Dying Matters

This week, it’s Dying Matters awareness week and for the first time, prompted by the amazing Kate Granger via the wonderful tool of Twitter, I have joined the blogosphere. I want to reflect on death and dying and be, in some small way, part of the changing tide that aims to sweep some of the taboo away from the difficult yet inevitable conversations around death and dying.

I think about death a lot. Not because I myself am dying, or ill, or morbid, but because I am a general physician. I spend a lot of my working life looking after patients and their families at times of real difficulty. I have been training or working as a doctor for over twenty years, and the resilience and humanity of patients, families and staff never ceases to amaze me. It becomes particularly apparent during times of real crisis, and to witness it is one of the unsung benefits of the job I do and reaffirms my faith in human nature on a daily basis.

Throughout my working life, I have been involved with death in many different guises and in many different ways. In the last few weeks, I have sat in the outpatient clinic and given the diagnosis of terminal cancer to patients and their families, and watched the light of hope flicker and die behind a patients’ eyes whilst their spouses weep silently out of their line of vision. I have waited in the door of the clinic room for the inevitable return of a grown up child who needs to ask, out of earshot, how long their parent has left, as if knowing and planning and sorting will somehow hold things at bay. I have sat at the bedside of patients who, only days before, were planning holidays or weddings or birthdays, and I have waited in silence as they accept that those plans would not be realised. I have looked into the eyes of patients who have asked me to help them die, who have told me how frightened they are, who are in pain, who are not ready, who are raging against the dying of the light. And I have looked into the eyes of those at peace, who tell me they fear nothing, who have already lived each day as if it were their last and have no regrets, no unfinished business, no unspoken words.

I have stood in the resuscitation room of the emergency department looking at scans which show unsurvivable events, moving between patient and relatives room and back again, piecing together not just a diagnosis but an idea of a life almost gone. I have huddled with relatives of dying patients in corridors, in stairwells, in car parks and explained in simple terms the most complex of ideas – that the person they love is leaving forever. I have dragged myself wearily up the stairs to the ward after a long clinic to talk to the families of patients who are too unwell or confused to know who their children are. I have sat with patients I have known since my first days as a consultant and watched them breathe their last breaths. I have stood in a side room in the twilight and exchanged quiet memories of patients with their still-present relatives after certifying them dead. I have sat in the ward staff room, surrounded by staff jumpers and health and safety notices and leftover pizza whilst the just-bereaved tell me about the loved one who was everything to them and a stranger to me. I have been to the hospital mortuary to fill in death certificates and cremation forms and watched as the cold bodies of patients I first met in clinic when they were full of warmth and optimism are pulled from the freezer. I have sat in my office and heard raw grief pouring out from relatives of patients who the system – us, me – has let down in some way. These are families whose grief is overlaid with regret and anger and guilt, and for whom the path to resolution will be tortuous. And I have sat in my office and wept for the times when I know in my heart of hearts that we haven’t done the best we could. We haven’t been as open or as honest as we should have been. We have let our desire for a ‘good outcome’ cloud our acceptance of a poor one. We have failed to diagnose dying until it’s too late. We haven’t had the difficult conversations that needed to be had because we were too busy or too scared or too uncertain. Those are the times that stick in my mind, and from which I learn the most, although as I learn I am acutely aware that this learning does not benefit those who I learn from, or make their grief any easier to bear.

At the end of each day, I come home and try and distil into meaningful, appropriate language the things I have done and the things I have seen. ‘Did you make the poorly people better, Mummy?’ the children ask. Some of them, I say. Some of them. Often my children are in bed when I get back to the sanctuary of home. I watch them sleeping and marvel at their youth, the smoothness of their skin, the absence of drips and bruises and oxygen and disease. Sometimes I creep into the baby’s room and lift her from her cot and sit in the dark with her asleep in my arms, heavy and sighing. I let her head rest on my shoulder and the weight of her seems to press out some of the sadness that I have absorbed through the day.

