With the End in Mind

by Kathryn Mannix

  On a bright June day, sitting with her family and while ‘Walking in the Air’ played on repeat, Helena became very drowsy, her shallow breathing developed long pauses, and then stopped. She was entirely surrounded by her dearest people, and there she remained until her funeral, dressed in her ‘princess dress’ and ballet slippers, on a special cooling mattress in her bed, and surrounded by candles and flowers.

  What a wonderful funeral. The undertaker delivered a tiny white pine chest to serve as her coffin, and her parents snuggled her into it from her bed only immediately before the service began. We gathered in the living room. Heli was brought downstairs to the dining table, resplendent with candles and flowers, and the local vicar conducted a service of thanksgiving and farewell. Then the chief mourners loaded up their camper van and set off for Scotland, where Helena was to be buried in a plot purchased some time ago for that purpose.

  They broke their journey at Jane’s home overnight, then continued to the rugged beauty of the Scottish wilderness to commit their redoubtable daughter to the majesty of the craggy and familiar landscape.

  I learned from this experience how families develop their understanding of the meaning of an illness over time. When the diagnosis was first made, this devoted family would have stopped at nothing to keep their daughter alive for as long as possible. And yet, quietly and lovingly, over time their position shifted. They purchased a grave site, they focused on tiny details that yielded enormous benefits to their girls, they recognised the diminishing odds of adding quality to life, and they bowed with grace and tender dignity to the inevitable, ensuring that Helena’s death was as enhanced by love as the whole of the rest of her life.

  They also determined to ensure that other families dealing with SMA should have better access to condition-specific palliative care. They fund-raised, often by walking (and requiring friends to walk) huge distances in Heli’s beloved wilderness, and they established the Helena Nursing Team of specialist nurses supporting SMA patients and their families.

  When I asked Lil for permission to tell their story here, many years after these events, she was eager that I should record this fact: in the hospital canteen queue that very day at work, the person in front of her was a nurse specialist whose badge said ‘Helena Team’. She didn’t know who Lil was, she may not even have known who Helena was–but evidence of her legacy filled Lil’s heart.

  Pause for Thought: Legacy

  What legacies have you already inherited from people now dead or no longer known to you? Perhaps material things like books, ornaments, money. Perhaps mementos like letters, postcards, or their modern electronic equivalents. Possibly stories handed down through your family. Maybe you were encouraged as a child by a particular person, or modelled yourself on people whose qualities you admired. These are all forms of legacy.

  What legacy have you already generated? You may have given birth to children or to innovative ideas; you may have taught a grandchild how to use a screwdriver or how to see pictures in the clouds; you may have founded a major company or grown a garden. You may have borne sorrow with courage that inspired other people, or quietly supported another in their time of need.

  What legacy would you like to leave? Perhaps you are an organ donor; perhaps you have gifted a legacy to an endeavour you wish to support in your will; perhaps you are already preparing memory boxes or albums for your loved ones.

  By modelling a way of dealing with a truth that society tries to hide, you can begin a legacy that calls death by name, accepts that it is a part of life, and encourages others to do likewise.

  Who would you like to support in becoming less fearful about dying? How might you engage them in talking about wishes and preferences in later life or as death approaches? How might you help each other in this task?

  Transcendence

  The human mind applies itself to many more tasks than simple survival. We are aware of our personhood, and we seek to create a personal meaning from the jumble of our life experiences. Most people adopt some kind of framework that allows them to recognise and respond to the values that give them a sense of purpose. For some their framework is religion, or politics; for others it is the cycles of nature, or the vast unfolding of the universe. For some it is a more immediate system of interpersonal relationships, or thoughtful appreciation of music, art or poetry. Whatever the framework, this search for ‘meaning beyond and yet including myself’ is a metaphysical construct that is the spiritual dimension of being human.

  In an increasingly secular United Kingdom, we struggle to find words and concepts to discuss spirituality without recourse to the traditional language of religion. Whilst members of faith groups may derive enormous benefit and comfort from the traditions and rites of their religion, sometimes these same traditions cause problems that may be difficult to identify and attend to for carers who do not share their beliefs. This is likely to be an increasing challenge as we become both more multicultural and more secular.

  Yet at the end of life, many people make a ‘spiritual reckoning’ of their worth and the meaning of the life that is ebbing; they seek to transcend the difficulties that beset them, and to consider a bigger picture. This impulse allows extraordinary acts of courage and devotion, of humility and compassion, supported and validated by their personal spiritual constructs. It is perhaps that spiritual dimension of humanness that reveals us at our very best, even (or perhaps especially) here at the edge of life.

  Musical Differences

  There is a period of most lives in which we are dying. Sometimes we are aware of this as we live through it, and sometimes it is only apparent to the bereaved in retrospect. Yet the important label of this part of life is ‘living’ rather than ‘dying’. Even at this end time, the discovery of new things, making new friends, learning and growing are all still possible, still fulfilling, still worthwhile.

  In adjacent rooms yet unknown to each other, two individuals look back with satisfaction and forward with uncertainty. Different diseases have brought them here, to their edge, and different ideologies inform their views of it. And yet so similar; so similar, like a recurring motif in a symphony.

