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Obstetrics & Gynecology 2001;97:994-998
© 2001 by The American College of Obstetricians and Gynecologists
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ORIGINAL RESEARCH

Provider Attitudes About Gaining Consent for Perinatal Autopsy

T. YEE KHONG, MD, DEBORAH TURNBULL, PhD and ALAN STAPLES, MEc

From the Departments of Obstetrics and Gynaecology and General Practice and Psychology, University of Adelaide; and Department of Histopathology, and Division of Paediatric Medicine, Women’s and Children’s Hospital, Adelaide, Australia.

Address reprint requests to: T. Yee Khong, MD Department of Histopathology University of Adelaide Women’s and Children’s Hospital 72 King William Road 5006 North Adelaide, South Australia Australia E-mail: ykhong{at}medicine.adelaide.edu.au


    Abstract
 Top
 Abstract
 Materials and Methods
 Results
 Discussion
 References
 
Objective: To examine the attitudes of neonatologists, obstetricians, midwives, and neonatal nurses toward perinatal autopsy and survey physicians about whom they perceive influence women’s decisions on autopsy consent.

Methods: A postal survey that incorporated a questionnaire of eight fictitious case scenarios and combined three factors (confidence of antemortem diagnosis, intention to have future pregnancy, and parental attitude toward autopsy) in various permutations was sent to various Australian physicians and nurses (all consultant neonatologists working in neonatal intensive care units and a sample of consultant obstetricians, midwives, and neonatal nurses in level III maternity hospitals). Respondents were asked to rate how likely they were to seek consent for or suggest autopsies on a seven-point Likert scale (1 = certainly will not, 7 = certainly will). Interactions between factors and respondents were measured by analysis of variance, and differences were compared using Mann-Whitney U, {chi}2, and generalized estimating equation tests.

Results: The overall response rate was 70% (neonatologists 57%, obstetricians 62%, midwives 77%, and neonatal nurses 75%). Neonatologists (median score 7, interquartile range 7, 7) were more likely to ask for autopsies than neonatal nurses (5; 2, 6) (P < .001), as were obstetricians (7; 7, 7) compared with midwives (6; 3, 7) (P < .001). Physicians rated midwives and neonatal nurses as having some to substantial influence on mothers’ decisions about consent for autopsy.

Conclusion: Physicians are not averse to seeking consent for perinatal autopsies. Midwives and nurses are influenced by the three factors studied, which might negatively influence the consent rate for perinatal autopsies. Intervention strategies aimed at changing nurses’ attitudes should be considered.

Perinatal autopsy rates are slowly decreasing and, in some centers, have fallen below the recommended 75% level.1–4 This decline is disturbing because examination after neonatal death, stillbirth, or termination of pregnancy because of antenatally diagnosed conditions is important for determining cause of death and effects of treatment, auditing diagnoses, and understanding disease mechanisms. Such examinations also might help with counseling for future pregnancies and with parents’ grieving process.1,2,5–7 Epidemiologic data and public health policies can be compromised by flawed data from death certification without autopsies,2,8,9 and it has been suggested that high numbers of perinatal autopsies are necessary for maintenance of skills of perinatal pathologists.10

Studies of adult autopsies indicate that failure to seek consent or to counsel appropriately is a major factor in the decline of adult autopsy rates from 70% to 80% to less than 20%.11 Mothers and their partners are as likely to seek advice about autopsies after perinatal losses from medical as from nursing staff because of the rapport between mothers and nursing attendants in delivery wards or neonatal intensive care units.12,13 Thus, our aim was to determine whether midwives, neonatal nurses, neonatologists, and obstetricians differed in their attitudes toward factors that might influence autopsy consent. This information is necessary for identification of target groups should intervention strategies be considered. We also surveyed physicians to see how much influence they thought other health professionals had on women and partners in their decisions on autopsy consent.


