With the End in Mind

by Kathryn Mannix

  For Dan, the loss of control comes if he is taken to hospital. Suddenly all the in-house knowledge of how to move him, hoist him, position him in bed, bathe him, is lost. Well-meaning staff either fail to listen to him or assume that his lack of movement is associated with brain damage, making him incapable of expressing his preferences. He hates hospital. He fears hospitalisation. He dreads being hooked up to a ventilator during a medical crisis, to find that he is then condemned to live with a ventilator when without it his natural death might have occurred peacefully. As long as he can remain at home, living as well as he can, and supported through any crises, he is content. What he cannot bear is the thought of an ambulance crew or hospital team that arrives on the scene during a crisis, intervenes, and prevents his natural dying. So, having succeeded in restoring Dan’s will to live, we must now plan how to manage his death well.

  Dying quickly from a cardiac arrest would prevent hospital admission, so Dan still declines a defibrillator. He declares this ‘not suicidal, just self-preservation’. There’s a crazy logic that his family accepts. He also asks for a Do Not Attempt Cardio-Pulmonary Resuscitation order, so no one will resuscitate him by mistake. These are brave and delicate conversations, and Dan thinks through the options carefully. His magnificent parents, who want him to live for as long as possible and would take the defibrillator, a ventilator, a whole intensive care unit into their home if possible, support his decisions. Such empowering parental courage, such enabling of autonomy. This really is love in action.

  The next piece of work we do is to prepare an Emergency Health Care Plan. In it, we describe Dan’s medical condition, his understanding of his condition, and his preferences for levels of intervention should decisions need to be made in a medical emergency. We state clearly that if he is so sick that he will probably die, he does not want to go to hospital, but wants all care to be aimed at comfort and delivered at home. We describe his wish to be as awake and alert as possible, so that he can communicate, but also that if he is feeling very afraid or has severe symptoms, he would prioritise having symptoms managed over alertness. We express his carefully considered wish not to have cardiac resuscitation should his heart stop, as we know it might. We state his desire to avoid the use of a ventilator. And his wish that, if he has a medical emergency that appears reversible with hospital treatment, he should be admitted to hospital for treatment, provided he is discharged home as soon as possible; and if the hospital team cannot save his life, then he wants to come home to die.

  Dan’s many specialist medical and nursing advisers support us in writing this plan. His cardiologist reviews the suggestions for palliation of heart failure at home; the consultant from the home ventilation team wins Dan’s confidence and tests his breathing capacity, showing that respiratory failure is not yet on the horizon, and advises about best management of future chest infections; the muscular dystrophy team comment on drafts. In working together on the document, we are distilling a vast amount of expertise into a carefully crafted plan that promotes Dan’s wishes.

  This takes several weeks, and by the end of it Dan has a complete protocol for what actions family, GP, district nurse, ambulance crew, out-of-hours emergency services and hospital emergency departments should take under specific circumstances, including a plan for end-of-life care at home with a box of ‘just in case’ drugs for use by community staff. This is all backed up by a DNACPR order. Dan, who now loves being alive, has a complete plan for how his dying will be managed. He finally, really, feels in control.

  One of Dan’s bleakest thoughts during his depression was that ‘It was a waste of time me being alive. I won’t achieve anything. I will leave no legacy.’ Of course, part of his legacy was firmly in place: the enormous love and devotion within his family. Dan will be present forever for them. But his peers are making their way in the world, and the contrast between his life and theirs becomes ever more stark. While I was mulling this over, fate gave us a wonderful opportunity.

  Dan’s EHCP and DNACPR order were two of the forms involved in a region-wide collaboration to plan complex care in advance, respecting the informed wishes of patients no matter where their care takes place. By carrying his plan with him, Dan had a right to the same care whether he took ill at home or was scooped up by emergency services while out at the cinema, across a huge area of England. This was a national first (although sensible Scotland already had a national DNACPR order), and the regional NHS team had arranged a media launch of the documents. The intention was to raise public awareness and attempt to get people with serious illnesses to begin discussions with their GPs, hospital specialists and, of course, their families. As regional lead I was to write newspaper articles and be interviewed on radio and TV. But wouldn’t it be so much more interesting and compelling if not I, but an articulate patient, could be interviewed?… Dan didn’t need to be invited twice.