But the thing that runs through all of my days, particularly the ones which hold a lot of suffering, the thing they never mentioned at medical school, is not death but love. Who we love and how we love them is brought into sharp relief when the moment comes for us to be parted by death. Love is indeed a many-splendoured thing, and how we die is, I believe, a reflection of how we have loved and were loved in life. So yes, Dying Matters. And for me, a hospital physician, death and dying is a fundamental part of what I do. The Francis Report, with it’s (and the ensuing media) scrutiny of avoidable deaths, has brought into new focus that more often than not, it’s not just the dying that matters but it’s how it happens. And we need to be better, more open, more honest. So perhaps when my children ask me if I made the poorly people better, I should tell them the truth. I can’t make them all better, but for the ones who are dying, making sure that their dying happens well is one of the most important jobs I can do and something that we as medics and as humans should value more highly.

May 2013.

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54 thoughts on “Dying Matters

  1. Thank you. A very humane and though-provoking piece. Affirms the importance of high quality end of life care where it can be planned and for awareness of the impact of death and dying on everyone (including professionals) when it isn’t.

  2. Excellent article ….Thank you, I couldnt agree more with your humane approach to death and dying. We are a strange lot….death is the one certainty in life and we block it…..like we can avoid the moment! I suppose its the lack of control “nobody knows when the grim reaper will strike”!that influences our thinking? But nobody has a magic wand and extending life relies on many things and many times I have been amazed at how robust and fragile life is…depending on the individual. My dear old Dad always said “I’ll live as long as I can and I’ll die when I can’t help it” Dad died aged 87 after a long hard life and we are all so grateful he made “old bones”….without the worries of young family and earning his living…Dad settled into old age and was a lovely gentle man who loved and was loved by all! The importance of high quality end of life care is now the focus and we must get it right! Doctors & nurses are human beings too and must be fully supported in their work. ….not only by patients but senior staff too. A heath team has many participants, who all need to be fully involved. Thank you again!

  3. A beautifully written, moving piece. I am vice-chair of the organisation Compassion in Dying, which works to support patients’ choices, within the scope of the current law, about how to die. For me, your key insight is “It’s not just the dying that matters but it’s how it happens.” What do you think would make most difference to help hospitals deal better with dying?

    • Thanks Suzanne. I think staffing the front line properly and making sure they have the time and energy to care, as well as valuing that compassion, makes the most difference.

  4. Thank you so much for this. The feelings of professionals are much forgotten. As somebody who has dealt with death of too many loved ones over the last few years I will admit that it has never occurred to me how difficult it is for the professionals. Too tied up in being strong for the loved ones and feeling sorry for myself. Dying Matters to every individual involved in the journey’s end.

  5. This is a really excellent piece Elin. You write really well and it has the power and authenticity that comes from your direct involvement. I look forward to your next post!

  6. Thought provoking piece.

    When I was a young boy I asked my father about death – young kids do this. He was born in Shanghai in the 30s and he said that every day as a boy going to school he would see dead bodies. There were bodies from the perpetual Chinese-Japanese war that started in 1937, but there were also bodies from the harsh life that people had in Shanghai at that time. For example, in the winter of 1938 up to 400 bodies a day were removed from the streets of Shanghai – mostly homeless refugees from the war who had died in the bitterly cold winter.

    So my father was used to seeing bodies, his experience of death was different. In 1943 my family were interned in Lunghua (the same camp as Ballard) and for the last 6 months he was there my father was very ill with a cancerous growth in his elbow, so he spent that time in the camp hospital. At night the ward was noisy – many people were there with respiratory diseases and some people were delirious. For my father death was a sudden silence, where before there was the wheeze of an old chap he played dominoes with, there was now silence.

    • Gosh – that’s a really interesting historical perspective. I think attitudes have shifted over the last few decades. Thanks for reading, and for commenting.

  7. Thank you for writing this, someone special to me does the same job you do and she would agree that how people and how the system works when people die is very important. Not only for the individual experiencing death, but for the families (and medical staff treating them) it is critical that the time is spent getting things right so a “good death” can occur and everyone can move on a little easier.
    For loved ones to face a ‘terrible’ death can be debilitating in so many ways.

