Death and dying: it’s biography not biology that matters most at the end

We Need to Talk about Death Poster

Image courtesy of the BBC

This week’s guest blog post is a review of the recent BBC Horizon documentary, We Need to Talk about Death, written by Living Life to the Fullest Co-Researcher, Sally Whitney. In the documentary, Dr Kevin Fong makes a personal journey through the moral questions about death that face not just the medical profession, but each and every one of us. Many of the themes discussed in the documentary relate to the stories of disabled children and young people living with conditions labelled as life-limiting and life-threatening, and those of their families, that we are gathering in our project, Living Life to the Fullest. You can watch We Need to Talk about Death here on BBC iPlayer.

The program touched on issues that were relevant not just to palliative care and the process of dying, but in fact seemed to me to be applicable to the whole of healthcare.

It portrayed a range of doctors and facilities (hospices and cancer centres) that clearly understood the importance of doctors taking a step back from their everyday, medical school-enforced method of treating patients. In normal practice doctors are happiest “actively doing things” to improve symptoms of pathology, “continuing treatment in a pursuit of a cure”, as this has been at the core of all their training. And this pursuit of ‘curing’ can have a negative effect on patients’ choice, with some feeling penalised for not choosing to go for the most aggressive treatment option. Some people don’t even feel they have the option – whatever the cost to them personally. One patient in the documentary commented, “you may feel duty bound to go ahead with the treatments”.

A consultant admitted; it’s “easy to slip into the conveyor belt of big treatments,‘but harder to have the conversation [about the facts of dying]. It’s easy to go to default [mode].”

Importantly, this programme highlighted the need for a change of focus. One of the palliative care doctors stated “a patient passing away isn’t a failure” and conceded that at the end of a person’s life they want to “spend (their) time doing the things that make [them] human, not things that make blood tests better”.

The comprehension that dying is a part of a person’s life, a life that holds journeys, histories and relationships, and is not just a biological event happening to a biological organism, is a breakthrough. It’s about recognising the patient as a multi-layered person, giving choice to that person and giving them back the control over their life and their body – ultimately, treating them as a whole. The doctors on the documentary described this shift and change of focus as a tool that “empowers the patient… [looking] at what’s important; the quality as well as the quantity of their lives. It’s about not letting disease control your life”. And that’s what seemed most striking, the need to give patients choice. Not just in the matter of their lives ending and how they want that to happen, but also for ALL patients under the authority of physicians. Choice and ownership of one’s own body and way of living is key. One patient stated, “it’s about what I want to do with my life not what others want me to do with my life”. Simply put, it’s a “change of focus to what’s going to make an individual’s life better, not just [bring about] change in a scan”.

The understanding that the dying process is not just a biological stage nor a failure on behalf of both patient and doctor to ‘overcome’ a disease was summarised by one of the hospice doctors when he said; “Dying isn’t about dying from a disease, it’s about dying from a life”. It was this emphasis on life that was the central theme of the documentary.

The notion of dying being a process of completing life gave a poignant and positive interpretation of death. Dying becomes a period where a person uses their energy to complete life.

More than that, the documentary highlighted some of the same themes we have drawn from our project, Living Life to the Fullest. That, regardless of the length of life or the timescale one has before it ends, each life can be lived to the full, fully completed and that every moment of that life is important no matter how long it is. In regards to the young people living with LL/LTIs that have participated in our project, it is clear that every moment up to the point of death is important, valued and lived fully. The provision of palliative care and hospices for patients allows this ‘fullness’ of living and allows them to “live the best life they can”.

However, what was clear was that this isn’t something that can be achieved without a lot of effort and energy. The programme spoke of “frank, in depth” conversations about death that are difficult to have. However, once had, “almost everyone feels better for having them”. This ability to discuss dying leads to a number of positive outcomes for an individual; it helps them to “prepare, enables them to grieve and may lead to an acceptance of something that is inevitable for all of us”. Most importantly, it returns the power to have both choice and control to the patient. They have the right to reclaim the narrative of their lives back from doctors and live their chosen, full lives to the very end.

