One of the patient groups where I frequently met troublesome breathlessness was young adults with cystic fibrosis. This is an inherited condition that gradually damages the lungs, pancreas and digestive system during childhood and teens, often leading to death before the age of thirty. A few patients survive longer thanks to improved management of damaging chest infections, and better remedies for their diabetes and nutrition problems. Some may survive long-term if they are lucky enough to have a successful lung transplant. Timing of lung transplantation is critical–it is a high-risk procedure, and so should be delayed while the patient can manage a reasonable quality of life, but not to the point that the patient’s deteriorating lungs make them too ill to survive the anaesthetic and the surgical procedure. Our hospital palliative care team works closely with the cystic fibrosis team, offering advice to reduce the impact of breathlessness, cough, gut problems and weight loss, whether as palliative measures or to prepare people to be fit for surgery. We also work psychologically with a few patients whose anxiety and panic generate increased breathlessness.
When my home phone rang on Boxing Day, I was surprised to hear the voice of a respiratory physician at the hospital. He was calling for advice about a twenty-two-year-old man with cystic fibrosis. Mark had end-stage disease. His only hope of survival was a lung transplant. He was clearly a resilient guy: over the past fifteen years he had coped with gradually progressive breathlessness, but had continued his education, played and later supported football, been part of a group of ‘lads’ who enjoyed drinking beer and making jokes. He had not let breathlessness stop him. Yet for the last five days he had been sitting bolt upright in bed in a hospital room, in terror. He could not be left alone. He could not bear the door to be closed. He was panting into an oxygen mask, despite not really needing oxygen therapy. Five days previously he had seen the transplant surgery team, who had told him that he was now a candidate for transplantation. He had been given a radio pager so he could be contacted day or night if organs became available. Although nothing else had changed, he had changed his view of his survival chances over the thirty minutes of that surgical consultation. He was too frightened to go home after his clinic visit.
‘Can you come and see him?’ asked my colleague, adding, ‘How soon can you get here?’
It’s Boxing Day!
I called a taxi.
The nursing team greeted me warmly and took me straight to Mark’s room. He was sitting like a castaway on his hospital bed island, a tower of pillows behind him instead of a palm tree, wide-eyed and staring over a hissing oxygen mask. A physiotherapist who was sitting anxiously beside him darted for the door, murmuring, ‘Mind if I leave you to it?’ as he slid rapidly out of the room.
Once I had passed the coffee test, our conversation could begin. Mark described the sensation of working hard to breathe, associated with dry mouth, heart palpitations and a sudden realisation that he was about to die, that had gripped him at least three times an hour since he had been given the radio pager. Although conversation was handicapped by Mark’s hissing mask and his penchant for expletives, we were able to draw out his experience as a sequence of steps, as follows:
Mark was intrigued. As I drew the experiences he was describing into the diagram, he leaned forward to watch, even though this constricted his chest movement. He became irritated by the hissing of the oxygen mask, and moved it from his nose and mouth to the top of his head, where it was held in position by its elastic thread, like a tiny policeman’s helmet. He began to point out the sequence of events, and to add details, until he was satisfied that the model described what he was experiencing.
‘What do you make of that?’ I asked him. He pondered. He took the paper and pen, and emphasised the arrows. He underlined the word ‘terror’.
‘It’s a vicious circle,’ he declared. Absolutely.
‘So, let’s just consider for a moment,’ I suggested, ‘because that experience looks really horrible. I’m not surprised you can’t sleep or be left on your own. How many times has that happened to you now?’
Together, we calculated that it had happened at least three times an hour, at least twenty hours a day (because he dozed off occasionally at night), for the past five days. That added up to around three hundred episodes of feeling he was about to die at any second. How exhausting.
‘OK,’ I invited him to reflect. ‘You’ve felt on the brink of death three hundred times in the last few days?’ He agreed. ‘And how many times have you actually died?’
He blinked at me and shook his head.
‘Well, how many times has the resuscitation team come in to save you?’ I asked.
Shaking his head, he regarded me suspiciously. There was something vaguely and inappropriately comical about the oxygen mask perched on his head.
‘Perhaps you’ve passed out?’ I asked. No, apparently not.
‘So what do you make of this belief that you’re about to die at any moment, then? It’s happened three hundred times, and it hasn’t yet caused you to collapse, faint or die…’
There was a long pause. He took a deep breath, then exhaled slowly and in quite a controlled way. We had been talking for forty-five minutes. He isn’t using the oxygen. And he hasn’t missed it. Time to test out a theory…
‘It’s probably time I asked why you’re wearing your mask on top of your head,’ I said. He started, dropped the piece of paper and grabbed the mask, suddenly breathing rapidly and with his eyes rolling in terror. I held the diagram in front of him and asked where in the vicious circle he found himself. He jabbed a finger at ‘terror’, and continued to pant. I asked him why he thought he needed the oxygen now, when he had worn the mask on his head for more than thirty minutes without missing it at all.
