Sabine is afraid of dying

TV deaths

My children can, by now, accurately predict what is coming, every time someone dies in a TV drama. Oh no, not another ridiculous death! I will say, half-amused and half-despairing. This is NOT how people die in real life!

On TV, there will be a few profoundly meaningful last words, spoken with urgency. Look after your mother! I’m sorry for what I did! The killer was Mr… (You never quite catch exactly who the killer was.) Then a bit of a gasp, and the person falls back onto the pillow / slackens in someone’s arms. Dead. There may be a bit of agonising pain thrown in, for effect.

On TV, people go from being fully aware and alive to being fully dead in a matter of seconds. Minutes at most – and that’s stretching it, usually because there is quite a lot of meaningful conversation or painful moaning or heroic resuscitation effort to fit in.

Real deaths

In real life, the space between any last words (meaningful or otherwise) and death is usually hours, days, weeks even. Normal people dying normal deaths just sleep more and more, then slip into semi-consciousness, then leave gaps between breaths, and at some point they simply don’t breathe in again.

TV deaths are, by their very nature, dramatic. Real deaths are usually gentle. They are rarely painful or dramatic.

This is beautifully described in With the end in mind: Dying, death and wisdom in an age of denial, an extraordinary book by Kathryn Mannix. She is a pioneering palliative care consultant, and she is on a mission to dispel our fear and ignorance about dying. She does this by telling the stories of the lives and deaths of dozens of her patients.

Here is Sabine. She is nearly eighty.

So starts the first story. And here, indeed, is Sabine, right here in my kitchen, joining me. She drinks her tea black and derides the ‘You call that coffee?’ offered by the beverages trolley. She has a French accent so dense it drapes her speech like an acoustic fog.

I am hooked. This book could be a novel, it is so beautifully written. But it is not a novel. All of it is true, and I recognise all these people. They have been my patients, my neighbours, my friends, my family.

Sabine, for example, is keeping a secret. “She, who wears her Resistance Medal and who withstood the terror of war, is afraid. She knows that widespread bowel cancer has reached her liver and is killing her.”

What follows is an account of how “the leader” at the hospice stuns the author, at the time a young and inexperienced doctor, by explaining to Sabine (and to us) in extraordinary detail what normal dying looks like, and what Sabine can expect .

‘The important thing to notice is that it’s not the same as falling asleep,’ he says. ‘In fact, if you’re well enough to feel you need a nap, then you are well enough to wake up again afterwards. Becoming unconscious doesn’t feel like falling asleep. You won’t even notice it happening.’

He stops and looks at her. She looks at him. I stare at both of them. I think my mouth might be open, and I may even be leaking from my eyes. There is a long silence. Her shoulders relax and she settles against her pillows. She closes her eyes and gives a deep, long sigh, then raises his hand, held in both of hers, shakes it like shaking dice, and gazes at him as she says, simply, ‘Thank you.’ She closes her eyes. We are, it seems, dismissed.

I am also leaking from my eyes. Family, food and sleep all have to be put on hold as more and more people – whole families – keep tumbling out of the pages, joining me and my coffee, and as the night darkens, my wine.

We are no longer familiar with ordinary dying.

Few people have seen the process of dying, the gradual fading, the final breaths. Those of us working in palliative care, who have had the privilege of being alongside hundreds – if not thousands – of dying people, know that there is a pattern that is remarkably similar for most people. This predictable, and usually fairly comfortable, process has traditionally been known and understood by families, who used to watch grandparents, aunts, parents and partners die among them, often in their own beds. But in recent times, deaths have been banished to hospitals, unseen, unknown and frightening.

People with learning disabilities die ordinary deaths, too.

At the end of a talk I gave at a conference last year, someone raised her hand. Is there anything particular we should know about the final days and hours of someone with profound learning disabilities? she wanted to know. I can’t remember what I said – probably something about the need to support the family and care givers, the importance of acknowledging relationships, the recognition of the place of the dying person in everyone’s life, the magnitude of the hole they will leave behind. The questioner looked taken aback.

Is that not what you were expecting to hear? I asked her. She explained that she thought I’d say that someone with learning disabilities might need more pain killers than you or me.