The power of choice (not just in terms of treatment options) was strongly illustrated by the discussion about the dying process only being able to happen once the patient has permitted it. It can only happen successfully when a person “understands what is happening, engages with it” and has taken steps to allow it to happen. These steps may involve the resolution of relationships, completion of tasks, planning and decisions about the meaning a person attaches to the life they’ve lived. If we consider dying to be the concluding chapter to the story of a life then we can more clearly understand it as needing to be a greatly considered, significant stage of a person’s journey that needs to be completed. As one of the palliative care consultants stated about death “it’s about the biography, not the biology”.

Perhaps the whole of medicine can learn something from the palliative care approach? A life is only as valuable as a person attributes meaning to it. Therefore, clinicians need to consider what course of action adds the greatest value to their patient’s life, whether that life is only halfway through its journey or whether it’s coming to the end. Whatever that action may be, it is clear that it needs to be something that allows each individual to live their life to the fullest, regardless of time left.

Sally Whitney, Living Life to the Fullest Co-Researcher

 

 

 

Parliamentary debate on support for children with life-limiting & life-threatening conditions

Palace of Westminister, LondonToday (Tuesday 29 January), MPs will participate in a crucial debate on support for children with life-limiting and life-threatening conditions across England.

Why is this happening?

Late last year the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care published a report on the extent to which the government’s end of life care commitment is being met for babies, children and young people who live with life-limiting and life-threatening conditions.

The government’s ‘Our Commitment to You for End of Life Care’ sets out what ministers expect commissioners to attain for babies, children and young people with life-limiting and life-threatening conditions, including:

  • Respite care, delivered in a children’s hospice setting, by community palliative care services, or ‘hospice at home’ services.
  • Good collaboration between different clinical and non-clinical services across a variety of different settings.
  • Support around bereavement, both before and after a child dies.
  • Prioritisation of children’s palliative care in commissioners’ strategic planning so that services can work together seamlessly and advance care planning can be shared and acted upon.

(Together for Short Lives, 2019)

The APPG is a ‘cross-party group of MPs and peers which seeks to educate, inform and motivate other parliamentarians to take action to transform the lives of children and young people across the UK with life-limiting and life-threatening conditions’ (Together for Short Lives, 2019), and the secretariat is the Living Life to the Fullest Project’s critical friend, Together for Short Lives.

What is the problem?

The inquiry behind the APPG’s report concluded that, despite the government’s commitment, children and families’ access to quality palliative care is erratic and depends largely on where they live in England. This is unjust and equates to a serious health inequality for disabled babies, children and young people with LL/LTIs and their families.

Through narrative and arts-informed methods, the Living Life to the Fullest project – based at the University of Sheffield – is hearing the stories of disabled children and young people and their families across the UK. Many of these stories – particularly those of parents – have reported that critical forms of care and support are being denied to their children, making life harder for families. Other parents have told of a serious lack of bereavement support after their child has died.

What will happen next?

Importantly, the APPG has demarcated a series of clear recommendations for government ministers and officials, working with partners, in order to make attempts to overcome the barriers that are endangering the end of life care commitment.

According to Together for Short Lives (2019), ‘this debate, secured by Jim Shannon MP, Vice-Chair of the APPG, is a crucial opportunity for MPs to call upon the minister to take these actions and set out what steps the government is taking to respond to the APPG’s recommendations’.

We will update you on the outcomes of today’s debate next week. You can access and download the APPG’s inquiry report here.

 

 

Poetry as the means to tell stories

Poster of the poetry workshopsOn Monday 21st January, Living Life to the Fullest researcher Kirsty Liddiard travelled to Loughborough to meet with colleagues from the Attenborough Arts Centre and Rainbows Children’s Hospice to plan a series of poetry workshops for children and young people living with life-limiting and life-threatening impairments (LL/LTIs).

The poetry workshops are taking place on Thursday 21st February at the Attenborough Arts Centre and Friday 22nd February at Rainbows Children’s Hospice.

Living Life to the Fullest is really excited that the workshops will be facilitated by Sipho Ndlovu, a spoken word artist and poet whose work explores disability, dyslexia and difference. Check his brilliant piece Re-Code by Man Made Youth here and For the City’s Young here.

The aim of the workshops is to enable disabled children and young people to tell new stories of their experiences of disability through poetry and spoken word arts.

