Objective. Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study was to describe end-of-life care for infants, including analysis of palliative care consultations conducted in this population. We hypothesized that the palliative care consultations performed had an impact on the infants' end-of-life care.
Design. A retrospective chart review using the “End of Life Chart Review” from the Center to Improve Care for the Dying was conducted. The participants were the patients at Children's Hospital of Wisconsin who died at <1 year of age during the 4-year period between January 1, 1994, and December 31, 1997. The patients' place of death, medical interventions performed, and emotionally supportive services provided to families were analyzed.
Results. Among the 196 deaths during the study period, 25 (13%) of these infants and families had palliative care consultations. The rate of consultations increased from 5% of the infant deaths in 1994 to 38% of the infant deaths in 1997. Infants of families that received consultations had fewer days in intensive care units, blood draws, central lines, feeding tubes, vasopressor and paralytic drug use, mechanical ventilation, cardiopulmonary resuscitation, and x-rays, and the families had more frequent referrals for chaplains and social services than families that did not have palliative care consultations.
Conclusions. This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.
- CHW =
- Children's Hospital of Wisconsin •
- NICU =
- neonatal intensive care unit •
- PICU =
- pediatric intensive care unit •
- CPR =
- cardiopulmonary resuscitation •
- DNR =
- do not resuscitate
There is a higher death rate among children who are younger than 1 year than in any other pediatric age group.1 The infant mortality rate in the United States remains unchanged since the mid-1980s at approximately 7.2 deaths per 1000 live births.2 Although some of these deaths are unexpected deaths as a result of sudden infant death syndrome or accidents, most of these infants die from a lethal anomaly, prematurity, or some other incurable condition. Despite advances in both prenatal and neonatal care, infants are still born prematurely, with lethal anomalies, or with conditions that lead to death. Understanding how these infants are being treated as they die can provide information that can lead to the development of ways in which families and their infants might be helped at the end of the infant's short life.
End-of-life care for infants has undergone relatively little analytic evaluation. In 1973, Duff and Campbell3 questioned the practice of aggressively treating all critically ill neonates until death and suggested that withdrawing or withholding treatment may be a reasonable option. Approximately 20 years later, Wall and Partridge4 found that physicians were willing not to treat marginally viable or severely handicapped infants. It is unclear what end-of-life care is offered to these dying infants. There have been a number of theoretical publications about how best to treat infants who cannot be cured,5–7 but there are few analytic studies that clarify the type of end-of-life care that is being provided to them.8–10 Statements about various types of end-of-life care for infants as being “good” or “bad” often are speculation. The Institute of Medicine states that a “decent or good death is one that is: free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards.”11 Emanuel and Emanuel12 put forward a framework of a “good death” that delineates dimensions that require interventions. These dimensions consist of the clinical status (including physical, psychological, and cognitive symptoms), social relationships and support, economic and caregiving needs, hopes and expectations, and spiritual and existential beliefs. Quantitative and qualitative analyses of current end-of-life care for infants, based on this framework of a good death, are necessary to determine what interventions should be offered to infants and their families. Establishing what constitutes good end-of-life care for infants requires that studies that describe and analyze end-of-life care be conducted.
Children's Hospital of Wisconsin (CHW) has a pediatric palliative care consultation service, making possible the exploration of how these consultations affected end-of-life care at our hospital. The goal of this study was to describe the end-of-life care received by families and their infants who were younger than 1 year at the time of their death at CHW. We hypothesized that a palliative care consultation alters the end-of-life care provided to these infants and families.
Setting and Participants
A retrospective chart review was performed on infants who died at CHW during the period between January 1, 1994, and December 31, 1997. CHW is academically affiliated with the Medical College of Wisconsin and has a level III neonatal intensive care unit (NICU) and a 24-bed pediatric intensive care unit (PICU). CHW is the primary regional children's hospital that provides comprehensive, tertiary care services for Southeast Wisconsin, Northern Michigan, and parts of Northern Illinois. Included in this study were all infants who were younger than 1 year at the time of their death in the hospital. We chose to review only deaths that occurred in the hospital because that is the population for whom the chart review tool was validated. We do know that terminally ill infants with similar diagnosis were discharged from the hospital with the aid of our palliative care service; however, we do not have similar charting and we do not know what percentage of the total home deaths they represent. Therefore, infants whose families received palliative care consultations and went home to die were excluded from this study.
