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The Expiry Date

This morning I read drkategranger’s blog regarding her expiry date (she is a doctor with terminal cancer who talks about death so candidly, it inspires. I would absolutely recommend!!!). The blog and some of the responses to it got me to thinking about death. I have already written about dying and the fact that I fear it not so much. As a Muslim, I tend to see death as just one of those certainties of life so I treat it quite matter-of-factly. This blog is will be further musings about my experiences of death. I will start with a quote from Hadith (Islamic teachings) which summarises how I generally see life and death:

Al-Hasan Al-Basrî said:
‘The life of this world is made up of three days: yesterday has gone with all that was done; tomorrow, you may never reach; but today is for you so do what you should do today.’ Al-Bayhaqî, Al-Zuhd Al-Kabîr p197

I am generally an optimist or more accurately an optimistic realist so I try not to be morbid and I am generally not one to dwell on death. However, I have had times in my life where the thought of dying has crossed my mind. Last winter was a pretty bad time for me. I was working in the hospital that inspired me to become a paediatrician (which still inspires me) but I was in a job with a particularly toxic individual who succeeded in poisoning the atmosphere. I became depressed after 6 weeks of this. So much so that I hated waking up every morning I was scheduled to work. It got to a point that I would lie in bed, sleepless and think ‘would it be that bad if I didn’t wake up in the morning?’ As soon as the thought came to my mind, I would feel guilty and terrible. Guilty because I knew that my life really wasn’t that bad and that there was so much for me to be grateful for. Terrible because I knew my death, although insignificant in the grand scheme of things, would be horrible for my nearest and dearest. My mama especially. I got through those 4 months because my husband was there and would not let me sink into the depths of depression that kept pulling at me. Thank you George!

I am now back to my normal sunny self despite some current work horrors. As a newly-qualified doctor back in 2009, I dealt with death day in, day out especially on my first job on gastroenterology at a busy inner-city hospital. After the initial shock, I got used to it. Not that I didn’t care or it didn’t bother me but I dealt ok with it. There are 2 patient deaths from those days that have stayed with me. Both died of alcoholic liver disease. Both men in their 40s.

The first patient died slowly from hepatorenal syndrome (HRS). Basically with chronic liver failure, if your kidneys too fail, you will die soon because that means 2 of your 4 vital organs are dead or dying, unless you get brand new organs (i.e. transplants). As things currently stand, you cannot be put on the transplant list for a new liver if you are still abusing alcohol because the new liver will get damaged just the same and it is considered a waste of an organ that is in high demand but short in supply. So with my first patient, who I will call Patient A, when his kidney function tests declined rapidly and nothing we could do medically fixed it, we diagnosed HRS and my registrars and consultants had a meeting with his wife to inform her of the diagnosis and what that meant for the patient. He too was told in due time but because of his liver failure, he was confused and did not fully grasp the fact that his condition was terminal.

He deteriorated slowly over a few weeks but in the meantime, he would ask me daily when he could go home and travel to India to be blessed in the Ganges River. I would mutter something non-committal and beat a hasty retreat out of his side room. Initially, it was clear that his wife knew his death was near. But even she began to belief he would miraculously recover from his liver and kidney failure. Every week, she would say something that made us worry we hadn’t prepared her for the inevitable. Every week we would remind her gently that although she couldn’t see it, he was in actual fact deteriorating judging from his biochemistry lab results and worsening oliguria (he was weeing less and less).

In the week of his death, he suddenly looked well again. If I wasn’t the doctor patiently doing bloods on alternate days and chasing those results and noting the relentless rise in his urea and creatinine, I too would have started to believe in miracles. His wife upon seeing the light return to his eyes and his demeanour brighten plunged headlong into denial and joined him in planning their trip to India to the Holy Ganges River. Less than 24 hours before his eventual expiry date, it was devastating for me to watch her grief as the light in his eyes faded rapidly and he shrunk back into himself. Within 12 hours of his final illness beginning, his strength was gone and his mind with it. His utterings became incomprehensible and he became completely disorientated. The look on her face said it all when we came in to see him on our ward round that morning. We returned the look and she ran out of the room to sob in the corner. He was anuric by then (had stopped weeing completely) with a creatinine of over 400 (in other words, his kidneys had packed up). His liver function tests painted an equally damning picture. We completed his end of life paperwork that morning and when we left work that evening, he was hanging on by the tips of his fingers. We came in the next morning to the news that he had died before the end of the day before. The side room he had occupied for many weeks stood empty, awaiting its deep clean before the next customer.

