PEDIATRICS Vol. 114 No. 5 November 2004, pp. 1248-1252 (doi:10.1542/peds.2003-0857-L)
Hospital Staff and Family Perspectives Regarding Quality of Pediatric Palliative Care
* Pediatric Palliative Care Program, Lucile Salter Packard Children's Hospital, Stanford University Medical Center, Palo Alto, California
Department of Pediatrics, Stanford University School of Medicine, Stanford, California
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Background. Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care.
Methods. 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.
Results. 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.
Conclusions. Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the 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.
Key Words: palliative care • pediatrics • pain • bereavement
As a prelude to establishing a pediatric palliative care program at Lucile Salter Packard Children's Hospital at Stanford, the Palliative Care Committee commissioned a needs assessment. The assessment included examination of patient care from hospital staff and family perspectives. We conducted exploratory interviews with families of deceased patients, as well as a staff survey regarding related issues.
In a previous article,1 we identified salient themes that emerged from the families' interviews. Increased sensitivity in communication about difficult issues, pain control, and coordination of care were among the most relevant themes for families. As we learned more from families about their needs, we also sought to learn about the experiences and needs of hospital staff members.
Caring for dying children is a stressful job. Insufficient training and competence in symptom management and communication skills may exacerbate staff members' stress and affect the quality of care. Of note, stress affects not only the physicians and nurses who work closely with children and families in the palliative phases of treatment but also a host of other hospital staff members. This assessment sought to obtain input from many of the different professionals involved in the care of the children and families. Currently, most professional health care training barely addresses end of life care, especially for children. Although advances have been made in understanding the impact of death and loss, too little has been done to apply this knowledge in preparing health care professionals for the challenges of pediatric palliative care. This article describes results from our staff survey as they relate to findings from our family interviews.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Participants
Hospital Staff Members
A total of 446 staff members affiliated with Lucile Salter Packard Children's Hospital at Stanford responded anonymously to a survey regarding delivery of palliative care. The survey was developed by a multidisciplinary task force and was pretested with a sample of physicians, nurses, and social workers and 1 psychologist. Staff members were invited to participate via information tables, staff meeting announcements, and (for community physicians) mailed announcements. Participants included 110 attending physicians (25%), 48 residents (10%), 191 nurses (43%), 17 social workers (4%), 21 psychosocial support staff members (5%), and 42 ancillary support staff members (9%). Seventeen respondents (4%) did not disclose their occupations. Seventy-four percent of the respondents were women, and 26% were men. Of the 191 nurses, 106 identified areas of practice; specialties included neonatology (45 nurses, 42%), oncology (25 nurses, 24%), pediatric intensive care (15 nurses, 14%), general pediatrics (9 nurses, 9%), and other, including nephrology, gastroenterology, pain management, and cardiology (12 nurses, 11%). Ninety-nine nurses (52%) had worked <10 years, 75 (39%) had worked
10 years, and 17 (9%) did not identify how long they had worked. The nurses who had worked 10 years had experienced an average of 6 deaths in the past year, whereas those who had worked <10 years averaged 5.5 deaths. Of the 110 attending physicians, 90 (82%) identified areas of practice. Of these, 26 (29%) were general pediatricians, 11 (12%) neonatologists, 9 (10%) hematologists/oncologists, 8 (9%) cardiologists, 6 (7%) surgeons, and 5 (6%) intensivists. The rest were spread among pulmonary medicine, anesthesia, infectious diseases, genetics, allergy, psychiatry, adolescent medicine, obstetrics, and orthopedics. Fifty-nine attending physicians (54%) had worked <10 years, 44 (40%) had worked >10 years, and 7 (6%) did not specify how long they had worked. Most of the nonphysician/nonnurse respondents worked in a variety of specialties, including oncology, pediatric intensive care, pulmonary medicine, general pediatrics, neonatology, and cardiology. Seventeen of the nonphysician/nonnurse respondents were social workers. The average number of years employed at Children's Hospital was 8.31 years.
It was not possible to establish the exact response rate within the hospital because it could not be determined how many staff members had access to the information tables. However, at the time of the survey, hospital staff members totaled 
1950. Twenty percent of the 250 community physicians included in the mailing completed and returned the survey.
Families
A total of 68 family members of 44 deceased children were interviewed by clinical social workers and a psychologist regarding their perspectives on palliative care (see ref 1 for a description of recruitment procedures and methods). Relationships to the children were as follows: 36 mothers (53%), 21 fathers (31%), 3 foster mothers, 2 aunts, 1 grandmother, 1 stepmother, 1 brother, 1 sister, 1 uncle, and 1 wife. Fifty participants (74%) were white, 15 (22%) Latino, and 3 (4%) Asian. Fifty-nine participants (87%) were English-speaking and 9 (13%) were Spanish-speaking. The diagnostic categories for the 44 children included oncology (28 children), cardiology (4 children), neonatology (4 children), and other (8 children). Recruitment efforts did not attempt to obtain an even distribution according to diagnostic category.