The palliative care service at CHW is an inpatient consultation service that has been described elsewhere.13 It consists of 2 clinical nurse specialists and a physician medical director. The nurses respond to requests for consultations by working directly with the existing medical team and the patient's family. They participate by making recommendations about the environment, advanced directive planning, and medical interventions and by providing emotional support as the families cope with grief and bereavement. They report to the supervising palliative care physician regarding consultation requests and recommendations, but this physician does not become involved directly in management issues unless specifically requested to by the primary physician. The decision to implement any recommendations is made by the patient's attending physician. Once consulted, the palliative care staff follows the patient with the medical team for the duration of the admission. If the patient does not die during the hospitalization, then the palliative care service participates in discharge planning and home care through consultation with a home care agency. Whether the patient dies at home or in the hospital, the palliative care staff often help with funeral arrangements and bereavement counseling. During all 4 years of our study, the same 2 nurse specialists were the consultants for the pediatric palliative care service. This study was performed with the approval of CHW's Institutional Review Board.
The data collection instrument used to perform the chart review was a modified version of the End of Life Chart Review, devised by the Center to Improve Care for the Dying.14 The survey originally was created for adults, and our modifications consisted predominantly of replacing patient assessments and decisions with parental assessments and decisions. The categories covered in the chart review include the patients' demographics, place of death (intensive care unit or general floor), medical interventions and medicines (including analgesia) given in the last 48 hours of life, decisions to withdraw or withhold medical interventions, and psychosocial support. The chart review focuses on the description of interventions and care in the last 48 hours of life, whether it is ongoing care or withdrawing or withholding care. Specific psychosocial support included referrals to chaplains or social services and documentation of the “emotional needs of the family” when either a physician or a nurse documented anything about the families' or loved ones' emotional state. The degree of attention paid to emotions and the number of notes that mentioned this issue did not effect whether credit was given. In addition, we recorded whether a palliative care consultation was requested, including the timing of the consultation and the requesting physician.
To analyze the data gathered from the chart review, we formed 3 groups of infants. Group 1 consisted of infants whose families had a palliative care consultation, and group 2 consisted of all of the infants whose families did not have a palliative care consultation. A subgroup of group 2 (group 2a) consisted of infants who had a matching primary diagnosis to an infant from group 1 but whose families did not have a palliative care consultation.
Data were abstracted and entered into a Microsoft Access database and analyzed with Statistical Analysis System Version 6.12 for Windows 95 (SAS Institute, Cary, NC). The student'st test for difference of means was used for interval-level variables, whereas proportions were analyzed by χ2 test for difference of proportions. We compared group 1 first with group 2 and then with group 2a. Group 2 was not compared with group 2a because the latter is a subset of the former. Because this was an exploratory study and we analyzed many variables measured across the same study participants, we used the Bonferroni correction. The Bonferroni correction is a conservative statistical tool that adjusts theP value for statistical significance. For example, in Table 3, where the results of 12 separate analyses are reported, to achieve α < 0.05, an adjustment of 0.05/12 is made. Therefore, with this test, a more conservative P value of P< .004 is required to achieve confidence in a statistical difference.
There were 196 in-hospital deaths of children who were younger than 1 year during the 4-year study period. Twenty-five (13%) of these infants and their families received a palliative care consultation (group 1), 171 did not (group 2), and 123 of these infants had a matching diagnosis to group 1 (group 2a). An additional 15 families had a palliative care consultation that resulted in a home death with home hospice services for the infant. These 15 infants were excluded from this study.