  Fast forward to the launch date. Dan’s mum generously opened her home to the media for a day. Dan was filmed, photographed, tape recorded. The journalists were utterly entranced by his down-to-earth discussion of his illness and his quiet acceptance of his early death. He explained his treatment plan and decision against resuscitation; he described the empowerment of having been able to discuss his condition openly and plan his future options in detail. He was broadcast on the radio and on two TV channels, and appeared in the newspapers. He was a Facebook and Twitter sensation. Within two weeks the numbers of enquiries on the regional NHS website jumped tenfold. Dan’s clear, level-headed and generous sharing of the making of his end-of-life plans changed many more minds and melted many more hearts than anything I could have said.

  But best of all, the consultant from the DMD team rang me to let me know that other young men with the same diagnosis as Dan had contacted the clinic to ask if they too could have ‘those papers like Dan’s’.

  Unpredictable, yet absolutely right. Dan had the time of his life, and helped a whole community to consider putting more thought into discussing and planning their end-of-life care.

  Dan’s time and mode of death remain something unpredictable. The conversations that he was empowered to have by taking up advance care planning helped him to be better understood by the DMD team, the cardiology team, his own family, even himself–something that people often avoid, but that in the end is right. We should all have those conversations with our dear ones, and sooner rather than later. Thanks, Dan.

  The Year of the Cat

  The timing of each death is a mystery. Although we can anticipate when time is getting short, and indeed it becomes easier to estimate life expectancy as the end of life approaches, on occasion the moment of death seems to be related to something more than just the underlying illness. People we expected to die days ago wait until an important piece of news is announced, such as a birth or other significant event; people who have been continuously accompanied by family members somehow stop breathing during the only few minutes they have been left unattended; people who were expected to live a little longer find that a personal issue has been resolved, and relax into dying earlier than expected.

  It’s the community review meeting. The specialist nurses of the community palliative care team are discussing the new patients they have seen this week, usually at the request of a GP or district nurse. These specialists, often referred to as ‘Macmillan nurses’, have additional training and expertise in palliative care and will help the primary care team to manage most patients’ physical, emotional and spiritual distress in their own homes. For particularly difficult-to-manage symptoms, admission to the hospice might be requested. It is the early days of the in-patient hospice, and the Macmillan nurses have their office here, so as a young trainee I am able to attend the review meetings, and sometimes I am entrusted with deputising for our leader. Today is such an occasion.

  The next patient is introduced by Marian, a livewire with a vibrant sense of humour and wonderfully Home Counties delivery. She presents the story of Bob, an elderly recluse living in a council
flat in a run-down suburb of the city. Bob has advanced cancer in his mouth and neck. He is a proud man who declines help, and Marian had to conduct her first discussion with him through his letterbox. She produces a collection of pages roughly torn from a notepad. Bob’s cancer started in his tongue, which makes his speech almost unintelligible, and as Marian boomed her plummy questions from one side of the door, he had issued his replies on paper through the letterbox. Towards the end of their interview Bob had opened the door to let his cat out, and the stench of stale food, stale cat and stale human had almost overwhelmed Marian. She chose to admire the cat; Bob invited her in.

  She found Bob smartly dressed in grubby clothes: checked shirt; trousers so loose that he needed a belt; a waistcoat and cravat. His swollen lips and cheeks were red from wiping the drooling saliva that poured from his irritated mouth. He led the way into a living room piled high with boxes and plastic bags, filled with–what? Marian spotted a bag full of egg-timers, another full of old newspapers. Some boxes held rubbish, whilst others clearly contained carefully collected items. Some bags simply held dozens of paper tissues daubed with drooled saliva. Only one chair was visible amongst the debris: an ancient, upholstered armchair made shiny by years of use that had ingrained and polished the grime. Bob gestured to indicate that Marian should take it, and she courageously perched herself on the very edge while Bob threaded his way through his grotto of belongings to the kitchen, returning with two cups of tea in British Rail mugs. He sought his pad, and wrote:

  Unfortunately I am unable to offer milk.