  They share a love of music. His is classical: he is a connoisseur of Mahler, and now he finds his beloved music too poignant to listen to. Hers is jazz: she once sang like Billie Holliday. They share a healthcare background. He is a retired eminent psychiatrist (I regularly find myself bumping into retired presidents of medical royal colleges who visit him), and she is a retired hospital cleaner. They both have wonderful, entertaining tales of hapless incidents in the lives of the great and the good, to which we hospice staff listen with a mixture of mirth, disbelief and schadenfreude.

  He was admitted to our hospice with a huge and inoperable abdominal tumour. He had spent his life in medicine, treating teenagers with psychological distress and training medical students. Indeed, at a critical stage in my student career he had helped to persuade me not to abandon my studies. Now he was troubled by pain from his tumour and anxiety about the strong medications that might be needed to control it. A career working with the young had afforded him little experience of the dying.

  On arrival he was examined by one of our junior doctors. She reported that he was playing down his pain and trying to ‘maintain dignity’. He believed that confusion, drowsiness and indignity would rapidly follow any attempt to use morphine for his pain. She had tried hard to convince him otherwise, but he was adamant. His first priority was to maintain his intellect so that he could continue to support his family emotionally, and he was prepared to accept any pain to achieve that. ‘He retired before I was born,’ my trainee said ruefully. ‘Doesn’t he realise things have moved on since then?’

  Startled by this declaration (Surely I was a student far more recently than that?), my ‘How can time play such tricks?’ calculator abruptly informed me that I was old enough to be my trainee’s mother. So when she told me that she reckoned we would have to bring in the Big Guns to challenge his misapprehensions a
bout morphine, I realised with a sinking heart that she meant me, the ‘boss’ who, until thirty seconds ago, had simply seen us as fellow women in medicine, sisters in arms.

  Under the circumstances, I waited until after he was settled into his room before going in to introduce myself. Despite being a Big Gun, I didn’t feel I needed or wanted the full consultant ward-round gun carriage present for our discussion of life, the universe and morphine.

  Twinkle-eyed and sandy-haired, he was still recognisable as the kindly, powerful presence I recalled from my student days, but now much diminished, folded up like a deckchair as he perched on his bed with his back against his pillows and his knees pulled up towards his chest, a full fold-up prevented by the massive lump protruding from his lower abdomen. He was pleased to know that I had once been his student, and that I felt it was a privilege to take my turn now to serve him. He couldn’t possibly remember every student, and he had the grace and integrity to grin and inform me that since he didn’t recognise me, I must have been well-behaved.

  I asked him to describe his cancer journey so far, to let me understand what troubled him most and what his priorities were for his time at the hospice. His GP had asked for him to be admitted because of the severity of his abdominal pain and his reluctance to try any of the medications offered to him at home. With a rueful grin he said, ‘I’d better introduce you to Bruce.’

  Bruce, it turned out, was his tumour–so named because ‘he came from down under’. Bruce was initially removed by a surgeon, but returned and grew in size and vigour over the next few months, wrapping himself around several vital organs and blood vessels, thus assuring himself and his host of mutual destruction. ‘The whole family calls him Bruce. It helps us to deal with it,’ his owner explained, and again I remembered his dry humour of old, smoothing awkward moments in a consultation and implying ‘You and I are both in on this joke’ to cement the therapeutic relationship.

  Having been introduced to Bruce, it was only polite to give him some attention. He rose like a rugby ball from the lower left part of his owner’s belly, as hard as a rock and overlaid by stretched, shiny white skin bearing distended blood vessels like a tattoo of rats’ tails. Bruce was exquisitely tender to the touch, and the pain drained the remaining colour from my patient’s face. I cannot say that I was pleased to make Bruce’s acquaintance. However, the moment of shared humour opened up a new spirit of understanding, and I was allowed to talk about pain relief.

  Like partners in a courtly dance, we explored his experience of morphine together. He knew it only as a drug of abuse from his psychiatric practice. As a junior doctor he had been familiar with the ‘Brompton cocktail’, a brew that was concocted to manage intractable cancer discomfort before we understood pain well, and before we had worked out how to titrate painkillers so that they matched the individual patient’s pain and left their mind clear. In those days rendering a patient unconscious was considered an act of kindness, he said, and the semi-conscious were unable to converse in any intelligent way while taking this industrial-strength drug mixture.

  Of course, I accepted his premise that seeing him thus mentally incapacitated would be very distressing for his family, and would undermine his own sense of personal dignity. In return, he accepted that I had some experience of using these drugs very carefully, and had even undertaken several years’ training to become a consultant in palliative medicine, a specialty only invented in the 1980s. Perhaps he might allow that medicine had progressed since the Brompton cocktail. And with this mutually gracious exchange, he agreed to a cautious experiment with a very small dose of morphine. Over the next three days he allowed us to increase the dose, and we watched his deckchair posture unfold, until I met him walking along the hospice corridor, glowing with the joy of freedom from pain.