An image of poet Sipho Ndlovu

Sipho Ndlovu, For the City’s Young

An image of poet Sipho Ndlovu

Sipho Ndlovu, Re-Code, by Man Mad Youth

To learn more about the Living Life to the Fullest project, please see here.

Turning 30

We are lucky this week to have a special blog post written by our brilliant Living Life to the Fullest Co-Researcher Carrie Aimes. Carrie writes her own blog, Life on the Slow Lane, which you can find here

Picture of Carrie Aimes

Carrie Aimes

Though I’d rather not admit it, I have a pretty big birthday coming up. In just over a week, I turn 30! It might not seem like much of a milestone to most people. But for those of us with muscular dystrophy, 30 is a big deal.

I’ve never really considered or cared much about age. Getting older has never bothered me, and I didn’t think I’d be fazed by reaching the big 3-0. But I’ll be honest, it is getting to me…just a little.

For various reasons, I’m not a fan of my own birthday at all. I’d rather it went unacknowledged and unnoticed. I hate any form of attention and am much happier when the focus is on other people. I’m definitely more of a hide in the corner type!

Back in October, I went on a five-day cruise to Amsterdam and Bruges, to celebrate my birthday. There are no other upcoming plans (at least, none that I’m aware of).

Those closest to me know I don’t like surprises (perhaps I am a bit of a control freak). So, if anything, all that’s left to come is a small family gathering – basically Sunday roast with the folks, the brothers, my sister-in-law and baby nephew. And that suits me just fine!

Muscular Dystrophy – A Life-limiting Condition

Accept it or not, the sad fact is, muscular dystrophy is a life-limiting condition. I’m aware of others who were told by medical professionals that they shouldn’t expect to live beyond the age of 20 (if that). In contrast, my parents and I were never given any indication whatsoever of my life expectancy. At no point were we told, ‘Carrie won’t reach adulthood’. Perhaps my consultants were being overly cautious. Perhaps they were just clueless! (I suspect the latter).

In a way, this allowed me to grow up in a state of blissful ignorance. For a long time, I believed I had just as much chance of growing old and wrinkly as the next person. It wasn’t until my late teens that I realised this wasn’t the case.

Now, I don’t want to get all deep and downbeat – just trying to keep it real (on the advice of certain people. You know who you are!).

Essentially, for better or worse, life has taught me to expect nothing. Expectation often leads to disappointment. These days, I try to go with the flow, I don’t make long-term plans or look too far into the future. I prefer to focus on the here and now.

Right now, I’m going to hold on to my youth for as long as possible by continuing to laugh at silly, childish things. I’m all about laughing, playing and having fun – believe me, I’ve had more than my fair share of serious!

And to anyone who doesn’t know otherwise, I’ll soon be 25, not 30 – thank’ya muchly!

Disabled Women’s Access to Healthcare

Cervical screening saves lives poster

An NHS public health campaign emphasising the importance of women’s access to regular smear tests.

Living Life to the Fullest Co-Researcher Emma Vogelmann, who works for MDUK, is collaborating with others to campaign for better access to healthcare for disabled women. The new campaign focuses on disabled women’s rights to access to good quality sexual and reproductive healthcare. Many disabled women miss important reproductive and sexual health screenings because of simple factors such as their GP surgery doesn’t have a hoist to support accessible examinations. This is compounded by problematic ableist assumptions about disabled women’s sexual and reproductive lives – that such care is secondary in the lives of disabled women because they are presumed not to have sexual and intimate relationships with others or become mothers – neither of which is the case, of course.

The campaign began through MDUK Trailblazer Fiona Anderson calling for accessible cervical screenings. Fiona says on her petition, “I have NEVER had a smear test because my GP practice does not have a hoist and couldn’t come up with another safe solution to examine me. Home visits for Cervical Screenings aren’t covered by the medical centre’s insurance and there is no database of clinics/medical centres with hoists to refer me somewhere else.” The petition now has over 85,000 signatures. You can sign the petition here.

Emma said, “I’m really excited about this campaign. Disabled women face so many barriers, but basic healthcare and screenings should be as available to us as easily as able-bodied women”.

To find out more about this important campaign, please see here.

 

 

 

 

 

The meaning of birthdays

A picture of a woman in a wheelchair (Sally) with her assistance dog, Ethan.

