With the End in Mind

by Kathryn Mannix

  ‘Each time I get a new prescription,’ she confided to me, ‘I open the bottles and tip all the pills into here. Then, four times a day, I pick out a handful and take them. It seems to work!’ And indeed, it had worked for many months, until her random selection had not supplied enough of the tiny white Digoxin tablets needed to keep her heart in a steady rhythm and she ended up in hospital. I remembered how I had wished I could photograph that jar. I knew it illustrated a really important lesson about the dangers of polypharmacy–not just that the more drugs we prescribe, the more scope there is for error or interactions between them, but also that prescribing has to be realistic about a patient’s lifestyle and ability or willingness to take their medications.

  Now, here in the emergency department twenty years later, is a woman struggling to swallow who, instead of using that limited ability for pleasure, is subject to a daily battle to take her medicines and is probably left exhausted by the effort. No wonder she is screaming. Monique and I leave Maria to deal with a telephone query, and set off to find our patient.

  There is a big name-board in the staff area, but we don’t need it. The sound of a wailing, distressed patient fills the corridor, and we follow the sound to a bay where three women attached to drips and heart monitor wires are gazing forlornly at the curtains drawn around the fourth bed, from where the unhappy sound of shrieks, wails and grunts is emanating. Inside the curtains, a uniformed carer from a local nursing home sits in a plastic chair, speaking gently and calmly to the occupant of the bed–the famous economist.

  Our patient hardly looks human. She is propped upright against pillows, but the curvature of her spine bends her chest forward so that her face is looking towards the mattress. Her legs are bent up and fixed by muscle contractures. Her pewter hair, still thick, hangs lank and matted. Her hands tremble restlessly in her lap. She could not look more different from my lively and mischievous pill-pooler of twenty years ago. Monique and I exchange glances. This is going to be a very challenging referral.

  Monique goes into action. She kneels down beside the bed, so that she can look upward into Mrs Liang’s face. She smiles and reaches out to stroke one of her hands, speaking slowly and gently. ‘Hello, Mrs Liang. I’m Monique. I’m a nurse here…’ Mrs Liang pauses, surprised, mid-wail, and locks her eyes on Monique. ‘Hello,’ smiles Monique again, as eye contact is held. ‘Good to meet you.’ Mrs Liang gives a single, doll-like blink, and holds Monique’s gaze with the expressionless face of Parkinson’s disease. ‘You don’t sound comfortable,’ Monique continues, and Mrs Liang clumsily pats her abdomen with one trembling hand.

  ‘She’s had a tummy ache and been constipated,’ the carer explains, ‘and our GP sent her in to get sorted out. But she hates sitting up leaning on her back. And she’s anxious about leaving her own room. That’s why I’ve come with her. I’ve brought her favourite blanket too.’ She introduces herself as Doreen, and her eyes spill tears as she says, with surprising frankness, ‘Sometimes they live too long, don’t they? This isn’t the way to live. Poor thing, and she’s such a nice lady.’

  Monique greets Doreen as a colleague, and immediately recruits her help. Doreen explains her charge’s preferred reclining position, and with expert sliding of sheets, moving of pillows and gentle reassurance, Monique leads us through turning Mrs Liang onto her side, her limbs and curved spine now supported by plumped and folded pillows. Mrs Liang gives another slow blink, and her eyes crinkle at the edges.

  ‘Aw, that’s how she smiles!’ exclaims Doreen, grasping Mrs Liang’s hand. Mrs Liang takes a deep breath. She assumes a thoughtful expression, then whispers, ‘Thank you.’ It seems a great effort for her.

  ‘Thanks for letting us move you,’ says Monique, who then introduces me, as always, as her ‘pet doctor’. She warns Mrs Liang that I may want to ask her a few questions, and Mrs Liang promptly closes her eyes.

  Monique and I swap places, so I can stand where Mrs Liang can see me if she chooses to look. She is skeletally thin. There is a small break in the skin over her right shin, typical of the ulcers caused by poor circulation. The skin over the bony prominences at her ankles, knees, wrists and elbows is tight and shiny, but intact, a tribute to excellent nursing care at her home. I know we will need to examine the skin over her spine and sacrum too, but just now we will focus on what is easy for her, and complete our assessment gradually.

  I contemplate our patient’s predicament. This is extreme old age: frailty of body, multiplicity of health problems, loneliness at outliving friends and family, each factor impacting on the others and undermining the person’s ability to engage fully with the world. This once mighty woman seems to be reduced to a husk. It’s a truth rarely acknowledged that as we live longer thanks to modern medicine, it is our years of old age that are extended, not our years of youth and vigour. What are we doing to ourselves?

  But tomorrow we can contemplate quality of life; today we have a pain to manage.

