Original Article
713
End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents DonnaMaria E. Cortezzo, MD1
Marilyn R. Sanders, MD2
1 Department of Anesthesia, Division of Pain and Palliative Medicine,
Cincinnati Children’s Hospital Medical Center, Ohio 2 Division of Neonatology, Department of Pediatrics, University of Connecticut School of Medicine, Connecticut Children’s Medical Center, Connecticut 3 Division of Neonatology, Department of Research and Pediatrics, University of Connecticut School of Medicine, Connecticut Children’s Medical Center, Connecticut 4 Division of Hematology-Oncology, Department of Pediatrics, University of Connecticut School of Medicine, Connecticut Children’s Medical Center, Connecticut
Elizabeth A. Brownell, MA, PhD3
Kerry Moss, MD4
Address for correspondence DonnaMaria E. Cortezzo, MD, Division of Pain and Palliative Medicine, Department of Anesthesia, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229 (e-mail: [email protected]).
Abstract
Keywords
► end-of-life experiences ► end-of-life care ► neonate
Objective The aim of the study is to determine the perceptions of end-of-life care practices and experience with infants who have died in the NICU among neonatologists, advanced practitioners, nurses, and parents, and also to determine perceived areas for improvement and the perceived value of a palliative care team. Study Design This descriptive, exploratory cross-sectional study using surveys consisting of 7-point Likert scales and free response comments was sent to all neonatologists (n ¼ 14), advanced practitioners (n ¼ 40), and nurses (n ¼ 184) at Connecticut Children’s Medical Center’s neonatal intensive care units (NICUs) in April 2013 and to all parents whose infants died in these NICUs from July 1, 2011, to December 31, 2012 (n ¼ 28). Results The response rates were 64.3% for physicians; 50.0% for practitioners; 40.8% for nurses; and 30.4% for parents. Most providers reported they feel comfortable delivering end-of-life care. Bereavement support, debriefing/closure conferences, and education did not occur routinely. Families stressed the importance of memory making and bereavement/follow-up. Consistent themes of free responses include modalities for improving end-of-life care, inconsistency of care delivery among providers, and the importance of memory making and follow-up. Conclusion End-of-life experiences in the NICU were perceived as variable and end-oflife practices were, at times, perceived as inconsistent among providers. There are areas for improvement, and participants reported that a formalized palliative care team could help. Families desire memory making, follow-up, and bereavement support.
Each year in the United States, over 1 million pregnancies end in fetal death and 19,000 newborns die in the neonatal period.1–4 As a result, most neonatal intensive care unit (NICU) care providers will face the death of an infant. Some infants die unexpectedly; however, many deaths are antici-
pated and can be preceded by the support of palliative and end-of-life care.5 Healthcare providers typically find initiating this to be challenging.6–8 Given the complexity of end-oflife care, improved consistency and standardization may benefit infants, parents, and healthcare providers.9 This is
received March 8, 2014 accepted after revision September 8, 2014 published online December 17, 2014
Copyright © 2015 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA. Tel: +1(212) 584-4662.
DOI http://dx.doi.org/ 10.1055/s-0034-1395475. ISSN 0735-1631.
Downloaded by: University of British Columbia. Copyrighted material.
Am J Perinatol 2015;32:713–724.
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
important because when quality end-of-life care is provided, families feel supported and have an enhanced understanding of the process.10–12 When it is not provided, families may feel helpless, angry, and as though their child had little value to others.10–12 The demonstrated positive effect of palliative care teams on end-of-life care has led to their inclusion in many NICUs. Such teams aid communications, emphasize quality of life and symptom alleviation, and assist parents in decision making.13,14 Palliative care consultations lead to fewer resuscitation attempts and life-sustaining treatments that merely prolong the dying process, fewer invasive procedures, and greater parental support.15,16 Despite these advantages, NICU providers and parents may have different perceptions regarding the conversations that are appropriate or helpful surrounding ethical and end-of-life decisions.17 These differences can leave parents with questions, concerns, regret, or ill-feelings.16,17 Recent studies have examined parents’ views around end-of-life experiences for children and infants. However, data specific to NICU setting are limited.18–26 Furthermore, no study to date has described multiple stakeholders’ perspectives of end-of-life experiences in this setting. To address this need, we performed an exploratory pilot study to determine perceptions of end-of-life care practices and experiences among neonatologists, advanced practitioners, nurses, and parents at a single-center level III and IV NICU without a formal palliative care team. The goal was to ascertain, compare, and contrast perceptions of end-oflife practices of the healthcare team, parental and healthcare team’s experiences around end-of-life care, areas for improvement, and a perceived role for a palliative care team.
Methods
Subjects Every neonatologist, advanced practitioner, and nurse who worked at CCMC’s NICUs in April 2013 was eligible for the study. Providers were asked to respond based on experiences of the previous year to increase the accuracy of memory recall. The survey was voluntary and informed consent, as explained in an e-mail, was implied by survey completion. There was no control or comparison group. Parent surveys were sent to each family whose baby died in either the CCMC Hartford or Farmington NICU between July 1, 2011, and December 31, 2012. Bereaving parents who lost their babies 0 to 4 months prior to the start date were excluded to avoid interfering with their immediate grieving process. The mailing addresses of the parents were identified through clinical databases. Since the survey was voluntary, informed consent, as described in the cover letter, was implied by survey completion.
Data Collection E-mail invitations and survey links were sent to 14 neonatologists, 40 advanced practitioners, and 184 nurses. Reminders were e-mailed every 2 weeks for the 8-week survey duration. SurveyMonkey’s internal software organized responses. Data were de-identified and exported for analysis. Simultaneously, 28 surveys were mailed to families, with no reminders sent. Parents could complete the survey on paper or via telephone. The results were organized in Microsoft Excel, de-identified, and exported for analysis. For all surveys, free response comments and phone conversation scripts were de-identified, exported, and reviewed.
Data Analyses
This was a web-based SurveyMonkey survey of NICU care providers and parents. Surveys were piloted through an iterative process in a select group of neonatologists, advanced practitioners, nurses, and parents. No sample-size calculation was performed as this was an exploratory, descriptive study. The Connecticut Children’s Medical Center’s (CCMC) Institutional Review Board determined the project was exempt from Institutional Review Board oversight.
Survey Design The survey for neonatologists and advanced practitioners consisted of five sections. The first section had demographic and practice characteristic information, and the final section included free response comments. The remaining sections consisted of statements categorized into three parts: personal beliefs/opinions regarding end-of-life care in the NICU, participants’ current end-of-life care practices, and the healthcare team end-of-life care practices. Responses were scored on a seven-point Likert scale. In addition to these sections, the survey for nurses included a section on neonatologists’ endof-life care practices. Parent surveys consisted of three sections: demographic information, a 7-point Likert scale of American Journal of Perinatology
parental experiences in the NICU around the time of his/ her baby’s death, and free response questions regarding experiences around the baby’s death.
Vol. 32
No. 8/2015
Descriptive analyses were performed using SPSS version 11.5.0 (SPSS Inc., Chicago, IL). Response percentages were reported. Likert responses were considered ordinal variables and were described using mode and interquartile range (IQR). For reporting purposes, “agree” meant very strongly agree to agree (1–3) and “disagree” meant disagree to very strongly disagree (5–7). Free response and phone comments were grouped by common themes.
Results Nine neonatologists (64.3%), 20 advanced practitioners (50.0%), and 75 neonatal nurses (40.8%) responded. The majority indicated personal exposure to be between 1 and 5 NICU deaths in the past year. The range of years of NICU experience was from < 5 to > 30 years (►Table 1). Of the 23 surveys delivered to parents, 7 independent families (30.4%) responded. Five were returned with addresses undeliverable. The majority of parents (71.4%, n ¼ 5) were aged 31 to 35 years when their baby was born and identified themselves as white (85.7%, n ¼ 6). The babies were aged between < 48 hours and > 14 days when they died. See ►Table 1 for details.
Downloaded by: University of British Columbia. Copyrighted material.
714
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
715
Table 1 Characteristics of participants Neonatologist
Practitioner
Nurse
Parent
N
%
N
%
N
%
< 30
–
–
3
15.0
12
16.0
30–40
1
11.1
7
35.0
24
32.0
41–50
4
44.4
6
30.0
19
25.3
51–60
2
22.2
4
20.0
17
22.7
61–70
2
22.2
–
–
2
2.7
30
2
22.2
2
10.0
9
12.0
–
2
10.0
17
22.7
NICU deaths experienced in the past year 0
–
1–5
7
77.8
14
70.0
54
72.0
6–10
2
22.2
4
20.0
2
2.7
Unsure
–
–
–
–
2
2.7
CCMC NICU in Hartford
4
44.4
10
50.0
52
69.3
CCMC NICU in Farmington
1
11.1
10
50.0
23
30.7
Both
4
44.4
–
–
–
–
Male
6
66.7
2
10.0
1
1.3
1
14.3
Female
3
33.3
18
90.0
74
98.7
6
85.7
White, non-Hispanic
8
88.9
20
100.0
71
94.7
6
85.7
Hispanic
–
–
–
–
2
2.7
–
–
Site of practice
Gender
Ethnicity
Black, non-Hispanic
–
–
–
–
2
2.7
–
–
Asian
1
11.1
–
–
–
–
1
14.3
18–25
1
14.3
31–35
5
71.4
36–40
1
14.3
Age (parents)
Age of your baby when he or she died < 48 hours
2
28.6
2–6 days
3
42.9
7–14 days
1
14.3
> 14 days
1
14.3
1
14.3
How many months ago your baby died 7 months ago
(Continued)
American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
Years of experience in the NICU
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
Table 1 (Continued) Neonatologist
Practitioner
Nurse
N
N
N
Parent N
%
9 months ago
2
28.6
15 months ago
2
28.6
21 months ago
2
28.6
CCMC NICU in Hartford
3
42.9
CCMC NICU in Farmington
4
57.1
%
%
%
Hospital where your baby died
Abbreviations: CCMC, Connecticut Children’s Medical Center; NICU, neonatal intensive care unit.
