With the End in Mind

by Kathryn Mannix

  The nurse and I went into the corridor with the cat. From there we could keep an eye on Bob’s safety without inflaming his wrath any further. The combination of new, red swelling up the side of his face with high temperature, fast heart rate and agitation all suggested a bacterial infection in the swollen, juicy tissues of Bob’s face. This is a recognised complication of head and neck cancers, and is usually associated with severe pain. The fever can cause confusion, and it was this that was causing him to become agitated.

  From the corridor I could see that the redness was already extending to his ear and down his neck. The pain would be horrible. He needed antibiotics in high doses, by injection, and clearly I could not treat him while he was fighting us all. If I could give him a gentle sedative he would feel calmer and less agitated, and then I could get a needle into a vein and treat his infection, his fever and his escalating pain. But he was unable to swallow. How could I help him?

  As I was pondering that thought, Bob suddenly and unexpectedly got into his bed, and within minutes was deeply asleep. The nurse and I approached. His cheek was swelling visibly and a second new hole was dripping saliva. He stirred when we touched his arm, but did not withdraw or open his eyes. I tried to ask his permission to give an injection; he pulled his arm away.

  ‘I think he wants us to stop,’ said the nurse. ‘He’s had enough.’ It seemed that she was right. I called the leader, and he came in to assess the situation. By now, Bob had developed twitching of his limbs, and irregular breathing. The leader considered several possible reasons why Bob might be twitching, and feared that he might be at risk of having convulsions. Yet again we came up against the problem of how to give him any medication that would stop his twitches and prevent them becoming fits. The rectal route seemed the only way.

  The rectum has such a rich blood supply that drugs given by this route take effect very quickly. In France, it is a usual way of administering medication even at home. In England, however, we use this very effective route less regularly. I wasn’t sure that Bob would understand that we were trying to help, but asking his consent was not a possibility while he was so muddled and afraid. With heavy hearts, a nurse and I prepared the smallest syringe that could deliver the dose of a drug that would prevent fits and also offer some sedation.

  Two nurses and the leader helped to hold Bob in a position that would allow me to place my blunt syringe as gently as possible into his rectum and squirt the drug in. It felt intrusive as he wriggled and shouted. I was weeping as I said, ‘I’m so sorry, Bob. This will really help you. That’s all we want.’ And then it was done. Within five minutes the twitching stopped; five minutes later a peaceful Bob was deeply asleep, and a small injection port was taped into a vein in his arm. No need for any further rectal drugs, with a venous route established. I took the cat home.

  The injection port was a vital part of Bob’s care for the next few days. Over that time he remained mainly asleep, waking occasionally to give the cat a biscuit and stroke his purring body. The antibiotics reduced the redness, and Bob’s pain and temperature settled, but he did not improve. That lack of energy we had already observed was, as usual, a reliable indication that Bob’s battery was running low. He had managed the single most important matter in the world–the future care of his cat. With that resolved, he was ready to relax.

  Bob died three days after his troubled weekend, without getting home, the cat on the bed beside him.

  The final chapter of Bob’s story provided a little illumination. With no (human) next of kin, Bob had no one to register his death or arrange his funeral, and the hospice took on those tasks. I made my first ever visit to the local registrar’s office to deliver the medical certificate of death usually taken by the family. In a room populated by an incongruous mixture of beaming new dads and the silent newly bereaved, I handed in my certificate and explained the unusual circumstances to the clerk. Then I sat and waited.

  Eventually the chief registrar bounced out of her office and greeted me like an old friend. ‘Ah, Dr Mannix, what a pleasure to meet you at last! We’ve followed your career with interest!’ That early run of fourteen deaths in ten days jumped accusingly into my mind. Then my time at the cancer centre. And then at a hospice. Goodness me, they must have typed my name a lot of times over the years. It had never occurred to me that this could be a way of monitoring a medical career–this was many years before a registrar of deaths was to sound the alarm over the now notorious GP and mass murderer Harold Shipman.