  8. Absolutely breathtaking. Thank you so much for writing, and sharing, that with us all Elin. Many will be able to relate to some of these experiences, and cling on every word. A painful reminder of how, and why, we should endeavour to make every death, as beautiful and perfect, as is humanly possible.

  9. a good piece of writing that highlights one of natures most natural affects, perhaps a discussion on why some people feel so indifferent and hesitant to discussing it and perhaps why people so fear death or not

  10. Pingback: A Good Death: good for whom? | Anne Bruton's Blog

  11. Sitting for the desperate last hours alongside a friend and her dying teenage daughter, it occurred to me to ask the caring but overworked nurse trying to look after her and others what professional resources she had for support after a day like that.
    None. That’s all. How long before she is totally spent when overworked in circumstances like that?
    The same thoughts occur in relation to you. What value are we placing on professionals when we expect them to constantly give without offering anything but more demands in return?
    Thank you for your blog and the respect you are showing those you look after. We should be showing you far more respect in your turn.

    • Thank you. I am lucky to have great colleagues and a supportive family but it can be very tough, part of writing this blog was to help me acknowledge that I suppose, and not to be too hard on myself.

  12. Thank you for writing this. I’m a priest so find myself in some of the same situations, though with a slightly different perspective. Your compassion & reflective approach must surely mean that those who die in your care feel cared for and supported come what may.

  13. As an ICU consultant I share your views but could never have hoped to express them as well. In the modern world we often deny the possibility of death until it is too late for it to be managed well.

  14. Elin, well done.

    I am also a hospital consultant, and we found this year that my Mum has inoperable pancreatic cancer, so we are beginning the long and difficult process of facing, and planning her death. It is so difficult because I know things my family don’t know, and some of that I know I can’t share (mum doesn’t need to know what possible symptoms exist as then she’d be dealing with my fears as well as her own).

    The tears I have shed at work during my career have almost all been related to anger & frustration when I can’t meet someone’s wishes. It hurts to see someone die when their symptoms aren’t controlled, or they are not at peace. It hurts to witness the pain of families. I’ve also cried for good deaths – I will always remember a particular patient we knew very well who died comfortably & peacefully with all her family there, having spent 3 days reminiscing and looking at old photos. Even now her dignity & resolve moves me to tears.

    The issues around end of life care aren’t really about the tools we use, but the way we use them. We talk about “informed consent” but don’t have a way of communicating the truth – so my patients think death & resuscitation occurs in the way it does on Holby City, right up to the casual wandering to the pub the minute the shift is over. It’s important that we try to speak up as doctors & nurses and balance this.

    I think we should all talk about death even if we are not facing it. Do it over a glass of wine, play a game of what if, laugh a little if you can. Don’t leave it so late you don’t know what the right thing to do is, because when it comes to facing the death of a loved one, you only get one chance to get it right.

    I hope when I have to lose my Mum that she has the peaceful & dignified death that I remember from that special patient, and that we as a family have the strength and resolve to support and comfort her. I also hope for professionals like you Elin, to look after both Mum & me for the days when I am a daughter, not a doctor.

    Thank you.

    • Thank you so much for your moving and kind words. Experiencing death and dying personally, especially with medical knowledge, is exhausting and uncertain, and also sharpens your vision at work for looking at quality of care, I have found. I hope you have some time to look after yourself over the next few months. Thank you so much for reading and commenting.

  15. Beautiful, reflective writing Elin. This piece should be shared widely with doctors in training so they can see what enduring compassionate care looks like. The NHS needs more role models like you.

  16. Thank you Erin from me too, a GP in Scotland. These issues resonate with me as well, and I think your identification of love as a central theme is crucial. How different it is for us then in primary care, when we are sometimes faced with patients we have known for decades who choose to stay at home to die. Trying to do this well is one of the hardest parts of our work, but I sometimes think managing the ones who don’t die, the chronically unwell with COPD, heart disease, strokes, chronic pain, or as is so often the case a mixture of everything, is even harder. It just goes on and on.
    The care that works (both for patients and health professionals) has more than guidelines, QOF and protocols at its heart; love and compassion are in the mix too, but it is a dangerous path we tread, and when our own resilience dips it is all too easy to drown.
    We need to campaign for the unmeasurables in healthcare to be recognised and valued, so thank you again for drawing attention to this.