  ‘I heard that your tummy is sore,’ I begin, and Mrs Liang opens her eyes warily. ‘I’d like to make it better if I can. Please will you hold my hand while I feel your tummy, and just squeeze if you need me to stop? I don’t want to hurt you…’ She holds my right wrist as I palpate her abdomen, as gently as I can, with my fingers. She allows me to continue, aware of where I will touch her because her hand is moving with mine. She is so thin, I can feel her organs with ease, and the utterly constipated intestine that explains her tummy pain.

  Maria reappears through the curtains to announce that Mrs Liang has been allocated a bed on a care of the elderly ward. This is excellent news; her multiple challenging conditions will be viewed together and a plan of action made. The bed will be available in an hour. Monique and I suggest a management plan for resting her bowel and softening her faeces to stop her terrible cramping pains; after a day or two of rested bowel and softening agents, the nurses on her new ward will be able to help her move her bowels far more comfortably. Her stiff, trembling muscles may yet respond to a review of her Parkinson’s medications. Perhaps she will go home slightly better than she arrived here; it’s a game of diminishing returns, and any small improvement may make a big difference.

  I follow Mrs Liang’s progress on the COTE ward via Monique, who visits her daily to assess the impact of the bowel management plan. She is being nursed on a special mattress to protect her skin; her constipation is resolving; her pain is under control. Her drugs have been considerably reduced, and some tablets have been replaced by skin patches so there are fewer to swallow. Her tremor is less, although her facial expression remains fairly blank. Plans are being made to get her back to her nursing home, but she continues to have a pain in her right foot that is causing concern, and Monique has asked for my opinion about it.

  When I arrive it is just after lunchtime. The patients’ meals are being cleared away, and Mrs Liang is sitting in a reclining chair, resting on her back (a prize of better pain control) and tilted backwards so she can face towards the window instead of the floor. There is a radio playing classical music on her table, and I ask her permission to turn it off briefly so we can talk.

  ‘I wish someone would throw it out of the window!’ she replies, unexpectedly loudly, reaching her trembling arm towards it. ‘Noisy damn thing. They leave it on all day, and it drives me mad!’ I have often noticed the tendency to have background music in hospital and care homes, and wondered who makes the choices.

  ‘Do you prefer peace and quiet? Or are you a talk radio listener?’ I ask her, and she tells me she loves BBC Radio 4, which ‘treats me like I have a brain’. I assure her that after our talk I will retune the radio for her. With a slow blink, she tells me that Monique retunes it each time she visits, but the other women in the six-bedded bay complain that the talking interferes with their enjoyment of their music. ‘Many of these women are hard of hearing,’ she says, ‘or unable to manage those earphones, so all are compelled to listen, at high volume, to the choice of one individual. Dante would have mentioned this punis
hment had radio been invented when he was describing the Inferno.’

  Looking around the room, I take in five other elderly women. All are clad in clean but garish hospital gowns. Their fitter fellow patients are helped to dress in daywear, but this room houses the most frail members of the ward. Some are sleeping gently. One holds up a hand towards me as though she hopes I might rescue her. Another is carefully holding a plastic, spout-mouthed cup with focused attention. A contemporary Inferno might also have described this scenario: the vicissitudes of extreme age, of a clear mind being tied to an existence that crumbles in staccato steps yet continues to be experienced; or life no longer experienced in abundance by those with inexorable cognitive decline but cruelly robust physiques. This room could be a very clean and tidy Circle of Hell, and it would be easy to suppose that these women would greet death as a welcome guest.

  And yet, what can seem intolerable to the observer is often counted as life worth living by the elderly. Mrs Liang did not suddenly wake up old one day; she arrived here via a long and gradual journey of stepwise dwindling, occasional partial recoveries, intermittent thrusts of illness and parries of treatment. She and I observe her situation from entirely different vantage points, and it is her interpretation that counts. As I spend more time with elderly people, I am learning not to make assumptions.

  I sit down beside her to discuss how things are progressing. She is delighted that her tummy pain is settled and her constipation resolved. The stronger painkillers allow her to lie on her back, in a position that makes it easier to see the world despite the continued crumbling of her spine. She has had her hair washed, combed and cut by the hospital hairdresser, and the rehabilitation team has provided large-grip utensils that enable her to feed herself, although her Parkinson’s disease makes her so slow that she needs help, and she has agreed to have a feeding tube placed to help her to maintain nutrition with far less effort. Better nutrition will protect her skin, and her drugs can be squirted down the tube instead of all that effortful swallowing. She will be able to eat and drink small amounts as she wishes, simply for the pleasure of it. This sounds appealing to her.

  ‘I have lived too long,’ she tells me, without emotion, in an echo of the words spoken by her carer on the day of her admission. ‘If I could, I would give some of my years to younger people, people with families, people who need to live longer but can’t.’ If only length of life were as simple as a transferable asset. This is an economics assessment of the predicament in which she finds herself.