Sally Whitney, Co-Researcher, Living Life to the Fullest

We’re really thrilled to share this very special blog post written by Living Life to the Fullest Co-Researcher Sally Whitney. In this post, Sally shares the meaning of birthdays and getting older as a young woman who has had complex, chronic diseases since adolescence. 

Getting older

I have always loved birthdays. Since I was a small child I remember counting down the months and days until my next birthday. I would always, and still do, have elaborate festivities and parties to celebrate the occasion. I also try and stretch out the celebrations for as long as possible and it’s not a birthday unless I am wearing a badge declaring it loudly and proudly.

As I have got older I have noticed my peers and relatives becoming less and less excited about their own birthdays and bemoaning getting older. I was aware that my parents weren’t super keen to reach major milestones such as turning fifty and I’m pretty sure that if I had been asked as a child when you are officially ‘old’, I would have said 50 was an old aged pensioner.

Negativity towards Ageing

However, I have increasingly noticed negative attitudes towards getting old and ageing. My friends seem to have been complaining about birthdays since we all turned 21 – that was 10 years ago! 21 is supposed to be a momentous age, a day to be remembered always. I did have a big celebration but I remember the awkward smiles and pitying looks: I had recently escaped hospital after a nearly 8 month stay and had been lucky to escape with my life. I was also skeletally thin, with a BMI of 11, and coming to grips with a new diagnosis with a dizzying array of symptoms and medications. I was still in the midst of shrugging off a damning misdiagnosis and struggling to work out who I was and where I fit into this new world I had re-entered. I had to learn everything from scratch. From eating dinner at a table and using cutlery to ordering coffee at a café. So my 21st to me was an accomplishment of freeing myself of the chains of hospitalisation (thus a reason to celebrate) but to everyone else it seemed like I was desperately hanging on to the very precipice of life.

I have celebrated each consequent birthday with jubilation and pride. I have wondered why my own perspective is so radically different from the attitude of my peers and society in general.

Youth celebrated

On the whole, youth and all that comes with it is held in high esteem. Products are sold to make us feel or look younger. The concept of drinking from the fountain of youth capture society’s inclination to want to stay young, fresh-faced and nubile. The dread that is conjured up by facing the next big birthday seems to be an accepted and almost automatic feeling. However, I really don’t feel this. For me living one year more is a feat to be celebrated. I am beyond proud when I reach another year older. I am proud of both my body and mind for remaining strong enough to have aged another year.

Effects on body, body functioning less well

Perhaps the fixation on youth and negative attitude toward ageing is partly due to the effects on the body that growing older incurs. As we age the somewhat inevitable wrinkles, “saggyness” and weight changes are fought against fiercely. The changes to the body reflect our age more clearly than the age we might feel in our minds. But perhaps it’s more than the an aversion to wrinkles that causes us to protest the ageing process? Perhaps it’s the more subtle understanding that our bodies are going to start functioning less well? In an able-bodied woman a small loss of bladder control, for example, may be a source of great shame and concern. However, I have experienced the failure of various organs and organ systems since the age of 17. I no longer expect my body to function flawlessly. At several stages during my illness I have felt very much like an old lady – I have the bone density of a great-grand mother for example. However, despite needing the level of medical treatment and care of someone a lot older than me, I still rejoice at the dawn of each new year of life. It is the very fact that my body still functions, however poorly, that I am celebrating. It is not how well it is functioning but the fact it is functioning enough to keep me alive. This, to me, is something to be celebrated.

Avoidance of growing up and occasions to “adult”

There also seems to be a trend in our culture towards the rejection of being an “adult”. We have coined terms such as “adulting” and actively seek ways to avoid feeling like an adult. Perhaps it is the idea of giving up the fun party times that a non-adult enjoys or the amount of responsibility that being an adult entails that had caused us to shy away from taking on an adult status. I have to admit that, despite my 31 years of age, I still feel very much like a child in some ways. However, in other ways I feel like I have a soul older than my years. Perhaps this is because I became ill whilst still a teenager. I had just started to enjoy partying and going out when I was stopped in my tracks by a rapid decline in health. Skip forward 13 years and I have only been ‘out partying’ a couple of times. I have missed my responsibility-free years and opportunity to be reckless. Parts of me crave the opportunity to go back and reclaim those years but other parts of me have had to grow up quickly. I recognise the implications of reckless behaviour as every aspect of my life needs careful planning in order to reduce serious health consequences.