The primary diagnoses of the infants who received a palliative care consultation are listed in Table 1. Patients with congenital heart disease made up the largest population of infants, followed by those who had hypoxic brain injury (accidental and nonaccidental trauma, or asphyxia). Group 1 had a smaller variety of primary diagnoses than did the infants in group 2. Except for the diagnosis of infantile myofibromatosis, all of the primary diagnoses made for infants in group 1 were matched by at least 1 infant in group 2a.
The infants' mean age at the time of the consultation was 112 days, whereas the median was 118 days (interquartile range: 36–184 days), with the youngest having a consultation called on the first day of life and the oldest on day of life 278. The number of days between when the consultation was called and when the infant died was a mean of 11 days (range: 1–73 days) and a median of 2.5 days (interquartile range: 1–15 days). Because of missing information for 3 of the infants, the means for both of these categories were determined from 22 of the 25 infants whose families had a palliative care consultation.
The number of palliative care consultations increased from 3 (5%) of the 63 infants who died in 1994 to 17 (38%) of the 46 infants who died in 1997. The number of physicians and variety of subspecialists who requested consultation also changed during the study period. In 1994, only 1 neonatologist and 2 pediatric intensivists used this service, but by 1997, requests for consultations were made by an additional 5 neonatologists and 7 intensivists, as well as a pediatric surgeon, a gastroenterologist, and 2 general pediatricians. No single physician requested >2 palliative care consultations for infants during the 4-year study period. Because of faculty turnover during the study period, as well as the multidisciplinary team concept within our intensive care units, it is difficult to make any comments about specific faculty not using the service, although the cardiac patients make up the lowest percentage of use per death.
Comparisons Between Infants and Families Who Did and Did Not Have Palliative Care Consultations
There were no significant differences between the infants whose families did and did not have palliative care consultations with regard to their race, gestational age at birth, age at death, or parents' religion (Table 2). The medical interventions that infants received in their last 48 hours of life are listed in Table 3. There were no differences between the groups regarding intravenous fluids, intravenous nutrition, antibiotic use, or narcotic use. Infants who had received consultations received fewer blood products (36% vs 63%;P < .01) and had fewer blood draws performed (3 ± 6 vs 9 ± 8; P < .01) than the infants with similar diagnoses but without consultations. These differences were not significant after the Bonferroni correction was performed. Infants who had consultations frequently had no blood tests at all in the last 48 hours of life (44% vs 7%; P < .001). There were significant decreases in the use of central lines (64% vs 92%;P < .001), feeding tubes (orogastric, nasogastric, and surgically placed gastrostomy tubes: 64% vs 95%; P < .001), endotracheal tubes (60% vs 94%; P < .001), x-rays (40% vs 89%; P < .001), and the use of paralytic medications (8% vs 41%; P < .001) in infants who had palliative care consultations.
Infants who died in the hospital were more likely to have died in either the NICU or the PICU than on the general floor. A smaller proportion of infants died in the NICU or the PICU when a palliative care consultation was done (68% vs 97%; P < .001). Of the 25 infants who had a palliative care consultation, 17 died in an ICU, 8 died on the general floor, and none died in the emergency department. Of the 171 infants who did not have a palliative care consultation, 158 died in an ICU, 10 died in the operating room (of which 8 came from the ICU), 2 died in the emergency department, and 1 died after being transferred to the maternal postpartum floor from the NICU. Not only did a smaller proportion of infants who had a palliative care consultation die in an intensive care unit, but also these infants spent fewer total days of their admission in these units (6 ± 8 vs 15 ± 31; P = .002). This trend remained when a matched diagnosis was controlled for (6 ± 8 vs 14 ± 28;P = .01).
During the study period, 40 infants died while receiving cardiopulmonary resuscitation (CPR). CPR was performed on more infants who did not have a consultation than on those whose families did (29% vs 8%; P < .05; Table 4). After the Bonferroni correction, these numbers did not reach statistical significance. Of the 2 patients who had CPR and a family consultation, 1 had a consultation called the day before the arrest. The palliative care consultant had not met the family until the arrest, making it impossible to intervene regarding “do not resuscitate” (DNR) status. These 2 infants were included in the palliative care group, however, because of the consultant's continued involvement with the family's grief after the CPR attempt. In the other case, the consultation was made >1 month before the infant arrested. The palliative care service initially was called to help the family with grief and loss issues and to work on ways to bring the infant home. Of the 25 palliative care patients, 21 (84%) had documentation to forgo any resuscitation efforts compared with 101 of the 171 patients (60%) whose families did not have a consultation (P < .02; not significant after the Bonferroni correction).