    Materials and Methods
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 Abstract
 Materials and Methods
 Results
 Discussion
 References
 
From the Australian and New Zealand Neonatal Network, a registry of all accredited neonatologists, we identified consultant neonatologists from Australia’s 23 NICUs. We used a cluster sample method to identify obstetricians, neonatal nurses, and midwives. To gather respondents from other health professional categories, we selected one hospital with a NICU from each state or territory. There was only one such hospital in two states or one territory (Tasmania, Western Australia, and Australian Capital Territory), whereas in the remaining four states we selected two with the most (New South Wales and Victoria) and two with the second-most (Queensland and South Australia) deliveries for each state. We invited all consultant obstetricians in those hospitals to participate, as well as all midwives in the delivery suite and birthing centers, and all neonatal nurses in the NICUs on particular days (24-hour periods). A different day was allocated for sampling each of the seven hospitals to reduce potential bias. Individual covering letters and questionnaires were mailed or distributed through heads of departments between August and October 1998.

The covering letter to physicians explained that the survey was intended "to study the factors influencing clinicians in seeking or not seeking consent for an autopsy" and asked the respondents’ "likelihood of seeking consent for an autopsy" for each of eight case scenarios. The covering letter to neonatal nurses and midwives explained that the survey was intended "to study your reaction . . . if the woman or her partner asked for your opinion of whether a postmortem examination should be performed" and asked the respondents’ "likelihood of suggesting an autopsy."

Questionnaires incorporated eight fictitious case scenarios that combined positive and negative values of three factors (confidence of antemortem diagnosis, parental attitude toward autopsy, and parental intention to have future pregnancy). Those factors were selected by a panel of obstetricians, a neonatologist, a perinatal pathologist, and a psychologist. We field-tested the questionnaires on a neonatologist, a perinatal obstetrician, a general practitioner, neonatal nurses, and midwives who did not participate further in the study. We designed the scenarios so that practitioners were likely to have encountered them clinically. Accordingly, scenarios were identical for obstetricians and midwives but different from those for neonatologists and neonatal nurses, who shared common scenarios. Below is an example of a scenario for obstetricians or midwives that incorporates negative value for confidence of antemortem diagnosis, negative value for parental attitude toward autopsy, and positive value for parental intention to have future pregnancy:

A 26-year-old gravida 2, para 1 nonsmoker for whom induced labor is scheduled for the next day presents after term with absent fetal movements for the previous 24 hours. After induced labor, she is delivered of a slightly macerated, normally formed male stillbirth weighing 3336 g and a normal placenta with some gritty calcification weighing 527 g. Cause of death is unclear. The couple are keen to have another child. They do not seem sure an autopsy will be helpful and appear not keen to request one.

Below is an example of a scenario for neonatologists or for neonatal nurses, showing positive value for confidence of antemortem diagnosis, positive value for parental attitude toward autopsy, and positive value for parental intention to have future pregnancy:

A 26-year-old gravida 2, para 1 woman ruptured her membranes at 18 weeks’ gestation. Oligohydramnios resulted, but the couple opted to continue the pregnancy. Spontaneous labor occurred at 24 weeks. The prognosis was discussed with the parents, and it was decided that the degree of resuscitation would depend on the physical state of the infant at delivery. After a short labor, a female infant weighing 465 g was delivered. Apgar scores were 1 and 3 at 1 and 5 minutes, respectively, with poor attempts at respiration. In view of the obvious pulmonary hypoplasia, active resuscitation was not attempted, and the infant died peacefully in the parents’ arms. The parents are keen to have another pregnancy. They appear keen to have an autopsy.

For each of the eight scenarios, we asked the respondents how likely they were to seek, in the case of physicians, or to suggest, in the case of nurses, autopsy consent by rating a seven-point Likert scale (1 = certainly will not, 7 = certainly will). We also collected additional personal data related to status, years since professional qualification, and gender. We also asked consultant neonatologists and obstetricians to rate on a four-point Likert scale, 1 being none and 4 being much, how likely various health professionals were to influence parents’ decision making on consent for autopsy. A reply-paid envelope was attached to each questionnaire. All questionnaires were anonymous and, accordingly, there was no follow-up of nonrespondents.