Care and independence

The very nature of needing to be ‘cared for’ also blurs the boundaries of childhood and adulthood. In some ways, I still haven’t had to grow up as I haven’t had the opportunity to take on simple grown up things like cooking for myself or the more significant aspects of ageing like getting a job.

It is also interesting to note the cultural differences around the world with regard to attitude towards ageing. In some countries, growing old is something to be revered and the elders in society are held in great respect. In fact, they are considered to be the heads of both families and society. Whereas in the current climate that I live, it is the youthful celebrities who are revered – the shinier and more youthful the better! As I have lived through the different experiences that life has thrown at me, I have matured. I have grown through life lessons and I recognise that I would not be the person I am today if I had not persevered and used the challenges to develop my character. Every birthday I jokingly ask, “do I seem wiser today?”. However, culturally, it seems that the substance of wisdom is not as valued as the froth and frill of youth.

Age-based milestones

There is also a conception that as we age we need to attain certain milestones at certain ages. These expectations are sewn into the fabric of our society. There is an expectation that after education we will go on to follow a career, rent a home, find a partner, buy a house and get married and have a baby. I think one of the reasons people shy away from the joy of growing older is that they feel under pressure to not only reach these milestones but within a certain timeframe. For me, these milestones have become somewhat meaningless. I have reached a place where I no longer measure my life by these pre-determined chapters. I was never able to complete university and required 24 hour care before I could ever graduate. My ill health has meant that for a long time my full-time job turned into trying to stay alive. I felt resigned to the fact that I would never accomplish any of these milestones at all and it seemed as if society was determined to prevent me from doing so.

At one point I looked into buying a flat with a substantial deposit I had accrued. I researched the market only to find that there was only one mortgage provider (specialising in clients with long-term illness) willing to lend to someone who lived on health benefits without a career. This provider would not lend to me however as I had student loan debts from my time spent at university. The only way they were willing to lend to me was if I paid these off, which I would have had to do using the sum of money I had saved, leaving me in a position where I no longer had a deposit. This was heart breaking as I felt that I was being deprived the opportunity to be a homeowner because I had chosen to undertake further education.

However, even the failure to meet expected milestones has not rid me of the joy of celebrating living another year longer. My life is measured by different milestones. The point of reaching diagnosis, of getting appropriate care in place and more significantly accepting my disability and what it means. Each birthday is a celebration of another year where I have fought to be heard. Fought to be provided the correct treatment. Fought to keep my body ticking over into a new year. Ultimately it is a celebration of still being alive.

This is cause for celebration indeed. Since I don’t know what the future holds health wise, I have to live my life in the present and value each moment. This could be said for any person as no one knows what is around the next corner. Someone may have their life planned out and may not feel like celebrating becoming a year older if they haven’t followed their plan to the pre-decided timescale, yet they too live in the face of uncertainty. Perhaps this uncertainty isn’t as apparent but it is still true. This may be a point of learning for those living healthy ‘normal’ lives; that the present moment is the only reality we have and it needs to be cherished.

My grandfather and I decided in my twenties that if I had not graduated from university by the time I was thirty then we would have another form of graduation ceremony. A ceremony where we celebrated that I had navigated the hurdles and weathered the storms of remaining alive despite life-threatening conditions. His acknowledgement of the fact that I was still maturing as an individual in the face of adversity was just as significant, if not more, as graduating from university and following a career. I felt that he understood my need to celebrate my own vitality. In the end, the year I turned 30 was the same year as I got engaged and got married and moved in with my husband. Our wedding became a celebration of not only the joining of two individuals, but a real festival of being alive, rejoicing in the moment and acknowledging the hard road we had travelled. While my heart is still beating, I will keep on celebrating being another year older. I will strive to view every wrinkle as a roadmap of my life and welcome each year with thankfulness. And yes, I will continue to keep wearing a Birthday badge.

Sally Whitney, Living Life to the Fullest Co-Researcher

Happy International Day of Disabled People 2018!