  ‘Sorry about your wait,’ she went on, ‘but we had to check the rules, because we’ve never encountered a situation where a death was registered by the same person who signed the certificate. But it appears we can proceed.’ She produced the official copy of Bob’s death certificate, and the form I needed that allows an undertaker to dispose of a body by cremation or burial.

  The mourning party was small when we assembled at the cemetery: Marian, the hospice manager, and me as a representative of Bob’s cat. There we encountered a distant cousin of Bob’s, and an erstwhile colleague from his days as an employee of the railways, who had seen the death announcement in the local newspaper. We stood together in the cemetery chapel while a minister who knew neither Bob nor his mourners made an attempt to comfort us in our loss, and then we watched as Bob’s coffin was lowered into the earth.

  Walking away from the grave, Bob’s ex-colleague said, ‘I didn’t know he had a daughter.’ I explained that I wasn’t Bob’s daughter, I was his–friend. ‘I’m glad he had friends,’ the man said. ‘He was a lonely type of guy. Kept himself to himself. It’s a responsible job, being a signalman. He used to worry. Deep thinker. Kept meticulous records, and always beautifully written. He was a lovely writer.’ Almost as an afterthought, he added, ‘And such a curious turn of phrase. He talked like an old book. Old-fashioned. Loved his long words…’

  He tipped his hat and walked away, leaving me to consider Bob’s life, now reduced to a pad of prosaic communications using poetic language, all expressed in copperplate calligraphy.

  Then I went home to feed our cat.

  Post-Mortem

  The examination of a body after death may be to establish why a person died. This can help in unexpected deaths, but is rarely a question in palliative care. Yet sometimes, even though the decline and progression towards dying is understood, there are questions unanswered after the death, and an autopsy examination can help to address these.

  Of course, the patient is beyond benefit from these post-mortem answers, and that fact raises the question: what is the point? I believe the point is that our mutual interconnectedness, our belonging to each other, enables these too-late-to-help answers to be of use to other people: to offer a deeper understanding of how an illness was affecting the person as death approached; to answer questions about the impact of previous treatments like surgery or radiotherapy; to give new insights into causes of symptoms that were hard to manage. It is not idle curiosity: autopsy offers answers that can benefit future patients, progress research, and comfort the bereaved. But if we fear discussing death, how can we ask permission for this last, definitive exploration of a person’s dead body and the impact their illness had?

  Besides, what colour is cancer?

  Moira is furious. She flushes pink and balls her hands into fists. She stares at me, as we sit in the hospice staff room, then almost spills her coffee as she stands and shouts at me.

  ‘How can you? I mean, really–how can you? Hasn’t she suffered enough? I cannae believe you want to do that… that… awful thing!’ And then, to her frustration, her anger turns to tears and she sits down suddenly, searching her nursing uniform pockets for a tissue. The rest of the team cast their eyes downwards, apart from Sister, who is looking at me, then at Moira, then back to me, to see how this will play out.

  ‘Moira, tell me what’s so awful about this for you,’ I say.

  Moira flushes again. ‘We’re here to care for her. It’s bad enough that we never got rid of that horrible p
ain for her. But to cut her open now she’s dead–what good is that going to do her? And to ask her family. They’ll be even more upset than they already are. I just didnae expect this of you. No, I didnae! I’m appalled…’ She trails off, lip wobbling and eyes brimming.

  Our patient Ruby died last night. It was an expected death: she had widely spread cancer, and had been semi-conscious for the last three days. She had been in the hospice for three weeks, and over that time we had reduced her distress, enabling her to be comfortable enough to sit in a wheelchair and be taken around the gardens by her family, and to discuss her funeral arrangements with her son. But we had never made much difference to the most upsetting pain, an odd circle of discomfort sitting just below her navel and slightly to one side, that caused her to cry, rub, wince and shriek without warning. We had tried so many things: heat (hurt), ice (hurt), drugs (no help, even at doses that made her sleepy), nerve stimulator (really hurt), hypnotherapy (brief reduction), distraction (interrupted by shrieks), massage (intolerable to be touched there).

