With the End in Mind

by Kathryn Mannix

  The ED nurse moves quietly between the flashing monitor screen, the drip tubes and the patient, responding to the falling blood pressure, the rapid heart rate, the dropping oxygen levels in his blood; adjusting oxygen flow; changing IV bags; communicating with Lisl using nods and pointing to avoid disturbing our delicate conversation. Kathleen takes a chair amongst the men and watches thoughtfully, face full of compassion.

  I ask the men whether they knew their father had a bad heart, and they nod, murmuring that he’s been ‘a creaking gate’ for years. They have been expecting a bad-news phone call any time since his second heart attack two years ago. I ask how their dad has been recently, and they describe a man confined to his home by chest pain and exhaustion. So they realised he was on borrowed time, I comment, and they nod. This is no surprise to them.

  ‘So,’ I ask them, ‘what did your dad say he would want us doctors to do if his heart got worse, if he collapsed or needed to come into hospital?’

  There is a long, tense pause. The men sit, hunched forwards and hands clasped before them, and they look at me with round, frightened eyes. They shake their heads. They don’t know what their dad would want.

  ‘Did he ever say anything that would help us to know what to do now?’ I ask them, as gently as I can, and one of them replies in a croak of heartbreak, ‘He tried to. Oh, God–he tried to talk about it, and I told him not to be so maudlin…’ His voice cracks and his shoulders heave. Kathleen touches his shoulder gently. A brother picks up the thread. ‘Not just you, Sam,’ he says. ‘Dad asked me to do one of those attorney documents in case Mum ever needed a hand, and I just said he’d be here forever and to stop being gloomy…’ and his voice peters away.

  This conspiracy of silence is so common, and so heartbreaking. The elderly expect death, and many try to talk to others about their hopes and wishes. But often they are rebuffed by the young, who cannot bear, or even contemplate, those thoughts that are the constant companions of the aged or the sick.

  Then their mother speaks. She has been gazing at her husband, but listening attentively and making occasional eye contact with me as I spoke to her sons.

  ‘Let him go,’ she says quietly. The men sit up and stare, and one begins to object, but she raises her free hand and flaps at him to be quiet. ‘He’s not living. He’s not happy. He often says he’s ready to die,’ she tells them. She turns to me. ‘He knows the lads will look after me, and he knows I’ll be all right. He’s been ready to die for a long time.’ There is utter silence, broken by a sob from one of the men.

  ‘Tell us what he would say if he was awake enough to tell me now,’ I encourage her.

  She looks down at his face with a fond and familiar smile as she replies. ‘He says to me almost every week, “Jeannie, we’ve had a great life. Now it’s time to go. I hope it’s soon, and I hope it’s sudden, and I hope it’s me before you…” and I just say, “Gerry, I hope I’m not far behind.” And then we have a little cuddle and we feel better.’ She pauses, then asks me, ‘Will he wake up again, doctor?’

  ‘I think it’s unlikely,’ I say, awkwardly aware that in the rush of arrival there have been no proper introductions. It seems presumptuous to call her Jeannie.

  ‘Can you see his heart monitor there?’ Lisl points out the trace to the family. ‘It shows us that Gerry’s heart is trying to beat, but it’s not strong enough to circulate his blood properly. Without a good blood supply to our brain, we can’t be awake. Gerry is unconscious. He is very, very sick… He is sick enough to die.’ She pauses to let them digest this news.

  ‘Sometimes, even unconscious people are aware of sounds around them, so he may be able to hear your voices and be glad that you’re here. We have to decide quickly how intensively to treat him, and we want to do what he would want. We can’t ask him, because he is unconscious. That’s why we need you, who know him the best, to tell us what he would say. We’re not asking you to make the decision–doctors have to make the medical decisions. But if you think there are treatments that he wouldn’t want, we will take his views into account as we decide.’

  The men swap anxious glances, while their mother looks on. Lisl continues, ‘In a few minutes we’ll find a bed for him instead of this ambulance stretcher, and a room where you can sit with him. I’m going to make those arrangements now. If time is short for him–and it may be–is there anyone else who should be here?’ She waits, and they stare miserably at each other, silent and stunned. ‘Why don’t you think about that, while I go and find out about a room for him?’ I watch her managing an ED death, and admire her confidence and calm compassion–our former trainee, putting her palliative care training into practice.

  Nodding at each tearful face, she makes her exit, leaving me to prompt the family, picking up the script where she left off.

  ‘Sometimes, when time might be short, people just want time to be together,’ I say. ‘Some people have religious beliefs and would like a chaplain or prayers. Some people want music, and some prefer quiet. We want to help you to make this time the best that we can, so please let us know what we can do to help.’ Pause. This is a lot to take in, and often needs to be repeated. The nurse opens another vial to add to the IV line, and I see that Gerry’s blood pressure is almost unrecordable. He is failing fast.