  17. Elin, thanks so much for taking the time to write this – you’ve really set the bar high for your first blog post 😉 I found myself nodding along, a few (cathartic) tears were shed, and most importantly I found myself feeling deeply grateful that you, and many others like you, are prepared to immerse yourselves in your work and share the journey of (life and) death with people. I reckon that your children will grow up knowing how important your work is, and also hopefully feeling confident that a good death is as good an outcome as Mummy making the poorly people better.

    My Dad died in November and I am so very grateful that his death was a good one http://georgeblogs.wordpress.com/2012/11/19/taking-care-further-hospice-at-home/. Thank you for blogging, thank you for caring, and thank you for looking in the eyes and connecting. Never underestimate the difference that you make to people’s lives.

    Looking forward to your next post already 😉
    George
    @georgejulian

  18. I know many physicians who care – thank you for being one of them. We should be able to leave this world with dignity. That there are people out there who can help this happen surely eases the pain of loss. If death had no effect on us why would we bother to care as we do, as you do? The world is a better place for your tears of compassion 🙂

  19. Wow, this knocked me sideways . I feel grateful there are people who go through all this to help others every day so it is great to read how it feels to be the professional and its helped me understand how you deal with what to me would be a huge challenge. There are easier ways to make a living so thank god for those of you who choose to do this for the rest of us. Long live the NHS btw.

  20. Incredibly moving and beautifully written. My son died in hospital when he was 5 months old. The staff were wonderful and human, that was so important and we will always remember each and everyone of them. You do an incredible job.

    • Thank you. I am lucky to do a job I love, and have wonderful colleagues. As you say, the NHS is full of great staff. So sorry to hear about your son, I cannot imagine what that must be like.

  21. Powerful in its simplicity to say what is real, lived daily by you and professionals. I work in a children’s hospice and find the same strength from my family when I return from an emotionally charged day but I also find my family at work the most amazing too. The families and children are incredibly brave and at times I am in awe of the strength they show not just at the end stages but every day in coping with the knowledge of limited time.
    So thank you for this

  22. Here here. You have written a piece that many
    health professionals will relate too. I absolutely agree with you – the nurses, doctors and medical staff present when someone passes away are what matter most to not only the dying person but also their relatives because they are the memories they will keep with them. I also think though that there ought to be some Counselling in place for health professionals so you will not be alone crying in your office the next time. You are a person too at the end of the day and I think this needs addressing. Too often it is ignored. Thank you.

    • Thanks! But I think that even with all the counselling in the world (and I have very supportive immediate colleagues) sometimes there are times when things are just very sad, and having a little cry in my office is therapeutic and necessary.

  23. It was probably inevitable Dr No was going to have something to say, given that he is both a doctor, and had his mother die in February. The time up to her death was of course very difficult, and involved some of the themes covered here, some of which Dr No covered in posts at the time. But there are three things Dr No wishes to say here:

    Firstly, whatever one’s reaction(s) to it, this post is excellently written, and a brilliant début. One looks forward to more (but feels for the author, who no doubt has moments when she may feel that her first post is a hard act to follow). More generally, as many of the old guard of blogging doctors retire, there appears to be a move towards more reflective, essay-style posting – the also excellent JT springs to mind as another example. This trend, Dr No believes, is to be very warmly welcomed.

    Secondly, death needs to be talked about (Dr No had the business of doing it with his mother as sensitively as he could, when the NHS doctors ‘caring’ for her failed pretty miserably (with one exception, but she still failed, stumped by the constraints limited clinic time) on this) but he is very suspicious of notions of ‘good deaths’. How on earth can pain, suffering, loss and the snuffing out of life be good? Before we know it, we’ll have the people in ponchos playing their pan-pipes down the bottom of the garden, celebrating the good death going on in the house! Instead, Dr No prefers to think of ‘least bad’ death. He means that: even when it is a ‘merciful release’, death still is bad, but we can and should make it ‘least bad’. Dr No’s mother was adamant she wanted to die at home; and we achieved that, the least bad option; but she still died.

