What do you make of Esther?

A campaigner’s call to change an assisted dying law got family calling MND sufferer Michael Wenham. Here he shares why such legalisation will increase people’s fear of dying.

Michael Wenham

Michael Wenham lives with a motor neurone disorder, Primary Lateral Sclerosis. He blogs at My Donkey Body.

Today Programme post about Esther Rantzen's comments.

BBC.

"What do you make of Esther Rantzen?" asked my brother.

I knew what he was talking about, as no doubt all listeners of Radio 4's Today Programme would have done. Clearly the advocates of assisted dying, or specifically suicide, have launched the next round of their campaign, even enlisting the late Diana Rigg, whose resemblance to my wife was once commented on by an old welsh policemen, as a witness. The Today Programme devoted a great deal of airtime to the subject over a number of days.

My reply to my brother was that I thought it was a good thing if we were more open about the subject of death and dying. After all they are events everyone without exception will come in contact with at some point or another. So, the sooner we stop treating it as a taboo subject the better. However, the dangers of legalising assisted suicide, are proved by places like Canada and Belgium.

I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on assisted dying/assisted suicide. Here’s some of that submission.

“I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease (MND) twenty-two years ago and who has experienced the condition’s relentless deterioration since then. There are a number of my contemporaries who have survived that long. That, and witnessing the ravages of the disease on friends in our local MNDA branch plus an Ethics qualification from Oxford, is the extent of my expertise.”

“My first observation is how positively my contemporaries, with short or longer prognoses, with the disease seize hold of life. Clearly there are some who, like Rob Burrows, devote themselves to fund-raising and creating awareness; while others enjoy the opportunities of life that come their way. What might have seemed a death sentence has proved a challenge to live.

"Secondly, I have recently discovered myself how expert professional care can enhance what is often portrayed as undignified dependence. Good caring can in fact add to quality of life. The sad thing however is that it is not something which the state will normally provide. Along with terminal palliative care, domestic social care must surely be a spending priority for any government that cares about the well-being of all its citizens. I’m fortunate to live an area of excellent MND provision and good, though not abundant, palliative care. But I understand that this is not equally spread through the country. If it were, I suspect it would reduce the fear of dying which must be a major motivator for assistance to ending one’s life.

"Ironically, in MND, according to the Association’s information sheet, How will I die?, those fears are greatly exaggerated:

In reality, most people with MND have a peaceful death. The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working.

Specialist palliative care supports quality of life through symptom control. practical help, medication to ease symptoms and emotional support for you and your family.

When breathing becomes weaker, you may feel breathless and this can be distressing. However, your health care professionals can provide support to reduce anxiety.

You can also receive medication to ease symptoms throughout the course of the disease, not just in the later stages. If you have any concerns about the way medication will affect you, ask the professionals who are supporting you for guidance.

Further weakening of the muscles involved in breathing will cause tiredness and increasing sleepiness. Over a period of time, which can be hours, days or weeks, your breathing is likely to become shallower. This usually leads to reduced consciousness, so that death comes peacefully as breathing slowly reduces and eventually stops.

"So, this is a third and subtle danger of legalising assisted dying/suicide. It would increase people’s fear of the inevitable fact of death and dying. I think this can be one factor in explaining why, in jurisdictions which have introduced it, we see it being extended beyond the first strict limits. It is held out as an answer to this fearful fact, death, whereas in fact death and dying should be talked about in realistic terms, as normal, as concisely outlined by Dr Kathryn Mannix. As she says, normally dying isn’t as bad as we think.

If the government should be doing anything, the first thing it might well do, is to promote informed education about dying of the sort exemplified by specialists such as Dr Mannix, as well as adequately funding her former specialism of palliative care. It should start with schools’ curricula. After all every child will have encountered death at some stage.

Finally, the dangers of coercion, in my experience, are not so much external as internal. It’s often rightly observed that prolonged pain is worse for the engaged spectator than for the sufferer. If you care for someone, seeing them struggling is barely tolerable. You may wish to see their struggle over, but underlying that wish is your own desire to be spared more of your own horror show. The person who is ‘suffering’ however has that strong survival instinct, common to all humans, and is more concentrated on living than dying. Having said that, when you are depressed, as might be natural, that instinct gets temporarily eclipsed. Then you need protection from your own dark sky. It is at such times that your other inner demons emerge: your sense of being a burden - to your family, to your friends (if you have any), to the NHS and to the state purse; your fear of losing your savings and of leaving nothing to your loved ones; your fear of pain and of dying (exaggerated by popular mythology), and your sense of suffering, heightened by your depression.

"For most of us with long incurable diseases, it’s these internal perceptions that are most coercive, although they can be easily compounded or even exploited from outside. I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important to our society and worth caring for. ‘Any man’s death diminishes me...’ and so we will value it to the end."

I'm grateful that when I received my 'motor neurone disorder' diagnosis, which was initially frightening, I couldn't be tempted to opt for an early death. Instead of one Christmas with my family (as I warned them), I've enjoyed 22 more Christmases. That was the law against suicide fulfilling its safeguarding function, protecting the vulnerable, as I was then. Contrary to my preconceptions, my form of MND (PLS) is very gradual and I've been able to live a full if increasingly limited life, thanks to my wife, Jane, who cares for me 100 per cent. 24 hours a day, seven days a week.

My view is still that legalising assisted dying/suicide has more cons than pros. The better choice is to invest in hospice and palliative care, so that everyone may have access to pain and symptom care in the last years of their life.

