The Rob Marris MP’s Assisted Dying No.2 Bill
Mental Health Resistance Network (MHRN) Statement, August 2015
The Marris assisted dying bill is due have its second reading in parliament on 11 September 2015. It is appropriate that the MHRN declares our position on this bill as it has significant implications for disabled people and for those of us who live with mental distress. We are here making observations that are specific to mental health.
The bill proposes that a doctor can provide a person with the necessary guidance and drugs to end their own life if it has been determined that s/he has less than six months to live. Unlike in other parts of Europe, in this bill the drug must be self-administered, a doctor cannot administer it.
The safeguards in the bill are that the person’s request must have the approval of two doctors who can confirm that s/he is of sound mind and has less than six months to live. This refers to six months without treatment. Even if the person could live longer with treatment, that person will still be deemed as having just six months to live. Following the approval of two doctors, the case passes to a judge who can determine that the patient can end their life with drugs provided and prepared by a doctor. So, three people, in addition to the patient, would be involved in the decision.
Some of the high profile cases that we have seen in the media would not be covered by this bill as a person would have to be capable of administering the drug without assistance. So, for example, someone who cannot move or is otherwise unable to inject the drug unaided could not benefit from any change in the law. In addition, someone experiencing intolerable suffering over a period longer than six months would also not be able to access such a law.
The language that we often hear used when people speak of assisted suicide refers to a right to die with dignity, to avoid undue suffering and to exercise choice in how and when to die. We want to look more closely at these three ideas: dignity, suffering and choice.
We have a number of concerns over what we understand by the use of the word “dignity”. Firstly, if this law is put in place and people have a choice to end their lives in a way that we describe as “dignified”, are we then to conceptualise the choice not to take advantage of this law as “choosing” to die without dignity? What would this mean for those who choose an “undignified” death? Would this be a dishonourable thing to do?
Lack of dignity is often seen as relying on others to provide care of a personal nature. Many people see this reliance on care from others as part of what constitutes suffering but this may be an issue with how we perceive and deal with dependency. This has particular meaning for disabled people who may have higher dependency needs throughout their lives than people who are not disabled but such disabled people are certainly not lacking dignity.
The loss of perceived independence may be difficult to come to terms with yet interdependency is essential to the very existence of civilisation. We believe that dependency has nothing to do with dignity although we recognise that becoming increasingly dependent can be distressing. Distress can be contained and managed if there is a collective will to enable this to happen.
We tend to think of suffering as being physical pain but most physical pain can be relieved with drugs or ameliorated with sedation. At any rate, physical pain is not the main reason people give when they ask for assisted suicide in the countries where it is available. These are to do with loss of independence and the ability to be active along with social factors such as being a burden to others. People with physical disabilities have shown that it is perfectly possible to adjust and live with all of these things and still find a reason to live. Of course, this may not be the case if someone has only a limited time left to adjust to their condition.
We want to turn our attention to one of the other causes of suffering that is not often referred to directly when talking about assisted suicide: mental distress. This is the psychological pain caused by loss of independence, the ability to be active and, ultimately, the reduced likelihood of a future. It is also a pain that many people who are not terminally ill live with for years for different reasons. This is our issue. We at the MHRN live daily with mental distress and many of us end our lives because the suffering is unbearable. Without treatment many more people with mental health problems might end their lives. In a sense we can say that mental distress can be terminal and, even conceivably, be subject to a future assisted suicide bill. Let us not forget that suicide is not illegal in this country, it is only assisting a suicide that is illegal.
One can imagine that depression often accompanies serious illness and that terminal illness would involve a level of sadness that could be difficult to cope with. Yet there is the safeguard in place that a person has to be of sound mind to be granted assisted suicide. How is soundness of mind determined? That the person is not psychotic at the time? That they are not depressed or overly emotional perhaps suggesting a diagnosis of personality disorder? If we have enduring mental health problems, would we be excluded from accessing assisted suicide when we are nearing death from physical illness? Or are we thought to have moments of lucidity when we can make this decision? Mental health problems are notoriously difficult to diagnose with diagnoses often changing over time. Given that most doctors have no training in mental health, which doctors will be making the assessment on a person’s soundness of mind?
In Belgium people with mental health problems who are not physically ill can have assisted suicide to end the suffering of their mental distress, most notably depression. It is unclear what role depression plays in people who are physically ill wanting to access assisted suicide. If a person was determined to end their life, would they admit to depression if it could result in them being deemed not to be of sound mind and therefore denied assisted suicide?
