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Mind the gap: are NHS trusts falling short of recommended standards for consent to autopsy?
  1. Ime Eka1,
  2. Camilla Rowan2,
  3. Michael Osborn3
  1. 1Imperial College School of Medicine, Imperial College London, London, UK
  2. 2Department of Cellular Pathology, Royal Free London NHS Foundation Trust, London, UK
  3. 3Department of Cellular Pathology, Imperial College Healthcare Trust (St Mary's Campus), London, UK
  1. Correspondence to Ime Eka, Imperial College School of Medicine, Imperial College London c/o Dr Michael Osborn, Department of Cellular Pathology, 4th Floor Clarence Memorial Wing, St Mary's Hospital, London W2 1NY; ime.eka09{at}imperial.ac.uk

Abstract

The decline of the hospital autopsy is a well-known phenomenon that shows no sign of ending. Debate continues for the reasons behind this, but inadequate consent practices are thought to play a role. The furore resulting from organ retention scandals at Bristol Royal Infirmary and The Royal Liverpool Children's Hospital led to widespread soul searching in the medical profession, and a fundamental change in how we treat the dead body. In response, the 2004 Human Tissue Act was created, and consent is now centrally placed to permit all activities dealing with the cadaver, including autopsy. This article reflects on consent practices for hospital autopsy in England and Wales. Relevant policies from 26 National Health Service trusts were examined against the recommended standards set by the Human Tissue Authority. We found numerous failures of multiple trusts to follow these standards. Several trust policies failed to outline basic information to guide staff in conducting the consent process, such as the training requirements of the consent taker, and the desired approach to take consent. Many trusts failed to outline vital recommendations of the Human tissue Authority, such as the requirement of the consent taker to be experienced, trained in dealing with the bereaved and well informed on autopsy practice, as well as the requirement to have witnessed an autopsy. We recommend trusts reassess their practices in order meet the established standards with an emphasis on educating staff and developing a team-based approach to consent taking.

  • AUTOPSY PATHOLOGY
  • HEALTH SERVICES RES
  • POSTMORTEM

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Introduction

The autopsy (meaning ‘to see for oneself’) has played an integral role in the understanding and discovery of disease for most of the 20th century, and continues to have an important role in modern medicine.1 ,2

It is well documented that the autopsy has been in decline for decades.1 ,3 ,4 Falling hospital autopsy rates have been attributable to the majority of this change, whereas coroner's autopsy rates have remained relatively constant over this period.1 ,5 The reasons for this decline are complex, but past organ retention scandals, such as those stemming from the public inquiries of Bristol Royal Infirmary6 and The Royal Liverpool Children's Hospital,7 have played a part.4 ,8 These inquiries into child autopsy practice and organ retention led to a change in the legislation; under the Human Tissue Act 1961 it was only necessary to demonstrate a ‘lack of objection’ for postmortem (PM) examination and organ retention to take place.9 The creation of the 2004 Human Tissue Act (HT Act) ensued, which placed consent centrally for all PM procedures permitted under the act, including autopsy.10 A hierarchy of consent for autopsy was established:

  1. Consent from the deceased in life

  2. Consent from a nominated representative

  3. Consent from a person on the highest ranking qualifying relationship

    • Ranked from spouse/partner (top) to friend of long standing (bottom).

Altered public and professional views towards autopsy in the aftermath of the two inquiries are thought to have led to inadequate consent practice, further fuelling the declining autopsy rates. It has been shown repeatedly that increasing the number of requests to families can significantly improve autopsy rates,11 ,12 suggesting that currently there is a failure to realise the potential for higher hospital autopsy rates. Moreover, it has been shown that some National Health Service (NHS) trusts have been failing to comply with their statutory duties with respect to this issue.13

This article reflects on some of the methods for PM consent employed by trusts in England and Wales. We aim to identify potential areas of improvement and seek to answer these important questions: Are the consent processes employed by NHS trusts meeting the recommended standards? Are they suitable for purpose?