  A bed is wheeled bumpily into the room by two nurses, who skilfully transfer him into it, complete with his tangle of tubes and drip lines. They invite the family to accompany them, and wheel Gerry away to a quiet room. Kathleen shepherds the sons, and Lisl takes the wife’s hand as they follow. The resuscitation bay is left empty. The ED nurse immediately begins the process of cleaning all surfaces, restocking all drugs and equipment, and preparing for the next potentially life-saving use of the bay. No time for tears.

  Kathleen and I leave the ED half an hour later. Gerry is in a single room with his family around him, and the medical team is explaining that he will probably die in the next twenty-four hours of his latest heart attack, now confirmed by blood and heart tests. He is too unstable for a scan to detect whether he has also suffered a stroke, but the answer is academic. His wife has represented Gerry’s wish not to have his dying protracted by medical treatment, their sons have accepted their mother’s knowledge of the wishes that their dad tried to discuss with them, and the medical team has taken his known preferences into account, deciding not to escalate his treatment to the ICU, where they could certainly prolong his dying but are unlikely to restore his health.

  I phone Lisl before I leave work that evening, to tell her how well she managed that very difficult conversation. She is pleased to have the feedback. Gerry had died a few hours earlier, and Lisl reported, ‘He did that thing that so many people do. That “choose the moment” thing. You know–the family was with him from the time he collapsed, right through ED and into the side room. And then when his sons had gone for food, and his wife went outside for a smoke, he just died. He was only on his own for two minutes.’

  This phenomenon occurs with such regularity that we often warn families, especially when the dying process stretches over several days, that it may happen. We don’t understand it, but we recognise that sometimes people can only relax into death when they are alone. Are they somehow held by bonds of concern for the watchers? Is it the presence of beloved people in the room that holds them between life and death? Are they choosing? We don’t know the answers, but we recognise the pattern.

  ‘Do you ever get used to it?’ she asks me. ‘Those dying conversations–will I ever just feel OK while I’m doing them?’

  The answer, I am glad to say, is no. It will never feel comfortable to sit so close to others’ grief. Working in the face of death will always feel profound, numinous and sometimes overwhelming–that’s why we work in teams. But you will be able to recognise that you are offering something vital, transformative and even spiritual: the opportunity for individuals to meet or to watch death with an awareness that is lost if we fail to be truthful. The dreadful reality, told with honesty
and compassion, allows patients and their families to make choices based on truth, instead of encouraging the misleading, hopeless quest for a medical miracle that promotes futile treatment, protracts dying and disallows goodbyes.

  Today, in ED, Lisl’s skills focused not on saving life at any cost, but on enabling goodbye. Sometimes, in the end, it’s all we have to offer.

  Talking About the Unmentionable

  One of the many parallel journeys in my life so far has been the journey to young adulthood of my two children, and their introduction to the essential concepts inherent in the human condition–matters as diverse as how the dirty socks from your bedroom floor become clean pairs in the drawer again; why feeding the goldfish the right food in the right amounts is important; where babies come from; why honesty matters; where babies really come from–and this has included their introduction to the concept of mortality as illustrated by goldfish, old people, and eventually by people we love and will miss.

  Telling children about death is important, yet uncomfortable. We want to protect them from sadness, but prepare them for life. Children’s ability to understand concepts like time, permanence, the persistence of unseen objects, and universality develops over the years, so what we say will be received and processed differently depending on the age of the child. Despite being aware of this in theory, I have been taken by surprise on occasions by the reinterpretation of our conversations by one or other of the children.

  Here are some examples from our family journey that show how these early experiences can mature into an understanding of death; and in some cases, how the misunderstandings can be comedic.

  Something Fishy

  My grandfather died when I was in my thirties and our younger child had recently started nursery. At the time, we had pets: two goldfish, and a cat that had been bequeathed to us by a hospice patient. Great effort went into saving the fish from being lovingly overfed by the children or lovingly consumed by the cat. The idea was that, in observing the life cycle of pets, our children could be gently introduced to matters of fact like not being afraid of water (Check: both are excellent swimmers), looking after things (Check: both are gentle with the fish and cautious with the cat), illness and healthcare (Check: cat-pampering after injections from the vet), and even death eventually (but all three pets were determinedly showing robust good health).

  So when I heard that my beloved grandfather had died quite suddenly from a chest infection, I explained to the children, aged three and seven, that I was going to see Grampee now that he was dead, for one last time. I would go and stay with Nana and Grandad, who are very sad, and they would come a few days later with Daddy for Grampee’s funeral. As I prepared to set off the next morning, I noticed that one of the goldfish (the spotty one called Ladybird) was swimming strangely, at an odd angle, and moving its gills and fins only on one side. Can goldfish have strokes? This fish was definitely looking peaky, but I had an early train to catch, and the family was sleeping. This might be a situation to leave to Super-dad.

  That evening, after I had been to the chapel of rest with my parents, and kissed the cold forehead of that strangely unfamiliar face, I was phoned by the children. ‘Mummy, Ladybird died,’ my three-year-old daughter solemnly informed me. ‘But don’t worry, we put her in a jug in the fridge so that you can see her.’