Patient B was a young alcoholic who had developed liver cirrhosis in the months before I started the job. He had just turned 40 and I don’t think had any idea how serious the consequences of regular alcohol binges could be. Reality hit when another patient who was his ‘neighbour’ on our ward developed HRS and died rather quickly. All of our words of warning had somehow not sunk but with this other patient’s death, his mortality was clear to him. He called me over urgently that afternoon and said ‘Doc, I am ready to change’. I was pleased and felt a sense of accomplishment when I referred him to the rehabilitation programme. His wife found me the next day before they were discharged home to thank me for getting through to him. I was honest to say it wasn’t anything I did.

Unfortunately, he came in a few weeks later unwell with an infection which caused his liver function to deteriorate badly. I was encouraged to hear that he had no touched a drop of alcohol since his last admission. He developed litres of fluid in his tummy and I had to put in a tube into the side of his tummy to drain out all that fluid. He was in a lot of discomfort and fearful for his life and he asked me ‘Doc, am I going to die?’ I hesitated over the words I used but in the end I made no promises. Just that I would do everything I could to help him get through this. At first, it looked like the drain and intravenous antibiotics were effectively doing the job and the next day, the fear was gone from his eyes. I was encouraged by his blood results and left having ordered some more routine bloods for the next morning. Coincidentally, at I was securing his abdominal drain, I carelessly dropped the needle I was using to suture and when I went to retrieve it, gave myself a needle-stick injury. I had to get a co-doctor to inform him and take blood samples off him to check that he didn’t have any blood borne infections I could catch. He apologised every day after the event like it was his fault I had stuck myself with a contaminated needle. He asked me about those results daily – he seemed genuinely to care for my welfare. This went on for over 2 weeks as he slowly improved.

I was doing the ward round alone one morning when I was called urgently to his side. He was in a great deal of pain and was writhing in his bed with his abdomen larger than before we drained him. He was pale and clammy and his eyes looked like a man staring down the barrel of a gun. I could barely make sense of his words and as I changed his prescriptions, called the blood bank for blood products and prepared to get a new drain inserted. I could see the life begin to ebb out of his eyes. In a panic, I called my registrars and told them I needed them on the ward ASAP because patient B had taken a turn for worse and nothing I was doing was making a difference. The registrar told me to leave the drain for the meantime and focus on reassuring the patient. After I asked the nurses to call his wife in, I went to him and I held his cold hand. I looked into those eyes and I knew in that instant that he was not long for this world. I remember saying a mental prayer that he could hang on for his wife to be by his side.

‘Doc!’ he cried. I squeezed his hand and responded ‘Yes B?’

‘I am dying aren’t I?’ he asked. I looked down and swallowed the lump in my throat. ‘I am here for you B and I will do everything I can to help you. Your Mrs is on her way in.’

‘Stay with me,’ he entreated fearfully. I nodded and again I had to look away because the fear in his eyes was too powerful for me to take in. The rest of it was a blur. His wife made it in before he died but not in time for him to know she was there. He was delirious by the time she got to the ward and as he was slipping away before our very eyes, there was little time to have ‘that conversation’ with his wife. The consultant whisked her away and broke the news to her. She could see that treatment was futile by then and knew that he was on maximal available medical treatment. We had no more to offer. She signed the DNAR (do not attempt resuscitation) forms and we set about making him less agitated. When we finally called it a day, he was less distressed, still mumbling incoherently and his eyes had started to take on that distant look I now associate with death. I came in the next morning to a request to come to the morgue to complete his death certificate and Crem forms so that his wife could lay him to rest. I got a call 3 days after his death to say his blood tests for blood borne infections had come back negative so I was in the clear. I cried in the staff toilets. He would have been relieved not to have put me at risk I think.

What did patients A and B teach me about death and dying? Firstly that when it is your time to go, it is your time to go. Life unfortunately doesn’t usually give you a clearly labelled package with an expiry date on it. Secondly, although death is scary for the person dying, it is actually worse for the person who loves them who has to watch them lose their battle to live and battle their fear of the unknown. Who has to go home and face life without them and rebuild their lives around the hole left by the dead loved one. Who for a very long time will think about their dear departed every morning when they wake up and every night before they fall asleep. Lastly, every human is unique. Despite having the same disease and modifying your risk factors, your body will do its own thing. We doctors can try to influence outcome but whether we succeed or not is not within our power to control. That is beyond science and medicine. That is life. That is God. That is reality. May we all depart this world in the easiest swiftest way possible. Amen

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On Death and Dying

My best friend confessed early in our friendship her fear of death and I remember being curious about why she was scared. Now looking back, maybe the question should have been why I did not feel the same? I mean of course death is not a welcome or happy thought but I don’t dwell on death and I certainly don’t actively fear it. I am very much of the school that there are 2 certainties in life: we are all born and we will all die. And since death is inevitable, I don’t think about it much.