Methods

An internet search of the term ‘post mortem consent policy’ was performed in order to obtain NHS trusts’ policy documents. Policy documents were only included if they related to hospital PM examination in England and Wales and were aimed at staff members. For documents found that did not include information on PM examination, we contacted the trusts through their bereavement offices, the mortuary or their patient advice liaison service teams in an attempt to obtain the correct documents. Policies from 26 NHS trusts were obtained and analysed, using a combination of relevant policies for individual trusts where necessary. It must be acknowledged that some of these documents may have been updated since the time of acquisition.

Policies were analysed against Human Tissue Authority (HTA) guidelines as we assessed their suitability for purpose. From this, we came up with a series of questions which we believe are reasonable to assess whether the trusts policies were appropriate for both clinicians and relatives:

  • Does the policy fully explain the law behind consent to PM examination?

  • Does the policy explain the consent process for PM examination?

  • Does the policy explain which staff members should take consent for PM examination?

  • Does the policy explain the training requirements of consent takers?

Consent and the Human Tissue Act

Consent is a well established legal and ethical principle that, through common law and the Mental Capacity Act 2005,14 is required for any medical intervention in a living person to be lawfully performed.15 For medical intervention it is widely accepted that consent means a voluntary, uncoerced decision, made by a sufficiently competent or autonomous person on the basis of adequate information and deliberation, to accept rather than reject some proposed course of action that will affect him or her. Raanan Gillon16

Consent for activities on the deceased, however, has not always been a legal requirement. Under the Human Tissue Act 1961, it was only necessary to demonstrate a ‘lack of objection’ from relatives to lawfully perform an autopsy.9 Failure to take adequate consent in life may constitute criminal charges of assault or torts of negligence or battery;15 however, these charges do not extend to the cadaver, meaning there were no criminal sentences for breaching the 1961 Act. Since the HT Act, consent must be obtained from the individual in life, or failing this, from a nominated representative or a person in a qualifying relationship in order to perform any activities permitted by the Act. If breached, the Act allows a maximum penalty of 3 years imprisonment and a fine.10

Human Tissue Authority

The HTA was created by the HT Act, with its remit being to function as the regulatory body for all activities permitted under the HT Act, including autopsy. Despite consent being central to the HT Act, it is not defined in statute. Additionally, the HT Act specifies whose consent is needed, but it does not give guidance on the consent process, and this is where the HTA plays a pivotal role. It provides codes of practice which highlight what establishments should do to operate in accordance with the HT Act, and set recommended standards that should be followed by all establishments partaking in activities governed by the HT Act. Failing to comply with the codes of practice is not unlawful, but the HTA can take regulatory action if any breach of a code is found. Of the nine codes, the two relevant to PM examination include Code 1: Consent17 and Code 3: Post-mortem examination.18 They offer useful and comprehensive guidance to ensure the consent process is conducted in a sensitive and appropriate manner.

The HTA states that every hospital should provide staff with a documented consent procedure.18 It does not make specific references to what such policies must contain, but guidance is offered as to how the consent process should be undertaken with an emphasis to meet the needs of clinicians and the bereaved. It states that: Anyone seeking consent for hospital PM examinations should have relevant experience and a good understanding of the procedure. They should be trained in dealing with bereavement and in the purpose and procedures of PM examinations and they should have witnessed a PM examination … responsibility for obtaining consent should not be delegated to untrained or inexperienced staff. Human Tissue Authority.18

As hospital autopsies are performed increasingly infrequently, trusts can employ a small number of trained staff to assist clinicians in the consent process.

Suitability of trust policies

The HTA does not specify what must be contained in trust policies with respect to PM examination, but is clear about the nature in which consent should be obtained. When we assessed policies for their suitability for purpose (table 1), we found that:

  • One policy failed to fully explain the law governing consent to PM examination

  • 12% of policies did not outline a clear process of how PM consent should be obtained

  • 12% of policies did not specify which staff members should take consent for PM examination

  • 23% of policies failed to state the training requirements of those responsible for taking consent for PM examination.