‘When you feel ready, Mark, I wonder whether you could lift the mask away from your nose again,’ I said, while he panted and swore with astonishing fluency inside the mask. Gradually the heaving of his chest slowed. Cautiously, he raised the mask off his nose and removed the elastic from around his head, so he could hold the mask in his right hand while picking up the diagram with his left. He grinned at me tentatively.
‘It’s panic, isn’t it?’ he said.
Bingo. He’s absolutely right. Got it in one.
Together we examined his belief that he might die at any moment, and considered other possible explanations for his terrifying experience. He remembered the ‘flight or fight’ response from long-ago biology lessons in school; the way the body makes adrenalin to deal with any threat, causing deeper breathing, faster heart rate and tense, prepared muscles, primed with oxygen and ready to take action to save our lives. He could also describe the physical sensations he experienced when his beloved football team was awarded a penalty at a critical point in an important game. As the player places the ball on the penalty spot and walks back before taking the vital kick, many people can describe the physical symptoms of adrenalin release: dry mouth, pounding heart, breathlessness, weak legs, sweaty palms… yet we describe this experience as ‘excitement’. Wedding-day nerves can feel the same, but brides don’t generally interpret them as a fear of impending death.
We began to modify our diagram, as Mark understood the role of adrenalin and the sense of anxiety that was giving him more symptoms, and his mistaken but understandable assumption that the symptoms caused by adrenalin were a danger to him.
Before leaving, I asked Mark if he thought he could explain this diagram to his dad, who had been waiting outside the room. And could he please have some more panic attacks so he could check out our hypothesis, and add any symptoms we might have missed. He grinned and agreed.
This is cognitive therapy for panic. The model is usually used when otherwise healthy people misinterpret innocent physical sensations of adrenalin release, but it is just as relevant, and can be incredibly helpful, for people who have real breathlessness and whose focus on their symptoms prevents them from engaging in anything else, in particular in anything pleasant. This is a conversation Ma
rk and I will have next time we meet.
Two days later we are reviewing his diagram and his experiences of the past forty-eight hours. Predictably, now that he understands the mechanism of the adrenalin–heart pounding–terror link he has had only five more episodes of panic, and one of those was triggered by ‘thinking about that gorgeous nurse’. Sense of humour is returning. Good sign.
Mark still believes he is too fragile to manage at home, but he has contemplated the ‘oxygen on the head’ episode, and has realised that he was not breathless while we were drawing the diagram because he was completely distracted. We make a list of distractions he could use in hospital to deal with breathlessness. He agrees to use these to see if he can manage to get out of his room and go to the lift block; and possibly go down in a lift to the coffee bar. Particularly if that nurse could be his escort.
The expedition to the lift block is a success. The next day, Mark and a physiotherapist go down in a lift to the coffee bar; he enjoys himself so much that he is away for half an hour, and the ward send out a search party. Amused, he puts on warm clothes and crosses the road to the park. And then goes into town for a half day with his pals.
On my first official day back at work, I greet the new year by visiting Mark in his room. He is delighted with himself. He has been to the pub with friends, and nearly got into a fight. How? Well, apparently he is using a different set of distraction techniques when he is out of his room, ranging from innocently looking at makes of cars, to more provocatively looking for ladders in women’s tights, and estimating their bra sizes (which was what nearly caused the fight).
Mark did get home. We continued to meet for CBT, and he managed his breathlessness by using distraction and remembering non-threatening explanations for his symptoms. This worked for three months, but with no lung transplant available he developed another chest infection that tipped him back into hospital.
The ward team phoned me on a Saturday to say that Mark was dying, and did I want to see him. Does he want me to? Yes. Are his parents there? Yes. Come and check there isn’t anything we’re missing, they said.
I was glad to go. Mark’s favourite physio had also come in on her day off, and was in his room along with Mark’s parents and the ward sister. All were solemn and red-eyed. Goodbye is always hard.
‘Oh, it’s you,’ he greeted me, lying in a foetal position propped up by pillows, and with oxygen pipes up his nose. He was breathing very fast, and was only able to say one or two words per breath. ‘Are you here for coggy thingy or pally whatsit?’
‘I’m here to see if you need a decent cup of coffee,’ I said. He grinned, then asked his parents to leave the room for a moment. His glittering eyes shifted around the room, vigilant and wary, yet his smile was sincere.
‘You should be fucking proud of me!’ he announced, his ability to swear still utterly intact.
‘Really? Why’s that then?’ I am not going to cry.
‘Well, look at me. I’m fucking dying, and I’m not fucking panicking!’ he declared, delighted with himself and allowing himself a deathbed swagger.
Smiling tearfully at each other (OK, so perhaps I am going to cry), we both understood that this was Mark’s great moment of personal triumph. He realised he was dying. He was about to be given drugs to relieve his breathlessness that he knew would also make him sleepy. He had already told his mum that he couldn’t bear to see her being sad, so she must wait outside and his dad would keep watch while he was dying.
