Abstract
Introduction
In 1999 UK postmortem procedures were placed under a spotlight. During an investigation into the care of children receiving complex cardiac surgery at the Bristol Royal Infirmary, 1 it was disclosed that organs and tissues had been retained without the knowledge and explicit consent of the next-of-kin. This disclosure triggered inquires into the practice of other NHS Hospital Trusts and coroners' services. It was found that hearts, brains and other organs had been routinely removed at postmortem and stored for the purposes of further investigations, research and teaching. 2-4 By 2001, a nationwide census revealed that 105,000 organs, body parts or foetuses (referred to by parents as ‘preterm babies’) were held by pathology services. 5
These inquires raised concerns about the quality of information provided to families about postmortem examinations and a view that they may not have been specifically informed that postmortem could involve the retention of organs and tissues. 6,7 The Redfern Report, 2 which investigated postmortem practices at Alder Hey Children's Hospital, identified malpractice in the pathology service, confusion over the coroner's role and management failings in the Hospital and University, but perhaps most important of all, evasive and paternalistic attitudes towards bereaved parents, as well as a lack of bereavement support. These revelations sparked widespread concern among families, 8 with some 30,000 contacting the hospitals in which their babies, children or relatives had died, to ask if their organs had been retained. 9
Methods
This paper explores the impact of organ retention on parents who made enquires about their babies and children. The methods chosen to carry out this research aimed to gather a broad range of views. Recruitment decisions and data collection therefore comprised both geographical spread and specific local practices. The study took place during 2003-2004 following approval from the Metropolitan Multi-centre Research Ethics Committee (MREC03/11/034).
Recruitment of participants
Parents were recruited by one of two methods:
Parental peer support groups, two of which sent recruitment packs to members
(n=888) listed on their databases. A third support group
informed its members (n=2500) about the study through their
newsletter, requesting them to contact the researchers directly. Our representatives in two participating NHS Hospital Trusts.
The recruitment packs contained a letter of invitation to take part in an interview or focus group, an information sheet explaining the study aims, procedures and potential risks of participation, a reply slip and a stamped addressed envelope for its return to the researchers. Parents who replied positively (n=83) were contacted to discuss the study and arrange an interview or attendance at a focus group.
Procedure
Data were collected via qualitative interviews and focus groups. Interviews gave participants the opportunity to give an account of their experiences and share what was important to them. 10,11 Focus groups helped to tap into broader social concerns about organ retention. 12
Sixteen parents - mothers, fathers and three couples - self-selected to take part in semi-structured, one- to two-hour, audio-recorded face-to-face or telephone interviews. Interviews aimed to elicit their experiences of organ retention and the impact it had on their lives. The interview guide (see online data supplement) was revised as the study progressed, incorporating new insights gained from the interviews.
Three one-hour focus groups were attended by an additional 16 parents, self-selected from 67 invited to attend. Focus groups were held at two hotels in Liverpool and one in Manchester. Four parents from Birmingham and three from the South of England, unable to convene for a focus group, responded in writing to one focus group proforma (see online data supplement). Focus group discussions were structured around organ retention scenarios developed from interview data. Interviews were carried out by TL and focus groups by TL and MS.
Data analysis
Data analysis was an iterative process and took place simultaneously with data collection, thereby allowing data collection to remain sensitive to issues important to participants. 13 Interview and focus group data were transcribed verbatim. Line by line coding identified themes that illuminated the impact of organ retention on parents. Coding strategies were agreed after independent analysis of a sample of transcripts by TL and MS. TL continued to code transcripts independently and MS reviewed the transcripts and coding. Any discrepancies were discussed until agreement was reached. Hyper Research 2.6 (Research Ware Inc, Randolf, Mass. USA), a qualitative research software package, was used to store and work with transcribed data.
The researcher's field journal formed an ‘audit trail’ of the study, informed data analysis 14,15 and recorded the researchers' personal preconceptions and values so that any impact on the research could be monitored. 16
Findings
Participants
Twenty-five mothers and 14 fathers were recruited; of these, 45% were aged 40-49 years (Table 1).
Thirty-six babies or children were discussed in interviews or focus groups. Nineteen died before they were six months old, 14 died between 6-12 months of age, two between 18 months and two years old, and one at 10 years of age. The causes of death of the babies and children are listed in Table 2.
Most children died in 1970s and 80s, and the majority were boys (Table 3).
The impact of organ retention
All but one of the participants were prompted by news reports on the television, radio or in local newspapers to contact Hospital Trusts or helplines that had been set up to deal with their enquires. Findings showed that learning about organ retention raised four main concerns for parents:
The need for information about the retention of their babies' or children's
organs The difficulties experienced during their decision-making about the disposal
of retained body parts and tissue blocks and slides Their grief responses The opportunity to resolve outstanding bereavement issues.