  The children were not very interested in the funeral, but enjoyed the reunion with their cousins afterwards. The dead fish was a huge topic of discussion, my pair displaying their new expertise to their cousins. My sisters were alarmed to hear that the kitchen fridge was being used as a mortuary, but Super-dad is a pathologist–that’s the way he rolls.

  I was reunited with Ladybird about four days after her death. She was lying in state in my measuring jug, looking slightly green at the gills. I held her on a tissue on my palm and talked to the children about death. ‘Look,’ I said. ‘She isn’t moving; not even breathing. She doesn’t feel anything, hear anything, know anything. She isn’t sad or afraid. She has no pain. She doesn’t even know she’s dead.’ They stared and nodded. One of them prodded her gently with a clothes peg, as though checking.

  ‘When animals and plants die, their bodies gradually turn back into soil,’ I explained, ‘and that helps new plants to grow, and makes new food for other animals.’ Warming to my theme, I asked them to choose a place in the garden where we could bury Ladybird, so her body could turn into soil and help our plants to grow. They helped me dig a hole under a shrub, and we buried the fish in its Kleenex shroud.

  A few weeks later, a visiting friend noticed we were one fish short, and asked what had happened. Our daughter fixed her with big, serious eyes and used her ‘explaining voice’ to say, ‘Ladybird got sick, so Mummy put her into a hole.’ Still a bit of work to do there, it seems.

  Before the age of around five, children do not understand the irreversibility of death, nor that death renders the body totally non-functional. Although my seven-year-old was content to bury a permanently dead and non-functional fish, his three-year-old sister was quite perplexed about the whole situation. And probably a bit anxious about becoming unwell herself!

  Plaques

  At eight, number-one son was obsessed by the idea of death. It was a phase, but it was driving me crazy, making it hard to separate life from work. Take memorial plaques on public benches, for instance. He was convinced that these marked places of death, as though members of the public risked annihilation each time they sat on a park bench or unwrapped their packed lunches on a seat by the riverside. ‘Did they die here, on this bench?’ No, the bench was put here after they died. ‘So did they die here on the road/falling over that cliff/in this park?’ No, this is a place where their family like people to remember them. After weeks of interrogation about bench plaques, which pop up everywhere once you are trying to avoid them, he finally got it. Phew.

  One weekend we were out walking in the wilderness. High on the crags was a bench with a plaque commemorating a dad who had died on this very spot, while out mountain-biking with his son. ‘Coo-ool,’ murmured number-one son reverently. ‘Dad, can we bring our bikes here?’

  Weeks of work undone in an instant, and the craze began again…

  This apparently morbid fascination with death is a normal phase of child development. As well as plaque-curiosity, for our son the phase included drawing funerals and coffins associated with long stories about the people in his pictures. This all helped him to place death in a context of, for example, applying to old people, or being the outcome of illness or accidents.

  Some time around the age of seven, children become aware that death happens to everybody, and a little later, that it will even happen to them. This may lead to a period of anxiety and frequent requests for reassurance that immediate family members will not die. We addressed this during their child-hood by explaining to our children that mummies and daddies don’t usually die until they are old and their children are grown-up. Of course, not every family has that good fortune, and specialist advice is available for families helping children to deal with death–see the Resources section at the end of this book for more information.

  Cat-astrophe

  We moved house to live in the country, our little family, when our daughter was nearly six and her brother nearly ten. The apparently immortal hospice bequest cat was at least sixteen, and the surviving goldfish still outwitting him. It was a big decision, and a good move. There was a huge garden. We grew vegetables and dug a pond, we had access to a river for damming/paddling/fishing in, we released the goldfish into the pond and gave him lots of stickleback friends who were so happy that they multiplied greatly. The cat and a local heron hunted at the margin.

  The cat, in particular, thrived. It turned out that he was a skilful hunter, and he would forage far afield, returning with gifts of field mice, bank voles, occasional birds–he once even dragged a rabbit through his cat-flap. These he laid out for display in the garage, a habit the children gradually learned to forgive and eventually even
to admire. So by the ages of eight and twelve, they were unusually familiar with the state of rigor mortis in these feline trophies.

  Although our house backed onto fields, it sat on a busy road, and this was to prove our hunter’s downfall. One day, after work, I was drawn to the front of the house by tooting car horns and saw the cat sitting in the middle of the road, surrounded by fast-moving traffic. As I walked out to him, raising a hand to stop the cars, I realised that his back was twisted and his hind legs and tail were not moving–he must have been run over.

  Our childminder was about to go home, but she took one look at the cat and then at my eight-year-old daughter and said, ‘I’ll stay here. You take the cat to the vet.’ We quickly found a strong cardboard box (no need to restrain the cat in his animal carrier) and lined it with a blanket. Then my son, twelve going on fifty, climbed into the back seat of the car with the cat in his box beside him, and we set off. I could see both passengers in my rear-view mirror. The cat was panting with his tongue hanging out, glassy-eyed. Every now and then he mewed weakly.

  ‘Why don’t you talk to Oskar?’ I said to my son. ‘Just let him hear your voice. You could touch his head very gently, too. He likes his ears tickled, doesn’t he? Just don’t touch his back in case it hurts him.’