Now it was my turn to be taken aback. I explained that on the contrary, dying is dying! At the end of life, the process of gradually slipping into sleepiness, then unconsciousness, is no different for people with learning disabilities. At the end of life, in the process of dying, equality reigns. It is the social circumstances, the relationships, the support on offer, the access to necessary pain medication (usually no more, but also no less than you or I might need) that can make dying unequal.

Kathryn Mannix’ book is a gift.

I urge you to buy, borrow or beg a copy. It will make you more prepared for dying and more prepared for living. It shows us how ordinary people die, and how we can all embrace life because of it. Because we are all just ordinary people. And that includes people with learning disabilities.

It may not make for gripping TV. But it is rather reassuring.

A life-and-death decision

Try to imagine this, everyone (including the women). You are 34 years old and you have just been diagnosed with testicular cancer. Your whole family is shocked. You are in the prime of your life, the decades should be stretching ahead of you. Perhaps it could have been picked up a year ago, when you went to the doctor with swollen testicles, which were not really investigated properly. Neither were your complaints of pain. But now here you are, with a cancer that has spread. What to do?

Chances are that your doctors will recommend chemotherapy. It’s not to be taken lightly, going through chemotherapy is usually very tough indeed, and good outcomes are never guaranteed. You are feeling weak and rotten, so perhaps you decide that you really don’t want any treatment. But my guess is that you would. You would try.

Wouldn’t you?

I cannot think of many men in the prime of their lives who would not be offered this option by their doctors, even if the chances of success were slim. And the thing is, testicular cancer (even cancer that has spread) is one of the most treatable cancers, so the chances of success are not that slim.

So why was Ian Shaw told, soon after his cancer diagnosis in 2016, that palliative care was the best option? Why was he sent home to die? Why did the doctors not even discuss the (admittedly very challenging) option of chemotherapy, but instead told the family that it would be too much, the cancer had gone too far?

Ian has severe learning disabilities, autism and epilepsy. It is difficult to escape the suspicion that this has somehow influenced the doctors’ decision, although the hospital denies it, stating that “Mr Shaw‘s learning difficulties were not a factor in the decision to move to a palliative care pathway.”

I remember watching this story on the BBC news in July. There he was, this very weak young man, bedbound, with his tearful parents by his side. He was expected to die within months. I remember thinking, “Oh no, not again. Another person with learning disabilities falling through the net. This doesn’t seem right.”

I didn’t do anything. Perhaps I didn’t know the full story, I thought. Perhaps the doctors knew something I didn’t.

Fortunately, Dr Justin Wilson, who also watched the BBC news report, did take action. He is a leading psychiatrist in learning disabilities and knows a thing or two about cancer. He got in touch with the family and advised them to have a second opinion, so they took him to the Royal Marsden Hospital. Last night, the BBC news showed an update on the situation. There he was, this strong young man, five months after that initial report, responding well to chemotherapy. Ian hadn’t been expected to make Christmas, but now he is sitting in his wheelchair looking rather feisty.

Dr Wilson said, “My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread.”

He added, “I’m also clearly aware that providing cancer treatment for someone with the problems that Ian has is a real challenge. It is really difficult to give the best possible treatment to somebody in that situation, but my view is those challenges can be overcome.”

I couldn’t have put it any better myself.

I’m sure doctors and nurses all want the best for their patients. Nobody will have looked at Ian and thought, consciously, “What’s the point of this man’s life? Letting him slip away is the kindest thing, surely.”

But there are undoubtedly unconscious biases, putting people with learning disabilities at risk. Our study of patient safety issues, which involved investigations in six NHS hospitals, concluded:

“The most common safety issues were delays and omissions of care, in particular delays and omissions of basic nursing care (for example, unmet nutrition needs) and delays and omissions of medical treatment (for example, treatment not given because of perceived inability to cope with or consent to treatment or because of staff assumptions about the patient’s quality of life).” (p. xvi, Scientific Summary)

Similarly, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) concluded that people with learning disabilities are at risk of under-treatment, and recommended that people should not be put on a palliative care pathway without sufficient investigations or because of assumptions about their quality of life.

