Expert Perspectives: About Consent
Written by Mark Henrickson
This article is part of Eldernet’s Expert Perspectives series. The views and opinions expressed are those of the author and do not necessarily reflect Eldernet’s position.
Mark Henrickson is a person who wears many hats. He is currently a vicar in a small rural Anglican parish, and before this he spent over 20 years working as a professor of social work at Massey University. Mark has also worked as an international research consultant with agencies such as WHO and UNICEF.
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Note: This post is not intended as legal advice, but to encourage reflection on the ethics of consent in residential care contexts.
You may have recently heard in the news political conversations about consent. If you work in or interact with residential care, health or mental health providers, or just about any kind of human service or research with humans you will have encountered the idea of consent. The notion of consent requires
capacity
voluntariness
being fully informed
that it be ongoing, specific and active
We’ll review each of these in a moment. The question I would like to consider in this post is whether legal consent is adequate or appropriate in every situation that appears to require consent. We live in a risk-averse world, and institutions are not only concerned about protecting the people in their care: they are also interested in protecting themselves against complaints and legal actions by people who believe their rights have been violated or abridged in some way. In these days of citizen journalism and social media it makes business sense for facilities to be concerned about the reputational risk of being perceived as exposing someone in their care to harm. The question as to which of these protections—person or institution—is more important may depend on the institution and context.
Consent is more complex than it appears on the surface. When we apply consent to intimacy, sexuality, and relationships in a residential care setting, consent can become very complicated. To be on the safe side, risk-averse institutions are likely to encourage care staff to take the most conservative approaches. To be sure, facilities must ensure that people in their care are not exposed to predatory, physical, emotional or other risks. Such risks may not be as common as they are imagined or perceived. For cultural, religious or generational reasons, conservative approaches may simply be what some caregivers are most comfortable with, that conform to their own values. However, when caregiver values are imposed on residents, or decisions are made on residents’ behalf, these approaches may prevent residents from participating in life-affirming relationships. Example of such conservative approaches include requiring open doors to private rooms; walking into a resident’s room without knocking or waiting to be invited in; deliberately separating residents who appear to be developing a relationship; blocking adult internet sites; or unnecessarily consulting with family members about resident requests or activity. Conservative approaches may prioritise avoiding risk to facilities over the needs, wants or desires of residents. Fortunately, this kind of institutional risk management appears to be in decline in most facilities.
Elements of consent
Capacity asks whether we have the ability to consent. Often this is related to age: in Aotearoa New Zealand we set the legal capacity for consent to sexual activity at 16, although anyone under 16 can still consent to their own testing and treatment for a sexually transmitted infection (under most circumstances, using a standard called the ‘Gillick Competence’—but that’s not relevant here). If an individual has an intellectual, mental, or physical impairment, the law recognises that they may not fully understand what they are consenting to. An individual may not be able to verbalise consent. If an individual is intoxicated or affected by alcohol or drugs, or unconscious, the law says their capacity to consent is impaired. Dementias can raise questions of intellectual capacity to consent. We know that intellectual capacity associated with dementias is not consistent throughout the day, week or month, so an individual’s capacity to consent to intimacy may vary. The question of capacity is something to which we will return in a moment.
Voluntariness means that consent must be given completely freely. Consent obtained through force, threats, coercion, bullying or emotional pressure, deceit, trickery or abuse of any kind of power is not voluntary, and therefore is not valid. This is element where some facilities have concerns about so-called predatory behaviour by more powerful over less powerful residents.
Being fully informed means that an individual must receive adequate information to make a sound decision. This means that the person must understand the risks, benefits and the specific nature of what they are agreeing to. In the context of intimate relationships, it also means not being misled about the nature of the proposed activity, or the identity of the person. I know of a situation where facility staff were very concerned about an emerging relationship between a man and a woman, both in their late 80s. Both residents used wheelchairs and required staff to move them. They enjoyed each others’ company. Staff knew that the man had an old history of sex offending, the circumstances of which were unknown. Staff debated the risk to the woman and to the facility. They considered their responsibilities around legal consent: Should they speak to the man? Should they tell the woman about the man’s history (which probably would have violated the Privacy Act), and so ‘help’ her to be fully informed and able to make a truly voluntary decision about the relationship? Should they passively prevent the relationship by simply keeping the couple apart? We might begin by asking what the real risk here was: was he really likely to cause harm from his wheelchair?