Among disciplines surveyed, there were variable perceptions of whether they received end-of-life care education, adequate care from NICU team, and the required palliative care consults. Mostly nurses reported they received education (77.3%, n ¼ 58). All neonatologists (100%, n ¼ 9), most advanced practitioners (75.0%, n ¼ 15), and most nurses (76.0%, n ¼ 57) reported feeling comfortable dealing with issues surrounding end-of-life care. Approximately threefourths of neonatologists (77.8%, n ¼ 7) and over half of advanced practitioners (65.0%, n ¼ 13) and nurses (62.7%, n ¼ 47) agreed the healthcare team provided consistent endof-life care. All neonatologists (100%, n ¼ 9) and most advanced practitioners (85.0%, n ¼ 17) and nurses (82.7%, n ¼ 62) agreed the team provided quality end-of-life care. All neonatologists (100%, n ¼ 9) and advanced practitioners (100%, n ¼ 20), and most nurses (90.7%, n ¼ 68) reported that families and the medical team would benefit from a formal palliative care team. There was variability among parental responses regarding potential for improvement of experiences with implementation of a formal palliative care team. See ►Tables 2 and 3 for modes and IQRs. Most neonatologists, advanced practitioners, and nurses reported the healthcare team communicated with families about care goals (100%, n ¼ 9; 85.0%, n ¼ 17; 81.3%, n ¼ 61) and elicited and respected family preferences (100%, n ¼ 9; 75.0%, n ¼ 15; 81.3%, n ¼ 61). Nearly all nurses reported they believe that they made sure families understood their baby was dying (90.7%, n ¼ 68), encouraged families to hold their baby (94.7%, n ¼ 71), and encouraged memory making (93.3%, n ¼ 70). All neonatologists and advanced practitioners described that they engaged in these three activities (exception: 90.0%, 18 advanced practitioners stated they encouraged memory making). The majority of parents reported they knew their baby was dying, had a part in making decisions about their baby’s care, and the healthcare team prepared them (for all responses, 71.4%, n ¼ 5). All parents stated they were encouraged to hold their baby and most (85.7%, n ¼ 6) stated they were encouraged to build memories. Nearly all recounted that their baby was treated with respect and that they were satisfied with their baby’s care. See ►Tables 2 and 3 for modes and IQRs. All neonatologists and advanced practitioners and nearly all nurses (88.0%, n ¼ 66) stated they ensured the baby was American Journal of Perinatology
Vol. 32
No. 8/2015
comfortable. The majority recounted that they managed symptoms and provisions of comfort care (100%, n ¼ 9; 85.0%, n ¼ 17; 85.3%, n ¼ 64). At the same time, just over half of parents reported their baby was comfortable (57.1%, n ¼ 4). All neonatologists, most advanced practitioners (80.0%, n ¼ 16), some nurses (45.3%, n ¼ 34), and few parents (14.3%, n ¼ 1) reported room for improvement in ensuring a baby’s comfort during the dying process. See ►Tables 2 and 3 for modes and IQRs. Nearly all advanced practitioners (90.0%, n ¼ 18) and some neonatologists (55.5%, n ¼ 5) and nurses (60.0%, n ¼ 45) responded the healthcare team provided emotional support for staff. There was variability among neonatologists and advanced practitioners in reporting that they spoke with families about grief, sent a message of condolence to families, participated in a closure conference with families, or participated in debriefing for staff. Most nurses reported they spoke to families about grief (81.3%, n ¼ 61). Over half reported they sent a message of condolence to families (57.3%, n ¼ 43), provided emotional support to staff (69.3%, n ¼ 52), or participated in staff debriefings (50.7%, n ¼ 38). Just over half of the parents recounted that the healthcare team made sure their wishes were met (57.1%, n ¼ 4) and did not feel abandoned by staff (57.1%, n ¼ 4). Nearly threefourths stated they received adequate emotional support from staff (71.4%, n ¼ 5), and most stated they received information about bereavement services (for all 85.7%, n ¼ 6). While many reported that they received follow-up from the healthcare team after their baby died (71.4%, n ¼ 5), about half reported they wanted more contact (42.9%, n ¼ 3). See ►Tables 2 and 3 for modes and IQRs.
Free Response Comments Fifty-five percent of neonatologists left comments. Themes included the need for a formal palliative care team, disparate end-of-life practices, lack of private spaces for families, and lack of support for staff. Comments included: There is far too little attention paid to the emotional needs of staff…It’s not my primary focus because I’m too busy caring for the baby and family. I think a formalized debriefing process by someone who is not a day to day caregiver could be very helpful. It is difficult to BE the doctor and to
Downloaded by: University of British Columbia. Copyrighted material.
716
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
717
Table 2 Summary of healthcare team responses Statementa
Neonatologistb
Practitionerc
Nursed
Modee
IQRf
Modee
IQRf
Modee
IQRf
I have received education in end-of-life care
3, 5
3–5
3
3–5
3
3–3
More could be done to ensure babies’ comfort during the dying process
3
3–3
3
2–3
3
3–5
I feel comfortable dealing with issues surrounding end-of-life care
3
2–3
2
2–3.75
3
2–3
I feel comfortable leading end-of-life discussions with families
3
2–3
2, 5
2–5
I feel comfortable discussing the death of a baby with the family
3
2–3
3
2–3.75
3
3–4
Families would benefit from the presence of a palliative care team
1, 2
1–2
1
1–2
1
1–3
The healthcare team would benefit from a palliative care team
1
1–2
1
1–2
1
1–3
2
1.5–2
2
1–2
3
1.75–3
Your beliefs about your current end-of-life care practices I ensure the family understands the baby’s condition and prognosis I prepare the family for the dying process
2
2–3
3
2–4
3
2–3
I ensure there is privacy for meetings regarding redirection of care
2
2–3
2
2–3
3
1–3
I document discussions with the family about the goals of care
3
2–3
2
2–3
3
2–3
I encourage families to hold the baby before and during the dying process
2
1–2.5
2
1–2
1
1–2
I ensure the family has adequate time with the baby before/after care is redirected
2
1.5–2
2
1–2
1
1–3
I ensure rituals important to the family and memory making occur
1, 2
1–3
1, 2
1–3
1
1–2
I ensure the family’s preferences are respected
–
–
–
–
1
1–2
I ensure the babies are comfortable when they die
2
2–3
1, 2
1–2
1
1–2
I address staff concerns of a baby’s comfort during the dying process
2
2–3
2
1–2
–
–
I control pain well in dying babies
3
2–3
2
1–3
–
–
I minimize unnecessary tests and procedures after care is redirected
2
1.5–2
2
1–2
–
–
I minimize noxious stimuli after care is redirected
3
2–3
2
1.25–3
1
1–3
I talk to families about grief and bereavement issues
4
2–4
3, 4
2.25–4
3
1.5–3
I send a message of condolence to the families of babies who have died
5
2.5–5
4, 5
4–5
3
2–4
I participate in closure/grief conferences with families after death of a baby
2, 5
2–5
5
3–5
5
3–5
I provide emotional support for staff members caring for dying babies
3
3–3.5
3
2.25–3
2
2–4
I debrief with other staff members who cared for a deceased baby
3
2.5–3.5
3
2–4
3
2.75–4
3
2.5–3.5
3
3–4.75
3
2–4
The healthcare team at your institution Provides consistent end-of-life care
(Continued)
American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
Your opinions
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
Table 2 (Continued) Statementa
Neonatologistb
Practitionerc
Nursed
Modee
IQRf
Modee
IQRf
Modee
IQRf
Provides quality end-of-life care
3
2.5–3
3
2.25–3
3
2–3
Communicates with the team to clarify goals of care
3
2.5–3
3
3–3.75
3
2–3
Communicates with patients and families about goals of care and treatment
3
2–3
3
3–3
3
2–3
Elicits & respects family’s preferences regarding goals of care & treatment
2
2–3
3
2.25–3.75
3
2–3
Communicates with colleagues about the patient’s/family’s emotional needs
3
2–3
3
3–3
3
2–3
Manages symptoms and provision of comfort care
2
2–3
3
2–3
3
2–3
Attends to the emotional & practical needs of dying babies & their families
3
1.5–3
3
2.25–3
3
2–3
Assesses the spiritual/religious needs of the baby and family
2
2–2.5
3
2–3
3
2–3
Provides emotional support for staff caring for dying babies
2
2–4
3
2.25–3
3
3–4
Provides education about palliative care
3, 4, 5
3–5
3
3–5
5
3–5
Communicate end-of-life issues and options to families in a sensitive way
–
–
–
–
3
2–3
Involve parents in end-of-life decisions
–
–
–
–
3
2–3
Ensure family has adequate time with their baby before/after care is redirected
–
–
–
–
3
2–3
Ensure rituals important to the family and memory making occur
–
–
–
–
3
2–3
The neonatologists at your institution
Ensure the babies are comfortable when they die
–
–
–
–
3
2–3
Control pain well in dying babies
–
–
–
–
3
2–3
Minimize unnecessary tests and procedures after care is redirected
–
–
–
–
3
2–3.5
Talk to families about grief and bereavement issues
–
–
–
–
3
3–4
Participate in closure/grief conferences with families after the death of a baby
–
–
–
–
4
3–4
Provide emotional support for staff members caring for dying patients
–
–
–
–
4
3–5
Debrief with other staff members who cared for a deceased baby
–
–
–
–
3
3–5
Abbreviations: IQR, interquartile range. Note:aThe statements listed are the actual statements given in the survey. b Refers to the survey of neonatologists. c Refers to the survey of advanced practitioners. d Refers to the survey of nurses. e The mode response for that statement on the Likert scale: 1, very strongly agree; 2, strongly agree; 3, agree; 4, neither agree nor disagree; 5, disagree; 6, strongly disagree; 7, very strongly disagree. f The IQR for the mode; – means not asked.