    Thirdly, and this may be the most contentious point, Dr No is suspicious of relying on ‘love’ to get us through. Love can be fickle, capricious, self-serving and all manner of treacherous things when the pressure is on. Of course, it depends what kind of love we are talking about, and for that very reason, Dr No believes what we really need to rely on is duty. And then, of course, there are the added complications of being a doctor-relative, perhaps to a ‘difficult patient’. None of it is easy, or ‘good’, just ‘least bad’. For those who wish to read more, Affection Love and Duty, These Three is perhaps as good as any place to start.

    • Thank you so much for your excellent comment – I agree with much of what you say. I’m sorry to hear that your mother recently died, and sad but not surprised that death was not well talked about in hospital as I know that I often fall short in the way you describe. Of course, death is pretty much always awful, in terms of being bereaved. And we cannot ask the dead whether the dying part was ‘good’ or ‘bad’. I did laugh at the vision of pan pipes being played in the garden. You are right, of course, in that I do not refer just to romantic love but to the combination which you describe in your own blog.

      And yes, I don’t think I can ever write another blog again! I am also in the position of being totally identifiable, so can only write about myself, which feels an oddly arrogant thing to do.

  24. Wow! How powerful are those words! What an excellent writer you are Elin. Lets hope this awareness week plants the seeds in the minds of many to address end of life issue long before the critical time. As it has been said many times before there is no rehearsal time when it comes to death

  25. Thank you for this. I have just discovered you and Kate Granger in the last 24 hours. I am a 49 year old wife and mother. I was diagnosed with bony mets in March I I was given the all clear in December so a huge shock as you can imagine. I know my life is shortened but I feel hopeful for the time I have left. Lots of plans. I am less afraid of death than I ever imagined I would be. After the initial shock, like a kick to the stomach I felt weirdly calm. I never thought I would feel that way if faced with this prognosis. My husband, a surgeon, took it much worsen me. I would love it if you followed me on twitter. My friends and family don’t follow me on there so I am fairly candid. My twitter name is @poshlindy

  26. A wonderful piece of writing-which I have jus read on my way home from my new (as of last week) role as a consultant paediatrician. Lots to reflect on.Made me well up on the bus…..please keep writing.

  27. Thank you for writing that piece. It warmed my heart. Last year I auditioned for “Le Rire Médecin” here in France – it’ a company which trains actors up to work in children’s hospitals as “clowns” (although “comic character” would be a better definition in English). When there is a space in their Marseille team I’ll be joining them. Your blog post has given me a lot to reflect upon. A lot of the work will be in the wards with children who will never get better. I am now off to bed to think about what I have just read, stopping off in my children’s rooms on the way… Thank you, and keep writing.

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  29. Hi Elin. This is a beautiful reflective piece which I hope will be read by many people. At John Taylor Hospice in Birmingham, where I work, we undertake all kinds of activities to open and continue the conversation about death and dying. Your piece is a valuable contribution to this discussion.

  30. Annwyl Elinlowri,
    Mae’r geiriau wedi gwneud argraff fawr. A fyddech yn awyddus i gyfrannu at y cylchgrawn Cymraeg Golwg?
    Diolch

  31. Pingback: Read

  32. Pingback: Doctors and death | Abetternhs's Blog

  33. Great writing – powerful and honest. Also good to remember that death might not be the outcome that we, as HCPs, would want, but that it’s not always the poor or unsatisfactory outcome that we assume it to be.

    • Annwyl Elin Lowri,
      Diolch am anfon y nodyn yma at y cylchgrawn Golwg.
      A fyddai’n bosib i chi fy ffonio er mwyn i ni drafod hyn ac i weld a fyddai’n bosib i chi gyfrannu at y cylchgrawn yn Gymraeg.
      Gan edrych ymlaen at glywed.

      Sian Sutton
      Golwg
      01570 423529
      golygyddol@golwg.com

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