I am a great fan of palliative care. Recognising that someone is terminally ill is important, so that proper end of life support can be given. Sometimes, a person’s difficulties in coping with something as horrible as cancer treatments really are “too much”. But weighing up the pros and cons is not something doctors should do on their own. It is an effort that needs a multidisciplinary team and must involve the family and carers – especially if the patient cannot speak for himself. The difficulties and extra effort involved in giving treatment must be considered in the light of possible outcomes.

Nobody says it will be easy. But surely the possibility of living many more years rather than dying before Christmas is an outcome worth pulling out the stops for?

For Ian Shaw, this has meant putting him under an anaesthetic for a short time whilst he is given his chemotherapy. Now that is what I call an excellent example of making Reasonable Adjustments. Ian’s access to cancer treatment should not depend on the BBC news picking up his story, but thank goodness.

A home for life…?

I visited Michelle last weekend.

I am somewhat ashamed to say that I hadn’t seen her since her 60th birthday party, which is well over a year ago. My visit was prompted by setting up this website, because I wanted to ask Michelle whether it’s OK to put her photo on my biography page.

Oh, and how about this one? It’s my favourite. Could I publish that too?

Michelle on her 60th birthday

Michelle was the first long-term friend I made in England.

She was my housemate for almost two years. I had come to the L’Arche community from my family home (via a few years in a student flat) in the Netherlands. Michelle had come to the L’Arche community from a huge institution for the “mentally retarded”, where she had lived from early childhood to young adulthood. I was 21 and she was 29.

The crucial difference between “looking after” people and “being with” people became obvious when I got ill. Suddenly it was me who needed looking after, and it was Michelle who made sure this happened, bringing me hot drinks in the bedroom we shared. We had our disagreements, but being thrown together like that creates a bond that lasts a lifetime.

Michelle serves me my birthday cake, a few weeks after I moved into her home in 1985

So, why hadn’t I seen my friend for so long?

I had followed her trials and tribulations after I moved out of L’Arche. I had visited her in hospital when she developed problems with her brain a few years ago, and we didn’t think she’d make it.

(She did make it. She is made of strong stuff.)

But last year, Michelle moved to a nursing home. It upset me to think of her leaving her home, and I couldn’t face seeing her in what I imagined was an impersonal place with staff who don’t know her.

When people moved out of the large institutions in the 1980s, into small homes in ordinary streets in the community, we told ourselves (and we told them!) that they had found a true home at last.

A home for life.

That was certainly the case in L’Arche, where we tried to create family-like relationships in homes that were warm, welcoming, and above all, ordinary. The house I shared with Michelle was, in my day, home to nine people, four of whom had intellectual disabilities.

But 30 years later, the world is a very different place, and there have been many changes. Along came personal budgets and an emphasis on “choice”. Group living was out; independent living was in.

Many of these changes have been positive, giving people with intellectual disabilities (including many living in L’Arche) an opportunity to live in a place of their own, shared with a friend perhaps. Some people have longed for this. Giving people more choice, more freedom and more control over their lives (including who they live with) is a good thing. It is no longer acceptable for anyone to have to share their bedroom with a stranger from Holland.

Those remaining in larger homes (like Michelle, who never moved out) no longer share their home with assistants in the way we did back then. The stranger from Holland would, nowadays, be like a guest, doing what looks much more like “shift working”. On paper, people like Michelle were now “living independently”, although she still shared her home with three other people with intellectual disabilities. All independent together in the same house.

But here is the problem. All over the UK, there are homes like this, where “independent” people are getting older, needing more care, unable to manage the stairs.

What happens when people reach their twilight years, their sunset?

They live in homes not suited to the needs of old age.

(Picture Victorian London houses. There are no bathrooms downstairs. Nothing is on the same level. There are steps everywhere.)

Their personal budget doesn’t stretch to getting help beyond the basics. Michelle found herself confined to a downstairs room where she sat with just one assistant for much of the time, because she couldn’t get out. She often needed help at night, but there was no “waking staff”.

People racked their brains. Could L’Arche offer her a more suitable house somewhere, with good wheelchair access? Would the local authority increase her funding so that she could be properly supported throughout the day and night?