  Bob brought in a kitchen stepping stool and sat at Marian’s feet, constantly dabbing away his saliva with tissues while conversing using his writing pad. He was frustrated when saliva dribbled onto the paper, and would rip the page away and begin writing again in order to present clean pages, a process that doubled his writing time. From this conversation, Marian understood that Bob had constant pain in his mouth and one cheek, that he was becoming less and less able to swallow his painkillers, and that his cat was the centre of his world.

  Bob’s cat had been chased into his flat by a local dog about a year earlier. At that time it had looked around six months old. Bob had just completed radiotherapy to his mouth and was very tired, often too tired to shop, cook or eat. The arrival of the kitten changed his order of priorities: he got up every morning to let it out; he walked to the supermarket to buy cat food (indulging his new pet’s fastidious taste for the most expensive food available); he retrieved a blanket from amongst his collection of bags and folded it into a pet bed. Financial necessity meant that the fussy cat received only meagre portions of food, so it spent all day rubbing itself around Bob’s legs and purring, to be rewarded with a tiny allocation of cat biscuits. Bob had never been so loved, nor felt such companionship.

  The problems Marian brought to the community review meeting were Bob’s pain, and Bob’s cat. Bob needed a period of in-patient care to manage his awful pain, but he was unwilling to accept this because he had no family, friends or neighbours to whom he could entrust the care of his bewhiskered next of kin. Marian herself was a cat-lover, and perhaps that was partly why Bob had trusted her to come into his flat. Her own cats would not tolerate Bob’s kitten as a visitor, but she could lend me anything I might need to take in a little kitty-witty for a couple of weeks while we just… Wait! Me? I don’t like cats! I have been scarred, physically and mentally, by an early catty acquaintance. No way!

  Marian’s eyes filled with tears. ‘He’s a little tabby with white paws. He’s small for his age because Bob can’t afford much cat food. And he’s got the sweetest face…’ She holds her fingers beside her cheeks, like whiskers. ‘You’d love him!’

  Marian doesn’t understand ‘no’.

  That evening, I try to choose the best moment to announce to my husband that we are taking a physically retarded tabby cat on a two-week foster placement. As anticipated, the news goes down badly. Unlike me, my husband loves cats, and grew up with a series of them. It would be cruel to lock a cat in our house while we’re at work all day, he protests. What were you thinking? The answer is definitely no.

  The cat is delivered by Marian in person before we leave for work the next morning. She hands the cat-carrier to my husband, who, despite being an Immovable Object, can recognise an Irresistible Force when he meets one. Game over.

  Bob has a bed in a four-bedded bay, and Marian says he looks ‘splendid’ after a luxurious bath (he declined any nursing help). He is given a pair of pyjamas, and he accepts because all his own are contaminated by saliva (and grime). He agrees to allow the hospice housekeeper to launder them for him. Marian alone is entrusted with a key to Bob’s flat. He asks her to bring in his clothes, and also all his cat treats to give to me towards the cat’s bed and board. Marian brings Bob’s clothes two days later, in one of her own suitcases; Bob is delighted to note that they are much cleaner and better pressed than he had remembered… Marian, with her heart of gold, is wondering how to help with his flat next.

  At home, the domestic rhythm of our mornings is changed at a stroke. The beast eats a massive breakfast in the kitchen, then runs amok for thirty minutes before I can capture it and manoeuvre it into Marian’s cat-carrier. It chooses a different place in the house to anoint with its smelly urine every day, and we play ‘hunt the cat poo’ every evening, led by pungent clues. No wonder Bob’s flat was whiffy.

  I deliver the cat to Bob each morning. It tours the four-bedded bay with its tail erect, sniffs the corners of the room, then jumps onto Bob’s bed and curls up to sleep behind his pillows, purring gently.

