Including adults with intellectual disabilities who lack capacity to consent in research

Abstract

The Mental Capacity Act 2005 has stipulated that in England and Wales the ethical implications of carrying out research with people who are unable to consent must be considered alongside the ethical implications of excluding them from research altogether. This paper describes the methods that were used to enable people with severe and profound intellectual disabilities, who lacked capacity, to participate in a study that examined their experience of receiving intimate care. The safeguards that were put in place to protect the rights and well-being of participants are described, and it is argued that the approaches used in this study met the requirements set out in the Mental Capacity Act 2005. Although this paper is based on research involving people with intellectual disabilities, it has implications for research involving other groups who may also lack capacity to consent, including people with mental health problems, head injuries and dementia.

Keywords

Research ethics intellectual disabilities informed consent capacity to consent ethnography intimate care Mental Capacity Act 1995

Introduction

Certain groups of society have been particularly vulnerable to exploitation, and over recent history serious violations of rights have been committed in the name of research. The sterilisation, euthanasia and medical experimentation programmes that were carried out by the Nazis during the Second World War were among the most serious examples of unethical research that have been reported.¹ These atrocities were made public during the Nuremburg trials, and as a result the Nuremburg Code of Ethical Practice 1949 made it necessary for human subjects to give their voluntary consent. However, history has shown that the code failed to have an adequate impact on protecting vulnerable people because abusive research continued to be carried out without the consent of those involved.²

Paternalistic attitudes have tended to prevail, and have afforded researchers with the authority to make decisions about what should be researched and who should be researched on.^3,4 This culture has allowed decisions to be made based on a belief that research leads to the advancement of knowledge and is therefore ‘for the greater good’. At times this has been at the cost of the rights, well-being and autonomy of vulnerable groups, including people with intellectual disabilities.¹

As a measure to protect vulnerable people from exploitation, the UK Government’s Department of Health has placed an obligation on researchers to obtain participants’ informed consent.⁵ In relation to research, ‘informed consent’ means making a ‘reasoned judgment’ about participation, which must be based on having sufficient information about the research in order to make that judgment.⁶ In order for consent to be valid a person must be:

capable of taking a particular decision (competent);

acting voluntarily (free from undue pressure or duress); and

provided with enough information to make the decision.⁶

Although these requirements can be seen as necessary to protect an individual’s right to autonomy, they can also present a barrier to certain groups being involved in health and social care research. As Gelling⁷ has pointed out, this is problematic because excluding a particular group from research deprives them from the knowledge and understanding gained through such research. This could be perceived as discriminatory and disempowering.

In the UK, the Mental Capacity Act 2005 was introduced to provide a statutory framework to protect and empower vulnerable individuals who are unable to make their own decisions. The Mental Capacity Act 2005 is subject to compliance with the European Convention on Human Rights, which, in the UK, was given effect to by the Human Rights Act 1998. Of particular relevance to observational research are Article 8 (protection of privacy) and Article 3 (prohibition of torture, inhuman or degrading treatment). The Mental Capacity Act 2005 enshrines in statute best practice concerning people who lack capacity, and therefore the principles discussed in this paper are relevant internationally.

The Mental Capacity Act 2005 states that the test for assessing competency, or in other words whether a person lacks capacity, is functional. It looks at the decision-making process and at the specific matter about which the person is required to make a decision. To have capacity to make a decision a person must be able to comprehend and retain information material to the decision, and use and weigh up this information in the decision-making process. However, the Mental Capacity Act 2005 also makes it possible for a person who lacks capacity to be included in research if it can be shown that participation is in his or her best interests. This study provides an example of how an assessment of best interests can be made to allow a person, who lacks capacity to consent, to be included in research.

Background

This paper is based on a PhD study, which aimed to address the research question, ‘How do people with severe and profound intellectual disabilities experience intimate care?’ The findings of this study have been reported elsewhere and have widespread implications for nursing and social care.^8
–10 Before research with human participants can commence, ethical approval must be received from an appropriate body.¹¹ Thames Valley University’s Faculty of Health and Human Sciences Research Ethics Committee was responsible for reviewing this research. The chair of the committee responded to the proposal application with a letter requesting further ‘consideration and clarification’ on a number of points. With regard to the issue of obtaining consent from people with severe and profound intellectual disabilities, the committee required more extensive work to be carried out to develop a plan of action for how this issue would be addressed.