  I was a new consultant. This team of nurses, a social worker, physiotherapist and occupational therapist had worked together for years, and trusted each other. Adding consultants to this established hospice was a new venture, and I was still on probation. It had seemed to be going so well. We were nine months in, and now, suddenly–this.

  We had all found caring for Ruby a challenge. Her pain did not fit any textbook patterns–it seemed to come on whenever she felt other patients in her room were getting more attention than she was, and it was always more shriek-inducing when her family was visiting, causing them to demand that we ‘do something’, as if we were not trying.

  ‘I’m not sure that a bereaved family can be more bereaved,’ I say. ‘We all feel frustrated that we never got on top of that odd pain, and I want to know if we missed something. I know it won’t help her, but it would help us, and it might help the family to have an explanation. And it’s knowledge we can use for other patients. That’s why I want to ask.’

  ‘How can they say no?’ demands Moira. ‘I mean, if it’s going to upset them, but the consultant asks them, then how can they say no?’

  I hadn’t previously thought about the power balance in these conversations, but Moira is making a valid point. I have not yet got used to the altered status that comes with the title ‘consultant’.

  ‘Would you like to come with me, and act as an advocate for the family?’ I ask. Then a new possibility strikes me. ‘In fact, of all of us, you know them best. How would you like to offer them a chance to find out more about that pain, and if they agree, then I’ll come to explain the procedure and get consent signed?’

  Moira looks astonished, but Sister says, ‘Great idea. They really trust you, Moira, and they could say no to you, couldn’t they?’

  Later that morning, when the family arrive for Ruby’s belongings, death certificate and our condolences, a nervous Moira goes to meet them in the lounge. After ten minutes or so she reappears on the ward and says, ‘Well, I’m astonished, but they would like to ask more about a post-mortem. Can ye come up?’ I love Moira for her integrity. She could simply have followed her feelings and ducked the difficult question.

  In the bright and airy lounge, the family is gathered in an alcove around a low coffee table, where traditional tea-and-sympathy is being served. I kneel beside the sofa, at the feet of Ruby’s son and daughter-in-law, and ask what they would like to know. Moira sits on the arm of the sofa.

  ‘A post-mortem…’ says her son. ‘It’s kind of like cutting her open, is it?’

  ‘Yes, that’s right. It’s a way of having a really good look at why she had that horrible pain that we never really got rid of for her. It will show us things that a scan can’t always see. The part of her that I really want to know more about is the inside layer of her tummy, under where that pain was, and all the nerve supply to that area. A full post-mortem looks at the whole body–inside the tummy, inside the chest, and inside the head. But we can ask for a limited look around, if that’s what you prefer.’

  The family agree that they would want Ruby’s head left alone, and I assure them that this is fine. They want to know where the operation will happen, and when.

  ‘The procedure would be done at our local hospital, by experts. So you can visit her here today, and after that you can still visit her, but over there. They’ll do it today or tomorrow, so that it won’t hold up your funeral arrangements. And I’ll go, maybe with Moira or another member of the team, to see exactly what they find.’ Moira’s eyebrows arch with surprise–I hadn’t mentioned that in our previous discussion.

  Acknowledging that this procedure is of no help to Ruby, and that our whole team feels sorry that we never got rid of her pain, I explain to the family that if the autopsy helps us all to understand what was causing it, it will help us to help other people. And every cancer post-mortem helps the doctors to understand cancer a bit better.

  ‘But–and this is really important,’ I stress, ‘–I can give you a cause-of-death certificate today. I don’t need a post-mortem for that. So if you think the idea of a post-mortem is going to upset you, it’s really fine not to go ahead.’ Moira nods at me approvingly.