American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
718
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
719
Table 3 Parents’ summary of responses Statementa
Modeb
IQRc
The doctors made sure I understood my baby’s illness
1
1–3
The nurses made sure I understood my baby’s illness
1,3
1–4
I received confusing/contradictory information about my baby’s illness/treatment options
5,7
4–7
I knew my baby was dying
1,2
1–4
The healthcare team prepared me for what to expect
1,3
1–5
I took part in the decisions made about my baby’s care
1
1–4
The healthcare team made sure my wishes were met
1
1–4
I felt abandoned by the hospital staff
6,7
3–7
I received adequate emotional support from the hospital staff
1,2
1–4
I was offered spiritual support/rituals
3
1–3
I was encouraged to participate in my baby’s care
1,3
1–4
I was encouraged to hold my baby
1,2
1–2
I was encouraged to build memories
1,2
1–2
I had enough time to spend with my baby before and after he/she passed away
2,4
1–4
I had a private place to spend time with my baby
1
1–4
My baby was comfortable leading up to his/her death
4
1–4
There is more the team could have done to make my baby more comfortable
5,7
4–7
The physicians helped me through the process of my baby’s death
1,2,3
1–3
The nurses helped me through the process of my baby’s death
1,2,4
1–4
My baby was treated with respect by all members of the care team
1
1–3
I received information coping with my loss (bereavement)
2
2–3
I was satisfied with the care my baby received around the time he/she passed away
1
1–3
The healthcare team followed up with me after my baby passed away
2
2–5
I wanted follow-up with the healthcare team after my baby passed away
4,5
2–5
A team specializing in caring for patients through the dying process would have been helpful or improved my experience
4
2–5
Abbreviations: IQR, interquartile range; NICU, neonatal intensive care unit. Note: a The statements listed are the actual statements given in the survey. b The mode response for that statement on the Likert scale: 1, very strongly agree; 2, strongly agree; 3, agree; 4, neither agree nor disagree; 5, disagree; 6, strongly disagree; 7, very strongly disagree. c The IQR for the mode.
debrief concurrently. I also think there is tremendous variability among the team around capabilities to provide palliative care.
We do a VERY POOR job of preparing families for these issues, as evidenced by the number of readmits.
See ►Table 4 for additional comments. Thirty-five percent of advanced practitioners left comments. Themes included areas to improve when providing end-of-life care, the need for outpatient palliative care services, and gaps between different providers. The comments included the following:
See ►Table 4 for additional comments. Approximately one-fourth (22.7%) of nurses left comments. Themes included areas to improve when providing end-of-life care, the need for a formal palliative care team, uneven end-of-life practices, lack of effective communications with families, and lack of staff support. Comments included:
I have seen several instances where the wishes of the family were overlooked because of what we “usually” do or what would be easier for staff or MDs. More attention needs to be paid for kids we send home for palliative care.
Please give us some education and perhaps a team that is dedicated to these experiences. Some have been good and some not so good experiences. I would like more teamwork and communication between attendings and staff. American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
Your experience in the NICU when your baby passed away
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
Table 4 Additional healthcare team comments Additional comments left by the healthcare team Additional comments left by neonatologists “I try to make the environment as peaceful as possible. Often the rooms/pods in the NICU are noisy and busy. I’ve been told by staff that I can’t silence monitors, pumps or ventilators…I wish we had more private rooms, nicer spaces that are less institutional for families to spend time with dying babies or to have end-of-life discussions.” “As technology advances and more borderline children survive, a formal palliative care program is an absolute necessity for the NICU!” “Peer family opportunities, autopsy and burial options need to be explored.” Additional comments left by advanced practitioners “I think that there could be more improvements. This includes more use of chaplain services, better communication (including both between staff as well as families), more education, pain management, individualized palliative care, and support to staff after a death.” “There is always a gap between the nursing staff and the medical team. Nursing attends to the emotional and comfort care of the infant and family MUCH better than medicine does.” Additional comments left by nurses “I believe that our physicians are not able to speak to parents in a way that enables them to truly understand just how compromised their infant will likely be… A palliative team might include a person who could spend time with parents finding out exactly what they understand and help to know what to do for themselves and their baby.” “Often there is no debriefing for staff. Meetings with the family after a death do not take place…Attendings have different comfort levels with redirection of care to palliative care models, and do not offer this to families until they have ’given up’ or exhausted all means for survival. I have not seen a birth plan for a known genetic syndrome baby that includes end of life care.” “Many times I don’t feel that the doctors clearly explain if a baby has an extremely poor prognosis…then the family has false hope and wants many unnecessary interventions done for their baby that are painful and not appropriate.” “More education and resources for consistency in our practice would be good.” “I feel we do a good job with families but there is so much more room for improvement... Also we need support for staff after taking care of a patient and family with a loss.” Abbreviations: NICU, neonatal intensive care unit.
I don’t think end of life care is offered enough to families as an option. See ►Table 4 for additional comments. All parents chose to leave comments. Themes included the importance of memory making, the need for bereavement services, and appreciation for all the support. Comments included:
bereavement support…It would have been nice for me to have some support in those first few weeks…You know my husband had gone back to work and I was home by myself and most of the time I just sat on the floor petting my dog and crying for much of the day. I mean literally sitting on the floor crying...Had they offered me a list of resources it probably would have been easier. See ►Table 5 for more comments.
I wish someone could have told us if our son was or was not suffering so if he was not we could have spent more time with him alive. I wish someone could have helped us bath and diaper and feed and dress him…before we stopped life support. I wish someone had told us what to expect from a dying baby. I was so terrified. See ►Table 5 for additional comments. In addition, 42.9% (n ¼ 3) of parents requested a follow-up call. These parents stated in phone conversations they had positive experiences but realized their experiences were unique. They stressed the importance of memory making, follow-up, and bereavement support. Excerpts included the following: Looking back the thing that I could have used the most after losing [our son] would have been more follow-up American Journal of Perinatology
Vol. 32
No. 8/2015
Discussion Despite a recent increased focus on palliative care in NICUs, few studies have examined the perspectives of interdisciplinary caregivers regarding neonatal end-of-life care in the NICU setting.18–26 This unique pilot study reports and compares the experiences of neonatologists, advanced practitioners, nurses, and parents at a single-center level III and level IV NICU without a formal palliative care team. While the parent and healthcare team surveys represent two slightly different time periods, the low turnover rates for neonatologists, advanced practitioners, and nurses and the absence of significant changes in practice may indicate that care was consistent. This study may indicate that palliative care team would be helpful, the healthcare teams desire more consistency in end-of-life practices, families prefer more memory making
Downloaded by: University of British Columbia. Copyrighted material.
720
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
721
Table 5 Additional parent comments Additional comments left by parents Free response comments “I was so distraught and having never had a baby before unaware of what I should have as a mother longed to do with my son before we took him off life support. Someone should have told us ok to cuddle him and bathe him and dress him and diaper him and give him ’taste’ of breast milk. We were so worried he might be suffering we wanted to stop life support ASAP, looking back I wish we held him more etc.” “While our son was delivered and there was hope support was great. Once the decision that life support had to be removed and after his death shockingly almost no follow up or emotional/bereavement support for us.” “The staff was wonderful-above and beyond what most parents and babies get. We were very fortunate.” “Being told/led to spend time to in Caroline’s room with my son-sleeping with him-bathing him and dressing him was so helpful. Parents are in such shock that they need someone to tell them what to do-provide options.” Follow-up phone call comments
“It was such a heart wrenching decision that you have to take your son off of life support…And once we had that information from the doctors to make that decision for us it was no wasting time…the main thing is we didn’t want him to suffer…Had I had experience with a baby before, had he not been our first, I may have wanted to keep him on life support a little while longer to have done a few more things with him…Had we been reassured that he wasn’t suffering, had someone pushed us more to spend more time with him then maybe we would have.” “It is so nice to get the bereavement letters that also recognizes [our son’s] life and our loss. It’s hard because I am still at the same time getting notices of stuff to buy for a nine month old child and I’m still on all of these mailing lists. So in a way it’s weirdly nice to see someone say we recognize that it is still an ongoing loss for you.” “I think that’s wonderful that you are researching this because it can so easily get lost in the shuffle. Particularly amongst… doctors who weren’t trained in it. There are still doctors that they don’t talk about death. They think…it would be better if you just don’t go there and deal with it but it’s just not. And it’s hard to realize not doing more interventions isn’t always the best option. They have to put aside their own feelings and ways of processing to be there with the family and they do so by not dealing with it and unfortunately it is the family that suffers.”
and bereavement follow-up, and that parents and the healthcare team may differ in the report of a baby’s comfort during the dying process. While most parents surveyed recounted that they were satisfied with the end-of-life care their baby received, some reported feelings of abandonment and a lack of support or bereavement service after their baby died. This was most evident in the free response comments. These results suggest that parents did not always feel prepared for or supported through the end-of-life transition and bereavement process. The end-of-life process goes well beyond the death and continues through bereavement. It is pertinent that physicians who provide end-of-life care appreciate that the end-oflife process involves the family and transcends beyond the death of their patient. A palliative care team might be able to provide more consistent outcomes by assisting the healthcare team and family through the end-of-life process, offering the necessary support, and providing resources throughout bereavement. Parental responses about the potential benefit of a formal palliative care team were variable in this study. This is in contrast to other studies in which parents suggest that a healthcare professional trained in end-of-life care who explained the timeline and process of dying would be helpful and could actually empower them in their caregiv-
ing.16,27–29 This difference may simply be due to the limited study population size. Also, every end-of-life experience is unique and every family has different views, previous experiences, values, and cultures that make their needs and desires for outside help and guidance during this personal time variable. Family interactions with the healthcare team through this process may also influence their perception of the potential benefits of a palliative care team. For example, if they interacted positively with the healthcare team and the team addressed all their needs through the end-of-life process, families may not feel the need to bring in another team during this difficult and personal time. Most parents in our study were highly educated and understood their babies’ illness and disease trajectory. They were very involved in the care of their baby, advocated for their baby and themselves, and worked closely with the healthcare team. As in our study, recent articles of parental experiences cited nurses as the caregivers providing the most emotional support through this process.12,30–32 This support often comes in the form of memory making and bereavement support. The parents in our study stressed importance of these areas of palliative care. It is also plausible that without the presence of a palliative care team it is difficult to appreciate how such expertise could be beneficial and help in these key areas. American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
“The part that really sticks out is our last moments with her and really the last day. I would encourage families to allow [memory making] because you can’t go back…There are families who weren’t encouraged by the medical staff…to take pictures or they didn’t think about it…that is a really important part of something you can hold on to.”