Finally, ongoing, specific, and active agreement means more than not saying ‘no’. Consent Is not necessarily ongoing and may be withdrawn at any point; agreeing to an activity today does not mean that we agree to it tomorrow. Specific means that we agree to a particular activity, not one that follows it or is in some way connected to it. Active means that we must provide positive verbal or non-verbal communication; silence does not imply consent. While these criteria are not currently a legal requirement in Aotearoa New Zealand (that’s what the current political conversation is about), they are social norms and ethical expectations.
By now you are probably thinking to yourself ‘but what about…?’ and you would be quite right to do so. None of these elements is perfectly clear or consistent in all times, contexts and people. This is particularly the case in older persons whose capacity to consent varies. But here we also encounter the ability to express consent to specific things: if a person has never in their life enjoyed Brussel sprouts, they will most likely leave them on their plate in the facility dining hall even if they have become severely intellectually compromised. (They’ve also probably not prepared them roasted, with oil and a little garlic—yum!) Regardless of their impairment, they still have the capacity to express their lack of consent to eating the Brussel sprouts.
Further complicating this issue is the debate about whether intimacy and sexuality for older adults is a need or a right, and whether it is part of the responsibility of the care facility either to support intimacy or to protect the older person in care from intimacy. If I have a right to intimate touch, then what does that imply about consent, even if my ability to consent to intimacy seems (occasionally) impaired? If I am occasionally intellectually impaired but I still leave Brussel sprouts on my plate, what does that imply about my ability to consent to intimate touch, a hand held, a cheek stroked? Is intimacy so very different from decisions about other things I take (or refuse to take) into my body, even if I am intellectually impaired? If I live in in a residential care facility and develop an affection for another person, is it ‘wrong’ to want to be with them, to hold their hands or engage in intimate touch with them? At this point I’m sure some readers will be uncomfortable because of their questions about consent, but if I seek to hold their hand, they return my gaze and are apparently willing to hold hands with me, how is that not consent?
Now we can add the complexity that perhaps one or more of the participants in such a relationship is already committed to a long-term relationship with someone who does not live in the care setting, or has adult children who are opposed to their parent developing a new relationship. What, if any, are the responsibilities of care staff at this point?
It is not surprising, then, that care facilities may encourage their staff to take the most conservative approaches, regardless of the apparent consent of the people involved. They do this not only to minimise the risk of harm to the participants in the relationship, but also the reputational risk of an irate spouse, partner or adult child lodging a complaint that the institution was negligent in not preventing the relationship. Who wants to deal with that? It just means pain for everyone.
That is one reason why I think we need to be talking a lot more about intimacy and sexuality in residential care. We need to talk about these things at the point when someone enters care. Care facilities need to provide education about intimacy and sexuality not only to residents, but also to family members, partners and children early in the residential care journey. Regular workshops on sexuality and ageing are an idea whose time has come. Facilities also need to have structured support for family members if their spouse or partner develops affections for another resident. There are generations of now older people who have been taught not to talk about intimacy, that ‘sex is dirty and disgusting and you should save it for the person you love’. That approach isn’t helpful now, and it will certainly not be useful as new generations with different attitudes to intimacy and sexuality age into residential care. This will mean training up all staff to be non-judgmental and value neutral, at on-boarding, and throughout their careers, so that they are able to have conversations with residents and family members. This is part of person-centred care. What we know about such training is that we are unlikely to change attitudes, but we can change policies and behaviours in the workplace.
I am aware that I am proposing adding more to already stretched staff and budgets, but if facilities promote person-centred care, and nurses, social workers, occupational and diversional therapists say they practice person-centred care, what is so different about intimacy and sexuality that we can ignore it? Consent is complicated, and legal-only approaches set a floor, not a ceiling, for these conversations. Legal and risk-management approaches may protect the facility but may not be useful to support the health and wellbeing of the resident.
If you want to explore this issue in more detail, please see Schouten, V., Henrickson, M., Cook, C.M., MacDonald, S., & Atefi, N. (2021). Intimacy for older adults in long-term care: A need, a right, a privilege—or a kind of care? Journal of Medical Ethics, 48 (10): 723-727. https://doi.org/10.1136/medethics-2020-107171