In an attempt to evaluate the impact of the palliative care consultations on withdrawing or withholding of medical support, the chart review tool considers 4 particular interventions: 1) use of cardiac medications (dopamine, dobutamine, or epinephrine), 2) intravenous fluids, 3) all forms of nutrition, and 4) mechanical ventilation (Table 5). The tool distinguishes between whether there were documented discussions between physicians and parents about withdrawing or withholding these interventions, as well as documented decisions made after these discussions. Although it often was documented that discussions on withholding/withdrawing support occurred with a family, frequently there was no description of exactly which interventions were being withdrawn or withheld. The documentation was qualitatively better in charts with a palliative care consultation. There were no significant differences in intravenous fluid and nutritional support being withheld or withdrawn. The only infant who had feedings withheld was in the palliative care group. Infants who had palliative care consultations had more cardiac medications withheld (56% vs 13%; P< .001) but not withdrawn. Mechanical ventilation also was withheld in more infants who had palliative care consultations (28% vs 4%;P < .001), but again, there was no difference in withdrawal of ventilation.
Provision of emotionally supportive care, such as referrals to chaplains (64% vs 23%; P < .001) or social services (80% vs 30%; P < .001), was greater when a palliative care consultation had occurred (Table 6). Physicians and nurses more frequently documented the emotional status of families who received a consultation (92% vs 66%; P < .01), but this was not statistically significant with the Bonferroni correction.
This study characterized the end-of-life care given to all infants who were younger than 1 year and died in our hospital. A great majority of the infants died while continuing to get very aggressive support in an intensive care unit during their last 48 hours of life. Although most of the infants received narcotics, there seems to be a lack of other support and palliative services documented. We also described what effect, if any, our palliative care consultation service had on dying infants and their families. Despite that the use of the service increased during the 4-year period, most of the children and their families did not receive a palliative care consultation. This finding is consistent with Levetown's15 report that very few families are offered this service for their terminally ill children. Underutilization of palliative care also is reported in the pediatric oncology literature and occurs despite oncology patients', both pediatric and adult, being the predominant population of hospice users.16–18
There are many reasons that palliative care for infants may be underutilized. Traditionally, a palliative care service performs end-of-life care when there is no expected benefit in continuing curative therapies. Admitting that end-of-life care is needed is not a concept that is embraced easily.19 Authors have argued that medical education and organizations such as the American Academy of Pediatrics, American College of Obstetrics and Gynecology, and the American Medical Association traditionally have supported and often continue to be perceived as supporting the philosophy that all infants should be resuscitated aggressively.20–25 Palliative care is not what we think of first, if at all. What others have admitted is that treatment that does not produce a cure is considered a medical and, sometimes, even personal failure.26 This type of thinking may result in the underutilization of palliative care through denial that the infant will die or the belief that before letting an infant die, all medical therapies must be tried. Perhaps this is why the consultations occurred at a median age of 118 days of life and a median of 2.5 days before death. Physicians still practice under the traditional model of palliative care, which treats people who cannot be cured only at the end of their illness, as opposed to the model proposed by the World Health Organization and others, which consists of early involvement for those who are at risk of dying and increasing involvement if therapies are not working.27 ,28 Why or when a physician recognizes that palliative care may have a role to play needs to be explored further to define and prevent cases of inappropriate underutilization as well as late utilization.