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
In contrast, while the majority of neonatologists, advanced practitioners, and nurses in this study reported they were confident in the quality of palliative care given, they universally indicated that the medical team and families would benefit from the presence of a palliative care team. This is consistent with earlier studies demonstrating that formal palliative care teams or protocols enhance the use of bereavement services and improve the experience of patients and their families.15,16,27,33–37 In this study, members of the healthcare team identified areas for improvement including: education in palliative care and end-of-life care, consistency among providers, early communication with families, bereavement support for families and staff, and debriefing/ closure meetings for staff and families. These are key areas in which a palliative care team could help the patient, family, and healthcare team. This study also highlighted the impressive need for support for the staff. Neonatologists may find it difficult to attend to the needs of both the staff who experience their own bereavement/grief and the family. Providing care and debriefing concurrently appear difficult for the staff. The presence of a trained palliative care team could conceivably bridge the gap between care provisions and staff support. This is supported by earlier studies that show education and care by individuals experienced in palliative care may positively affect staff comfort level in supporting and aiding families and staff with these experiences.10,38,39 While over one-third of parents recounted they did not perceive their baby to be comfortable during the dying process, the vast majority of healthcare team members reported they ensured babies were comfortable during this time. While some parents realized their baby was uncomfortable, most did not appreciate that more could be done to ensure comfort. These findings extend previous research demonstrating a gap in parental and care team perceptions of comfort in pediatric palliative care patients.19,21,40 The potential differences in parental and care team perceptions of pain and comfort during end-of-life care in the NICU merit further exploration. Perhaps further healthcare team education around identification and treatment of pain and symptoms during end-of-life care and an increase in parental understanding of treatment options would result in more communication to ensure the baby’s symptoms are well managed. Limitations of this descriptive study include the accuracy of self-reporting and concerns regarding generalizability of the data, especially for parents. While the survey was pilot tested, it was not validated. Most responding parents selfidentified as white non-Hispanic; however, less than 50% of parents eligible for inclusion in the study identified as white. Thus, our findings may not generalize well to non-white or Hispanic families. The influence of cultural backgrounds on parents’ perceptions of end-of-life care and the benefits of palliative care in the NICU setting warrants further investigation. The response rate and small sample size may also limit generalizability. Those who chose to respond may have had a special interest or strong beliefs regarding this subject or their experiences, which may have differed from those of nonresponders. In addition, as care team members reported American Journal of Perinatology
Vol. 32
No. 8/2015
personal exposure to a comparatively low number of patient deaths in the previous year, their experiences and views may not generalize to those exposed to a higher number of deaths. A higher percentage of neonatologists and practitioners responded relative to nurses. This may be due to time constraints, lack of computer access, or relative lack of familiarity with web-based surveys. Variability between healthcare team and parent responses may reflect the lack of congruity between the hospital site of infant death and the practice site of healthcare provider participants. However, the consistency of advanced practitioner responses across the two sites suggests that the end-of-life care practices in the two units are similar. This study suggests several specific areas where the implementation of a palliative care team might improve end-oflife care in the NICU. These areas include improved consistency among providers in end-of-life care practices, symptom/pain management, early and clear communication with the family about prognosis, bereavement support, and staff debriefing. Further research is needed to evaluate the impact of implementation of a palliative care team upon end-of-life care practices in the NICU setting. We plan to validate the survey and conduct a multicenter study. Further areas of research suggested by our study include the differences in parental and healthcare team perceptions of pain and comfort during end-of-life care and the influence of cultural backgrounds on parents’ perceptions of end-of-life care and the benefits of palliative care.
Conclusion This single-center pilot study reports clinically important disparities between the perceptions and experiences of providers and parents during end-of-life care in a level III and IV NICU. Despite providers’ confidence in their skills, other staff and parents of babies who died reported variability, inconsistency, lack of support, and failure to appreciate infant discomfort during end-of-life care. This study underscores a need to decrease variability in key areas of end-of-life care, such as delivery of information and provisions of pain control, improved bereavement services, development of closure conferences for staff and parents, and the development and integration of palliative care teams in NICU settings. Further research is needed regarding the specific effects of implementing a formal palliative care team upon end-of-life care of the neonate.
Clinical Perspective • Delivery of end-of-life care in the NICU is variable. • NICU staff and families could benefit from formal palliative care teams. • Families in the NICU desire more memory making, bereavement services, and follow-up. • Staff in the NICU desire more consistency in the end-of-life care provided, more end-of-life symptom management, bereavement support, and debriefing.
Downloaded by: University of British Columbia. Copyrighted material.
722
NICU End-of-Life Care: Staff and Parent Experiences
Financial Disclosure The authors have no financial relationships relevant to this article to disclose.
19 Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family per-
20
21
Funding Source No funding was secured for this study.
References
22
23
1 MacDorman MF, Kirmeyer S. Fetal and perinatal mortality, United
States, 2005. Natl Vital Stat Rep 2009;57(8):1–19
24
2 Heron M, Hoyert DL, Murphy SL, Xu J, Kochanek KD, Tejada-Vera B.
Deaths: final data for 2006. Natl Vital Stat Rep 2009;57(14):1–134 3 Hoyert DL, Arias E, Smith BL, Murphy SL, Kochanek KD. Deaths: 4 5
6
7 8
9
10
11
12
13
14
15
16
17
18
final data for 1999. Natl Vital Stat Rep 2001;49(8):1–113 Hoyert DL, Heron MP, Murphy SL, Kung HC. Deaths: final data for 2003. Natl Vital Stat Rep 2006;54(13):1–120 Carter BS, Hubble C, Weise KL. Palliative medicine in neonatal and pediatric intensive care. Child Adolesc Psychiatr Clin N Am 2006; 15(3):759–777 Carter B, Levetown M. Palliative Care for the Infants, Children, and Adolescents: A Practical Handbook. Baltimore, MD: John’s Hopkins University Press; 2011 Kain VJ. Palliative care delivery in the NICU: what barriers do neonatal nurses face? Neonatal Netw 2006;25(6):387–392 Cortezzo DE, Sanders MR, Brownell E, Moss K. Neonatologists’ perspectives of palliative and end-of-life care in neonatal intensive care units. J Perinatol 2013;33(9):731–735 Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatr 2012;12:25 Armentrout D, Cates LA. Informing parents about the actual or impending death of their infant in a newborn intensive care unit. J Perinat Neonatal Nurs 2011;25(3):261–267 Henley A, Schott J. The death of a baby before, during or shortly after birth: good practice from the parents’ perspective. Semin Fetal Neonatal Med 2008;13(5):325–328 Gold KJ. Navigating care after a baby dies: a systematic review of parent experiences with health providers. J Perinatol 2007;27(4): 230–237 Gale G, Brooks A. Implementing a palliative care program in a newborn intensive care unit. Adv Neonatal Care 2006;6(1): 37–53 Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonatal Nurs 2006;20(1):113–116 Pierucci RL, Kirby RS, Leuthner SR. End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service. Pediatrics 2001;108(3):653–660 Eden LM, Callister LC. Parent involvement in end-of-life care and decision making in the newborn intensive care unit: an integrative review. J Perinat Educ 2010;19(1):29–39 Ward FR. Parents and professionals in the NICU: communication within the context of ethical decision making—an integrative review. Neonatal Netw 2005;24(3):25–33 Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents’ perspective. J Perinatol 2007;27(8):510–516
723
25
26 27 28
29
30
31 32
33
34 35 36
37
38
39
40
spectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 2002;156(1):14–19 Heller KS, Solomon MZ. Initiative for Pediatric Palliative Care (IPPC) Investigator Team. Continuity of care and caring: what matters to parents of children with life-threatening conditions. J Pediatr Nurs 2005;20(5):335–346 Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics 2006;117(3):649–657 Seecharan GA, Andresen EM, Norris K, Toce SS. Parents’ assessment of quality of care and grief following a child’s death. Arch Pediatr Adolesc Med 2004;158(6):515–520 Davies B, Connaughty S. Pediatric end-of-life care: lessons learned from parents. J Nurs Adm 2002;32(1):5–6 Midson R, Carter B. Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents’ experiences. J Child Health Care 2010;14(1):52–66 Williams C, Cairnie J, Fines V, et al; With Care team. Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit. Pediatrics 2009;123(1):e87–e95 Widger K, Picot C. Parents’ perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs 2008;34(1):53–58 Rini A, Loriz L. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs 2007;22(4):272–282 Field M, Behrman R. When Children Die Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: National Academies Press; 2003 Lundqvist A, Nilstun T, Dykes AK. Both empowered and powerless: mothers’ experiences of professional care when their newborn dies. Birth 2002;29(3):192–199 Kavanaugh K, Moro TT, Savage TA. How nurses assist parents regarding life support decisions for extremely premature infants. J Obstet Gynecol Neonatal Nurs 2010;39(2):147–158 McHaffie HE, Lyon AJ, Hume R. Deciding on treatment limitation for neonates: the parents’ perspective. Eur J Pediatr 2001;160(6):339–344 Kowalski WJ, Leef KH, Mackley A, Spear ML, Paul DA. Communicating with parents of premature infants: who is the informant? J Perinatol 2006;26(1):44–48 Carter BS, Guthrie SO. Utility of morbidity and mortality conference in end-of-life education in the neonatal intensive care unit. J Palliat Med 2007;10(2):375–380 Leuthner SR. Fetal palliative care. Clin Perinatol 2004;31(3):649–665 Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol 2002;22(3):184–195 Kaempf JW, Tomlinson MW, Campbell B, Ferguson L, Stewart VT. Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes. Pediatrics 2009;123(6):1509–1515 Moro T, Kavanaugh K, Okuno-Jones S, Vankleef JA. Neonatal endof-life care: a review of the research literature. J Perinat Neonatal Nurs 2006;20(3):262–273 Engler AJ, Cusson RM, Brockett RT, et al. Neonatal staff and advanced practice nurses’ perceptions of bereavement/end-oflife care of families of critically ill and/or dying infants. Am J Crit Care 2004;13(6):489–498 Cavaliere TA, Daly B, Dowling D, Montgomery K. Moral distress in neonatal intensive care unit RNs. Adv Neonatal Care 2010;10(3): 145–156 Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 2004;114(5):1248–1252
American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
Conflict of Interest The authors have no conflicts of interest to disclose.
Cortezzo et al.
