By Magdalena Furgalska – 5th November 2020
At the moment, the law in England and Wales permits a person who (under the law) has relevant mental capacity to make an Advance Decision to Refuse Treatment in advance of a time when they lack the capacity to make such a decision for themselves (ss. 24-26, Mental Capacity Act 2005). But what of people who wish to consent to treatment in advance?
A recent Court of Protection hearing (described in a blog post by Celia Kitzinger here) concerns a young man she calls “Paul” who has a diagnosis of “emotionally unstable personality disorder” and is living with end stage kidney disease. His capacity to consent to (or refuse) treatment fluctuates. In order to stay alive, Paul needs to receive regular haemodialysis – and he does want to stay alive, not least to spend time with his child. When Paul is not in mental health crisis (the ‘well Paul’) he complies with his kidney treatment. When experiencing mental health crisis, the ‘ill Paul’ resists haemodialysis – stating that he wants to die. For some time, medical professionals have administered haemodialysis to ‘ill Paul’, believing it to be in his best interests. But this causes distress and trauma to medical professionals and to Paul himself as administering dialysis contrary to ‘ill Paul’s’ wishes requires that they restrain and sedate him (with associated psychological and medical risks). The decision faced by the court was whether or not it was in Paul’s best interests to continue administering dialysis when (lacking capacity) he refuses the treatment.
In her blog post, Celia Kitzinger points out that such difficult ethical and practical dilemmas are commonplace for patients with fluctuating mental capacity. She notes that sometimes doctors do choose to follow incapacitous refusals over forced treatment. She also explores the potential of ‘advance statements’ in which a person can set out their preferences for receiving medical treatment in advance of a time when they may lose capacity to consent to such treatment (noting their legal limitations). “Advance consent” is not currently lawful in England and Wales. She also points out that, in the absence of legislation providing for ‘advance consent’, any decision to respect ‘well Paul’s’ statement that he wants to be given the treatment he declines when he is ill must be a decision made by others in Paul’s best interests, rather than Paul’s own autonomous decision. His stated wish to consent to treatment in advance is not determinative.
Voices of Psychiatric Survivors
Advance consent to treatment is a live issue for many psychiatric survivors who (when well) want to receive treatment that they know they have a history of refusing when ill. People may also wish to make advance consent to treatment when they are worried that their fluctuating capacity means they might not be able to make independent decisions. I’ve interviewed twelve self-identified psychiatric survivors (7 female, 4 male, 1 non-binary, age range 27-72, representing a diverse range of diagnoses) for my PhD research on ‘Achieving Social Justice for Psychiatric Survivors: Capabilities and Advance Consent to Mental Health Treatment’. My findings suggest that the opportunity to give formal advance consent to treatments would be welcomed by some psychiatric survivors and has the potential to improve treatment experiences for people who might be in a situation similar to Paul’s.
Some other legislatures already permit advance consent e.g. India (s.5 of the Mental Health Care Act 2017) and the longest-standing example of such legal recognition of advance consent in the world: British Columbia, Canada (s.19 of the Health Care (Consent) and Care Facility (Admissions) Act 1996). However, regardless of whether advance ‘consent’ is legally enforceable in a given jurisdiction, a review of evidence suggests that it is a desirable mechanism for many psychiatric patients – who try to find a way to incorporate it into their advance directives. In Scotland, Reilly and Atkinson (2010) found that of 55 advance directives made by psychiatric patients that were presented to the Mental Health Tribunal, 45% contained attempts at advance consent to specific medications; while in the U.S. 93% of the psychiatric advance directives in a 2006 study by Swanson et al contained advance consent to treatment. Psychiatric survivors’ attempts to make an advance decision to consent to treatment suggests that the law might have some ‘catching up’ to do.
What does my research tell us?
Most survivors I interviewed were very clear about their desire to be able to consent in advance to treatments they have previously refused or are likely to refuse when unwell. E.g. one participant – I will call her Lucy, has a diagnosis of schizoaffective disorder. When experiencing mental health crisis, she has previously refused treatment because voices tell her to do so. If she does not follow the guidance from the voices, they threaten to kill her mother. Lucy says that her mental capacity has not been questioned in some of those instances of mental health crisis because she has learned how to present well, and she does not disclose that she is hearing voices. Lucy says that at times when her refusal was overridden and the psychiatrist administered treatment anyway, she felt relief knowing that the voices are likely to disappear sooner rather than later and will not drive her into self-harm. She says that advance consent permitting treatment on such occasions would be “life-changing”. Without it, her suffering is prolonged and that has devastating consequences for her personal life. Lucy was not the only participant who expressed a desire to avoid the challenging consequences of her illness by consenting in advance to treatment: Sophie, who has a diagnosis of bipolar disorder, says she is likely to decline treatment when manic because she feels “on top of the world” and she does not want the treatment to take that away. However, when ‘well’, Sophie wishes that the treatment had been administered sooner because mania makes her behave recklessly with money.