A plan was developed and clarification of the issues raised by the ethics committee was provided, and subsequently approval was granted. The local NHS ethics committee confirmed that it was not necessary to apply for NHS ethical approval because this research did not involve participants within NHS settings. Furthermore, although in June 2009 of the national Social Care Research Ethics Committee began operating in England, at the time of this research there was ‘no system comparable to long established NHS Research Ethics Committees. Options for ethics review of social care research are under consideration’ (p. 42).¹¹

The approval of the university’s ethics committee was therefore sufficient for the research to proceed. The ethics of consent raised by this study were also the subject of a paper presented at a Royal College of Nursing Research Conference,¹² at which valuable feedback was given by peers.

This ethical review was an important part of the research process because the advice and feedback given contributed to the quality of the ethical standards and the rigour of the procedures that have been used.

Severe and profound intellectual disabilities

The term ‘severe and profound intellectual disabilities’ is used in this paper to refer to people whose intelligence quotient, if measurable, would be below 34. Many people with profound intellectual disabilities have additional physical and sensory disabilities and mental health problems,¹³ and in the UK these people have often been referred to as having ‘profound and multiple learning disabilities’. These people often have no formal language skills and they may require constant support and supervision in all aspects of their lives, including intimate care.¹⁴ Intimate care is therefore likely to impact on quality of life, not least because bathing, washing and continence care can take a lot of time on a daily basis. Despite the importance of this area of care, it is one of the most overlooked themes in academic research and policy, and this is partially because of difficulties in obtaining consent.

The little research that has previously been carried out has therefore focused on the perspectives and experiences of care-givers and people who are able to articulate their views and opinions.^15,16 However, there are limitations with drawing inferences from the experiences of other groups and applying those inferences to people with severe and profound intellectual disabilities.^17

–21 This research therefore aimed to gain an insight into how being dependent on others for intimate care is experienced by people with severe and profound intellectual disabilities.

Method

This aim posed a methodological challenge because, despite the range of augmentative communication approaches and devices available, people with severe and profound intellectual disabilities were unable to act as direct informants. Therefore, to get as close as possible to understanding experiences from the perspective of a person with severe and profound intellectual disabilities, it was necessary to observe intimate care directly.

A qualitative study was designed using methods of participant observation, staff interview and document analysis. Participants were selected using purposive sampling and data were collected at two residential homes and included the participation of six adults with severe and profound intellectual disabilities and 17 staff.

Lai et al.²² have pointed out that there can be a conflict between the need to protect vulnerable people and ensuring that the benefits of research are equally distributed throughout the population. For this study to go ahead, rigorous safeguards needed to be in place for selecting participants and dealing with issues of consent, in a way that protected rights and well-being. In order to do this it was necessary to make an assessment of what was in each participant’s ‘best interests’.

Best interests, benefit and risks

For the purposes of this research, Beauchamp and Childress’s²³ ethical framework has been used to weigh up the risks and benefits of participation in relation to the risks and benefits of non-participation.

Nurse researchers must strive to meet ethical standards that are associated with the principles of autonomy, justice, beneficence and non-maleficence; however, the implications of each principle can be in conflict, which may leave a researcher with a dilemma of having to choose which should be prioritised above others.²⁴ For example, in relation to this research, the principle of justice suggests that people with severe and profound intellectual disabilities should have the opportunity to benefit from participation in research, but the principle of autonomy might suggest that individuals who lack capacity to consent should not be involved. The framework can therefore not be used as a straightforward formula, but it is useful for helping to focus the researcher’s mind on the ethical dilemmas that need to be considered when undertaking research with human participants.

The National Bioethics Advisory Committee²⁵ has suggested that participation in research can bring both direct and indirect benefits. The direct benefits of this research could have included potential for improved quality of intimate care, and the indirect benefits might have included ‘diversion from routine, the opportunity to meet with other people and to feel useful and helpful, or greater access provided to professional care and support’.