713
End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents DonnaMaria E. Cortezzo, MD1
Marilyn R. Sanders, MD2
1 Department of Anesthesia, Division of Pain and Palliative Medicine,
Cincinnati Children’s Hospital Medical Center, Ohio 2 Division of Neonatology, Department of Pediatrics, University of Connecticut School of Medicine, Connecticut Children’s Medical Center, Connecticut 3 Division of Neonatology, Department of Research and Pediatrics, University of Connecticut School of Medicine, Connecticut Children’s Medical Center, Connecticut 4 Division of Hematology-Oncology, Department of Pediatrics, University of Connecticut School of Medicine, Connecticut Children’s Medical Center, Connecticut
Elizabeth A. Brownell, MA, PhD3
Kerry Moss, MD4
Address for correspondence DonnaMaria E. Cortezzo, MD, Division of Pain and Palliative Medicine, Department of Anesthesia, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229 (e-mail: [email protected]).
Abstract
Keywords
► end-of-life experiences ► end-of-life care ► neonate
Objective The aim of the study is to determine the perceptions of end-of-life care practices and experience with infants who have died in the NICU among neonatologists, advanced practitioners, nurses, and parents, and also to determine perceived areas for improvement and the perceived value of a palliative care team. Study Design This descriptive, exploratory cross-sectional study using surveys consisting of 7-point Likert scales and free response comments was sent to all neonatologists (n ¼ 14), advanced practitioners (n ¼ 40), and nurses (n ¼ 184) at Connecticut Children’s Medical Center’s neonatal intensive care units (NICUs) in April 2013 and to all parents whose infants died in these NICUs from July 1, 2011, to December 31, 2012 (n ¼ 28). Results The response rates were 64.3% for physicians; 50.0% for practitioners; 40.8% for nurses; and 30.4% for parents. Most providers reported they feel comfortable delivering end-of-life care. Bereavement support, debriefing/closure conferences, and education did not occur routinely. Families stressed the importance of memory making and bereavement/follow-up. Consistent themes of free responses include modalities for improving end-of-life care, inconsistency of care delivery among providers, and the importance of memory making and follow-up. Conclusion End-of-life experiences in the NICU were perceived as variable and end-oflife practices were, at times, perceived as inconsistent among providers. There are areas for improvement, and participants reported that a formalized palliative care team could help. Families desire memory making, follow-up, and bereavement support.
Each year in the United States, over 1 million pregnancies end in fetal death and 19,000 newborns die in the neonatal period.1–4 As a result, most neonatal intensive care unit (NICU) care providers will face the death of an infant. Some infants die unexpectedly; however, many deaths are antici-
pated and can be preceded by the support of palliative and end-of-life care.5 Healthcare providers typically find initiating this to be challenging.6–8 Given the complexity of end-oflife care, improved consistency and standardization may benefit infants, parents, and healthcare providers.9 This is
received March 8, 2014 accepted after revision September 8, 2014 published online December 17, 2014
Copyright © 2015 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA. Tel: +1(212) 584-4662.
DOI http://dx.doi.org/ 10.1055/s-0034-1395475. ISSN 0735-1631.
Downloaded by: University of British Columbia. Copyrighted material.
Am J Perinatol 2015;32:713–724.
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
important because when quality end-of-life care is provided, families feel supported and have an enhanced understanding of the process.10–12 When it is not provided, families may feel helpless, angry, and as though their child had little value to others.10–12 The demonstrated positive effect of palliative care teams on end-of-life care has led to their inclusion in many NICUs. Such teams aid communications, emphasize quality of life and symptom alleviation, and assist parents in decision making.13,14 Palliative care consultations lead to fewer resuscitation attempts and life-sustaining treatments that merely prolong the dying process, fewer invasive procedures, and greater parental support.15,16 Despite these advantages, NICU providers and parents may have different perceptions regarding the conversations that are appropriate or helpful surrounding ethical and end-of-life decisions.17 These differences can leave parents with questions, concerns, regret, or ill-feelings.16,17 Recent studies have examined parents’ views around end-of-life experiences for children and infants. However, data specific to NICU setting are limited.18–26 Furthermore, no study to date has described multiple stakeholders’ perspectives of end-of-life experiences in this setting. To address this need, we performed an exploratory pilot study to determine perceptions of end-of-life care practices and experiences among neonatologists, advanced practitioners, nurses, and parents at a single-center level III and IV NICU without a formal palliative care team. The goal was to ascertain, compare, and contrast perceptions of end-oflife practices of the healthcare team, parental and healthcare team’s experiences around end-of-life care, areas for improvement, and a perceived role for a palliative care team.
Methods
Subjects Every neonatologist, advanced practitioner, and nurse who worked at CCMC’s NICUs in April 2013 was eligible for the study. Providers were asked to respond based on experiences of the previous year to increase the accuracy of memory recall. The survey was voluntary and informed consent, as explained in an e-mail, was implied by survey completion. There was no control or comparison group. Parent surveys were sent to each family whose baby died in either the CCMC Hartford or Farmington NICU between July 1, 2011, and December 31, 2012. Bereaving parents who lost their babies 0 to 4 months prior to the start date were excluded to avoid interfering with their immediate grieving process. The mailing addresses of the parents were identified through clinical databases. Since the survey was voluntary, informed consent, as described in the cover letter, was implied by survey completion.
Data Collection E-mail invitations and survey links were sent to 14 neonatologists, 40 advanced practitioners, and 184 nurses. Reminders were e-mailed every 2 weeks for the 8-week survey duration. SurveyMonkey’s internal software organized responses. Data were de-identified and exported for analysis. Simultaneously, 28 surveys were mailed to families, with no reminders sent. Parents could complete the survey on paper or via telephone. The results were organized in Microsoft Excel, de-identified, and exported for analysis. For all surveys, free response comments and phone conversation scripts were de-identified, exported, and reviewed.
Data Analyses
This was a web-based SurveyMonkey survey of NICU care providers and parents. Surveys were piloted through an iterative process in a select group of neonatologists, advanced practitioners, nurses, and parents. No sample-size calculation was performed as this was an exploratory, descriptive study. The Connecticut Children’s Medical Center’s (CCMC) Institutional Review Board determined the project was exempt from Institutional Review Board oversight.
Survey Design The survey for neonatologists and advanced practitioners consisted of five sections. The first section had demographic and practice characteristic information, and the final section included free response comments. The remaining sections consisted of statements categorized into three parts: personal beliefs/opinions regarding end-of-life care in the NICU, participants’ current end-of-life care practices, and the healthcare team end-of-life care practices. Responses were scored on a seven-point Likert scale. In addition to these sections, the survey for nurses included a section on neonatologists’ endof-life care practices. Parent surveys consisted of three sections: demographic information, a 7-point Likert scale of American Journal of Perinatology
parental experiences in the NICU around the time of his/ her baby’s death, and free response questions regarding experiences around the baby’s death.
Vol. 32
No. 8/2015
Descriptive analyses were performed using SPSS version 11.5.0 (SPSS Inc., Chicago, IL). Response percentages were reported. Likert responses were considered ordinal variables and were described using mode and interquartile range (IQR). For reporting purposes, “agree” meant very strongly agree to agree (1–3) and “disagree” meant disagree to very strongly disagree (5–7). Free response and phone comments were grouped by common themes.
Results Nine neonatologists (64.3%), 20 advanced practitioners (50.0%), and 75 neonatal nurses (40.8%) responded. The majority indicated personal exposure to be between 1 and 5 NICU deaths in the past year. The range of years of NICU experience was from < 5 to > 30 years (►Table 1). Of the 23 surveys delivered to parents, 7 independent families (30.4%) responded. Five were returned with addresses undeliverable. The majority of parents (71.4%, n ¼ 5) were aged 31 to 35 years when their baby was born and identified themselves as white (85.7%, n ¼ 6). The babies were aged between < 48 hours and > 14 days when they died. See ►Table 1 for details.
Downloaded by: University of British Columbia. Copyrighted material.
714
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
715
Table 1 Characteristics of participants Neonatologist
Practitioner
Nurse
Parent
N
%
N
%
N
%
< 30
–
–
3
15.0
12
16.0
30–40
1
11.1
7
35.0
24
32.0
41–50
4
44.4
6
30.0
19
25.3
51–60
2
22.2
4
20.0
17
22.7
61–70
2
22.2
–
–
2
2.7
30
2
22.2
2
10.0
9
12.0
–
2
10.0
17
22.7
NICU deaths experienced in the past year 0
–
1–5
7
77.8
14
70.0
54
72.0
6–10
2
22.2
4
20.0
2
2.7
Unsure
–
–
–
–
2
2.7
CCMC NICU in Hartford
4
44.4
10
50.0
52
69.3
CCMC NICU in Farmington
1
11.1
10
50.0
23
30.7
Both
4
44.4
–
–
–
–
Male
6
66.7
2
10.0
1
1.3
1
14.3
Female
3
33.3
18
90.0
74
98.7
6
85.7
White, non-Hispanic
8
88.9
20
100.0
71
94.7
6
85.7
Hispanic
–
–
–
–
2
2.7
–
–
Site of practice
Gender
Ethnicity
Black, non-Hispanic
–
–
–
–
2
2.7
–
–
Asian
1
11.1
–
–
–
–
1
14.3
18–25
1
14.3
31–35
5
71.4
36–40
1
14.3
Age (parents)
Age of your baby when he or she died < 48 hours
2
28.6
2–6 days
3
42.9
7–14 days
1
14.3
> 14 days
1
14.3
1
14.3
How many months ago your baby died 7 months ago
(Continued)
American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
Years of experience in the NICU
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
Table 1 (Continued) Neonatologist
Practitioner
Nurse
N
N
N
Parent N
%
9 months ago
2
28.6
15 months ago
2
28.6
21 months ago
2
28.6
CCMC NICU in Hartford
3
42.9
CCMC NICU in Farmington
4
57.1
%
%
%
Hospital where your baby died
Abbreviations: CCMC, Connecticut Children’s Medical Center; NICU, neonatal intensive care unit.