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Digital

Freedom

30 October 2024

5 min read

Seen in Beijing: what’s it like in a surveillance society?

Cameras and controls remind a visitor to value freedom.

Alex Ross

A guard stands behind a barrier across an entrance to a station escalator.

A Beijing station gate and guard.

The recent Archers’ storyline wouldn’t have worked in Beijing. Here, great gantries of traffic cameras see into cars and record who is driving, so a court case which hinged on who was behind the wheel would not play out in months of suspense. The British press periodically runs stories on how much tracking and surveilling we are subject to, while the success of the TV series Hunted showed just how hard it is it to evade detection, and how interested we are in the possibility—but how often do we stop to think about the tensions inherent in the freedoms we enjoy?

It is difficult to explain just how free life in Britain is to someone in China, and how precious, and conducive to social good, that freedom is, to people at home. Take my recent experiences. Prior to entry at Beijing airport, I was randomly chosen for a health check and required to give a mouth swap. This may have been a benign Covid testing program, but it was impossible to tell from the questions on screen we had to answer—and a mouth swab certainly hands DNA to the authorities. At the university where I was studying, face scans are required for entry on every gate, and visitors must be registered with state ID in advance. Despite not having been in China since prior to Covid restrictions, my face had been pre-programmed into the system and an old photograph flashed up on screen as the barriers opened.

The first time I used a rental bike to cycle back to campus (the local Boris-bikes come on a monthly scheme, linked to a registered phone number), a message flashed up on my phone telling me that I had gone the wrong way down a one-way bike lane. The banner appeared twice, and the system would not let me lock the bike until I had acknowledged my error. The fact that the GPS system tracks the bikes so closely it knew I had gone against the traffic flow for a couple of hundred metres to avoid cycling across a 4-lane street was a surprise. Since that phone is registered to a Chinese friend, such infractions are also potentially a problem for him. What was less surprising, is the systemic nature of China’s ability to track its people at all times.

Walking through my university campus, where every junction has three or four cameras covering all directions, I occasionally wonder where students find space to have a quick snog.

No one uses cash in cities in China; in many outlets and places cash isn’t even accepted. Everyone uses apps like WeChat or Alipay to pay for goods—even at food trucks and casual stalls the vendor has a machine to scan a phone QR code. WeChat is WhatsApp and Facebook and a bank debit card and a travel service and news outlet rolled into one; Alipay, its only effective rival, offers similar. To obtain either account, a phone number is needed, numbers which have to be registered. And to pay for anything, a bank account in the name of the individual must be linked to the account. In other words, the government can choose to know every purchase I make, and its exact time and place. A friend who works in a bank says he uses cash where possible because he doesn’t want his colleagues in the bank to see what he's been buying.

Transport is also heavily regulated. To enter a train station, a national ID card is needed, which is scanned after bags are x-rayed. To purchase a high-speed train ticket, a national ID card—or passport for foreigners—is required. It might be possible to purchase a ticket anonymously in cash from a ticket window outside the station for an old-fashioned slow train, but one would still need an ID card corresponding to the face being scanned to make it to the platform—and the train station has, of course, cameras at every entrance and exit.

Cameras are pervasive. Walking through my university campus, where every junction has three or four cameras covering all directions, I occasionally wonder where students find space to have a quick snog. The only place I have not yet noticed cameras is the swimming pool changing rooms, which are communal, and in which I am the only person not to shower naked. There are cameras in the church sanctuary, and cameras on street crossings.

Imagine being constantly reminded by human overseers that your activity in person and online is both seen and heard.

Even when not being watched, out in the countryside, the state makes its presence felt. On a recent hike in the hills, our passage triggered a recording every few hundred metres: “Preventing forest fires is everyone’s responsibility.” Once or twice is common sense, ten or twenty times a stroll is social intrusion. One can, of course, learn to ignore the posters, the announcements, the security guards on trains playing their pre-recorded notices as they wander up the aisles and the loud speaker reminders that smoking in the toilets or boarding without a ticket would affect one’s social credit score and imperil future train travel, but white noise shapes perception.

As a (mostly) upright citizen, there are many upsides to constant surveillance. People leave their laptops unattended on trains, since they will not be stolen. Delivery packages are left strewn by the roadside or by a doorway: anyone stealing them will be quickly found. There is almost no graffiti. I can walk around at night safe in the knowledge that I am exceedingly unlikely to be a victim of petty theft, let alone knife or gun crime. Many Chinese have horrified tales of pickpockets in European cities or crime rates in the UK, while young friends are so used to the state having access to phone data and camera logs that they barely notice. Most Chinese I know are very happy with the trade-off of surveillance for safety—and the longer I spend in Beijing, the more appealing that normality seems.

To those who have lived outside, however, the restrictions make for a more Orwellian existence. Any church group wanting to hold an online service must apply for a permit. A friend was recently blocked from his WeChat account for a period after using a politically sensitive term in a family group-chat. Not being able to access certain foreign websites, search engines or media (no Google, no WhatsApp and no Guardian without an illegal virtual private network) might be an irritation for a foreign resident but means a lifetime of knowingly limited information for a citizen. Not being able to access information freely means, ultimately, not being able to think freely, a loss that cannot be quantified. The elite can skip over the firewall, but many cannot.

We have seen the dangers recently in the UK of limited information flow, and of social media interference by hostile players. Imagine never being able to know whether the information you are receiving is trustworthy—or being constantly reminded by human overseers that your activity in person and online is both seen and heard. Christians may believe in the benevolent and watchful gaze of God—but are rightly wary of devolving that omniscience to fellow humans.