There are many paradoxes in this debate for us. When we are suicidal in Britain we can be sectioned and forcibly detained in hospital. We can be accompanied at all times on a hospital ward on close observation and physically restrained if we attempt to end our lives. We can be drugged by force in a bid to change or distance us from our low mood. Existing laws allow for all of this yet suicide is not illegal.
Feelings of guilt and social pressure are also forms of suffering. (Guilt, incidentally, often accompanies depression). Many people with mental health problems have difficulty coping with social interactions. Perhaps we are even difficult to live with at times. Will we be more difficult to live with when we are terminally ill and made aware that we are problematic to others? There is also the risk of lingering guilt for carers who may think they have put subtle pressure on someone to access assisted suicide because the carer simply couldn’t cope. Support for carers is inadequate in Britain at present.
We live in a society that rations most things including care. It is therefore no surprise that one of the main reasons that people choose assisted suicide is because they believe they are a burden to others. As care provision is being decimated and care workers scandalously undervalued, assisted suicide might seem a preferable option for people who are dependent on family members or have no one to depend on at all as social care is being withdrawn on an industrial scale.
At the MHRN we are only too aware of the lack of adequate treatment for mental distress. We are also aware of the shortcomings of physical healthcare for people with mental health problems. We have much shorter life expectancy than the wider population and this is only in part due to suicide but also because we experience worse physical health. In addition we believe that people with mental health problems receive poorer physical healthcare than the wider population, we can see attitudes towards us change when healthcare professionals discover we have mental health problems. In short, we are singled out for neglect. How are we cared for when we are dying?
We know that mental distress is not adequately treated for a number of reasons, including stigma and the fact that many of us are unemployed and therefore undervalued, and this never more so than now. But there is an elephant in the room, and that is the overwhelming reliance on the medical model of mental distress in the choice of treatment, so closing down other avenues of care. The pharmaceutical industry controls psychiatry, there is little room for long term treatment of any other kind and this is more so now than in the past. Yet for many of us medication doesn’t work or we cannot gain access to it due to diminishing services.
Increased access to superficial, short term talking therapies was only introduced when there was an imperative to prevent us from accessing disability benefits and not with the aim of relieving our suffering. We know that the care available to us is more about controlling our behaviour than the relief of our suffering although there are many well intentioned psychiatrists and nurses in practice. Interventions designed to change our behaviour, particularly in relation to work, have significantly worsened our suffering. What hope is there for mental healthcare at the end of life?
Mindful of how little choice there is in the care available to us as we live with mental distress we wonder if this distress will be any better managed when we are terminally ill. We fear that assisted suicide has the potential to become the treatment of choice and act as a disincentive to provide proper palliative care for mental distress at the end of life. If we are socially isolated, as many of us with mental health problems are, what is to prevent us from being neglected at the time of our deaths? Without support, what then would be our choices?
The important issue of pressure from others to end our lives has to be considered from a mental health perspective. Where people live with mental health problems sometimes family relationships can be strained; sometimes it is because of these relationships that the mental health problem exists in the first instance. Sometimes there are no family relationships and the person lives in a state of loneliness. We do not feel that we can be adequately protected from pressures from a variety of sources and situations to end our lives early if this bill becomes law.
Our choice would be to receive care during our lives that is not driven by profit motives but is well funded, that we are free from stigma, that we are able to find meaning and joy in life with the full support of our communities, that we are not devalued because we are unable to work and are free from the constant threat of financial destitution. Currently we have none of these choices. Seen in this way, talk of choice is nonsense for us.
It is clear that we have very few choices in our lives and it is understandable that some of us might feel that assisted suicide would be better that the other choices available for what remains of our lives when we are terminally ill. That is not true choice. Assisted suicide is only a choice if all other options are explored and made available.
There may be a time when assisted suicide becomes a true choice but other options are yet to be put in place, tested and developed. There is currently no political will to make alternatives available to us. In fact we are currently moving away from providing care for those who need it and from seeking to find a deeper dignity in life. We are moving towards assisted suicide and away from assisted living.
We do not accept that this is the time to be considering making this bill law as care and services are being widely withdrawn and the quality of mental healthcare remains inadequate and underfunded. The bill is poorly thought through for people with mental health problems and is not an addition to a wide range of choices available but risks becoming the only real choice for many.
A final point of concern is that this might be the thin end of a wedge, that assisted suicide could come to cover wider circumstances than those outlined in this bill. We fear it might come to be seen as a solution to the failure of the poor quality treatment that too often is all that is made available to us. We would want to see significant improvements in palliative care for mental distress during serious illness before there is any consideration of assisted suicide being introduced. The MHRN opposes this bill.