The answer to both questions was no. The local authority decided that it would be better (read: cheaper) if Michelle moved to a nursing home. So, eventually, and to my great distress, off she went. The only concession was that she was given some extra funding to enable her to visit L’Arche every week, so she could stay in touch with her friends.

I knocked on the door of her new home with some trepidation.

First impressions were not promising. There she was, seated among six other people in wheelchairs in a large and bare lino-floored room, with the oversized TV pumping out jolly music. Several more people milled about in the entrance hall, keeping an eye in case something interesting was happening. (A visitor like me, my piano accordion flung over my shoulder, was certainly interesting.)

Michelle had aged so much in a year that I barely recognised her.

But there is a positive end to this story.

She greeted me with a huge grin. As I went round introducing myself to the people in the room and explaining to them that I was Michelle’s friend, it became obvious that they, too, were her friends. I could see very few members of staff, but those who were there were nothing short of lovely.

We were soon joined by two other friends from L’Arche, who had become part of Michelle’s circle of advocates. We had tea; we looked at photos; we sang Michelle’s favourite songs, courtesy of that accordion (Michelle Ma Belle! Edelweiss! You Are My Sunshine!).

Michelle seemed content. She seemed – dare I say – at home.

Her friend and advocate explained how heartbreaking it had been when Michelle had to move out of the house that had been her home for over 30 years, away from L’Arche and all her friends – but everyone had been pleasantly surprised by how well she had settled. Michelle is an extrovert: she gets her energy from being with people.

Could it be that being surrounded by so many other people, being able to wheel herself to the glass-fronted entrance and keeping an eye on things, is actually better for her than the relative isolation she was forced into by the growing limitations of old age?

Another thought suddenly struck me. Could it be that this place, with its echoing Spartan spaces shared with plenty of other people, actually feels like home, perhaps even comfortingly so, to someone who has spent the first two decades of her life in a large and impersonal institution?

I am reminded of some of the most inspirational nursing homes for people with dementia in the Netherlands, where the décor and even the staff outfits match those of 60 years ago, to make the residents feel that they belong there.

I am seriously challenged by the idea that a woman with Down syndrome who is reaching the end of her life would rather be in a semi-institutional setting than in a cosy home.

Yet if we are to provide truly person-centred support, we need to try and see the world from the other person’s perspective.

Michelle cannot tell us what she wants, but her advocates, who know her well, are clear that she is happy enough in a place where I would absolutely hate to live.

I am not advocating a return to institutional life for people with intellectual disabilities who reach their twilight years. But I am clear that we need to keep an open mind when trying to determine what people’s needs and wishes are, especially people who do not have the ability to tell us.

Dying at home?

I am also reminded of my research into the perspectives of people with intellectual disabilities who were dying of cancer, about a decade ago now. I was very surprised to find that “being cared for at home” was not always the preferred option. Some people did not feel safe at home. Others found that their extensive physical needs simply couldn’t be met at home. One woman was clearly confused by the fact that she was both ill and at home: shouldn’t ill people be in hospital?

Three key features of a good place of care were:

  • being in safe surroundings with familiar people
  • being free of pain and anxiety
  • having carers who were well supported

Feeling safe and maintaining bonds with familiar people is probably easiest at home, but it could also be achieved elsewhere.

(If you are interested in the details, I have summarised those findings here.)

L’Arche’s inability to offer Michelle a home during her final years reflects a wider phenomenon. People with intellectual disabilities are ageing.

There is a time bomb ticking away within intellectual disability services.

Many of the homes that were so optimistically set up when the institutions closed in the 1980s and 1990s were designed to help people live independent lives, but they are often utterly unsuited to supporting an elderly population. They are not “future-proof”. The drive towards “independent living” and the slow but sustained cuts in social care funding are also leading to problems when there is a need for increased support.

Where, then, can people with intellectual disabilities call “home” during their final years?

Thankfully, Michelle’s team was able to take some time over finding a suitable nursing home that is close enough to her old home for regular visits.  Michelle gets the support she needs to maintain bonds with old friends (often a huge challenge for people who are dependent on others, and on funding, to organise their social life). She is also making new friends.