Among disciplines surveyed, there were variable perceptions of whether they received end-of-life care education, adequate care from NICU team, and the required palliative care consults. Mostly nurses reported they received education (77.3%, n ¼ 58). All neonatologists (100%, n ¼ 9), most advanced practitioners (75.0%, n ¼ 15), and most nurses (76.0%, n ¼ 57) reported feeling comfortable dealing with issues surrounding end-of-life care. Approximately threefourths of neonatologists (77.8%, n ¼ 7) and over half of advanced practitioners (65.0%, n ¼ 13) and nurses (62.7%, n ¼ 47) agreed the healthcare team provided consistent endof-life care. All neonatologists (100%, n ¼ 9) and most advanced practitioners (85.0%, n ¼ 17) and nurses (82.7%, n ¼ 62) agreed the team provided quality end-of-life care. All neonatologists (100%, n ¼ 9) and advanced practitioners (100%, n ¼ 20), and most nurses (90.7%, n ¼ 68) reported that families and the medical team would benefit from a formal palliative care team. There was variability among parental responses regarding potential for improvement of experiences with implementation of a formal palliative care team. See ►Tables 2 and 3 for modes and IQRs. Most neonatologists, advanced practitioners, and nurses reported the healthcare team communicated with families about care goals (100%, n ¼ 9; 85.0%, n ¼ 17; 81.3%, n ¼ 61) and elicited and respected family preferences (100%, n ¼ 9; 75.0%, n ¼ 15; 81.3%, n ¼ 61). Nearly all nurses reported they believe that they made sure families understood their baby was dying (90.7%, n ¼ 68), encouraged families to hold their baby (94.7%, n ¼ 71), and encouraged memory making (93.3%, n ¼ 70). All neonatologists and advanced practitioners described that they engaged in these three activities (exception: 90.0%, 18 advanced practitioners stated they encouraged memory making). The majority of parents reported they knew their baby was dying, had a part in making decisions about their baby’s care, and the healthcare team prepared them (for all responses, 71.4%, n ¼ 5). All parents stated they were encouraged to hold their baby and most (85.7%, n ¼ 6) stated they were encouraged to build memories. Nearly all recounted that their baby was treated with respect and that they were satisfied with their baby’s care. See ►Tables 2 and 3 for modes and IQRs. All neonatologists and advanced practitioners and nearly all nurses (88.0%, n ¼ 66) stated they ensured the baby was American Journal of Perinatology
Vol. 32
No. 8/2015
comfortable. The majority recounted that they managed symptoms and provisions of comfort care (100%, n ¼ 9; 85.0%, n ¼ 17; 85.3%, n ¼ 64). At the same time, just over half of parents reported their baby was comfortable (57.1%, n ¼ 4). All neonatologists, most advanced practitioners (80.0%, n ¼ 16), some nurses (45.3%, n ¼ 34), and few parents (14.3%, n ¼ 1) reported room for improvement in ensuring a baby’s comfort during the dying process. See ►Tables 2 and 3 for modes and IQRs. Nearly all advanced practitioners (90.0%, n ¼ 18) and some neonatologists (55.5%, n ¼ 5) and nurses (60.0%, n ¼ 45) responded the healthcare team provided emotional support for staff. There was variability among neonatologists and advanced practitioners in reporting that they spoke with families about grief, sent a message of condolence to families, participated in a closure conference with families, or participated in debriefing for staff. Most nurses reported they spoke to families about grief (81.3%, n ¼ 61). Over half reported they sent a message of condolence to families (57.3%, n ¼ 43), provided emotional support to staff (69.3%, n ¼ 52), or participated in staff debriefings (50.7%, n ¼ 38). Just over half of the parents recounted that the healthcare team made sure their wishes were met (57.1%, n ¼ 4) and did not feel abandoned by staff (57.1%, n ¼ 4). Nearly threefourths stated they received adequate emotional support from staff (71.4%, n ¼ 5), and most stated they received information about bereavement services (for all 85.7%, n ¼ 6). While many reported that they received follow-up from the healthcare team after their baby died (71.4%, n ¼ 5), about half reported they wanted more contact (42.9%, n ¼ 3). See ►Tables 2 and 3 for modes and IQRs.
Free Response Comments Fifty-five percent of neonatologists left comments. Themes included the need for a formal palliative care team, disparate end-of-life practices, lack of private spaces for families, and lack of support for staff. Comments included: There is far too little attention paid to the emotional needs of staff…It’s not my primary focus because I’m too busy caring for the baby and family. I think a formalized debriefing process by someone who is not a day to day caregiver could be very helpful. It is difficult to BE the doctor and to
Downloaded by: University of British Columbia. Copyrighted material.
716
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
717
Table 2 Summary of healthcare team responses Statementa
Neonatologistb
Practitionerc
Nursed
Modee
IQRf
Modee
IQRf
Modee
IQRf
I have received education in end-of-life care
3, 5
3–5
3
3–5
3
3–3
More could be done to ensure babies’ comfort during the dying process
3
3–3
3
2–3
3
3–5
I feel comfortable dealing with issues surrounding end-of-life care
3
2–3
2
2–3.75
3
2–3
I feel comfortable leading end-of-life discussions with families
3
2–3
2, 5
2–5
I feel comfortable discussing the death of a baby with the family
3
2–3
3
2–3.75
3
3–4
Families would benefit from the presence of a palliative care team
1, 2
1–2
1
1–2
1
1–3
The healthcare team would benefit from a palliative care team
1
1–2
1
1–2
1
1–3
2
1.5–2
2
1–2
3
1.75–3
Your beliefs about your current end-of-life care practices I ensure the family understands the baby’s condition and prognosis I prepare the family for the dying process
2
2–3
3
2–4
3
2–3
I ensure there is privacy for meetings regarding redirection of care
2
2–3
2
2–3
3
1–3
I document discussions with the family about the goals of care
3
2–3
2
2–3
3
2–3
I encourage families to hold the baby before and during the dying process
2
1–2.5
2
1–2
1
1–2
I ensure the family has adequate time with the baby before/after care is redirected
2
1.5–2
2
1–2
1
1–3
I ensure rituals important to the family and memory making occur
1, 2
1–3
1, 2
1–3
1
1–2
I ensure the family’s preferences are respected
–
–
–
–
1
1–2
I ensure the babies are comfortable when they die
2
2–3
1, 2
1–2
1
1–2
I address staff concerns of a baby’s comfort during the dying process
2
2–3
2
1–2
–
–
I control pain well in dying babies
3
2–3
2
1–3
–
–
I minimize unnecessary tests and procedures after care is redirected
2
1.5–2
2
1–2
–
–
I minimize noxious stimuli after care is redirected
3
2–3
2
1.25–3
1
1–3
I talk to families about grief and bereavement issues
4
2–4
3, 4
2.25–4
3
1.5–3
I send a message of condolence to the families of babies who have died
5
2.5–5
4, 5
4–5
3
2–4
I participate in closure/grief conferences with families after death of a baby
2, 5
2–5
5
3–5
5
3–5
I provide emotional support for staff members caring for dying babies
3
3–3.5
3
2.25–3
2
2–4
I debrief with other staff members who cared for a deceased baby
3
2.5–3.5
3
2–4
3
2.75–4
3
2.5–3.5
3
3–4.75
3
2–4
The healthcare team at your institution Provides consistent end-of-life care
(Continued)
American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
Your opinions
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
Table 2 (Continued) Statementa
Neonatologistb
Practitionerc
Nursed
Modee
IQRf
Modee
IQRf
Modee
IQRf
Provides quality end-of-life care
3
2.5–3
3
2.25–3
3
2–3
Communicates with the team to clarify goals of care
3
2.5–3
3
3–3.75
3
2–3
Communicates with patients and families about goals of care and treatment
3
2–3
3
3–3
3
2–3
Elicits & respects family’s preferences regarding goals of care & treatment
2
2–3
3
2.25–3.75
3
2–3
Communicates with colleagues about the patient’s/family’s emotional needs
3
2–3
3
3–3
3
2–3
Manages symptoms and provision of comfort care
2
2–3
3
2–3
3
2–3
Attends to the emotional & practical needs of dying babies & their families
3
1.5–3
3
2.25–3
3
2–3
Assesses the spiritual/religious needs of the baby and family
2
2–2.5
3
2–3
3
2–3
Provides emotional support for staff caring for dying babies
2
2–4
3
2.25–3
3
3–4
Provides education about palliative care
3, 4, 5
3–5
3
3–5
5
3–5
Communicate end-of-life issues and options to families in a sensitive way
–
–
–
–
3
2–3
Involve parents in end-of-life decisions
–
–
–
–
3
2–3
Ensure family has adequate time with their baby before/after care is redirected
–
–
–
–
3
2–3
Ensure rituals important to the family and memory making occur
–
–
–
–
3
2–3
The neonatologists at your institution
Ensure the babies are comfortable when they die
–
–
–
–
3
2–3
Control pain well in dying babies
–
–
–
–
3
2–3
Minimize unnecessary tests and procedures after care is redirected
–
–
–
–
3
2–3.5
Talk to families about grief and bereavement issues
–
–
–
–
3
3–4
Participate in closure/grief conferences with families after the death of a baby
–
–
–
–
4
3–4
Provide emotional support for staff members caring for dying patients
–
–
–
–
4
3–5
Debrief with other staff members who cared for a deceased baby
–
–
–
–
3
3–5
Abbreviations: IQR, interquartile range. Note:aThe statements listed are the actual statements given in the survey. b Refers to the survey of neonatologists. c Refers to the survey of advanced practitioners. d Refers to the survey of nurses. e The mode response for that statement on the Likert scale: 1, very strongly agree; 2, strongly agree; 3, agree; 4, neither agree nor disagree; 5, disagree; 6, strongly disagree; 7, very strongly disagree. f The IQR for the mode; – means not asked.