We analyzed interactions of the three factors and respondents by a nonparametric analysis of variance for neonatologists, obstetricians, and nurses (midwives and neonatal nurses). Where appropriate, we used {chi}2 and Mann-Whitney tests for associations between personal demographic details and responses. To compare responses between neonatologists and neonatal nurses and between obstetricians and midwives, we did the sum of each subject’s responses to the eight questions, calculated to yield a total score with a maximum of 56 points. The resulting scores were log-transformed so distribution of scores was normalized. A generalized estimating equation with robust standard errors was used to account for the clustering effect on hospitals to obtain estimates of the average total score.14 Data were analyzed using the GENMOD procedure in SAS (SAS Inc., Cary, NC).


    Results
 Top
 Abstract
 Materials and Methods
 Results
 Discussion
 References
 
The overall response rate to the questionnaire was 70% (neonatologists 65 of 114, 57%; obstetricians 56 of 90, 62%; midwives 133 of 172, 77%; and neonatal nurses 194 of 258, 75%). Table 1Go gives the median and mean scores for all scenarios. The response scores were different between obstetricians and midwives (P < .001) and between neonatologists and neonatal nurses (P < .001), even after adjusting for cluster effects using the generalized estimating equation model.


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Table 1. Likelihood of Seeking Consent (Physicians) or Suggesting (Nurses) Autopsy
 
For one scenario that had a positive value for confidence of diagnosis and negative values for parental attitude toward autopsy and intention to have a future pregnancy, additional information about pregnant women could have influenced responses of midwives. However, the median score of midwives for the remaining seven scenarios was 6 (interquartile range 4–7), which indicated that the erroneously presented scenario did not bias the midwives’ attitudes toward perinatal autopsy. That scenario had the least support from health providers, which strengthened the argument that the error in the scenario did not alter the overall outcomes for all eight scenarios for midwives.

Confidence of diagnosis was the most influential single factor for neonatologists, neonatal nurses, and midwives, but irrelevant on its own to obstetricians. Parental desire for autopsy, in isolation, was influential to all four groups. Parental intention for future pregnancy, in isolation, was of no consequence to neonatologists, but important to obstetricians and a minor factor for neonatal nurses and midwives. Although intention for future pregnancy and parental desire for autopsy were important for obstetricians, no response to any factor in isolation differed from the mean obstetrician response (analysis of variance tables not shown but available from the authors). The scenario that elicited the least support for an autopsy from all four professional groups was that in which the diagnosis was clear, the parents were not keen for an autopsy, and no future pregnancy was planned. The obverse scenario, in which there was uncertain diagnosis, desire for autopsy, and desire for future pregnancy, prompted the highest mean response from all groups.

Neonatal nurses with more than 10 years’ experience (median 5, interquartile range 2–7) were more inclined to suggest autopsy than those with less experience (median 4, interquartile range 2–6, Mann Whitney U test z = 2.53, P < .01), but no effect of experience was found with the other three professional groups. No effect of gender of the health professional on their attitude was found. Obstetricians and neonatologists rated other health professionals, with the exception of interns and residents in neonatal units, as somewhat or substantially influential in parents’ decisions about consenting to autopsy (Table 2Go).


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Table 2. Perceived Influence of Trainee Physicians and Paramedical Staff on Women and Partners
 

    Discussion
 Top
 Abstract
 Materials and Methods
 Results
 Discussion
 References
 