So I am relieved to find that the nursing home does indeed seem suitable for her. But all too often, there are emergencies. All too often, older people with intellectual disabilities who end up in hospital find that they cannot go back to their old home, because it can no longer accommodate their needs (or perhaps the staff lack the confidence to support those who are ageing and ill – but that’s another story). They are stuck with nowhere to go.

In order to address these issues, may I suggest The Four F’s:

Future proofing people’s homes

Funding

Forward thinking

Flexibility

Now… did Michelle mind having her photo on the internet?

I can’t be totally sure, because the internet is too difficult a concept for someone raised in the pre-digital age. But when I showed her that 60th birthday photo, her eyes lit up with delight: “Me!!”

I take that as a yes. Michelle has always liked being the centre of attention. She even bustled her way up to the altar during our wedding ceremony to join the witnesses, not wanting to miss out on the limelight perhaps.

I hope that she won’t mind me telling you her story.

In my research, I have often had difficulty explaining the need for anonymity to people with intellectual disabilities. Some have protested strongly. People like Michelle have often been anonymous all their lives, unseen, unheard. They deserve their very own place in the limelight.

As her advocate pointed out to me, Michelle has always set great store by “learning”. If she could have chosen a career, she may well have wanted to be a teacher. Through me sharing a bit of her story with you, perhaps she can be a teacher indeed.

So, for good measure, let me throw in this lovely photograph, from way back when I first knew her.

Michelle in 1985

How to be British

My first blog post was going to be about something profound and meaningful and relevant to my job. An essay on death, dying and intellectual disability, perhaps. Something suitably impressive. But I’m afraid I am going to have to introduce the B-word instead.

No, not Bereavement.
Brexit. (Or perhaps that’s the same thing.)

Yesterday, more than 32 years after first arriving in the UK, I became a fully-fledged British citizen.

Along with 20 other brand-new Brits, I promised to be faithful to Her Majesty the Queen. Lambeth Council generously threw in the gift of a free pen.

I’ve been married to a British citizen for 23 years and raised three British children, but apart from not being allowed to vote in general elections, it has never bothered me that I couldn’t call myself British. Those of you who have moved counties, countries or continents will know that the roots of your birthplace are never truly buried. I have always felt Dutch, and I have always seen that as an asset.

But when my son turned 18, we realised that it would be prudent for all three children to apply for a Dutch passport. The Dutch government is not keen on dual citizenship, and they keep changing the rules, so best to get this sorted before having a Dutch mum is no longer a passport to a Dutch passport. How lucky they were, I thought, to have two cultures and be part of two countries.

But hang on a minute. Aren’t I also part of two countries? Suddenly, being the only non-British person in my household felt a bit sad. I wanted to be British too! It was a positive choice – emotional, even.

(And expensive. Those Dutch passport applications came to around £150 each. Getting to the point of British citizenship has cost me more than ten times that amount. Thank goodness for free pens.)

Then Brexit happened.

Almost overnight, getting British citizenship no longer felt like an optional extra. I had never questioned my right to live in London, but all of a sudden, the future seemed somewhat shaky. What if I were to end up as an 85 year old widow with Alzheimer’s in need of nursing home care? Would I be sent back to Holland? I’m not dramatising things. In the toxic post-Brexit atmosphere, there have been enough worrying stories to make me feel acutely aware of the vulnerability of being an immigrant – something I had never felt before. Getting a British passport turned from a positive choice to a negative one. It was no longer a question of wanting a British passport, but of needing one.

The first challenge was passing my citizenship test.

Well, I thought, how hard can it be? You need to give the correct answer to at least 18 out of 24 multiple choice questions. Surely, I had lived here long enough to pass without too much effort? I merrily clicked on the online practice tests – and failed miserably.

Many of the questions were laughably easy.

Is Edinburgh the capital of England, Scotland, Wales or Northern Ireland?
Is Christmas Eve on 23, 24, 25 or 26 December?

But too many were beyond me.

Are there 10, 12, 15 or 20 national parks in England, Scotland and Wales?
Was the Emancipation Act signed in 1807, 1817, 1833 or 1837?
Who was made a Dame of the British Empire in the year 2000 – was it Mary Peters, Kelly Holmes, Ellen McArthur or Jayne Torvill?

