What if we viewed lived experience as an asset? As an asset of professional, economic,…
This blog is part writing therapy, part rant, part activism, part distress, part processing, part making peace. It flicks seamlessly between all of the above, so you never know quite what ‘part’ you’re in when you read it, heck sometimes I don’t even know what is motivating me to write it. It’s raw, it’s honest, it’s unedited. It’s ugly, it’s sad, it’s upsetting. Its full of anger and hurt and fear and frustration, desperation and depression, it’s trying to make peace, it’s wanting to fight back. It’s so many different things, and it’s true, every last word. I’ve written this over a few days and found it quite difficult, although somewhat cathartic (but not much). I can never accept the situation, but I’m learning to understand it. I apologise if this upsets people, but this is a true voice from the frontline — not the medical frontline, but the frontline of the battlefield in a war I know I’m inevitably going to lose if war breaks out (aka, if I get the coronavirus). Read on if you want an honest experience of the coronavirus pandemic from a person with exceptionally severe and complex health needs and being “she who shall not be saved”. It’s one woman’s journey through her emotions. This is real, it’s raw, and it’s right to share. People need to hear and understand the casualties of the reality of the current situation. Also, please don’t make snap judgements without reading the whole piece — this is not an attack on the decision-makers and the tough, heartbreaking decisions they have to make. It’s a by-product of these unusually difficult circumstances. Bear with it to the end — it all makes sense by the end.
This COVID-19/Coronavirus pandemic is spreading rapidly, the UK is now on lockdown for 3 weeks. I will be isolating for a minimum of 12 weeks, possibly may have to be longer. I cannot manage without any outside support, as I have 24 hour care needs, and am usually cared for by intensive care nurses 16 hours per day and trained carers overnight and doubling up alongside the nurse in the day, but my nurses could be recalled to the NHS at any time. My mum can manage the nursing role, but she can’t do my care 24/7 as she can only sleep in 1-1.5 hour increments, and has to be up at 7am for first IVs, and not to bed until at least 11pm after IVs finish and the carer arrives. So even if we ‘do away’ with the nurses during the day, my night carers are definitely still needed – but there are less carers than nurses, so less risk of infection. We are practising strict PPE wearing and infection control measures. I need to protect myself, but I also need to protect my primary carer (as in, not from my care package), whom I cannot manage without – and that’s my mum. She’s also one of my PAs and does most of the double-up care alongside the nurses, and she is my backup – I need her to be well to help me, if she goes down I’ll be seriously screwed. So mum and I both need to be kept away from any risks of getting the virus insofar as is possible. However, my reason for keeping away from the virus, goes much much deeper.
I know full well in this COVID-19 pandemic that my life is not one that will be saved. I will be considered too frail, unlikely to survive, unlikely to be able to be weaned off ventilation again on the other side, as I have respiratory muscle weakness (fortunately not currently needing ventilation), and unlikely to be returned to a meaningful quality of life – IF I survived COVID at all in the first place. On the clinical frailty scale, I’m a 7 or even 8. They don’t save people at that level, when forced to choose between them and a person with less needs and a higher survival rate.
I have had to accept this fact over the last few days. It doesn’t sit comfortably with me, I rage and cry that my life is devalued to the basis of my disabilities and needs rather than my life, outcomes and the difference I have made to the world – if you want to look at “worthiness” I think I have more than proved it, through all the work I’ve done, the difference I’ve made, the lives I’ve changed, the policies and guidance I’ve helped create, the behind the scenes work I do all the time in NHS and palliative care and personalised care and disability and charity work and so on, influencing the Director-General of the World Health Organisation to ensure palliative care is firmly on the agenda and that has been achieved, and having a personal friendship with him now. It’s changing hearts and minds and leading to improvements in health and care, it’s so many different contributions I’ve made to society through my work, my passion, my determination, and my skills and experience, it’s the amount of people who could easily stand and explain who I am and what work I do and how I’ve impacted upon their lives – not just disabled people, but professionals, the public, policy makers, MPs and ministers, directors and trustees, senior management teams, charities, and individuals working right across the NHS, health and social care sector and the world of disability, health needs and life-shortening illness. I’m the 9th most influential disabled person in Britain (2019) and have an MBE for my services to young people with disabilities, an Honorary Masters Degree for my commitment to public services, and in 2019 was invited to become a fellow of the Royal Society of Arts for my commitment to ensuring the fulfilment of the rights of disabled people. I have more than proved my worthiness of being alive on this planet, but it counts for nothing in this pandemic where my life will be deemed not worth saving, and where cut-throat (metaphorically) decisions are having to be made due to the limited resources and this overwhelming voracity and the large numbers becoming infected with COVID – we’re struggling now, and we’re not yet even near the peak.