  ‘No, we’ve decided it’s a good idea,’ says Ruby’s son. ‘We’ll always wonder. And Mum always brought us up to help people, so she would like the idea of carrying on helping now. It’s fine. We’d like to go ahead.’

  I produce the consent form, and explain about how Ruby will be handled. There will be a single, long cut to take out her organs. They will be carefully examined, and small samples may be removed to be looked at in more detail through a microscope. That extra process may take many days, so all but those small samples will be put back inside Ruby, and she will be carefully stitched up again. The family won’t see cuts or stitches if they visit her later in the hospital’s chapel of rest, and the funeral can go ahead as planned.

  Ruby’s son signs the form. I tell the family that I’ll be happy to see them again to discuss what the examination shows. It’s best to wait until all the information is back, including any microscope work, so we should plan to meet up in several weeks’ time. I ask them to phone us when they feel ready. Then I issue the cause-of-death certificate, and return to the ward while Moira explains to the family how and where to register the death.

  Later, we are all gathered in the office once more. Moira has something to say.

  ‘I didnae mean to sound disrespectful when I shouted at you earlier,’ she begins, her Scots brogue highlighting her discomfort. ‘A nurse shouldnae speak to a doctor like that…’

  I feel deeply touched, yet anxious, to hear these words from such an experienced and wise colleague. If we are a team, then we must feel safe to disagree with each other. No doctor should ignore the advocacy of nursing colleagues. Nurses spend far more time with patients and families, and every team member’s view should be offered with the confidence that it will be listened to with respect. Am I really part of this team yet?

  ‘Moira, please don’t ever think that nurses can’t hold doctors to account–that would be so wrong!’ I say.

  She flushes. Then she smiles at me. ‘And what’s this about going to watch?’ she asks. But the anger has left her voice, her anxiety about overstepping has passed.

  ‘Well, we want to know, don’t we? So we’ll go and watch. Would you like to come?’

  ‘I’m not sure…’ she replies, so I say that I’ll phone the pathology department, get a time for us to go across, and if she wants to come, she will be welcome.

  Leaving to attend the post-mortem later that day, I call into the ward to see which of the nursing team, if any, are willing and able to attend. I find Moira and Sister with their coats on, looking apprehensive but determined. They are on a mission to assure themselves that their patient remains cared for with dignity in the hospital mortuary. We arrange to meet in the car park in five minutes. This gives me just enough time to rush into the secretaries’ offic
e, call the mortuary manager, and warn him that I am bringing two nurses to their first ever autopsy. I have known Keith for years; he reassures me that ‘Everything will be hunky-dory, as usual.’ Then I collect my colleagues and drive us all across to the hospital.

  Because my husband is a pathologist, I am on first-name terms with the whole mortuary team, each one of whom has a heart of gold and a genuine desire to manage these last days of their clients’ visible existence with dignity and respect. In their care are the bodies of the very old and the newly born; the once sick, the fatally injured, the murdered; the loved and the unloved–the dead of our city. They treat each body with tenderness: indeed, Keith has taken it upon himself to find a way to use invisible glue to seal the post-mortem wounds of the babies, so their families can cuddle them without feeling stitches through their tiny pyjamas. Tina chats to every corpse as she conducts them to the giant refrigerated shelves in which they will repose. Amy makes sure that no child’s body is ever left alone, a promise she makes to keening mums as they tear themselves away from the viewing-room cot. This is the Kingdom of the Dead, and it is a place of dedicated kindness. I know my colleagues will not find fault in here.

  Keith meets us at the back door of the mortuary, a route known only to undertakers and staff working in the Kingdom. He welcomes Moira and Sister, and tells them that Ruby and Dr Sykes are expecting us. He asks us to put on plastic overshoes and operating gowns, and I suddenly realise that, rather than taking us into the viewing gallery, from where we could watch through glass (no smell), we are being taken into the autopsy room itself. Not what I was expecting. I brace myself for the nurses’ reaction when they see the four dissection tables with naked bodies being eviscerated and examined.