American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
718
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
719
Table 3 Parents’ summary of responses Statementa
Modeb
IQRc
The doctors made sure I understood my baby’s illness
1
1–3
The nurses made sure I understood my baby’s illness
1,3
1–4
I received confusing/contradictory information about my baby’s illness/treatment options
5,7
4–7
I knew my baby was dying
1,2
1–4
The healthcare team prepared me for what to expect
1,3
1–5
I took part in the decisions made about my baby’s care
1
1–4
The healthcare team made sure my wishes were met
1
1–4
I felt abandoned by the hospital staff
6,7
3–7
I received adequate emotional support from the hospital staff
1,2
1–4
I was offered spiritual support/rituals
3
1–3
I was encouraged to participate in my baby’s care
1,3
1–4
I was encouraged to hold my baby
1,2
1–2
I was encouraged to build memories
1,2
1–2
I had enough time to spend with my baby before and after he/she passed away
2,4
1–4
I had a private place to spend time with my baby
1
1–4
My baby was comfortable leading up to his/her death
4
1–4
There is more the team could have done to make my baby more comfortable
5,7
4–7
The physicians helped me through the process of my baby’s death
1,2,3
1–3
The nurses helped me through the process of my baby’s death
1,2,4
1–4
My baby was treated with respect by all members of the care team
1
1–3
I received information coping with my loss (bereavement)
2
2–3
I was satisfied with the care my baby received around the time he/she passed away
1
1–3
The healthcare team followed up with me after my baby passed away
2
2–5
I wanted follow-up with the healthcare team after my baby passed away
4,5
2–5
A team specializing in caring for patients through the dying process would have been helpful or improved my experience
4
2–5
Abbreviations: IQR, interquartile range; NICU, neonatal intensive care unit. Note: a The statements listed are the actual statements given in the survey. b The mode response for that statement on the Likert scale: 1, very strongly agree; 2, strongly agree; 3, agree; 4, neither agree nor disagree; 5, disagree; 6, strongly disagree; 7, very strongly disagree. c The IQR for the mode.
debrief concurrently. I also think there is tremendous variability among the team around capabilities to provide palliative care.
We do a VERY POOR job of preparing families for these issues, as evidenced by the number of readmits.
See ►Table 4 for additional comments. Thirty-five percent of advanced practitioners left comments. Themes included areas to improve when providing end-of-life care, the need for outpatient palliative care services, and gaps between different providers. The comments included the following:
See ►Table 4 for additional comments. Approximately one-fourth (22.7%) of nurses left comments. Themes included areas to improve when providing end-of-life care, the need for a formal palliative care team, uneven end-of-life practices, lack of effective communications with families, and lack of staff support. Comments included:
I have seen several instances where the wishes of the family were overlooked because of what we “usually” do or what would be easier for staff or MDs. More attention needs to be paid for kids we send home for palliative care.
Please give us some education and perhaps a team that is dedicated to these experiences. Some have been good and some not so good experiences. I would like more teamwork and communication between attendings and staff. American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
Your experience in the NICU when your baby passed away
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
Table 4 Additional healthcare team comments Additional comments left by the healthcare team Additional comments left by neonatologists “I try to make the environment as peaceful as possible. Often the rooms/pods in the NICU are noisy and busy. I’ve been told by staff that I can’t silence monitors, pumps or ventilators…I wish we had more private rooms, nicer spaces that are less institutional for families to spend time with dying babies or to have end-of-life discussions.” “As technology advances and more borderline children survive, a formal palliative care program is an absolute necessity for the NICU!” “Peer family opportunities, autopsy and burial options need to be explored.” Additional comments left by advanced practitioners “I think that there could be more improvements. This includes more use of chaplain services, better communication (including both between staff as well as families), more education, pain management, individualized palliative care, and support to staff after a death.” “There is always a gap between the nursing staff and the medical team. Nursing attends to the emotional and comfort care of the infant and family MUCH better than medicine does.” Additional comments left by nurses “I believe that our physicians are not able to speak to parents in a way that enables them to truly understand just how compromised their infant will likely be… A palliative team might include a person who could spend time with parents finding out exactly what they understand and help to know what to do for themselves and their baby.” “Often there is no debriefing for staff. Meetings with the family after a death do not take place…Attendings have different comfort levels with redirection of care to palliative care models, and do not offer this to families until they have ’given up’ or exhausted all means for survival. I have not seen a birth plan for a known genetic syndrome baby that includes end of life care.” “Many times I don’t feel that the doctors clearly explain if a baby has an extremely poor prognosis…then the family has false hope and wants many unnecessary interventions done for their baby that are painful and not appropriate.” “More education and resources for consistency in our practice would be good.” “I feel we do a good job with families but there is so much more room for improvement... Also we need support for staff after taking care of a patient and family with a loss.” Abbreviations: NICU, neonatal intensive care unit.
I don’t think end of life care is offered enough to families as an option. See ►Table 4 for additional comments. All parents chose to leave comments. Themes included the importance of memory making, the need for bereavement services, and appreciation for all the support. Comments included:
bereavement support…It would have been nice for me to have some support in those first few weeks…You know my husband had gone back to work and I was home by myself and most of the time I just sat on the floor petting my dog and crying for much of the day. I mean literally sitting on the floor crying...Had they offered me a list of resources it probably would have been easier. See ►Table 5 for more comments.
I wish someone could have told us if our son was or was not suffering so if he was not we could have spent more time with him alive. I wish someone could have helped us bath and diaper and feed and dress him…before we stopped life support. I wish someone had told us what to expect from a dying baby. I was so terrified. See ►Table 5 for additional comments. In addition, 42.9% (n ¼ 3) of parents requested a follow-up call. These parents stated in phone conversations they had positive experiences but realized their experiences were unique. They stressed the importance of memory making, follow-up, and bereavement support. Excerpts included the following: Looking back the thing that I could have used the most after losing [our son] would have been more follow-up American Journal of Perinatology
Vol. 32
No. 8/2015
Discussion Despite a recent increased focus on palliative care in NICUs, few studies have examined the perspectives of interdisciplinary caregivers regarding neonatal end-of-life care in the NICU setting.18–26 This unique pilot study reports and compares the experiences of neonatologists, advanced practitioners, nurses, and parents at a single-center level III and level IV NICU without a formal palliative care team. While the parent and healthcare team surveys represent two slightly different time periods, the low turnover rates for neonatologists, advanced practitioners, and nurses and the absence of significant changes in practice may indicate that care was consistent. This study may indicate that palliative care team would be helpful, the healthcare teams desire more consistency in end-of-life practices, families prefer more memory making
Downloaded by: University of British Columbia. Copyrighted material.
720
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
721
Table 5 Additional parent comments Additional comments left by parents Free response comments “I was so distraught and having never had a baby before unaware of what I should have as a mother longed to do with my son before we took him off life support. Someone should have told us ok to cuddle him and bathe him and dress him and diaper him and give him ’taste’ of breast milk. We were so worried he might be suffering we wanted to stop life support ASAP, looking back I wish we held him more etc.” “While our son was delivered and there was hope support was great. Once the decision that life support had to be removed and after his death shockingly almost no follow up or emotional/bereavement support for us.” “The staff was wonderful-above and beyond what most parents and babies get. We were very fortunate.” “Being told/led to spend time to in Caroline’s room with my son-sleeping with him-bathing him and dressing him was so helpful. Parents are in such shock that they need someone to tell them what to do-provide options.” Follow-up phone call comments
“It was such a heart wrenching decision that you have to take your son off of life support…And once we had that information from the doctors to make that decision for us it was no wasting time…the main thing is we didn’t want him to suffer…Had I had experience with a baby before, had he not been our first, I may have wanted to keep him on life support a little while longer to have done a few more things with him…Had we been reassured that he wasn’t suffering, had someone pushed us more to spend more time with him then maybe we would have.” “It is so nice to get the bereavement letters that also recognizes [our son’s] life and our loss. It’s hard because I am still at the same time getting notices of stuff to buy for a nine month old child and I’m still on all of these mailing lists. So in a way it’s weirdly nice to see someone say we recognize that it is still an ongoing loss for you.” “I think that’s wonderful that you are researching this because it can so easily get lost in the shuffle. Particularly amongst… doctors who weren’t trained in it. There are still doctors that they don’t talk about death. They think…it would be better if you just don’t go there and deal with it but it’s just not. And it’s hard to realize not doing more interventions isn’t always the best option. They have to put aside their own feelings and ways of processing to be there with the family and they do so by not dealing with it and unfortunately it is the family that suffers.”
and bereavement follow-up, and that parents and the healthcare team may differ in the report of a baby’s comfort during the dying process. While most parents surveyed recounted that they were satisfied with the end-of-life care their baby received, some reported feelings of abandonment and a lack of support or bereavement service after their baby died. This was most evident in the free response comments. These results suggest that parents did not always feel prepared for or supported through the end-of-life transition and bereavement process. The end-of-life process goes well beyond the death and continues through bereavement. It is pertinent that physicians who provide end-of-life care appreciate that the end-oflife process involves the family and transcends beyond the death of their patient. A palliative care team might be able to provide more consistent outcomes by assisting the healthcare team and family through the end-of-life process, offering the necessary support, and providing resources throughout bereavement. Parental responses about the potential benefit of a formal palliative care team were variable in this study. This is in contrast to other studies in which parents suggest that a healthcare professional trained in end-of-life care who explained the timeline and process of dying would be helpful and could actually empower them in their caregiv-
ing.16,27–29 This difference may simply be due to the limited study population size. Also, every end-of-life experience is unique and every family has different views, previous experiences, values, and cultures that make their needs and desires for outside help and guidance during this personal time variable. Family interactions with the healthcare team through this process may also influence their perception of the potential benefits of a palliative care team. For example, if they interacted positively with the healthcare team and the team addressed all their needs through the end-of-life process, families may not feel the need to bring in another team during this difficult and personal time. Most parents in our study were highly educated and understood their babies’ illness and disease trajectory. They were very involved in the care of their baby, advocated for their baby and themselves, and worked closely with the healthcare team. As in our study, recent articles of parental experiences cited nurses as the caregivers providing the most emotional support through this process.12,30–32 This support often comes in the form of memory making and bereavement support. The parents in our study stressed importance of these areas of palliative care. It is also plausible that without the presence of a palliative care team it is difficult to appreciate how such expertise could be beneficial and help in these key areas. American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
“The part that really sticks out is our last moments with her and really the last day. I would encourage families to allow [memory making] because you can’t go back…There are families who weren’t encouraged by the medical staff…to take pictures or they didn’t think about it…that is a really important part of something you can hold on to.”
NICU End-of-Life Care: Staff and Parent Experiences
Cortezzo et al.