Measures
Staff Survey
The staff survey asked participants to rate their expertise and comfort in working with palliative care patients and families and the adequacy of support for staff members who provide pediatric palliative care. Staff members completed the survey online or at designated locations in the hospital. Community physicians completed the survey by mail. The survey included items requiring Likert-scale responses (eg, never, sometimes, often, or always) plus 1 free-response question that invited staff members to describe their most difficult experience with a dying patient and to specify what made it so difficult.
Family Interviews
In the individual interviews, the family members described their experiences regarding the treatment and death of their child. The interview questions included but were not limited to aspects of medical care, interactions with hospital staff members, and quality and duration of support.
Analyses
Staff Survey
Frequencies were generated for staff responses to the Likert-scale items; many care providers wrote comments expanding on responses to those items. Two clinical social workers and 1 psychologist reviewed the responses to the open-ended question (regarding the most difficult experience when a pediatric patient died) and identified recurrent themes. Two independent raters coded the responses according to these themes; the inter-rater reliability was .96.
Family Interviews
Five interviewers reviewed the family responses and discussed what appeared to be the most salient themes. Themes that appeared to occur frequently were grouped into categories, including interactions with hospital staff members, pain management, and quality of support.
Comparison of Staff and Family Responses
As the review of staff and family responses progressed, it became apparent that the groups shared areas of concern. Because the measures and analyses differed and because the validity and reliability of the measures cannot be stated, the following section only suggests some themes common to staff members and families. Percentages are reported for descriptive purposes only.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Staff Communication With Families
Staff members reported feeling inexperienced (defined as beginner or somewhat experienced) in 4 aspects of interacting with pediatric patients and families, ie, communicating with patients about end of life issues, communicating with patients' families about end of life issues, discussing the transition to palliative care, and discussing do not resuscitate status (Table 1). Staff members in all occupations reported feeling inexperienced. Those who felt inexperienced reported feeling distressed and inadequate in their communications with patients and families.
I didn't know how to comfort the family. I also had trouble with feeling that maybe I could have done things differently that somehow might have changed the outcome. I doubted my decisions (medically) and wondered if we had done everything possible.
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TABLE 1. Staff Communication with Families
I personally wasn't prepared for the family's reaction. They knew their child was going to die but when it happened, their response made me uneasy. They "wailed" as part of their culture. I was unfamiliar with their culture so I was caught off-guard. I would like to know more about cultural differences with dying patients.
Families described their need to have confidence in the treatment team. They wanted to hear information, especially difficult news, from a familiar care provider who communicated honestly and clearly but compassionately. Although most family members reported overall good communication with staff members, they also reported mixed messages. Ineffective or inadequate communication increased the families' distress and/or confusion.
It was really palpable, the feeling when things were going badly. The residents and interns were coming on rounds, and you could just see their fear and their discomfort with the situation. I think that was mostly with the physicians. With the nurses, maybe it's just that they're with the patients more or something. They just seem more comfortable. I don't know how they do it.We called him Dr Gloom. He came in to see our daughter once, and he was so textbook style. He was so depressing. Everything was so negative. He only talked about the negative. It was just his character, you could tell. So, we'd be nice to him but we called him Dr Gloom because there was no light at the end of his tunnel.
Moreover, a majority of the family members reported incidents of careless or insensitive remarks that caused families lasting pain and complicated their grief.
I know he had to ask if we didn't want our son resuscitated. It's just the way he did it. It was very cold. He was saying, "If he has to be resuscitated, this is what's going to happen . . ." It was very negative talk about our son dying. He had him sold down the road. Then he looked at whomever else was in the room and said, "Okay, let's go to lunch!" That sent me. It just sent me. I thought, "How can you be so cold?" I do remember that, and it made me very angry.
Pain Management
Pain and symptom management was a prominent concern for staff members and families. Forty-three percent of the attending physicians and 56% of the residents reported feeling inexperienced (defined as beginner or somewhat experienced) in managing dying patients' symptoms. Nearly one-half of the total number of physicians reported feeling inexperienced in pain management (Table 2). One-half of the nurses reported feeling inexperienced in managing patients' symptoms, and 30% of the nurses reported feeling inexperienced in managing patients' pain. In addition, staff members described how distressing it was to observe children suffer, particularly when it appeared that relief was possible but was not available or delivered.