Information about organ retention
Information about what had happened to their deceased babies and children was a primary need. A mother reported:
‘You need to be able to ask questions and have somebody to answer
them I think more than anything else, and to know that someone is there
to answer your questions, I think more than anything else.’
TLMS003446326, 46550
Participants had an expectation that NHS staff, by their choice of profession and training, would understand their ‘shock’,‘ horror’, and ‘devastation’ on hearing that organs had been retained from their baby or child. This was not the case for all, and three parents were made to feel that they were being unreasonable in their requests. The ‘drip feed’ of information, the waiting time for information, and the apparent reluctance of Trusts to work together where more than one hospital was involved had both practical and emotional consequences. Due in part to the perceived protracted timescales involved in information becoming available, nine of the parents interviewed (56%) reported feeling that Trusts were ‘obstructing’ them instead of helping them get the information they wanted, and therefore did not feel supported in their enquiry. A mother explained:
‘I mean the fact that it went on and on and on for so long. I think
the mismanagement of the information is one of the very major issues that
has to be addressed really. I mean no recompense can really ever be made
for the damage the emotional damage and trauma that was inflicted over
those months.’ TLMS00315084,15387
Parents' decision-making process with regard to disposal of the retained organs, bodies or blocks and slides
Parents could choose to keep, bury, cremate retained tissue or leave it with the Hospital Trust. The decisions that had to be made about the disposal of retained organs and/or tissue blocks, their return, interment or cremation had emotional consequences. A mother explains:
‘And of course it dawns on you that the possibilities open to you
will involve pain and re-opening of wounds, of you know your wounds. I
felt reluctant to change the status quo (leaving the organs and tissue
blocks at the hospital) because I knew that anything I did do, that we
did, would bring back all the memories of her death.’ TLMSAA0312479,
13071
There was evidence to show that differing views about what to do with retained organs, tissue blocks and slides between mothers and fathers impacted on their relationships. One mother attributed her divorce, and another the separation from her partner, to the stress and difficult decision-making imposed on them in response to organ retention. She said:
‘I don't think you think about the pressure it is putting you under,
but my partner couldn't deal with it at all...he couldn't really cope
with doing the whole thing again (re-internment).’ TLMS003011534,
11849
Whilst parents were offered choices about what to do with retained tissue blocks and slides, these choices were limited. Some cemeteries would not accept tissue blocks and slides for interment and some crematoriums would not cremate blocks and slides due to the possibility of damage to the cremator. Not being able to complete a dignified disposal for those parents who had chosen to bury or cremate their baby or child was an outstanding issue. For parents who decided to leave the tissue blocks and slides with the Trust, not‘ being involved’ in their future disposal led to anger and frustration.
Grief responses
A consistent theme throughout all participants' accounts was their dissatisfaction with the care they received at the time of their bereavement. Learning of organ retention appeared to plunge parents into a resurgence of their grief and a cycle of serial losses for their baby or child at the point of death; belief in the wholeness of their baby or child; emotional stability that had been achieved over the intervening years; and trust in the NHS and its staff. A mother said:
‘I was absolutely devastated cause even though you think you can
deal with it (making an enquiry) it was like, I suppose, what 16, 17
years after A had died and it was just like the whole thing was being
brought back out again.’ TLMS00377779, 8081
The lack of discussion regarding postmortem organ retention contributed to parents feeling angry and guilty. A father reported:
‘I also felt that I had let (name of child) down. I felt I'd really
let him down you know, we should really, as parents, we should have
stopped that (retention of organs).mums and dads are supposed to put
things right aren't they and yet again we let him down.’ TLMS003329978,
30343
Some parents had nowhere to vent these emotions; they reported feeling that no one had been made accountable and therefore these emotions continued to influence their daily lives. Five mothers (31%) interviewed reported psychiatric problems for which they received treatment.
Importantly, participants felt unacknowledged. Their role of being a parent was devalued as they felt that they were perceived to be making a fuss over something that was not really important. Participants wanted NHS staff to understand their feelings about the integrity of their baby or child's body and how devastating it was to know that their babies or children had not been disposed of ‘whole’. The issue of ‘dignity’ in relation to the care their baby or child received after death was now brought to the fore for these parents.
Some parents returned repeatedly to Hospital Trusts and the Commission, despite what the Trusts and the Commission felt was ‘complete disclosure’ of information and completion of the enquiry. Two sets of parents involved in the investigation had ongoing unresolved informational needs with Trusts. All participants were asked about their views of parents who returned to Trusts with questions. Participant responses suggested that returning parents did not believe the information provided about the disposal of organs or tissues and the ‘certitude’ that nothing else remained. Parents appeared to be seeking proof of complete disclosure. They were angry and sought retribution as an acknowledgement of their pain and what had been done to their baby, child or relative. A mother reports:
‘I'll rephrase that. I accepted compensation, (name of husband)
didn't want to do that but as far as I was concerned the only way I could
get them to pay in any way, to suffer for what they'd done to us, was
monetary.’ TLMSAA000620620, 21627
Parents described being ‘overwhelmed’ by their feelings of distress and anger and did not know who to turn to, and so continued to seek advice from Trusts and the Retained Organs Commission.