Table 1

Summary of 26 NHS trust policies on postmortem (PM) examination analysed for their suitability of purpose

While there were examples of excellent policies which fully embraced the HTA guidance, several policies were very brief. In various institutions studied, PM examination was only discussed as a subsection in a ‘Consent to Examination and Treatment’ policy, and these tended to be far less thorough than policy documents dedicated to PM examination. One trust's policy failed to outline the hierarchy of qualifying relationships required for consent, instead only making reference to the HT Act. Moreover, 12% of policies failed to outline the consent process in full; for example, failing to describe when autopsy should be first suggested to families, or failing to outline which staff members should converse before the families would be presented with the consent form.

Approaches to PM consent

For the majority of hospital autopsies it will be the clinician who will make the request,4 but occasionally they may be performed at the request of the family, if the clinician is in agreement. Either way, as the HTA highlights,18 it is important for a member of the clinical team to be present so that the family can be supported by someone they have already established a relationship with. Due to the increasing scarcity of hospital autopsies carried out, trusts may employ a small number of trained staff members to support clinicians in the process, allowing them to effectively manage training of the individuals concerned. There is little evidence to suggest which staff members are most effective at taking consent for autopsy; however, some evidence suggests that staff members who regularly take consent can significantly improve autopsy rates.8 ,19 Nonetheless, the HTA highlights the importance of having a sufficiently trained and experienced individual involved in the consent process with a member of clinical staff, although it is possible for one clinician to possess all the required qualities.

When we analysed the methods employed by NHS trusts to take consent (table 2), we found that:

  • Only 65% of trusts followed a team approach

  • 12% of trusts followed a model that did not provide support for the clinician

  • 12% of trusts had no clear method for taking consent.

Table 2

Approaches to postmortem examination consent taking in 26 National Health Service trusts

While most policies outlined a team-based approach involving clinical staff and bereavement staff (such as bereavement officers, specialist nurses or similar), several policies were not specific as to who should take consent, for example, only mentioning a ‘healthcare professional’, while others had no documented approach for consent taking. Some policies however were excellent and extremely clear as to their specified approach.

Training requirements of consent takers

The General Medical Council requires all doctors to be trained in consent taking.20 Although clinicians who take consent should be aware of the requirement to be well informed on that procedure, as set out by the Department of Health21 and the General Medical Council guidance,20 the HTA is clear that all staff members involved with taking consent for PM examination need to meet additional requirements. They require staff to be sufficiently experienced and senior, trained in dealing with the bereaved, well informed on PM practices, and should have witnessed a PM examination.18 When we analysed trust policies by these criteria (table 3) we found that:

  • 35% of trusts had no requirements for consent takers to be sufficiently experienced

  • 58% of trusts had no requirements for consent takers to be trained in bereavement

  • 42% of trusts did not specify that consent takers must be well informed on PM practice

  • 69% of trusts failed to recommend that consent takers should have witnessed a PM.

Table 3

Training requirements for postmortem (PM) consent in 26 National Health Service trusts

Many of the policies analysed were vague in their description of their training requirements, for example, being ‘appropriately trained’. Several only had a requirement of ‘consent training’; neither scenario was considered to have met the HTA recommendations. Again, several policies were exemplary, in some cases going beyond the established guidance. For example, specifying that consent takers must have attended courses in equality and diversity, or they must be fully conversant in the trust policy.

Discussion

Given the sensitive nature of consent discussions, it is vital that the process is conducted in an appropriate manner. To aid the process, staff members need suitable guidance in the form of a policy to which they are familiar with and can follow. We found significant shortcomings in the trusts’ abilities to meet the recommended standards as set by the HTA for the consent process.

Consequence for families

By trusts failing to provide families with well informed and trained staff to conduct the PM consent process, there is a risk that the process could be performed to the dissatisfaction of all concerned. Tsitsikas et al12 highlighted that the general public are receptive to the autopsy if the process and its value are well explained; in a small study they demonstrated that by discussing the autopsy with all families of patients who died, a significantly improved autopsy rate could be achieved. Our findings have shown that some trusts are not emphasising the importance of having adequately trained members of staff involved in the consent process. Asking families to consent for their loved one's autopsy can be one of the most difficult consultations that clinicians face; if staff are not adequately trained and informed, it is less likely that families would have their questions answered and needs met, and therefore they may be less willing to cooperate. Ultimately, this could be contributing to the lamentable fall in autopsy rates.