Death is the final release.  Whatever one believes in, I think most of us believe that once you are dead, you don’t feel pain anymore. I know some people believe in reincarnation, some like me believe in the Hereafter and some think that whilst your body dies, your spirit never does and it still retains the memory of pain/anger/hurt/happiness. Although I believe in the Hereafter being Muslim, I do think that when I die, my soul leaves my physical shell and returns to its source (God). Then at some point, our lives are all assessed and we are rewarded (or not) for all our good deeds.

I wonder sometimes about what it feels like when your soul detaches from your body. I wonder if it is like a physical break, painful but transient or if it is more like an emotional separation where the after effects are long felt. I then wonder what the soul feels if it feels anything at all once it is separate from the vessel that conducts and interprets pain. Beyond that, I think death is more fearful if you are not the one dying. I mean, I would imagine that if I was in a terrible car accident, I would either die instantly with no time to think or become scared of what was happening. Or I would be in pain or feel myself getting weaker and weaker and it would be so unbearable that death would be a welcome reprieve. Same as if I had a chronic illness which was not curable but I was steadily deteriorating then dying would probably be a mercy for me.

When I think about dying properly, I realise that although I am not afraid of the dying itself, I am scared of some of the ways that I could potentially die. I am afraid after all. Being a medic, I have seen many people die so I have spent time thinking about the way I would not like to die. I guess one of the scary things about dying is that most of us do not have any idea when we are going to die. It is different for those who are diagnosed with ‘predictable’ illness but even there, giving patients a prognosis (i.e. a number of days/weeks/months/years they are expected to survive) is not an exact science.

In the past 6 months, I have come across patients who were not expected to survive being born and the first few days of life yet despite all odds, they are still with us many months later. I have also come across patients who were predicted more time only to deteriorate much quicker than anyone has experienced, giving no time for their loved ones to be prepared. The only people whose time of death can be predicted with any accuracy are those who are already brainstem dead but on life-support and when the machines are switched off, we can be fairly sure they will die within a certain time period. Even so, we have all heard of the ‘miracle’ stories where patients defy the odds and remain alive far beyond the expected time of death.

My ideal death would be the one most people wish for. I would like to die in my own bed, in my sleep. I would like for it to be when I am old but young enough that I am still completely independent. I would like for it to be after a family reunion where my nearest and dearest are all sitting around a table and reminiscing about the good old days. I would like for it to be after my mother has gone to her grave because I can’t think of anything worse for a mother than to bury her own child. I would like for my children (if I have them) to be old enough that losing their mother does not scar them too badly.

If I am unfortunate enough to have a catastrophic trauma and needed life support, I have told my closest family that I would prefer not to be kept alive for many days. I would like to be given a chance to recover (if there is one) but when it gets to the time where my chances of waking or recovering are much less that 50% then I would prefer for the machines to be switched off. I would like to be an organ donor although in my donor card, I have not ticked the skin donor thing because I am a bit squeamish when it comes to being buried with bits of my skin harvested. I don’t yet have a will but I have told my husband of my wishes verbally if I don’t get around to writing a will before the day comes.

I would like to be buried according to Islamic rites. I think the simplicity of an Islamic burial suits me perfectly. Washed and wrapped in a cotton shroud and buried within a day. If I am in my bed, the closest Muslim graveyard would be perfect but if I happen to be abroad in a strange land then I would like to be taken back to Kaduna, the town of my birth because that symmetry also appeals to me. Also my great grandmother and grandmother are both buried there so it would feel right to lie next to them.

When my grandmother died, there were a lot of tears and prayers and silence but there was remembrance every evening after the crowds dispersed and I found that uplifting. I think the sitting around the dining table and talking about Mammie’s life helped lift the gloom that surrounded us all. The fact that we could all remember and share our memories of Mammie reminded us all that although she was gone, a part of her was alive in us all. And that she had had a good life and her quick death was merciful. Those evenings also reminded us that life is transient. It is unpredictable and death can pick any of us at any time. In remembering our dead, we embraced life and were thankful for all we had been gifted with. I really hope those I leave behind can do that instead of it being all sad and tearful. May we all die a pain-free dignified death and may those we live behind be able to accept it is our time to go and may they have the strength to celebrate a life well-lived (hopefully).