Choice at the beginning and end of life: a feminist issue

Dignity in Dying campaigns so Britons can choose to accelerate what they consider to be an unbearable death. Abortion Support Network funds abortions for women who can’t get them in their own countries.

As Co-Chair of Abortion Support Network and Chief Executive of Dignity in Dying, I see how women are prevented from accessing choice at the beginning and at the end of life. Many of the forces at play in preventing these choices are the same: the patriarchy in the form of Church and State, misogyny and medical paternalism.

Margaret Atwood recently wrote for The Guardian that,

Women who are not allowed to make their own decisions about whether or not to give birth are, in fact, owned by the state, as the state claims the right to dictate the uses to which their bodies must be put.

In the same way, dying people are also owned by the state. The state takes away choice from dying people, forcing them into impossible situations. We know that people travel overseas to exercise control over their deaths; that some dying people remain beyond the reach of even the best palliative care; and that others are being driven to end their lives in lonely and violent ways.

The parallels with backstreet abortions cannot be ignored. Choices are available to those who can afford it and those who can navigate complicated and often paternalistic bureaucracy. Women travel for abortions and women travel for assisted deaths, with the state happy to outsource women’s healthcare to other countries.

Medical paternalism

I’ll give you a recent example of the intersection between medical paternalism and the Church on the contraceptive pill. The recently updated guidelines from the Faculty of Sexual and Reproductive Healthcare show that medical advice on the contraceptive pill that suggested a seven day break to allow for natural bleeds was misguided. There are no medical benefits to having a bleed.  The recommendation had been in place for the past sixty years. This was partly as a result of efforts to encourage the Catholic Church to deem the contraceptive acceptable and partly because women have not had their needs taken seriously by the medical profession. Many women still have to find a way to overcome barriers put up by some doctors in order to access the contraceptive pill, the morning-after pill and abortion.

Unfortunately, the mantra ‘My body, my choice’ still depends on having a doctor who does not believe that they have the right to add ‘on my terms’ to that statement.

This brings me on to medical gaslighting, where healthcare professionals convince someone that they are exaggerating their symptoms, or perhaps imagining them altogether. While anyone can be a victim of gaslighting, women are more likely to be on the receiving end of it.

In 2018, the Independent Medicines and Medical Devices Safety Review reviewed three medical scandals (vaginal mesh, hormonal pregnancy kits and anti-epilepsy medicine) in which women were given medical products that weren’t properly tested, and then weren’t believed when they complained of side effects. The report showed that the women’s voices were consistently dismissed and were routinely not believed when speaking about their symptoms. The report talked of an arrogant culture in which serious medical complications were dismissed as “women’s problems” or it being “that time of life.”

This chimes with other research, with studies finding that women are less likely to be given pain relief than men, have to wait longer to receive pain relief, and are more likely to be given sedatives rather than pain relief. One US study showed that women who identified as Black or Hispanic received less pain relief following childbirth than white women, while in the UK Black women are five times more likely to die in pregnancy than white women.

We see frequent examples of medical gaslighting at the end of life too. A few years ago, Dignity in Dying released the report “The Inescapable Truth: How seventeen people a day with suffer as they die”. It shone a light on the suffering some people face at the end of life despite receiving excellent palliative care. “No-one told me it would be like this” is what a dying woman said to her sister, reproduced in the Inescapable Truth. The response to the report by some high-profile medical professionals was to suggest families must have simply misinterpreted their loved one’s agony.

Social change

Women deserve open and honest conversations about the reality of pregnancy, birth, abortion, illness and death, and our voices should not be silenced when we speak out about the failures of the current law, medical practices or healthcare professionals. We need to be able to make informed decisions about our lives and for those decisions to be supported and respected by the state and the medical profession.

The thing about social change is that in retrospect the transition between past and present seems so seamless. Women’s suffrage. The civil rights movement. Equal marriage. It is sometimes easy to overlook the fact that people had to fight for these things to be recognised as valid concerns, let alone force them to be written into our statute books.

To quote Margaret Atwood again,

…democratic rights don’t grow on trees. They must be struggled for and maintained.

Change doesn’t come from top-down dictum; it comes from growing, unstoppable grassroots movements. By their nature, campaigns to promote human rights frequently interlock, for example the HIV/AIDS epidemic was also a catalyst for movements promoting greater choice at the end of life.

I can see the parallels between what Abortion Support Network and Dignity in Dying are doing now and what has happened in history.  In mass mobilization against slavery where William Wilberforce said “the scale of petitioning shook the British elite.” That was 1833 and thousands of Dignity in Dying members are writing to peers now, to support Lord Forsyth’s amendment to the Health and Care bill to be debated next week.

Poland has offered a safe haven for families who have fled from Ukraine.  But Poland has some of the most punitive abortion laws in the world.  Abortion Support Network is part of a coalition that is supporting displaced women who want these choices.  We have put instructions on how to order and take early abortion pills into Ukranian and Russian.  We expect people later in their pregnancy will start getting in touch soon.

Making history now is the job of a campaigner.  Calling out oppression where we see it and securing change – not only for our own cause, but for human rights everywhere.  It’s the job of providing organized solidarity and radical compassion to all who need it.