Consequences for staff

Many clinicians have limited experience of PM examinations22 ,23 and may not be well informed on the laws behind it, so it is important that establishments provide clinicians with adequate background information in their policy documents. We found that several trust policies failed to outline key information to guide staff in conducting the consent process, such as which staff members should be consulted in the consent process, and the training requirements for those who can take consent. As it is usually the clinician who will request a PM examination, the aforementioned failures may lead to a lack of awareness of the autopsy in regular practice, resulting in clinicians being more reluctant to initiate the consent conversation.

Possible explanations

It must be acknowledged that the investigation described only looked at policy documents; therefore, what occurs in everyday practice may be quite different. Nonetheless, none of the trusts’ policies analysed were in breach of the law, which poses the question: Why was there such diversity in trust protocols?

The HTA is deliberately not prescriptive in order to allow establishments flexibility in achieving regulatory compliance.24 The HTA accepts that establishments may benefit from being able to tailor solutions to their individual needs, and a contrary stance could prove detrimental to the differing requirements of establishments. Consequently, this approach has led to the diversity in the standards of practice outlined by our investigation. The risk of this HTA stance is that it could be failing to prevent the drop in autopsy rates; with a current NHS environment of budget cuts and staffing restraints, it would be feasible for trusts to see PMs as an easy target to limit investment to the detriment of the medical profession. Hence it is vital for the HTA to uphold standards and continue to ensure that the consent process is always carried out in a satisfactory manner for all concerned.

Wider implications

In the early 1990s, a joint working party of Royal Colleges published a report highlighting concern at falling autopsy rates.25 Among the clinical benefits being lost, the autopsy was being used less in medical education—a trend that has continued,26 ,27 although it is still considered to have an important role here.28 Along with many other recommendations, the working party recommended that junior doctors should be trained specifically in seeking consent for autopsy; formal training of medical staff on this issue has been shown to increase autopsy rates.19 ,29 Significantly, most medical students and junior doctors have not witnessed a PM examination before,30 and remain unaware of the benefits that it can bring,22 ,23 ,26 despite the working party recommendations. It is essential for the future of the autopsy that its importance is taught early in medical training; it is the clinician who usually requests an autopsy, and if the junior doctors of today are failing to appreciate its benefits, the same will be true of the senior doctors of tomorrow.

Although the HTA stresses the importance of senior staff being involved in the consent process, the consequence of this stance could be neglect of junior staff. By omitting them from the consent process, there is a risk of junior doctors failing to gain relevant experience, and consequently failing to appreciate the value of the autopsy. Coupled with the aforementioned fall in its role in medical education, we could be heading toward a generation of doctors with little regard for the autopsy.

Recommendations

We recommend that trusts review their policies to encompass the team approach to consent taking as set out in the HTA guidance, with a clear emphasis on education. By employing small numbers of regularly trained staff to consistently be involved in the consent process, it allows the principles of the HTA guidance to be upheld, and could facilitate the continued training of clinicians and other interested parties. With respect to training of consent takers, we urge trusts to review their policies to meet the existing HTA recommendations. Within the policies analysed, some were outstanding, clearly going above and beyond the HTA recommended standards. We recommend that the HTA offers a model consent policy in the same way it provides a model consent form to assist trusts in ensuring the consent process is suitable for all concerned. With the future status of the HTA being unclear,31 it is vital for action to be taken now to set the standard for consent to autopsy, ensuring it will always be conducted appropriately.

Conclusions

The autopsy has played an important role in the medical profession for hundreds of years; however, its use is becoming increasingly uncommon. While the debate continues as to the reasons for this, it has to be accepted that the medical profession is contributing to the decline it so laments. In our snapshot of methods employed by trusts, we have demonstrated inadequate practices of autopsy consent in England and Wales; however, unless widespread audits and questionnaires are carried out, we will never be truly aware of the real processes employed by the NHS. Nonetheless, by embracing our recommendations and improving standards, it may prove to be just the tonic needed to revive an ailing ally.

References

Footnotes

  • Contributors The three authors are justifiably credited with authorship in accordance with the guidelines.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.