Pain control was insufficient. The doctor was unwilling to prescribe more medication.
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TABLE 2. Staff and Family Responses to Pain/Symptom Management Questions
It is so difficult to observe pointless suffering before death. The suffering is brought about by trying to do more when it is obvious the chances of survival are zero. Sometimes it is the family, other times it is the medical staff, who refuses to accept death.
Family members also described the anguish of watching their child suffer any measure of pain. Most families, however, thought that everything possible was done to alleviate their children's discomfort.
There was a certain point where I realized that she wasn't getting better and she was suffering. (Weeping) I felt like what we were doing was cruel. I didn't want her to suffer.I wish they had communicated to us sooner that there were pain doctors here that maybe we could have brought in. They couldn't find the right combination to put her on.
Inadequate Support
The average number of patient deaths experienced in the past year was 3.0 for the attending physicians with <10 years of experience and 4.2 for attending physicians with 10 years of experience. Residents had worked with an average of 6 patients who died in the previous 1-year period. In the nonphysician/nonnurse category, the average number of deaths was higher for several groups, as follows: chaplains, 19.3; unit clerks, 9.6; social workers, 9.2; teachers, 8.0; respiratory therapists, 7.7. The remaining staff members had been involved with an average of 2 to 5 deaths in the past year.
Inadequate support for staff members who provide end of life care and for the families they serve emerged as an important theme. Staff accounts of distressing aspects of providing palliative care included perceptions that emotional, psychological, and social support was lacking or nonexistent. Staff members stated their need for time to debrief after a patient's death and a desire for ongoing support services and educational opportunities. They also reported disappointment when they were unable to provide follow-up contact with the family after a death. In response to an item that asked, "Does the hospital provide adequate support for staff working with dying patients?," 54% replied no.
No one seems to talk about the death after it occurs. Staff is left to deal on their own. I've heard others talk about crying on the way home, crying at commercials, and drinking.No! We occasionally have "debriefings" or reviews of patients that have been with us a long time and we're close to. But, for the many others that get us down, depressed, or sad, especially acute-care deaths/traumas, we have nothing. And sometimes we just need reassurance that we did well and all we could.
Families also emphasized the need for support during their child's illness and death and for bereavement follow-up contact. Families often regarded the hospital staff as a "second family," and they experienced a lack of contact after their child's death as a secondary loss.
This was home for us for so long. A lot of people that dealt with us now don't contact us. It's sad. I understand that they have other people to take care of. ... Staying in touch with people afterward is important, even if it's for 6 months or a year, because you grieve forever. When you spend so much time with one set of people and then they're gone . . . we felt really lost.When her primary doctor called it was like, "Wow, you're still thinking of us!" The nurse practitioner still calls periodically. When your child is sick like this it becomes your life, and the doctors and nurses become your extended family. I do think if they can keep some kind of periodic contact going it's important.
Staff Members' Most Difficult Experiences
Two hundred forty-nine staff members responded to the open-ended question that asked, "What was your most difficult experience when a child died? Please describe what made it so difficult." References to personal pain and the lack of support were cited most often.
I had become very close to the patient and his family. I was new to the unit and had little experience with this. I just did not know what to say. I still haven't written a note to the family and I should have by now.I felt so sad for the family, especially since they were becoming more hopeful. It was difficult to continue other chores without a break to reflect and discuss the patient's death with other staff.
When asked if they would use the services of a palliative care team, 62% of the attending physicians, 85% of the residents, 73% of the nurses, and 80% of the other staff members said that they would welcome consultation with a palliative care team.
Doctors seem to get caught up in the details of patient care, trying all kinds of heroics and missing the big picture. We need to have someone come in and help initiate the switch to palliative care before putting the families through too much.We need instruction on how to approach families and discuss palliation. Also, we need more knowledge about the legal aspects of palliative care. We need expert consultation.