In contrast, while the majority of neonatologists, advanced practitioners, and nurses in this study reported they were confident in the quality of palliative care given, they universally indicated that the medical team and families would benefit from the presence of a palliative care team. This is consistent with earlier studies demonstrating that formal palliative care teams or protocols enhance the use of bereavement services and improve the experience of patients and their families.15,16,27,33–37 In this study, members of the healthcare team identified areas for improvement including: education in palliative care and end-of-life care, consistency among providers, early communication with families, bereavement support for families and staff, and debriefing/ closure meetings for staff and families. These are key areas in which a palliative care team could help the patient, family, and healthcare team. This study also highlighted the impressive need for support for the staff. Neonatologists may find it difficult to attend to the needs of both the staff who experience their own bereavement/grief and the family. Providing care and debriefing concurrently appear difficult for the staff. The presence of a trained palliative care team could conceivably bridge the gap between care provisions and staff support. This is supported by earlier studies that show education and care by individuals experienced in palliative care may positively affect staff comfort level in supporting and aiding families and staff with these experiences.10,38,39 While over one-third of parents recounted they did not perceive their baby to be comfortable during the dying process, the vast majority of healthcare team members reported they ensured babies were comfortable during this time. While some parents realized their baby was uncomfortable, most did not appreciate that more could be done to ensure comfort. These findings extend previous research demonstrating a gap in parental and care team perceptions of comfort in pediatric palliative care patients.19,21,40 The potential differences in parental and care team perceptions of pain and comfort during end-of-life care in the NICU merit further exploration. Perhaps further healthcare team education around identification and treatment of pain and symptoms during end-of-life care and an increase in parental understanding of treatment options would result in more communication to ensure the baby’s symptoms are well managed. Limitations of this descriptive study include the accuracy of self-reporting and concerns regarding generalizability of the data, especially for parents. While the survey was pilot tested, it was not validated. Most responding parents selfidentified as white non-Hispanic; however, less than 50% of parents eligible for inclusion in the study identified as white. Thus, our findings may not generalize well to non-white or Hispanic families. The influence of cultural backgrounds on parents’ perceptions of end-of-life care and the benefits of palliative care in the NICU setting warrants further investigation. The response rate and small sample size may also limit generalizability. Those who chose to respond may have had a special interest or strong beliefs regarding this subject or their experiences, which may have differed from those of nonresponders. In addition, as care team members reported American Journal of Perinatology
Vol. 32
No. 8/2015
personal exposure to a comparatively low number of patient deaths in the previous year, their experiences and views may not generalize to those exposed to a higher number of deaths. A higher percentage of neonatologists and practitioners responded relative to nurses. This may be due to time constraints, lack of computer access, or relative lack of familiarity with web-based surveys. Variability between healthcare team and parent responses may reflect the lack of congruity between the hospital site of infant death and the practice site of healthcare provider participants. However, the consistency of advanced practitioner responses across the two sites suggests that the end-of-life care practices in the two units are similar. This study suggests several specific areas where the implementation of a palliative care team might improve end-oflife care in the NICU. These areas include improved consistency among providers in end-of-life care practices, symptom/pain management, early and clear communication with the family about prognosis, bereavement support, and staff debriefing. Further research is needed to evaluate the impact of implementation of a palliative care team upon end-of-life care practices in the NICU setting. We plan to validate the survey and conduct a multicenter study. Further areas of research suggested by our study include the differences in parental and healthcare team perceptions of pain and comfort during end-of-life care and the influence of cultural backgrounds on parents’ perceptions of end-of-life care and the benefits of palliative care.
Conclusion This single-center pilot study reports clinically important disparities between the perceptions and experiences of providers and parents during end-of-life care in a level III and IV NICU. Despite providers’ confidence in their skills, other staff and parents of babies who died reported variability, inconsistency, lack of support, and failure to appreciate infant discomfort during end-of-life care. This study underscores a need to decrease variability in key areas of end-of-life care, such as delivery of information and provisions of pain control, improved bereavement services, development of closure conferences for staff and parents, and the development and integration of palliative care teams in NICU settings. Further research is needed regarding the specific effects of implementing a formal palliative care team upon end-of-life care of the neonate.
Clinical Perspective • Delivery of end-of-life care in the NICU is variable. • NICU staff and families could benefit from formal palliative care teams. • Families in the NICU desire more memory making, bereavement services, and follow-up. • Staff in the NICU desire more consistency in the end-of-life care provided, more end-of-life symptom management, bereavement support, and debriefing.
Downloaded by: University of British Columbia. Copyrighted material.
722
NICU End-of-Life Care: Staff and Parent Experiences
Financial Disclosure The authors have no financial relationships relevant to this article to disclose.
19 Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family per-
20
21
Funding Source No funding was secured for this study.
References
22
23
1 MacDorman MF, Kirmeyer S. Fetal and perinatal mortality, United
States, 2005. Natl Vital Stat Rep 2009;57(8):1–19
24
2 Heron M, Hoyert DL, Murphy SL, Xu J, Kochanek KD, Tejada-Vera B.
Deaths: final data for 2006. Natl Vital Stat Rep 2009;57(14):1–134 3 Hoyert DL, Arias E, Smith BL, Murphy SL, Kochanek KD. Deaths: 4 5
6
7 8
9
10
11
12
13
14
15
16
17
18
final data for 1999. Natl Vital Stat Rep 2001;49(8):1–113 Hoyert DL, Heron MP, Murphy SL, Kung HC. Deaths: final data for 2003. Natl Vital Stat Rep 2006;54(13):1–120 Carter BS, Hubble C, Weise KL. Palliative medicine in neonatal and pediatric intensive care. Child Adolesc Psychiatr Clin N Am 2006; 15(3):759–777 Carter B, Levetown M. Palliative Care for the Infants, Children, and Adolescents: A Practical Handbook. Baltimore, MD: John’s Hopkins University Press; 2011 Kain VJ. Palliative care delivery in the NICU: what barriers do neonatal nurses face? Neonatal Netw 2006;25(6):387–392 Cortezzo DE, Sanders MR, Brownell E, Moss K. Neonatologists’ perspectives of palliative and end-of-life care in neonatal intensive care units. J Perinatol 2013;33(9):731–735 Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatr 2012;12:25 Armentrout D, Cates LA. Informing parents about the actual or impending death of their infant in a newborn intensive care unit. J Perinat Neonatal Nurs 2011;25(3):261–267 Henley A, Schott J. The death of a baby before, during or shortly after birth: good practice from the parents’ perspective. Semin Fetal Neonatal Med 2008;13(5):325–328 Gold KJ. Navigating care after a baby dies: a systematic review of parent experiences with health providers. J Perinatol 2007;27(4): 230–237 Gale G, Brooks A. Implementing a palliative care program in a newborn intensive care unit. Adv Neonatal Care 2006;6(1): 37–53 Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonatal Nurs 2006;20(1):113–116 Pierucci RL, Kirby RS, Leuthner SR. End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service. Pediatrics 2001;108(3):653–660 Eden LM, Callister LC. Parent involvement in end-of-life care and decision making in the newborn intensive care unit: an integrative review. J Perinat Educ 2010;19(1):29–39 Ward FR. Parents and professionals in the NICU: communication within the context of ethical decision making—an integrative review. Neonatal Netw 2005;24(3):25–33 Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents’ perspective. J Perinatol 2007;27(8):510–516
723
25
26 27 28
29
30
31 32
33
34 35 36
37
38
39
40
spectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 2002;156(1):14–19 Heller KS, Solomon MZ. Initiative for Pediatric Palliative Care (IPPC) Investigator Team. Continuity of care and caring: what matters to parents of children with life-threatening conditions. J Pediatr Nurs 2005;20(5):335–346 Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics 2006;117(3):649–657 Seecharan GA, Andresen EM, Norris K, Toce SS. Parents’ assessment of quality of care and grief following a child’s death. Arch Pediatr Adolesc Med 2004;158(6):515–520 Davies B, Connaughty S. Pediatric end-of-life care: lessons learned from parents. J Nurs Adm 2002;32(1):5–6 Midson R, Carter B. Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents’ experiences. J Child Health Care 2010;14(1):52–66 Williams C, Cairnie J, Fines V, et al; With Care team. Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit. Pediatrics 2009;123(1):e87–e95 Widger K, Picot C. Parents’ perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs 2008;34(1):53–58 Rini A, Loriz L. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs 2007;22(4):272–282 Field M, Behrman R. When Children Die Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: National Academies Press; 2003 Lundqvist A, Nilstun T, Dykes AK. Both empowered and powerless: mothers’ experiences of professional care when their newborn dies. Birth 2002;29(3):192–199 Kavanaugh K, Moro TT, Savage TA. How nurses assist parents regarding life support decisions for extremely premature infants. J Obstet Gynecol Neonatal Nurs 2010;39(2):147–158 McHaffie HE, Lyon AJ, Hume R. Deciding on treatment limitation for neonates: the parents’ perspective. Eur J Pediatr 2001;160(6):339–344 Kowalski WJ, Leef KH, Mackley A, Spear ML, Paul DA. Communicating with parents of premature infants: who is the informant? J Perinatol 2006;26(1):44–48 Carter BS, Guthrie SO. Utility of morbidity and mortality conference in end-of-life education in the neonatal intensive care unit. J Palliat Med 2007;10(2):375–380 Leuthner SR. Fetal palliative care. Clin Perinatol 2004;31(3):649–665 Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol 2002;22(3):184–195 Kaempf JW, Tomlinson MW, Campbell B, Ferguson L, Stewart VT. Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes. Pediatrics 2009;123(6):1509–1515 Moro T, Kavanaugh K, Okuno-Jones S, Vankleef JA. Neonatal endof-life care: a review of the research literature. J Perinat Neonatal Nurs 2006;20(3):262–273 Engler AJ, Cusson RM, Brockett RT, et al. Neonatal staff and advanced practice nurses’ perceptions of bereavement/end-oflife care of families of critically ill and/or dying infants. Am J Crit Care 2004;13(6):489–498 Cavaliere TA, Daly B, Dowling D, Montgomery K. Moral distress in neonatal intensive care unit RNs. Adv Neonatal Care 2010;10(3): 145–156 Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 2004;114(5):1248–1252
American Journal of Perinatology
Vol. 32
No. 8/2015
Downloaded by: University of British Columbia. Copyrighted material.
Conflict of Interest The authors have no conflicts of interest to disclose.
Cortezzo et al.
