
that the parents could not tolerate the idea that everything possible to reduce
pain was not done. Thus, they were predisposed to believe that pain was managed
as well as possible.
Despite the growth of the hospice movement in the United States, surprisingly
little research21-24
has addressed pediatric palliative care. The need for pediatric expertise
in hospice and home care agencies that care for dying children emerged in
this assessment. Children lacked access to experts in pediatric hospice care.
A hospital liaison to community hospices, home care agencies, and families
would be a beneficial addition to the services provided.
Several limitations to this assessment must be noted. The recruitment
response rate was low, and multiple family members were interviewed. Sampling
error and self-selection bias probably contributed to this problem. Highly
educated people may be more inclined to participate in an assessment such
as this one, as might families who have specific complaints they want to make
known.
This assessment was intended to be exploratory and descriptive. Because
standardized measures were not used, and although the families' accounts appear
to have considerable face validity, the reliability and validity of the interview
cannot be asserted.
The assessment relied on the perceptions of family members obtained
after the death of their child. Subjective retrospective perceptions may not
accurately reflect the actual events that took place and may not provide an
accurate account of their child's experience. Regardless, reliance on parents'
perceptions is essential when assessing care of children. Finally, the families
interviewed were treated at LSPCH. Thus, these results may not generalize
to all families who receive palliative care from LSPCH or to families who
receive services from other health care institutions.
CONCLUSIONS
The families who participated in our assessment unanimously expressed
gratitude for the opportunity to "tell their stories" and to provide input
into a future palliative care program. For some, it was the first time they
had recounted their experiences since the death had occurred. The enthusiastic
gratitude expressed by families may indicate that there is an unmet need for
opportunities to discuss such tragic events as the death of a child.
The families' interactions with staff were as important to their overall
evaluation as the medical aspects of treatment. It was disconcerting to learn
about careless comments from staff or lapses in procedures that caused families
additional distress. The literature clearly identifies the needs of siblings
of dying children, yet they still do not receive adequate attention. Finally,
the negative impact of language and cultural barriers on the delivery of medical
care is a well-recognized problem that deserves closer attention when addressing
the needs of pediatric palliative care patients and their families.
Pain management, a key component to palliative care and a primary concern
of families, is often ineffective. Despite the advances in pain management
technology, families reported that their child experienced considerable pain.
Families who took their child home to die discovered that community hospice
and home care programs were not qualified in providing pediatric palliative
care, including pain management.
Although much of what was learned from this assessment has been cited
in the literature, it has been documented in fragmented fashion. It appears
that there are few pediatric palliative care programs that encompass the full
spectrum of services needed for optimal care. This assessment reiterates the
need for a comprehensive program that incorporates all aspects of care and
family support, in the hospital and at home, from diagnosis to bereavement
follow-up.
| What This Study Adds
While research about the needs of dying patients has increased in recent
years, there remains an absence of substantial information about pediatric
palliative care. Much of the literature is fragmented and incomplete. This
study is a qualitative needs assessment that suggests direction and focus
for future research into pediatric palliative care.
This needs assessment presents descriptive findings from interviews
with families of deceased pediatric patients. It provides a cohesive overview
of major areas of pediatric palliative care that appear to need improvement.
It is presented as a resource for institutions developing pediatric palliative
care programs and for researchers seeking to define areas of further exploration.
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AUTHOR INFORMATION
Accepted for publication June 8, 2001.
This study was supported in part by the estate of Yvonne Conover, and
by the Charter Auxiliary benefiting Lucile Salter Packard Children's Hospital.
We thank the family members who shared their experiences in the hope
of improving services to other families. We also thank Amy Loughran, MSW,
LCSW, the members of the Palliative Work Group, and all the interviewers for
their work on the project.
Corresponding author and reprints: Nancy Contro, MSW, LCSW, Pediatric
Palliative Care Program Development, Lucile Salter Packard Children's Hospital,
Stanford University Medical Center, 725 Welch Rd, Palo Alto, CA 94304 (e-mail: nancy.contro{at}medcenter.stanford.edu).
From Pediatric Palliative Care Program Development (Ms Contro and Dr
Larson) and Pediatric Intensive Care (Ms Scofield), Lucile Salter Packard
Children's Hospital, Stanford University Medical Center, Palo Alto, Calif;
Montreal Children's Hospital, Montreal, Quebec (Dr Sourkes); and the Department
of Pediatrics, Stanford University School of Medicine, Stanford, Calif (Dr
Cohen).
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Arch Pediatr Adolesc Med 2003;157:207-208.
FULL TEXT
Suffer the Children: An Examination of Psychosocial Issues in Children and Adolescents with Terminal Illness
STILLION and PAPADATOU
American Behavioral Scientist 2002;46:299-315.
ABSTRACT
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