Seeking permission for a perinatal postmortem examination is difficult, and many factors influence the attendant’s decision to ask.13 We did not examine some factors, such as parental ethnicity, parity, gestational age at delivery, length of stay in NICU, possible litigation, availability of perinatal pathologist expertise, and reimbursement costs of autopsy because they have been the subject of previous research.15–18 Perinatal autopsies also are free to parents, and perinatal pathologic expertise is available in all hospitals with neonatal intensive care units in Australia. Instead, we studied attitudes of hospital personnel because of a dearth of research in that area, and we used a novel approach to study attitudes of physicians, midwives, and neonatal nurses toward perinatal autopsy. That method of fictitious histories to investigate influences of various decision factors has two advantages: by allowing respondents to show their attitudes in the form of role enactment, the gap between self-described and actual behavior is reduced; and the interactions between those factors can be studied.19–21 A lengthy questionnaire to accommodate the other additional factors in various permutations of their positive and negative values could have resulted in a lower reply rate. The resultant overall response rate was satisfactory for postal questionnaires of that nature without follow-up of nonrespondents and provides a valid idea of the prevalent attitudes among Australian practitioners.

Contrary to published data that indicated negative attitudes of clinicians toward perinatal autopsies,2,15,16 this survey showed that neonatologists and obstetricians were not averse to seeking consent for autopsy, and generally were not influenced by the factors studied. It is possible that social desirability bias might exert a small but pervasive effect and lead to a response set,22 as shown by physicians’ scores, but we negated that potential bias by seeking anonymous replies to questionnaires and examining attitudes of physicians, midwives, and nurses at the same time. Thus, the determinant for the perinatal autopsy rate would appear to be failure to grant consent by the parents rather than failure to seek consent by the medical staff. Neonatal care is centralized in specialist centers in Australia, but it would be of interest to conduct a similar study of the attitudes of obstetricians in nonspecialist centers.

The nurses’ lower mean scores indicate that they were influenced by the factors studied, which might affect consent giving negatively. In the delivery ward or the NICU, women and their partners often form a rapport with nursing staff because of extended continuity of care and might seek advice or counsel regarding autopsy.12,13 That observation is corroborated by the high rating given the influence of midwives and neonatal nurses by the consultant obstetricians and neonatologists. Although midwives and neonatal nurses might not see their roles as seeking consent, they might nevertheless face negligence claims when they do not communicate patient concerns to primary providers, and they must be knowledgeable about their duties in the informed consent process.23 Indeed, with changes in the physician–nurse relationships,24 nurses and midwives increasingly might obtain explicit verbal and written consent.25

Junior medical staff was perceived by physicians as having some influence on women and their partners, but only the senior registrar of the junior physician grades achieved a mean rating higher than the nurses. We did not study the attitudes of junior medical staff; therefore cannot say whether their influence likely was positive or negative.

This study suggests that strategies should be implemented to emphasize the value of perinatal postmortem examination to nursing staff. Preferably, such strategies would be broad-based; for example, the difference between neonatal nurses with more than 10 years’ experience and those with less is probably too small in real terms to warrant targeting specific sociodemographic groups. Interventions that are implemented need to acknowledge the growing consensus that diverse strategies are necessary and that the strategies should rely on more than passive dissemination of information.26,27


    Footnotes
 
Supported by the Adelaide Women’s and Children’s Hospital Perinatal Pathology Trust Fund. The authors thank Nicole Pratt for additional statistical assistance. Copies of the questionnaires and the analysis of variance tables are available from the corresponding author on request.

PII S0029-7844(01)01123-1

Received July 6, 2000. Received in revised form December 11, 2000. Accepted January 12, 2001.


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 Materials and Methods
 Results
 Discussion
 References
 
1. Landers S, MacPherson T. Prevalence of the neonatal autopsy: A report of the study group for complications of perinatal care. Pediatr Pathol Lab Med 1995;15:539–45.[Medline]

2. Cartlidge PHT, Dawson AT, Stewart JH, Vujanic GM. Value and quality of perinatal and infant postmortem examinations: Cohort analysis of 400 consecutive deaths. BMJ 1995;310:155–8.[Abstract/Free Full Text]

3. Khong TY. A review of perinatal autopsy rates worldwide, 1960s to 1990s. Paediatr Perinat Epidemiol 1996;10:97–105.[Medline]

4. Joint Working Party of the Royal College of Obstetricians and Gynaecologists and the Royal College of Pathologists. Report on fetal and perinatal pathology. London: Royal College of Pathologists, 1988.