Of the psychiatric survivors who spoke with me, the vast majority (11 of the 12) supported the idea that they should, when well, be able to give ‘advance consent’ to treatment they might refuse when ill or might wish to consent to treatment in case they are not deemed to have mental capacity to make independent decision when in mental health crisis. They argued an advance decision to consent to treatment would (and should) be given a lot of careful consideration (most believing that this should include accessing medical advice), and that patients should be limited to consenting in advance to treatment that they know and have previously received. One suggestion was that when it comes to treatment for a specific condition, it may be helpful for a medical professional to give the patient a document outlining the treatment they have previously received for this condition (including dosage, frequency etc), along with information about associated risks and potential side-effects. This could be a way of the patient and medical professional cooperating to make a decision about treatment.
There was some concern that advance consent should be reviewed regularly. Indeed, Eve felt it should be obligatory for patients and medical professionals to periodically (or when relevant circumstances change) review the advance decision to consent to treatment. This would ensure that the treatment in question is a) still safe and appropriate should there have been recent changes in medical history, b) up to date, or c) does not require the patient to consider new emerging treatments stemming from medical or technological developments. As Eliza put it:
We are the patients and they are medical doctors and so their expertise and point of view comes from medicine. And in medicine, we treat people with objectively scientific treatments. But the treatments are experienced by our bodies and not the administering doctor’s.‘Eliza’
Participants wanted their advance decisions to consent to treatment to be accepted by medical professionals even if (perhaps especially if) they were refusing those treatments when they were ill. One participant thought that it was “unimaginable” not to follow an advance decision to consent to treatment (she refers to it here as a “living will”) in such circumstances. She sums up the crux of the issue here:
Of course, people with mental health problems get paranoid. They might think someone wants to poison them, for instance. I think, that if I had made a living will and then I got paranoid and delusional and ended up in a hospital and said ‘well, I don’t want it anymore, I’ve changed my mind’ and they [doctors] listened to me, I think I would be really cross. I think I would turn around and say ‘look, we agreed in advance when I was in my right mind, when I spent all this time considering this decision (…) that you would treat me and you didn’t’. I think, there could be instances where requested treatment is not medically possible then, you know, that’s tough but okay. But if they gave up on my advance consent too quickly, despite me considering all side effects and all possibilities, yes, I’d be cross. I would be really cross that nobody respected what I agreed when I was in my right mind.‘Eve’
Before considering the limitations of the current law regarding advance consent, it is important to emphasise that support for advance consent to treatment was not universal among my participants. Two lines of argument were presented: Firstly, Helen thought the opposite. “In no way, shape or form” did she support the notion of advance consent. Helen thought that in most of her experience any consent she has given to treatment was coerced and that she was “never supported” in those decisions. She felt that advance consent would further “deteriorate” opportunities to “decide for [her]self”. Helen thought that she was “always able to judge what is best” for her and wanted to know what she could “refuse treatment at any stage”. This speaks to long-standing concerns of those questioning why autonomy interests of the ‘well’ patient should prevail over that of the ‘ill patient’. A potential practical solution to this ethical dilemma was proposed by Eve, i.e. to “let the individual decide for themselves because it [advance consent] is not going to work for everybody”. The second line of argument came from Albert, who supported the idea that advance consent should be available to patients in theory, but said that he “tend[s] to follow what doctors say anyway” and “no treatment was particularly effective” so he “probably wouldn’t make one”. Other empirical research suggests that some patients would not make an advance statement as they ‘accept they make poor decisions when “unwell” and prefer the treating team to make decisions for them’ whilst another group of patients thought ‘they wanted to make their own decisions at all times.’ So it seems that for reasons such as distrust of medical professionals or distrust of one’s own judgment, some patients would wish to avoid consenting to treatment in advance of a loss of capacity. This suggests that (in parallel with the Advance Decision to Refuse Treatment already set out in law) advance consent mechanisms would not be appropriate for everyone.
Current law in England and Wales
As I’ve shown, my research (along with findings from other jurisdictions where advance consent is currently possible) shows a strong preference for the opportunity to consent to psychiatric treatment in advance of losing capacity. However, the law in England and Wales does not currently allow for this. Presently, only advance refusals have legal force in the Mental Capacity Act 2005, ss.24-26.