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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The staff surveys were conducted after the family interviews, as the second phase of the needs assessment. Therefore, we were already aware of issues identified by families regarding end of life care. In our review of the staff surveys, themes similar to those expressed by the families emerged. Staff members and family members described related experiences from their respective viewpoints that were clearly distressful. Although there is a growing body of literature on pediatric palliative care, this is one of the few assessments that addressed the experiences of both staff members and family members. Hilden et al2 surveyed pediatric oncologists regarding end of life care and identified several important areas in need of attention. We chose to survey all staff members, as a basis for designing a hospital-wide palliative care program for all children with life-limiting illnesses. It is our belief that many different disciplines play significant roles in the care of children with incurable illnesses. Indeed, the responses from staff members other than nurses and physicians accentuated the need for a broad approach, in terms of staff training and support. Many staff members in many disciplines, such as unit clerks, respiratory therapists, social workers, chaplains, and others, often have frequent contact with this population, making their interactions quite important in overall care. Contributions from staff members and families are critical for the development of a comprehensive program that cares for patients and families and also trains and supports staff members who have the challenging job of treating the patients.
It has been demonstrated that care providers who have insufficient training and experience in the delivery of end of life care feel less competent and often become susceptible to feelings of "burnout," inadequacy, and discomfort.8,17 When this occurs, they often resort to emotional distance or depersonalization in situations they feel poorly equipped to handle. In addition, behaviors may emerge that are unplanned and unhelpful.6,10,11 The families we talked with reported profound distress when bad news was delivered without compassion or when staff members behaved insensitively. Because many staff members reported feeling inexperienced in delivering such news, we hypothesize that the insufficient preparation of the staff members contributed to the families' negative experiences.
Studies also indicate that inadequate support for staff members who provide end of life care can lead to depression, emotional withdrawal, and a variety of other symptoms.3,6,7,11,19 Staff members felt required to put aside their grief and return immediately to work, felt they had no place to talk about their experiences, and were plagued by painful memories. Families also identified feelings of isolation and distress in the absence of adequate support. Staff members and family members emphasized the importance of ongoing emotional and social support. There is growing evidence that forums for staff support that facilitate examination of intense emotions are beneficial in enhancing the relationship between caregiver and patient.7,8,12,13
A child's death is a rare occurrence that is viewed by many people as unnatural.5,10,14,15 Historically, medical training has not sufficiently addressed end of life issues,8,12,16 especially for children.4–6,9,10,17 Many care providers are trained to concentrate almost exclusively on cure. Unless they seek additional education and training specific to palliative care, their expertise in this area may continue to be deficient despite exposure to dying children. Consequently, even practitioners with years of experience may have inadequate skills (technical and/or interpersonal) regarding pediatric palliative care.
The staff members and family members we interviewed described their anguish at watching children suffer and their sense of helplessness with respect to alleviating the pain. Staff members also conveyed concerns about their lack of preparation and their feelings of inadequacy in pain management. In addition, they described instances of disagreements among attending physicians and refusal to consult with the pain management team. Clearly, this area requires additional study, and advances in pain management techniques must be incorporated into comprehensive effective treatment plans and palliative care programs.
Several limitations to this assessment must be noted and have obvious implications for follow-up study. Sampling errors and self-selection bias might have influenced the results. Some staff members might be more interested than others in the subject of palliative care. Staff members who saw a need for improvements might have been more motivated to participate than were those who think conditions are adequate. Similarly, selection bias might have influenced the family interview results.
This assessment was exploratory and descriptive and was limited to families and staff members from only 1 hospital. Standardized measures were not used. Therefore, although the staff survey and family interviews appear to have considerable validity, the reliability and validity of the measures cannot be stated.
This assessment relied on self-report measures, with personal perceptions including some bias. However, a recently published article on provider perceptions of children's deaths used a similar technique that yielded valuable results.18
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Health care staff members fight valiantly to cure illnesses. Similarly, families endure incredible hardships in the quest to help their children. When children die, inadequate training and support exacerbate feelings of failure and despair. The experiences of families and staff members, taken together, emphasize the continuing need for improvements in end of life care. An effective pediatric palliative care program must incorporate comprehensive education and training for all staff members who interact with children and their families in the palliative phases of treatment. In addition, an abundance of adequate and timely support is necessary for staff members as well as families.
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ACKNOWLEDGMENTS |
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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 Lucile Salter Packard Children's Hospital staff members who participated in the survey and the families who shared their experiences in the hope of improving services. We also thank Amy Loughran, MSW, LCSW, the members of the Lucile Salter Packard Children's Hospital Palliative Work Group, and all of the interviewers for their work on the project.
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FOOTNOTES |
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Accepted May 18, 2004.
Reprint requests to (N.A.C.) Pediatric Palliative Care Program, Lucile Salter Packard Children's Hospital at Stanford, 725 Welch Rd, Palo Alto, CA 94304. E-mail: nancy.contro{at}medcenter.stanford.edu
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PEDIATRICS (ISSN 1098-4275). ©2004 by the American Academy of Pediatrics
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