Although we found a likely underutilization of our service—only 13% of the in-hospital deaths received a consultation—we found that the service was used increasingly during the study's 4 years. We do not know whether there have been times when nursing staff have requested or asked about a consultation and a physician or a family refused it, but we are not aware that any request for a palliative care consultation was refused by a parent when the physician asked for it. Utilization seems to be physician based. The number of physicians who request the service also has increased. This could be due in part to an increased awareness of the service among physicians, yet the service was in existence many years before the study. Another possible reason for this trend is a newly perceived benefit to the patient, the family, and/or the medical staff. This conclusion is strengthened by the fact that the number of consultations analyzed underestimates the total number requested, because 38% of the palliative care consultations resulted in an infant being discharged from the hospital with hospice care and therefore ineligible for this review.
The data suggest that there are 4 general areas that were affected by palliative care consultations: the 1) environment, 2) advance directive planning, 3) medical interventions, and 4) emotionally supportive services. The idea of making the hospital environment less technical has been around for many years. In 1982, Whitfield et al29 adapted models of adult hospice care to infants, such as changing the intensive care environment for dying neonates and their families. To varying degrees, Whitfield's ideas have been incorporated into how terminally ill infants and their families are cared for in many NICUs today, including ours. But should we settle for deaths in warmer intensive care units? When the palliative care service was requested, the infant's environment was more likely to be in a non-ICU setting. The infants with a palliative care consultation spent fewer hospital days in an ICU, and they died there less frequently. The possibility that these differences were due to differences in illness severity is mitigated by the observation that a significant difference remained when the primary diagnoses of the infants with and without a consultation were matched. Perhaps the biggest change in the environment occurred in the unstudied group of infants who went home as a result of their palliative care consultation. Although a home death is a significant change in the environment from the ICU, it is beyond the scope of this study to define that as “better” from the perspective of the infant or parents.
A second general category in which differences appeared involves advance directive planning. Despite no formally recognized advance directives for minors, this phrase from the adult literature describes a category of intervention that is offered to the infant's families. Examples of this include making decisions about withdrawing or withholding support (cardiac medications, intravenous and oral nutrition, and mechanical ventilation) and whether to withhold CPR. Of the 196 infants in the study, 40 infants died while receiving CPR and 11 infants died in the operating room with maximum support. This indicates that for a majority of the remaining infants, there was some decision to withhold CPR. The infants who had had palliative care consultations had fewer resuscitation attempts and significantly more withholding of cardiac medications and mechanical ventilation. This finding is consistent with what Wall and Partridge4 previously reported in the NICU population. From our data, it seems that palliative care consultants were able to apply advanced directive planning to the infant population, but to what degree the palliative care consultants influenced withdrawing or withholding treatment needs further clarification. It could be speculated that palliative care consultation was influential for decisions on withholding future therapies but may have been less influential in decisions about withdrawing.
The third category in which we found differences was medical interventions. We looked specifically at the last 48 hours of life in this category. We did not see a difference between groups in the use of narcotics. This is consistent with Partridge and Wall's30report of physicians' increased use and comfort level with using these drugs during withdrawal of support. We do not differentiate in our study whether the use of narcotics is for withholding or for withdrawing support. Because we found no difference in withdrawal of support but found differences in withholding of support between the groups, one could speculate that there is no difference in narcotic use because there is as much comfort in giving narcotics when withholding care when palliative care is involved as there is in giving narcotics when actively treating. What we know is that whether death is expected or not, narcotics are being used in the end-of-life care of these infants. However, more infants died while receiving paralytic drugs when they did not have palliative care consultations. Although there was no evidence that paralytic drugs were being started intentionally before withdrawal of support, as noted by Truog et al,31we found that the paralysis was not always stopped or allowed to “wear off” before withdrawal of support. The differences between these groups could be explained by a patient's acute worsening clinical status that leads to a sudden decision. It also could be explained from a late acceptance of death by either the parent or the medical staff. We know that our neonatologists and intensivists do not advocate the use of paralytic medication for the purposes of withdrawal of support.