5. Saller DN, Lesser KB, Harrel U, Rogers BB, Oyer CE. The clinical utility of the perinatal autopsy. JAMA 1995;273:663–5.[Abstract]

6. Faye-Peterson OA, Guinn DA, Wenstrom KD. Value of perinatal autopsy. Obstet Gynecol 1999;94:915–20.[Abstract/Free Full Text]

7. Rushton DI. Should perinatal post mortems be carried out by specialist pathologists? Br J Obstet Gynaecol 1995;102:182–5.[Medline]

8. Kirby RS. The coding of underlying cause of death from fetal death certificates: Issues and policy considerations. Am J Public Health 1993;83:1088–91.[Abstract/Free Full Text]

9. Duley LMM. A validation of underlying cause of death, as recorded by clinicians on stillbirth and neonatal death certificates. Br J Obstet Gynaecol 1986;93:1233–5.[Medline]

10. Doyle LW. Editorial: Effects of perinatal necropsy on counselling. Lancet 2000;355:2093.

11. Joint Working Party of the Royal College of Pathologists, Royal College of Physicians, and Royal College of Surgeons. Autopsy and audit. London: Royal College of Pathologists, 1991.

12. Khong TY. Improving perinatal autopsy rates: Who is counseling bereaved parents for autopsy consent? Birth 1997;24:55–7.[Medline]

13. Chiswick M. Perinatal and infant postmortem examination: Difficult to ask but potentially valuable. BMJ 1995;310:141–2.[Free Full Text]

14. Liang KY, Zeger SL. Longitudinal data analysis using generalized linear models. Biometrika 1986;73:13–22.[Abstract/Free Full Text]

15. VanMarter LJ, Taylor F, Epstein MF. Parental and physician-related determinants of consent for neonatal autopsy. Am J Dis Child 1987;141:149–53.[Abstract]

16. Cottreau C, McIntyre L, Favara B. Professional attitudes toward the autopsy. A survey of clinicians and pathologists. Am J Clin Pathol 1989;92:673–6.[Medline]

17. Maniscalco WM, Clarke TA. Factors influencing neonatal autopsy rate. Am J Dis Child 1982;136:781–4.[Abstract]

18. Landers S, Kirby R, Harvey B, Langston C. Characteristics of infants who undergo neonatal autopsy. J Perinatol 1994;14:204–7.[Medline]

19. Oppenheim AN. Questionnaire design and attitude measurement. London: Heinemann, 1984.

20. Elstein A, Shulman LS, Sprafka SA. Medical problem solving, an analysis of clinical reasoning. Cambridge, MA: Harvard University Press, 1978.

21. Start RD, Hector-Taylor MJ, Cotton DWK, Startup M, Parsons MA, Kennedy A. Factors which influence necropsy requests: A psychological approach. J Clin Pathol 1992;45:254–7.[Abstract/Free Full Text]

22. Bowling A. Research methods in health. Investigating health and health services. Buckingham: Open University Press, 1997.

23. Klepatsky A, Mahlmeister L. Consent and informed consent in perinatal and neonatal settings. J Perinat Neonatal Nurs 1997;11: 34–51.[Medline]

24. Salvage J, Smith R. Doctors and nurses: Doing it differently. BMJ 2000;320:1019–20.[Free Full Text]

25. Scholefield HA, Viney C, Evans J. Expanding practice and obtaining consent. Prof Nurse 1997;13:12–6.[Medline]

26. Rubin GL, Frommer MS, Vincent NC, Phillips PA, Leeder SR. Getting new evidence into medicine. Med J Aust 2000;172:180–3.[Medline]

27. Oxman AD, Thomson MA, Davis DA, Haynes RB. No magic bullets: A systematic review of 102 trials of interventions to improve professional practice. CMAJ 1995;153:1423–31.[Abstract]




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