Disabled people like me fear legal assisted suicide: it suggests that some lives are less worth living

Disabled people look to doctors to help us live, not to help us die, writes Jane Campbell

Many terminally ill and disabled people oppose assisted suicide.

Not a single organisation of, or for, disabled people, or one representing people with long term health conditions has campaigned for assisted suicide to be legalised.

We recognise that Section 2 of the Suicide Act 1961 provides essential protection for all suicidal people, including terminally ill and disabled people.

If you believe that terminal illness or disability is sufficient reason to desire suicide what does it say about your perceptions of terminally ill and disabled people? Are we really so different from you?

“But it’s not about you,” is the challenge we hear most frequently. Those seeking to change the law claim to do so only for patients deemed to be terminally ill, with strict criteria to be met before an assisted suicide can be considered.

Readers of The BMJ will recognise that the distinction between disability and terminal illness is a false one: for many disabled people a chest infection is a terminal illness unless treated. The disabled person dependant on a ventilator is terminally ill if the ventilator is switched off. I am many years over my prognosis end date, along with countless others who have a progressive condition.

Proponents of a change in the law believe that a line can be drawn between terminal illness and disability, that a binary test can be devised to decide who can have an assisted suicide and who cannot. Thus it becomes a treatment option for some, but not for others.

But terminal illness and disability do not exist in a vacuum. We all have views about them. Often these views include widely held perceptions involving loss, decline, and fear of the future. It is hard to be positive as a disabled person, especially when the media is full of stories of abuse, neglect, cut-backs, and overstretched resources. Even when medical and social care are at their best, our fear of the future remains.

Given this context, it is unsurprising that some patients develop suicidal thoughts, which perhaps will be endorsed by family, friends, and members of the medical team. A change in the law would thus permit the focus to switch from preserving life to ending life. It is harder to think of a more fundamental change in the doctor-patient relationship.

For disabled people this is profoundly worrying. We know that it can take years to adjust to illness and disability. A person’s outlook can be revolutionised with the right health and social care, but this can take years to put in place and remains elusive to many. Would it be right to grant an assisted suicide to someone who feels that they are a “bed blocker” and is tired of waiting for the right support?

We rely on the medical profession in our darkest hours. You seldom see us at our best. You often see us when we are in crisis. Yet we depend on you to do all that you can for us. Whether you admire us or pity us you do your utmost.

Many of us, myself included, are alive now because of the skill of the medical profession, advances in drug treatments, and improved devices. We are immensely grateful. We want you to keep asking yourselves, “How can I improve this person’s health and quality of life?” Now is not the time to give up on us to vote neutral on assisted suicide.

Not Dead Yet UK is a UK based network that is part of a global alliance of disabled people who oppose euthanasia and assisted suicide.

Competing interests: I have read and understood the BMJ Group policy on declaration of interests and declare the following interest: I am a severely disabled person whose life depends upon the care I currently receive from the NHS. I am fearful that any change to the current law prohibiting assisted suicide may adversely affect how I, other disabled friends and the wider community of disabled people are treated in the future, especially should they  become less able to make my wishes known.

Definitions under dispute

Proponents and opponents of assisted dying do not all agree on the terminology used to describe the process.

Assisted dying—Proponents of the Assisted Dying Bill 2015 in England and Wales argue that this term best describes prescribing life ending drugs for terminally ill, mentally competent adults to administer themselves after meeting strict legal safeguards. Assisted dying, as defined like this, is legal and regulated in the US states of Oregon, Vermont, Washington, Montana, Hawaii, California, and Colorado, and in Washington, DC. In 2017, similar legislation was passed in Victoria, Australia.

Assisted suicide—This term is often intended to describe giving assistance to die to people with long term progressive conditions and other people who are not dying, in addition to patients with a terminal illness. The drugs are self administered. Some opponents of assisted dying do not accept that it is different from assisted suicide. Assisted suicide, as defined like this, is permitted in Switzerland.

Voluntary euthanasia—This term describes a doctor directly administering life ending drugs to a patient who has given consent. Voluntary euthanasia is permitted in the Netherlands, Belgium, and Luxembourg. In 2016, Canada legalised both voluntary euthanasia and assisted dying for people whose death is “reasonably foreseeable,” in what it calls “medical assistance in dying” (MAID).

Read more of our coverage of the assisted dying debate.

Jane Campbell, founding member, Not Dead Yet UK