I had no idea. Clearly, some study was required before I could gain the right to be British.

My friends, many of whom saw themselves as Very British and Very Well Educated, were incredulous when they, too, failed the practice tests. Their Oxford University degree had not prepared them sufficiently for Being British, as they could not tell me whether the famous satirical magazine “Punch” was published in the 1820s, 1840s, 1860s or 1880s; nor were they aware of the exact height of the London Eye (125 meters? 135? 140? 152? Every citizen should know!)

Luckily, there is a book with all the answers to these crucial questions. I studied it carefully and passed the test first time (you can take it as many times as you like, but at £50 a go, I was glad I didn’t fail). At the time, I would have been your perfect pub quiz partner – but I fear that a year later, I have forgotten most of the detail and am struggling once again to pass those online tests.

The next challenge was proving that I could speak English.

It looked like I’d have to sit an exam. Having written articles, books and a PhD was no help. The PhD was at a Dutch university, so although it was taught, written and defended in English, it didn’t count as evidence. But wait! How about my BSc degree? That was at a London university. Yes, that would get me to bypass the test requirement. I couldn’t find the certificate and had to pay to get a new one, but at least it did the trick.

Right, on to the Citizenship application form – about 80 pages long.

“Submit your Permanent Residence Card”.

Surely, as a EU citizen, I didn’t need such a thing? Don’t all EU citizens have the right to live in the UK? But no, it transpired that I did need to supply the card as evidence of my right to be here. Who knew? Another 80 pages of application form, another fee, another wait.

This was perhaps the part of the process that upset me most, because to obtain the right to Permanent Residence in the UK, the main requirement seemed to be Well Paid Work. The Home Office was not interested in my longstanding marriage to a Brit, nor in my British children, nor in the many years of doing low-paid work supporting people with learning disabilities. Instead, they wanted to know exactly how much I had earned in the past five years. How many days have I had off sick?

(Quite a few, as it happens. Breast cancer and all that. My poor hard-working GP had to write a letter listing all the dates I’ve been signed off sick, and why).

Also, could I please fill in this page, listing all the days I’ve been out of the UK in the past five years, and why? Thank goodness I’ve kept my old Filofaxes, so that I was able to inform the Home Office exactly on which date in 2012 I stayed Belgium overnight for a work seminar.

I have passed all these hurdles with quite a lot of effort, but without too much difficulty. But had I been a stay-at-home mum, or had I spent more than two out of the past five years in the Netherlands (to look after an ill mother, say), this would have been quite a different story. There have been news reports of Europeans in exactly those positions, people married to British citizens who had lived here for decades, who were sent letters by the Home Office telling them to prepare to leave the country after their application for permanent residence had been refused.

All this has made me feel very uncomfortable.

Why should someone staying at home to look after an ill husband or a disabled child be any less welcome in the UK than I am? Indeed, if I myself had physical or intellectual disabilities, how could I ever pass all these hurdles? Hm. Do I really want to be a full member of a country that no longer welcomes new citizens equally, but screens them for economic power, disregards family bonds, and seems unable to exercise compassionate flexibility?

But I filled in the forms, paid the eye-watering fees, sent in all the documents, and after months of waiting, I received my congratulatory Home Office letter.

All I had to do now was turn up at Lambeth Register Office for that promise.

It was actually quite nice. Forget the Home Office. Here in South London, I felt right at home. We were welcomed as new British citizens by the deputy mayor of Lambeth whose Portuguese accent was so strong that I had to concentrate on his speech – he had moved to England two decades after I did. The young woman whose job it was to look carefully at our mouths, in case anyone failed to utter the correct oath, was wearing a hijab.

Here was a room full of people from all over the world, looking exactly like folks on an average London street. I wondered what all the stories were that have led my fellow Londoners to their free New Citizen pen.

And I remembered again why this city is, after all, the very best place to live.

Oh, and in case you’re wondering, the correct answers are…

Edinburgh: capital of Scotland
Christmas Eve: 24 December
National parks: 15
Emancipation Act: 1833
Dame in 2000: Mary Peters
Punch magazine: 1840s
London Eye: 135 meters

Welcome to the UK.