I have had to make the difficult step to say that if I get COVID-19, I will not be going to hospital. Why would I go to hospital if it’s not going to try and save me? And at the same time leave me vulnerable, exposed, without the medications and TPN and IVs and specialist ITU nursing I have at home, to be in discomfort with staff who cannot provide the level of care I need and be isolated from my mum and sister and my beloved Assistance Dog Molly? I’d only contemplate hospital in the first place if I was getting desperate and needing intensive care beyond what we can give at home, with one of few things we can’t do at home being ventilation – but they won’t ventilate me anyway. Also, after all, my advance care plan (as it has in all versions I’ve had since I became palliative at the age of 16 – I am 10 years past my expiry date, as I call it) states that I want to be cared for and die at home. Equally, I could have the virus and get through it with the care I receive at home. But if intensive care beyond the scope of my homecare isn’t going to be provided, there’s no point in me going to hospital. Whilst the decision not to go to hospital in the first place is mine, the decision about treatment for COVID in my case isn’t within my control. So the “decision” I have made is about priorities, but the decision about care and treatment is not within my gift in the first place. I have to accept my life will not be saved. At home I have TPN, IV fluids, strong painkillers (Fentanyl and IV Paracetamol), antiemetics (intravenous and buccal), a mild antipsychotic drug to help me sleep and help restlessness, nebuliser, cough-assist (manual – bag valve mask style device called a lung volume recruitment device that helps me fully ventilate my lungs and cough better) – I even have IV antibiotics in stock at home, though they’re completely useless as this is a virus – and could easily source anticipatory or end of life drugs, as we have the facilities to manage any other items – syringe drivers, IVs, injections, nebulised medications, and could easily take on oxygen if that is even in sufficient supply to allow end of life patients to have it – or equally to ride out the virus, which I may be able to do. Not only do I have ITU nurses caring for me at home 16 hours per day, the fantastic hospice, a good GP, community nurses who we can call upon, and the advice of a world renowned team of medics and other professionals who can advise and support planning, but I also have my mum; my “I never want to be a nurse” mum, who can do many tasks a nurse can do – TPN, she can mix and prepare and administer most IV infusions and boluses, taking bloods from a central line, dressings, wound care, injections, syringe drivers, place subcutaneous lines, she can catheterise my Ileostomy when it blocks to relieve a bowel obstruction, she can catheterise my redundant bladder to drain the copious amounts of pus that drains from my it (it’s redundant due to an Ileal Conduit/Urostomy – they didn’t perform a cystectomy due to issues of me surviving the op), she can administer nebulised drugs, she can change stoma bags, she can cauterise granulation tissue around my PEG, she can remove stitches, and she knows her way round an oxygen bottle, and much much more. At home I have my own bed, my home comforts, Molly dog, mum, my sister, staff who know me well, I can control my environment, I can have treatments on time and PRN administered quickly unlike in hospital (the latter statement I make is no one’s fault – it’s just a reality for me in hospital) and I can watch TV, go on my laptop, and at end of life, have peace and quiet, have the people I know and love around me, Molly on the bed with me, and we can make my ending as peaceful and pain-free as possible.
The issue of “worth saving” does conjure up some feelings of resentment in me, that after all I’ve done, contributed, the difference I’ve made, lives I’ve transformed, policies I’ve changed, etc. that my life is inherently not worth saving, due to the severe level and complexity of my needs and my highly reduced and questionable ability to survive acute events such as this virus, but much as it makes me livid and distraught, I am a level-headed person who knows that this is about saving those who have the highest chance of being saved. My body is so much on its last legs — like I said, I’m not far off 10 years beyond my expiry date — and I have so much going on – neuromuscular/mitochondrial syndrome without a name that is either ultra-rare or unique and chances are I’ll never find out what it is, and even a diagnosis won’t change treatment, and then multiple organ failure, TPN and IVs dependency, venting PEG tube on 24/7 drainage, Ileostomy, Urostomy, restrictive lung disease and respiratory muscle weakness, autonomic neuropathy, a bowel that is always in and out of obstruction, chronic pancreatitis that keeps flaring up and down, a (redundant post Urostomy in 2014) bladder that is full of pus from years of infections in the bladder wall that no antibiotic will treat, numerous incurable infections resident in my body (and not just colonisation, but active infection), an immune system that doesn’t fight infection well and in whom I can be septic and have normal white blood cell counts, somehow managing to survive sepsis 14 times (not including hundreds more infections caught before sepsis), and this newer possibly autoimmune issue which is causing skin breakdown, mucosal ulcers all over the place, eye dryness and irritation, joint pain and swelling and seizing up/loss of movement in some joints, sleepiness / severe fatigue / loss of productivity, and causing me to be feverish 38.4-39.5 at least 80% of the time, and all that comes with a fever (chills, rigors, all over body pain/muscle aches/joint pain, headaches, nausea, sweats, sleepiness/fatigue, etc.) and more. Then there’s all the other things I’ve not even had a chance to mention, but that’s enough. Do I have a high enough chance of surviving the virus, for my life to be saved – potentially at the expense of someone else’s? It’s a funny head space to be in, feeling like I want to live at all costs, but knowing extensive efforts to prolong my life – if anyone would do it in the first place – could have an offset cost of someone else’s survival. Hence why my life won’t be saved – I need too much support, and intervention, and my body is weak, and my general prognosis is not great, and the probability of me surviving compared to most of the population isn’t exactly great odds.