  Bob was a perfect patient. He was courteous and appreciative. It took time to converse with him thanks to the combination of his fastidiousness about the state of his paper and the slow concentration with which he carefully formed each letter of his copperplate calligraphy. He was willing to experiment with painkillers delivered by injection, so that he would have no need to swallow tablets. As his pain improved he began to walk around the hospice (cat on arm, syringe-pump in pocket), but he quickly became tired. He pined for his flat and his own personal space, and so, two weeks after he arrived, he was ready to go home. Time for me to talk with Bob, to plan his discharge from the hospice.

  I was sitting beside him when the cat jumped onto my knee and settled down, purring. He has developed a fondness for you, Bob wrote on his pad. I couldn’t help feeling absurdly pleased; the purring transmitted a trembling warmth all over my body. You have provided an affectionate lodging for him, wrote Bob.

  I smiled. ‘It’s been our pleasure,’ I said, and in that moment I realised that I meant it. The cat had taken to a litter tray (husband’s experienced intervention), and the loudness of his milk-associated purring was remarkable. He had doubled the household milk order single-pawedly.

  He should remain domiciled with you now, Bob ominously penned on his pad.

  Uh-oh!

  ‘Bob, whenever you need a break, then the cat can come back to us. But he’s your cat. We can’t take him away. He is your family,’ I said. ‘Besides, my husband will think I’ve talked you into it.’

  Bob wiped his mouth. I noticed there was bloody ooze in his saliva. Show this to your husband, he wrote, as evidence of my intentions and of your innocence. He carefully tore a clean page from his pad. With fastidious precision, he wrote the date on the top of the sheet, and then inscribed in his careful, artistic hand:

  I am glad that the cat

  will be yours for ever

  and ever.

  Amen.

  And then he signed it with enormous care,

  Robert Oswaldson.

  That evening at home, the cat was discussed again. We were DINKys–Dual Income, No Kids. We were out all day, and were both on call many evenings and weekends. We were sitting exams and writing up theses and really, really, didn’t need a cat.

  We took the unusual step of visiting Bob in the hospice together. He was a bit sleepy, but acknowledged our presence by sending me t
o make tea for all three of us. And milk for the cat. We repeated that we would offer foster care whenever needed, and Bob nodded, stroking the purring cat. It was Bob who extracted a promise from Immovable Object that after the Inevitable his cat would become ours. Bob was satisfied with this Gentlemen’s Agreement.

  On call that Sunday evening, I got a call from the hospice. Bob was restless, pacing the room and shouting, although his speech was so distorted that no one knew what he wanted. He was too agitated to use his pen and pad. He had tried to throw a chair at one of the nurses. Earlier, his pulse had been rapid and his temperature raised, but now he would not let the nurses re-check. ‘Please come and assess him.’

  It took less than five minutes to drive there. Bob was standing in the middle of the room, wearing only pyjama trousers. His frame was wasted and tiny, but in his disturbed state he was very strong. The nurses had removed the other patients to the calm safety of the TV lounge. I went in and sat with a nurse beside Bob’s bed, where the cat was curled up behind the pillows, indifferently washing its paws.

  ‘Bob, come and sit with us,’ I said, then ducked as a teacup was hurled across the room. I pulled the cat out onto the counterpane. ‘Come and stroke him,’ I suggested, ‘because it’s nearly time for me to take him home.’ Bob stomped across the room and picked up the cat-carrier, initially swinging it like a weapon and then placing it on the bed, at which (to my astonishment) the cat immediately jumped in and lay down. Bob began to tie the door closed, and as he bent down I could see bloody saliva dribbling through a hole that had appeared in his cheek. The skin of his cheek was crimson, and so swollen that the pores looked like craters pitting a shiny, smooth, red lunar surface.

  ‘Bob, your cheek looks very sore…’ I began. He looked up, catching my eye directly, and shook his fist. Was he angry with us? With his pain? With his situation? He sat heavily onto the bed and began to cry, sobbing and rocking and wailing, possibly trying to speak, yet utterly unintelligible. I touched the back of his hand, but he shook me off, roughly shoved the cat-carrier at me, and pointed to the door. The message to take the cat away was clear.