International Day of Disabled People UN logoToday, 3rd December (2018), is the International Day of Disabled People. In 1981 the United Nations proclaimed today as a day of recognition and celebration of the achievements of disabled people across the world.

According the the UN (2018), the International Day of Disabled People ‘aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life’.

Here at Living Life to the Fullest, we fully support the idea of celebrating the contributions of disabled people – one of the key aims of our project is to explore and mark the contributions children and young people with life-limiting and life-threatening impairments make to their families, schools, and communities, as well as the multiple other areas of their lives that are important and meaningful to them.

This year, the #PurpleLightUp movement has grown with verve. The campaign, a disabled employee led movement created by the organisation PurpleSpace to re-balance the narrative around disability, deficit and work, is a global celebration of the economic contributions of disabled people. Channel 4 is a big supporter of #PurpleLightUp, marking the International Day of Disabled People by launching a global #PurpleLightUp campaign across its network. Channel 4 will broadcast a range of initiatives that celebrate economic contributions made by disabled people, which is in line with the the International Day of Disabled People’s theme of inclusivity.

The first film, which was broadcast on Channel 4 on November 30, was funded by eight major organisations: BT, HSBC, Lloyds, Nationwide, Lloyd’s of London, Reed Smith, Scope and Virgin Media.

While it might be worth critically questioning why only the economic contributions of disabled people are worthy of such celebration, any campaign that highlights the significant discrimination of disabled people when finding and being in employment is, of course, a positive and necessary move. According to the Disabled Living Foundation, just 3.5 million of the 13.3 million disabled people in the UK are in employment. For autistic or learning disabled people finding employment is much harder. According to the National Autistic Society just 16% of people with autism are in full-time paid work, while less than 6% of learning disabled people are in full-time employment. In Living Life to the Fullest, we have been told routinely by young disabled people with life limiting and life threatening impairments of the relentless barriers they face within both education and access to meaningful employment.

Our Co-Researcher Emma Vogelmann, who works for Muscular Dystrophy UK (MDUK) on policy work and disabled employment, said “Recently, the Employability Project has been busy setting up new and exciting opportunities for young disabled people. Our Employability weekend was a huge success with great sessions to boost people’s confidence entering the work world. Our attendees really benefited from disability tailored advice which can be hard to find at colleges and universities. We’ve also set up an exciting new Mentoring Program to match people on the Moving Up project with a mentor to give them ongoing support. This is an incredibly important piece of work for MDUK as we see so many young disabled people who struggle to find work when they are very willing and more than able. We want to show young disabled people why they should be confident in their abilities.”

However, we should also ask critical questions of the big businesses promoting #PurpleLightUp. Virgin, for example, has been been strongly criticised as a key contributor to the privatisation of the NHS. Awarded almost £2 billion worth of NHS contracts over the past five years, Richard Branson’s company has become one of the UK’s leading healthcare providers. Shockingly, even the Department of Work and Pensions (DWP) contractors Atos is supporting #PurpleLightUp. If we remember back just a few years, Atos led the disastrous and damaging Work Capability Assessment (WCA), as well as the fitness-to-work assessments for Employment Support Allowance (ESA), which caused disabled people and their families significant devastation and distress in the name of austerity. Furthermore, Atos now supports Personal Independent Payment (PIP) assessments, and thus, according to Disabled People Against the Cuts (2018), are ‘in part responsible for the long delays declared unlawful in the courts that have left people without income, food and at risk of losing their homes’.

So let’s enjoy the International Day of Disabled People as a day to mark and celebrate the brilliant contributions of all disabled people across the UK and the world, as well as a time to mark the importance of disabled people’s access to rights and better wellbeing. But let’s remain cautious of the ways in which such celebration gets taken up, the new meanings it gets imbued with and why, and most importantly of all, its co-option by those companies and organisations that could do a lot more to employ, support and advocate for disabled people and their families.

References

Disabled People Against the Cuts (2018) Atos now recognising our ‘hardships and struggles. Online. Available from: https://dpac.uk.net/2015/06/atos-now-recognising-our-hardships-and-struggles/ [Accessed 2/12/2018]

UN (2018) International Day of Persons with Disabilities – 3 December. Online. Available from: http://www.un.org/en/events/disabilitiesday/ [Accessed 2/12/2018]