Using CBT principles that he had been practising for only a few weeks, Mark had managed his distress, planned his deathbed, and as he said, he was not panicking. He had learned not to fear his fear, and he guarded his peace of mind heroically to the last.
This episode of care had many repercussions. The ward team used Mark’s diagram to understand his panic and to talk him through it, instead of giving him unnecessary oxygen and making him dependent on reassurance. The cystic fibrosis team saw the benefit of a psychological intervention even at the very end of life, and a member of their nursing team trained as a cognitive therapist and has gone on to produce a transformational clinical service and groundbreaking research on the impact of CBT-based support for people with respiratory diseases. Breathlessness is terrifying: CBT helps people to understand and manage their terror, instead of feeling controlled and undermined by it.
The success of a psychological intervention lies in how far the patient moves from unhelpful beliefs, thoughts and behaviours to new and more helpful ones, and therapy is most helpful when the patient perceives that they, and not the therapist, are the agent of change. This could be regarded as ‘not getting the credit’, but in fact it is perhaps the most rewarding outcome of all to watch someone fly high and proud on their own, because therapy has given them wings.
Pause for Thought: My Way
These stories have shown different ways in which people cope with difficulties: trying to keep control; avoiding the truth; sinking into helplessness; simply accepting whatever fate has in store; using resilience to adapt to events; and becoming anxiously preoccupied with the threat of the situation. Which of these patterns do you recognise in yourself? You may have more than one style.
Which coping styles do you recognise in the people closest to you? How might your individual styles make things easier or more difficult for each other if you had to deal with a challenge together? How could you have a conversation now to acknowledge each other’s styles?
Each of these coping styles has positives as well as negatives–for example, helplessness has the attribute of allowing others to help, which can be a struggle for people with some of the other styles. So remember to look for each other’s strengths and resilience, as well as any potential ‘flashpoints’.
If you worry about having a conversation like this with someone you know well, then perhaps you could join in a ‘death café’, either on your own or with your loved one. These are friendly, informal gatherings at which people can mull over various aspects of death and dying over a comforting warm drink and excellent cake. There are death café meetings in more than forty countries, and they always welcome new visitors.
Naming Death
It has become taboo to mention dying. This has been a gradual transition, and since we have lost familiarity with the process, we are now also losing the vocabulary that describes it. Euphemisms like ‘passed’ or ‘lost’ have replaced ‘died’ and ‘dead’. Illness has become a ‘battle’, and sick people, treatments and outcomes are described in metaphors of warfare. No matter that a life was well-lived, that an individual was contented with their achievements and satisfied by their lifetime’s tally of rich experiences: at the end of their life they will be described as having ‘lost their battle’, rather than simply having died.
Reclaiming the language of illness and dying enables us to have simple, unambiguous conversations about death. Allowing each other to discuss dying, rather than treating the D-words as magic ciphers that may cause harm merely by being spoken aloud, can support a dying person in anticipating the last part of their living, in planning ahead in order to prepare their loved ones for bereavement, and can bring the notion of death as the thing that happens at the end of every life back into the realm of the normal. Open discussion reduces superstition and fear, and allows us to be honest with each other at a time when pretence and well-intentioned lies can separate us, wasting time that is very precious.
Second-Hand News
Communication through conversation between two people is such an intrinsic part of life that we often take it for granted, yet we are all aware of occasions when friends and family get hold of the wrong end of the stick. What they thought they heard us say is not, in fact, what we thought we meant. Now multiply the possibilities of mis-hearing, misunderstanding and getting lost in translation when a person gets important news from their doctor, and then tries to report it back to their family afterwards. It’s a recipe for disaster.
Early in my career, I had the good fortune to
be offered a twelve-month contract as a cancer research fellow, working in an academic cancer centre with a prestigious and groundbreaking team. My role was to see patients in clinics and on the wards who had agreed to take part in trials of new drugs; sometimes these were anti-cancer drugs, and sometimes other medications intended to reduce the side-effects of treatment. Over the year, I was mainly dealing with patients for whom no possible options for cure remained, and who knew that their only treatment options were aimed at improving their quality of life or possibly extending it by a short time. Some of these patients bravely offered to test new anti-cancer drugs, aware that they were unlikely to experience any personal benefit yet willing to help our research in order to contribute knowledge that might help future patients. For some it was a personal anti-cancer crusade; for others it was making sense of their impossible situation by using their misfortune to improve other people’s fortunes in the future; for some it was a form of bargaining with God or the Fates, in the hope that their reward would be an unexpected improvement in their own health.
I saw most of these patients very regularly. In addition to their admission for two or three days’ treatment with new chemotherapy agents every three weeks, I saw them weekly to take blood tests that monitored the impact of the drugs on their body, and to ask them about any side-effects they were experiencing. We talked about other things too, of course: how they were managing, what their families were up to, what plans they were making for Passover or Eid, the progress of a daughter’s pregnancy or a grandson’s apprenticeship application. They probably spoke to me more often than to their friends and neighbours, and I certainly saw more of them than I did of my own family.
With the End in Mind Page 10