I’ve gone through the stages of grief (formulated by the late, great Dr Elizabeth Kubler-Ross): these are denial, anger, bargaining, depression – but the “end” of this cycle (DABDA) for me right now does not end in “acceptance”. I do not accept this. I do not accept that my life is less worthy in the eyes of who should be saved. I don’t accept that I deserve attempts to save and sustain my life to be taken away in favour of someone with less needs. I don’t accept that I’m not considered to have sufficient chance of survival to initiate extensive and intensive measures to support and potentially save my life. The end of that cycle in this case does not end in acceptance. Understanding? Yes. To an extent I understand. Professionals need to treat people with the best chance of survival. I don’t have the greatest prospects. So I shall say for now that ‘end stage’ of that grief cycle right now is not acceptance, I cannot accept I’m not worth saving, but I understand why it has to be this way. I understand it’s not personally levied against me because people deliberately want me to die. It’s not someone in an ivory tower saying “get rid of her”. It’s a pandemic in which we have so few resources compared to the insurmountable, unsustainable demand, that my health means that if there’s me and someone else without health needs vying for the same ventilator, that the person with the greatest chance of survival will get the ventilator.
I just want to live. I have so much to do, so many plans, so many ideas. I’ve got a life to live, a difference to make, people to educate and enlighten, policies to help build and change, services to help improve, people to support and mentor, and precious time with my family to be had. I’m nearing 10 years beyond my original prognosis. I shouldn’t still be here. I’ve survived sepsis 14 times – is that not a great track record? Should I put “14 straight A stars in sepsis” on my file? Sorry, just my bad humour. But it does show that, despite how weak and fragile my body is, I’ve got a 100% success rate in surviving life-threatening events, not just sepsis, dozens and dozens of times I’ve survived when told to expect me not to, but I’m weak, frailer than I’ve ever been, as debilitated as I’ve ever been; if it’s a choice between prolonging my life for months, maybe a few years, possibly even more, but with all my health needs, complications, and whatever the virus itself had done to me – maybe I’d be dependent on ventilation afterwards, as the virus attacked my already weak lungs and body? To save me knowing all of the above and the small chance of my survival, vs someone who could survive with a high chance of doing so from the outset, and who has a chance of survival and of going back to a “normal” life post coronavirus? This isn’t about personal worth, as it may sound at times in this blog. This is indiscriminate. This is about who has the greatest chance of survival. My life matters, my life is worthy, my life is valuable, my life is appreciated. But we’re in a crisis of innumerable proportions, and people on the front line have to make heartbreaking decisions. Decisions that will haunt them for life. Decisions that will go against everything they believe about being a doctor or nurse. Decisions that aren’t fair in any way, but still have to be made.
I say thank you to the NHS, for all everyone is doing. I may make it out the other side of this pandemic; but I may not. One thing I can say, however, is that the NHS kept me alive against the odds for years. It gave me the ability to live a amazing life and to achieve great things and make a difference in the would.
My life matters now, and it matters after this. I’ve created a legacy to be proud of.
One of my favourite quotes is
“We all die. The goal is not to live forever. It’s to create something that will.”
Please, please, please, if you read this blog, create an advance care plan.
Create an advance decision for what treatment you would or would not want.
Appoint a Lasting Power of Attorney, especially for Health and Welfare but if possible for finances too.
Create an advance statement, recording your preferences and important information about you, what matters to you, what you like and dislike, and so on.
Have the conversation with your family, please, but make sure ALL of you do the above. Next of kin cannot legally make decisions. Only an LPA can. If your next of kin disagreed with doctors, the doctors decision would be followed unless documented evidence and the appointing of a Power of Attorney and/or the person had an Advance Decision staring their wishes. Take matters into your own hands to ensure YOUR wishes are followed. Now is the best time. Don’t leave it until it’s too late.