Advance decisions to refuse treatment are treated in law as equivalent to contemporaneous refusals; “the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued” (s. 26(1) Mental Capacity Act 2005). So, a valid and applicable advance decision to refuse treatment is legally binding upon medical professionals (and everyone else who might otherwise administer treatment) and the treatment refused cannot lawfully be delivered.
Some participants were baffled as to why they could not make a parallel document giving advance consent to treatment. Like ‘Paul’ in the Court of Protection hearing that prompted this blog post, they did not want their incapacitous treatment refusals to be followed.
What then of the force that might be necessary to deliver treatments refused by an incapacitous patient?
Treatment without consent might be experienced as forced treatment (Note even when the physical force is not present – forced treatment can include administration of medication without consent, administration of psychiatric drugs, as well as physical measures such as restraint). If ‘Paul’ had been able to give advance consent, recognised by the law, to treatment (and related restraint) despite his at-the-time incapacitous refusal, then his treatment is less likely to be experienced by him as coerced or forced onto him. The question arises, would it still feel like forced treatment, given what is required (e.g. being held down by four staff members to stop someone kicking out while he’s shouting ‘leave me alone’ etc)?
To an extent, it would certainly feel like ‘forced’ treatment, both to “ill-Paul” and to the staff restraining him. But I am inclined to agree with Kitzinger’s observation that an advance statement setting out a patient’s wishes would provide staff with some comfort. They would know that this is exactly what the patient had said he wanted staff to do at a time when he had the mental capacity to make these decisions. Even greater comfort could be provided by a formal “advance decision to consent” to treatment and necessary restraint, if the law were to permit this. In addition, legally enforceable advance consent would also protect medical professionals from liability, e.g. should associated risks of administering the treatment in question materialise.
Finally, the quote I cite above from Eve suggests that patients might feel more abused if their advance consent is not followed, than if it is followed contrary to their non-capacitous wishes. Treatment involving restraint and given against a person’s current wishes is often experienced as coercive and abusive, particularly at the moment that it is taking place, but psychiatric survivors recognise that it is sometimes necessary and even lifesaving. In hindsight, some are grateful that they received forced treatment regardless of what it felt like at the time.
Advance consent that is a carefully considered and voluntarily chosen treatment might reduce ways in which force is experienced. Some of the worst experiences of force described by my research participants arose because the person was not provided with (sufficient) information about risks and side-effects. Perhaps the most extreme example of this is found in Lucy’s account of finding out five years into taking a specific medication that it causes chemical castration. She was only given this information after inquiring whether the medication should be withdrawn as she was trying to conceive. Lucy felt that the treatment she received for five years was ‘without [her] consent’ and abusive because she was not given the information that the drug had such high potential of altering her life forever. So, to minimise experiences of force, all risks and side effects must be disclosed to a patient – whether the consent is being sought at the time of treatment, or in advance. In the Court of Protection case of ‘Paul’, it seems he was aware of the dangers of restraint and sedation alongside the administration of haemodialysis. He understood that there was a substantial risk of death or brain injury, but he also understood that without taking this risk, he would certainly die as a consequence of untreated kidney failure. Full disclosure concerning the risks and benefits of treatments is essential for informed consent, including advance decisions to consent.
For ‘Paul’, the outcome of the court hearing was the one that he wanted: the judge ruled that it was in his best interests to continue to receive dialysis, via force if necessary, on those occasions when (lacking capacity to do so) he declined treatment. In that sense, as Celia Kitzinger says in her blog, the court decision may have enhanced his autonomy
…but it fell short of granting him the autonomy to consent to treatment in advance of losing capacity. It was not up to him to consent in advance to treatment. That decision was not his. it was a best interests decision made by the court.
If the law were to provide for an “advance decision to consent” to treatment, this would offer scope for the opportunity for self-determination for psychiatric survivors (and others) sought by the vast majority of the participants in my research. It would not be left to others to make such decisions in their best interests (as the Court of Protection did for ‘Paul’). In this way, for such people, advance consent could provide a mechanism for enhancing their autonomy.
In this blog post I have explored the potential of advance consent as expressed through lived experience. I have not explored in detail the legal or practical problems that might be associated with advance decisions to consent to treatment. However, I remain hopeful that by highlighting cases such as Paul’s and learning from lived experiences of psychiatric survivors, we can make small steps that will lead to better experiences of treatment for those in mental health crisis.
Magdalena Furgalska is a final year PhD Candidate at the Birmingham Law School, University of Birmingham (funded by the Economic and Social Research Council) with a broad area of expertise in mental health law, medical law and human rights. She tweets @MagdaFurgalska Email: firstname.lastname@example.org