The benefit of developing a relationship with a researcher was particularly relevant for people with severe and profound intellectual disabilities whose social lives may be impoverished and who are less likely to access professional care and support.²⁶ The idea that participants can benefit from the researcher contributing in some way to their lives has been referred to as a ‘trade off’.²⁷ In this research, one potential benefit could result from the researcher helping out with chores, such as preparing meals and cleaning, and therefore freeing up more time for staff to spend with service users. The managers of both homes also thought that the research could lead to improved standards of care by prompting discussion and providing opportunities for staff to engage in reflective practice. In addition, the staff team were offered feedback at the end of the research and facilitation of staff discussions related to the research findings, which had the potential to lead to improved practice. Arguably, some participants may have gained an intrinsic reward from contributing to the advancement of knowledge that had the potential to benefit other people whose lives are affected by intimate care.

Having considered the potential benefits of participation, consideration needed to be given to the potential risks that this research presented. It was difficult to quantify the risks involved in this study because the methods used were non-invasive and presented no obvious or significant risk to physical safety. However, the method of observation did involve a violation of privacy, and this meant that there was a risk of causing participants to feel uncomfortable, embarrassed or distressed.

According to the Mental Capacity Act 2005, research should not impose a burden disproportionate to the potential benefits. Guidelines provided by the International Association for the Scientific Study of Intellectual Disabilities (IASSID) have recommended that ‘any risk should not exceed those that are attached to the provision of routine support or therapy, medical or psychological treatments’.²⁸

Little is known about how lack of privacy affects people with severe and profound intellectual disabilities, but it is thought that even if people are accustomed to receiving intimate care we cannot assume that they do not experience embarrassment or distress.^16,17 A major concern in this research was ensuring that observations did not add any further violation of privacy, and did not cause any distress or harm. This was an issue that was often discussed during supervision. It could be argued that the researcher’s presence would present no additional embarrassment or distress than was the norm. This is because the people who were asked to participate in this study were accustomed to different people being involved with the provision of their intimate care, and with more than one person being present during intimate care, for example when conducting inductions for new members of staff. Although this research did involve an infringement of privacy, as previously stated, one of the reasons for carrying out this research was, paradoxically, to try to gain an insight into how those who depend on others for their intimate care experience such care.

In summary, the sensitive and private nature of this research meant that it was of paramount importance to carry out rigorous assessments to determine best interests by weighing up the relevance of the risks and benefits for each individual participant. In order to obtain a valid assessment of best interests, the processes in this research included gaining ‘consent by proxy’ and assessing indications of ‘implied assent’.

Consent by proxy

Consent by proxy means giving consent on someone else’s behalf. An important difference between involving children and involving adults in research is that, whereas parents or guardians can provide consent for their child, ‘no-one (not even the person’s parents, or others close to them) can give consent on behalf of adults who are not capable of giving consent for themselves’.⁵

However, Gelling⁷ has argued that it is best practice to seek proxy consent, and the Mental Capacity Act 2005 has recognised that consultation with parents and family is an important and necessary part of deciding whether adults who lack capacity should be involved in research. This view has also been endorsed by IASSID.²⁸ The ethical validity of including parents and family in decision-making rests on an assumption that people who lack capacity would want their carers to make decisions on their behalf.

The ethical validity of consent by proxy also relies on the ability of proxies to make decisions that are in the individual’s best interests. Iacono and Murray²⁹ have reviewed the sparse amount of research that has attempted to determine the basis upon which proxies make decisions about consent to research or medical treatment. They have concluded that proxies do make decisions based on what they think is in the person’s best interests, and also on what they think the individual’s preferences or wishes might be. Involving more than one person in providing consent by proxy has also been thought to provide a more valid judgment of the person’s best interests.²⁰

In this research, it was therefore important to identify the most appropriate people to give consent by proxy. Ideally, this would have involved identifying people who knew the individual well and were most likely to be concerned for their best interests. However, many of the participants did not have relatives or friends who could provide this input, nor did they have either citizen or paid independent advocates. Research has shown that many people with intellectual disabilities have limited unpaid support networks.^26,30 Identifying proxies for this group of people is therefore problematic. IASSID has suggested that when family members cannot be consulted, collective professional decision-making can be more effective in safeguarding participants’ best interests.²⁸

Consequently, in this research, the people consulted included the home manager, key worker, other members of the staff team, a care manager and a community nurse. These people were given a copy of an information sheet containing details about the research and were provided the opportunity to meet with the researcher to discuss the proposed research and ask questions.