Most important, we found that fewer blood draws, central lines, endotracheal tubes, feeding tubes, and x-rays were used in cases in which palliative care consultations occurred. The decreased use of these medical interventions illustrates that delivery of comfort care goes beyond just liberal narcotic use. Appropriately decreasing the use of noxious and invasive interventions as part of delivering end-of-life care is consistent with the philosophy of “do no harm.”32
Although the use of a palliative care service often is linked with decreased interventions and withholding of resuscitation, we found evidence that our service's usefulness was not limited to infants with established DNR orders. Neither ordering nor even considering a DNR order is required for palliative care involvement. Two of the infants whose families had palliative care consultations died after CPR failed to resuscitate them. In both cases, the palliative care consultant was involved in bereavement support and helped the family with the funeral arrangements. Lack of a DNR order did not negate the palliative care staff's ability to participate in end-of-life care, and it did not stop the consultation from occurring.
The fourth category in which the palliative care consultants had a significant impact was the use of psychosocially supportive interventions. Documentation of families emotional needs by the nurses and physicians tended to be more frequent when there was a palliative care consultation. This does not necessarily mean that supportive conversations or interactions were absent from the care of families that did not have these consultations; we can say only that less documentation of support occurred. In addition, there were significantly more chaplain and social service consultations for families with palliative care consultations. It is possible that a family could have had their own chaplain present, leading to a potential underrepresentation of the number of documented chaplain visits; however, the nursing staff usually noted those visits. Even when death was not the expected outcome, all of the study patients were at some risk of dying simply on the basis of their diagnosis, yet many did not have documentation of basic support services. Interviewing the families of these infants could give further insight into whether they believed that they were or were not emotionally supported by the medical staff.
Dependence solely on written documentation limited our ability to assess the discussions and issues addressed between the family and the medical staff. We were unable to elucidate an explanation for why consultations occurred for some cases and not others. We suspect that these issues may be as much a reflection of physicians' readiness or training in death and dying as they are a reflection of the patients and their families' readiness. One weakness of the study is that the groups are compared by diagnosis alone and without a measure of acuity. Although one could attempt to obtain Score for Neonatal Acute Physiology, Neonatal Therapeutic Intervention Scoring System, or Clinical Risk Index for Infants scores to measure acuity, the question is when to do the score.33–35 In addition, these scoring systems were not designed for this patient population or to predict any individual outcome. These scores also were not designed as tracking instruments over a period of time as observed in this study. Another potential weakness is that the study is a retrospective chart review, yet it is difficult to assess this type of clinical service prospectively. This would have to be done in a nonrandomized way with historical controls because although the families and patients could be randomized to receive or not receive a palliative care consultation, the staff nurses and physicians following both groups unblinded would likely learn and incorporate some of the palliative care skills and activities. In addition, if the hospital staff find the consultations helpful, then it would be unethical to withhold the service from some patients for the purposes of a randomized trial.
We found that infants who were younger than 1 year at the time of the study had an increase in the utilization of our palliative care consultation service. For infants whose families had a consultation, we found 1) the place of death to be more likely in a nonintensive care setting; 2) a higher incidence of withholding aggressive measures such as CPR, cardiac medications, mechanical ventilation, and other medical interventions; 3) no difference in the withdrawing of these medical measures; and 4) more frequent use of supportive care services. The differences found demonstrate a better death as defined by Emanuel et al.12 We believe that the use of palliative care consultation provides a way to improve the current end-of-life care that many terminally ill infants and their families receive. Even if a palliative care consultation service is not available, a focus on reassessing the patient's environment, advance directive planning, providing comfort measures, and limiting medical interventions, as well as providing families psychosocial support, could provide the infant and the family with an improved end-of-life care experience.
This project was supported in part by Grant 2201131 from the Perinatal Foundation (Madison, Wisconsin) and by Grant 2201166 from the Children's Hospital Foundation of the Children's Hospital of Wisconsin.
We thank Lyn Tummon for her contribution in chart review. We thank Drs Steven Weisman and Robert Kliegman for their encouragement and constructive criticism in the preparation of this manuscript. We also acknowledge the palliative care nursing staff for their professionalism and help in this project.
- Received October 16, 2000.
- Accepted January 19, 2001.
Reprint requests to (S.R.L.) 8701 Watertown Plank Rd, MS#213A, Milwaukee, WI 53226. E-mail:
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- Copyright © 2001 American Academy of Pediatrics