The opportunity to resolve outstanding bereavement issues
The publicity about organ retention did provide an opportunity for ten participants to resolve ongoing bereavement concerns, gain important information and put right issues that had caused them concern for many years. Three examples of these were: getting the correct explanation for the death of their child; being able to bury their baby; and learning the location of shared graves (commonly used in the past for the burial of stillborn babies or neonates) where their babies were buried. A mother reported:
‘For the first time in 30 years I have been able to put flowers on
my baby's grave.’ (written documentation nhss1)
Discussion
Principal findings
Findings indicate participants' perceptions were that they received little or no bereavement care at the time of the death of their baby or child. The subsequent awareness of organ retention plunged them into a resurgence of their grief. This had the effect of returning participants to the state of the newly bereaved, a sharp increase in the intensity of their distress 17 and consequent disruption to their everyday lives. The findings suggest that at the time of their children's death, parents wished to be given the opportunity to be involved in choices about the care of the deceased, what happened to the body, and needed support in making these choices. Such issues may also be important to the care of other parents and relatives of deceased children.
Organ retention appeared to disrupt relationships between parents, emphasizing the need for parental support. Effective bereavement support needs to address the impact of illness and death on parents and recognize that they need to be involved in decision-making. Recognizing that parents may not have the language or experience to make informed choices is the first step to enabling them to talk openly about issues and to make choices when faced with bereavement. Helping parents to explore their wishes in this changing process will enable them to determine the extent of their involvement in any decision-making at the end of life.
Strengths and weaknesses of the study
This is the only independent study to report on parents' experience of organ retention. The lack of adult cases we feel reflected the focus of public concern on organ retention following postmortems on children and the particular pain and loss that can follow the loss of a child. 18,19 This is borne out by the relatively low-key public response to the Isaacs Report, 20 which included details of the magnitude of retention of adult brains in the UK.
The organ retention crisis was clearly important to parents who made enquires. We do not know why others did not enquire. Parents who enquired about organ retention and for whom it appeared a major difficulty were in the minority. This assumption can be made as figures from one large NHS Trust show that there were 933 enquires related to the retention of children's and babies' organs for the period 1961-2003, during which 7,054 paediatric and prenatal autopsies were performed (i.e. only 13% of autopsies gave rise to enquiries). We therefore need to question whether or not those parents who enquired experienced particular difficulties surrounding the death of their children or whether they had a pre-existent vulnerability.
Comparison with previous research
This study suggests that there is a link between the quality of bereavement care reported by participants and the strength of emotion expressed in relation to organ retention. Therefore the context within which these deaths took place was an important factor. British society during the 1960s and 1970s generally devalued the existence of stillborn and other non-viable babies. 21 This social orientation was expressed by the use of shared graves and the evasive and paternalistic attitudes of medical staff commonplace in hospitals at the time. It was also compounded by the lack of information regarding postmortem procedures and organ retention and the cultural norms that influenced the experience and expression of grief. 22
Since the 1970s the management of the dying baby or child has changed radically. Parents are now encouraged to stay with their child at all times in hospital and are encouraged to spend as much time as they need with their baby or child after death. 23 Unlike the anonymized group burials in shared graves of the past, individual funerals are now held for preterm babies and infants. Changes in attitudes regarding what the loss of a baby, however early, means to parents have also occurred; championed by healthcare chaplains and groups such as the Stillbirth and Neonatal Death Society (SANDS), established in 1975. However, it is a concern that, with reference to Table 3, some families in the 1990s still appeared to be subject to antagonistic, insensitive and generally negative attitudes, 24 a lack of choice and inadequate bereavement support.
Policy implications
This research must be viewed within the constraints of the small, self-selected sample. Despite this, the views of participants articulated the needs of parents in relation to the death of their child or baby and post death procedures; issues which may have relevance to other parents in similar circumstances and in other countries. 25-27 The research was carried out in the last year of the Retained Organs Commission's term, when many parents had dealt with the issue of organ retention and the interest in family peer support groups and enquires to Hospital Trusts and the Commission was waning. However, there remained families with unresolved issues, some 2000 of whom brought a litigation test case against the NHS to the High Courts in January 2004.
Unanswered questions and further research
We were unable to recruit any participants from ethnic minority groups and their needs in relation to organ retention may be overlooked. Men were poorly represented in this study and some may have unmet bereavement needs, which could be in relation to organ retention. There is a need for a robust evidence base about the request, discussion and feedback of postmortem results. In light of the changes that took place during this study in clarifying the postmortem consent process, 28,29 parents' experiences and satisfaction with postmortem request, follow-up and feedback needs to be prospectively investigated in relation to both child and adult deaths.
Footnotes
DECLARATIONS