The staff, manager and professionals who provided consent by proxy were found to be very cautious when making a decision, and this could have suggested that they did not take the decision lightly. Decisions by proxies were backed by logical explanations and rationale, and this was evident from the way they discriminated between service users who they thought would not want to be involved and those who might. Proxies were keen to ensure that the research would benefit participants by providing services with information that could lead to better quality and more individualised care. All of the proxies consulted were in agreement when deciding who should participate.

This method of obtaining consent by proxy was not without limitations. One problem is that ‘best interests’ is a complex and subjective concept that cannot be assessed objectively. Furthermore, ideally, if resources had permitted, someone who was independent from the research would have coordinated the processes involved in obtaining consent by proxy. As this was not possible, strategies were employed to reduce the influence of the researcher’s opinion on the proxies’ decision as much as possible. This included providing detailed information about the research and advising proxies that if they had any inkling that participation might not be in the person’s best interests, they should make their concerns clear. In addition, every proxy had to agree that participation was in the individual’s best interests in order for them to be included. Strategies that are thought to make a researcher’s actions open to scrutiny were also employed, and these included keeping an audit trail and discussing issues with academic and professional colleagues for opinion and feedback.³¹

The limitations involved in using consent by proxy meant that it was important to check that the ‘right’ decision had been made, and therefore rigorous methods of assessing ‘implied assent’ were also put in place (Figure 1).

Implied consent and implied assent

Capacity to consent is a legal construct based on an individual’s ability to meet the criteria identified earlier in this paper. Dye et al.³² have argued that this construction has led to a ‘single dichotomous categorisation’, whereby an individual is assessed as either having or not having capacity to consent to a particular decision. According to Dye et al.,³² this does not serve to empower people with intellectual disabilities because, inevitably, someone else makes decisions on their behalf. It is therefore incompatible with models of research practice that combine participant research with empowerment and self-advocacy.

Dye et al.³² have proposed that it would be more helpful to present the concept of capacity to consent within a broader contextual framework and that the seriousness of consequences should determine the level of capacity needed. Therefore, if participants have been assessed as lacking capacity to consent to research, they may be able to effectively demonstrate capacity if their behaviour is assessed over time. In a similar vein, Knox et al.³³ have suggested that consent should be seen as an on-going process.

In a clinical context, using a person’s behaviour as a sign or expression of their compliance is referred to as ‘implied consent’. An example of this could be when a person holds out their arm to have an injection. Applying this to a research context, Sachs et al.³⁴ used the term ‘assent’, which referred to the willingness of the subject to go along with, or not object to, a proposed study. The term ‘assent’ more accurately applies to this study because participants’ behaviour was regarded as an indication of their willingness to go along with what was happening and was not taken to mean that they were giving their consent to participate in the research. Slaughter et al.³⁵ have proposed that the ‘assent or dissent of vulnerable research participants must be assessed and integrated into research protocols’ (p. 37).

By assessing implied assent in this study, the intention was to try to empower participants by allowing them to have as much control as possible over their participation. This is clearly not a full empowerment, because to be truly empowered individuals would have needed to have capacity to make the decision, but assessing implied assent was thought to be an important step towards promoting autonomy.