  He was delighted with the hospice. He admired everything, and I remembered that this had always been his way. He thanked the nurses and praised the cleaners and asked the chef to visit for personal congratulation. He was constantly attended by members of his loving family, a wife and three daughters and occasionally several small grandchildren whom he held in thrall with his story-telling. As his pain improved, giggles of delight and gasps of excitement rang from his room as he told them his tales. With his pain better controlled, he was able to return to light duties as a climbing frame, which is a very important grandpaternal role. ‘Everyone just has to be careful not to nudge Bruce.’

  I often popped in to see him at the end of my working day, and on one of those occasions he explained to me his deep loneliness. Since he had realised that he was dying, he was no longer able to indulge his lifelong love of the music of Mahler. The pathos and beauty of the music now resonated too deeply with his sense of approaching farewell. He found the time between family visits hung heavy in the absence of his beloved music. His dignity in revealing his soul in this way was immense, and we sat in silence together, contemplating those ideas so huge that words will not suffice.

  Along the corridor, a secret musician was also approaching the end of her life. She was a feisty widow who had brought up two sons alone; she had worked as a hospital cleaner, and at night-time she topped up her income with bar work. Her sons described her as strong, proud and funny. Her anecdotes from her barmaid days kept us all entertained, and were expressed in a breathless wheeze of colourful language and local dialect. She had a chest condition that had gradually contracted all her horizons–confined to walking short distances, then to home, then to a chair, and now to bed. Because of paroxysms of unpredictable breathlessness, at home she slept with a phone beside her bed, but when she dialled her sons they were unable to decipher her breathless panic. Her chest medicine team had referred her for hospice care in the hope that we could reduce the level of night-time panic associated with her breathlessness.

  She managed her breathlessness by humming. She told us that she found it controlled the speed of her out-breath (Try it!) and gave her a sense of control. She favoured jazz tunes, of which she seemed to know an endless number. She told us that she had a collection of jazz tapes that she sang along to at home. Her breathlessness was worse at night because her very old cassette player had no headphones, so she didn’t play it at night-time in case she disturbed her neighbours. She pressed her sons to bring some audiotapes and the precious tape recorder from home. It took them some time to excavate them from the chaos of a household where maintenance had become neglected as her chronic chest complaint had made her too breathless for housework.

  The tapes were a mixture of Ella Fitzgerald and Billie Holliday, and some live recordings from a noisy bar of a singer with a breathtaking voice. This, she explained, had been her ‘untapped’ career: she had been a jazz singer on cruise ships when she met her husband, but had given up singing to keep his house and rear their children. The boys had never known her as a singer; she had stopped singing as a young widow when the light in her voice was extinguished by sorrow. Only recently had she returned to her music for solace as her breathing failed.

  ‘Billie-Ella’, as the nurses admiringly dubbed her, played these tapes constantly, sometimes listening to her heroines and sometimes replaying her own voice and reminiscing about those happy, heady days of her courtship and early marriage. She hummed along as best she could, breathing deeply between bars, assisted by piped oxygen. Her sons were stunned to realise that their mother had such a talent, and such encyclopaedic knowledge of jazz. The nurses were astonished by how much better she tolerated her breathlessness when the music was playing.

  The hospice’s acoustics carried the music to her neighbour’s room at night-time, and on one of my end-of-day visits he commented that since he started the morphine, his sleeplessness had been comforted by a kind of ‘dreamy singing’. He had never heard music like this before, and spent several nights wondering whether his medications were causing some kind of hallucination. He was delighted when the night nurses assured him that the music was real, and he asked them to sit him in the corridor so he could listen m
ore intently.

  And so the doctor and the barmaid were introduced. He knew very little about jazz, yet he quickly recognised that he was in the presence of greatness. Billie-Ella was delighted to play her tapes to someone who appreciated the velvet warmth of her youthful voice and the poignant jazz melodies of love and loss; her new companion found a new musical comfort that carried him through the absence of Mahler; and the two created a short, intense and mutually supportive friendship as they mentally jazz-danced through their final weeks of life. I was struck by the parallel lives they had lived in their love of music, albeit of very different genres, in their dedication to their families, in serving the NHS in two vital roles. It almost felt that their meeting at the edges of their lives was destined.

  I don’t go to many of my patients’ funerals–it could become a regular occupation in my job. But I did feel a special tie with my erstwhile trainer, and I recognised many of our local medical confraternity at the crematorium when I arrived for his funeral service. We stood as the family arrived and the coffin was brought in to a passage from Mahler’s 5th Symphony. There were many happy anecdotes about a man who had lived a full and largely happy life. And, as so often at funerals, we discovered that the wonderful man we had known was only the visible tip of the iceberg of his total being: he had taken homeless young people into his own home, rowed for his university, set up one of the first teenagers’ psychiatry practices in the country, played viola in a semi-professional orchestra (Ah! That adagietto in Mahler’s 5th!). As the coffin was removed and we stood to leave the celebration of his life, a solo jazz trumpet introduced the strains of Billie Holliday, his latest, and last, new passion. It sounded like Billie Holliday. Or perhaps it was our barmaid jazz singer.