The use of implied assent has been endorsed by the Mental Capacity Act 2005, which has made it clear that even if a person lacks capacity to consent he or she must not be excluded from the decision-making process. The method is also consistent with IASSID’s recommendation that when participants are unable to give fully informed consent, a mechanism of ‘process consent’ should be formalised.²⁸ The procedure for assessing implied assent was therefore carried out, not as a one-off event, but as an on-going process that continued throughout the course of the research. This involved assessing the individual’s non-verbal communication and his or her responses to the research and the researcher. It is important to acknowledge that there is a difference between assenting to being observed and allowing the data collected from those observations to be used in the context of a research study. This is one of the reasons why obtaining implied assent was not sufficient to allow a person to participate, and why it was also necessary to obtain consent by proxy.

The first stage of assessing implied assent was to determine whether the researcher had developed rapport with the participant. This began before observations of intimate care commenced by members of the staff team, and was based on interactions during initial visits to the homes.

Assessing implied assent relied on having a good understanding of the meanings of participants’ facial expressions, behaviours and vocalisations. The validity of implied assent rests on an assumption that it is possible to interpret facial expressions, vocalisations and behaviours as meaningful communication.³⁶ Some research has suggested that it is possible to make valid inferences based on the non-verbal communication of people with severe and profound intellectual disabilities, and also that carers are intuitively skilled at identifying distress cues.^36
–38 However, the use of implied assent is problematic if observers do not make the correct inferences, and in a study by Grove et al.³⁹ it was found that observers sometimes made invalid inferences. Hogg et al.⁴⁰ have also found that observers showed significant variation in judging communication of affect. These findings highlight the subjectivity of assessments of implied assent and that caution should be taken when interpreting the meaning of non-verbal behaviours.

Communication passports and communication profiles

In this research, communication profiles were used as tools to help assess implied assent, and these were based on the idea of ‘communication passports’. Communication passports contain easily accessible information that enables people to understand and interpret non-verbal communication.⁴¹ At one of the homes, communication passports were in place prior to the commencement of the research, which could be used to underpin assessment of implied assent. However, at the other home, time needed to be devoted to developing ‘communication profiles’, which involved compiling information about participants’ communication from staff, the people who had provided consent by proxy, and speech and language therapists’ assessments.

Communication passports and profiles showed that participants had clear ways of communicating when they were not happy and revealed that staff believed that they were able to interpret non-verbal communication well. Examples given of service users demonstrating dissent or unease included biting their fingers, throwing objects, scrunching up the face and nose, lashing out, pushing and screaming.

The communication profiles and communication passports therefore included details of the behaviours that service users demonstrated when they were thought to be unhappy or distressed and were used as a guide to help to interpret participants’ responses throughout the research. If participants had shown signs of being distressed or unhappy as a result of being observed during intimate care, then the research would clearly not have been in their best interests and they would have been withdrawn (Figure 1).

The process of assessing implied assent continued throughout the entire period of participant observation. During staff meetings, feedback was requested on views about how participants were responding to my presence and to being observed during intimate care. However, all of the participants were thought to respond positively to the research, and no reason was given to suggest that their participation should cease.

Conclusion

Making an assessment of ‘best interests’ allowed for people with severe and profound intellectual disabilities, who lacked capacity to consent, to be included in a research study. Arguably, this can be seen as empowering because the research made important findings about their experience of intimate care, which had implications for improving practice and policy. It is recognised that people who lack capacity to consent could be further empowered as our understanding of this group develops. For example, the development of instruments for measuring emotion and mood of people with severe and profound intellectual disabilities, such as the Interact Short Form,⁴² may help future researchers to make more valid assessments of implied assent. However, this paper has described approaches that meet the requirements of the Mental Capacity Act 2005, and which are also in accordance with current ideas about what is best practice. This paper therefore has valuable implications for nurse researchers and other professionals internationally. The number of adults who lack capacity to participate in research, owing to conditions such as intellectual disability and dementia, is increasing, as medical technology advances and health care improves. These people are often in the most need of health and social care services, and therefore it is imperative that lack of capacity to consent does not prevent people from benefiting from research, but rather that robust research is carried out to examine how services can best meet their needs. The paper has given specific examples of strategies and procedures that can be used to enable research to be carried out with people who are unable to consent, while maintaining ethical standards.

Footnotes

Funding

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Conflict of interest

The author declares that she does not have any conflict of interest.

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