  ‘Do you wish to be dead?’ I ask her, and she pauses to think before telling me that she does not wish deliberately to end her life, but regrets that she has lived past being useful and mobile. I nod, and reflect that she is naming a key difficulty of older age.

  I am about to turn to the subject of the pain in her foot when I suddenly become aware of a sense of heat. I am burning, radiating warmth and feeling the disconcerting, panic-like disquiet that accompanies menopausal flushing. I know that my face will be blushing, and I can feel my body perspiring.

  Mrs Liang indicates what looks like a spectacles case on her tabletop, and asks me to open it. Inside is a battery-operated hand-held fan. She squeezes the handle to start it, and points it at my face, saying, ‘Don’t worry, dear. They pass very quickly, but aren’t they a nuisance?’ She waits for the flush to pass, watching my face intently as she fans me. I am overcome by this act of kindness, this simple acknowledgement of our biological sisterhood.

  ‘I used to find them such a problem,’ she tells me, ‘because all the other people in my university department were men. Nobody understood. There, do you feel better?’ I nod gratefully, and she squeezes the handle to turn off the fan.

  ‘One gets used to them eventually,’ she says. ‘And yes, it’s lovely when they stop! I don’t miss them.’ She tells me that her flushes stopped in her mid-eighties–I hope my face does not betray the horror of my inner calculations. This is when I sense that something interesting has happened: our relationship has shifted. Now, an older woman is mentoring a younger one. Mrs Liang’s aged body still contains an agile mind that wants to keep abreast of current affairs; that has developed an economics-based philosophy of time passing; that has wisdom to impart and kindness to dispense, and yet very little opportunity to do so. In her simple act of compassion, she has been momentarily whole again.

  The foot pain is easy. She tells me it feels like cramp, and when I examine it I see the sharp edge of a strap-like muscle pulling across the arch of her foot. She is quite correct; this cramp is a recognised feature of Parkinson’s disease, and can probably be managed using a Botox injection to paralyse the muscle for a few weeks or months, repeated as needed. No need for extra painkillers, no sudden cramps to disturb her peace of mind or her sleep.

  She tells me what wavelength Radio 4 is on and I retune her radio, propping it beside her ear on her pillow so she can hear but the other patients will not. We chuckle like co-conspirators. I stand to leave. The women around us look somehow different; I feel an awareness of our similarities, rather than of the differences imposed by age and ill-health. Our elderly are so easily dispossessed, stripped of their personhood by eyes like mine too young to value their accumulated wisdom, experience and patience. I have learned an important lesson from this very frail and aged woman.

  ‘Goodbye, my dear,’ she murmurs in valediction.

  ‘Goodbye, and thanks, Prof,’ I reply.

  She gives that doll-like blink, and her eyes crinkle at the corners. We have done each other good.

  The quality of an individual’s life can really only be measured by that person. It is very easy to assume that living with illness becomes a burden, yet the elderly often accept their physical limitations as a price worth paying for living longer. Loneliness, many tell us, is a far harder burden than ill-health, and this is a sadness hidden in plain sight, a modern epidemic.

  The price of living longer is that we experience older age, with or without cognitive decline. In 2015, for the first time ever, dementia became the commonest cause of death in England, although this reflects better data-collection as well as the increasing incidence of dementia. The rise of dementia is a moral and social challenge for the developed world, where families are scattered and the elderly are less likely to live with relatives.

  How we deal with the most vulnerable members of our society is a true test of our values. Having accepted their contribution to the public good during their working lives, how should we support these weary elders? How do we enable them to experience satisfaction and self-worth, not in return for making a contribution, but simply for being their unique selves?

  Perfect Day

  Words are immensely powerful. When we talk, we assume that our listener interprets our words in the same way that we intended them, yet this may not always be the case. Misunderstanding based on different interpretations is even more likely when cultural differences are at play. It may not be our words, but their unintended meaning, that is heard. This may cause hurt and confusion, but it may also open up new possibilities that we had not anticipated–especially if we had felt lost for words, and thereby communicated our own vulnerability and common humanity to our listener.

  It’s a windy day, and wrinkled, nut-brown leaves are scuttling across the car park like a mischief of excited mice as I rush into the hospice at lunchtime. I have too many bags, as usual–my briefcase, a backpack and a large shopping bag containing last night’s paperwork. My children think that my secretary marks my homework.

  Crashing clumsily into the clerical office I can see pewter-grey clouds scudding along the sky over the river valley that drops below us–there will be autumn rain before the end of the day. Did the children take coats to school? I can’t remember. I present a tape of dictated letters and a list of appointments and phone calls for my much-appreciated secretary to work through, explain the contents of the shopping bag, and run downstairs, where the team is assembling to discuss our patients before we begin our ward
round.

  So here we are: our ward sister, a social worker, a chaplain, a physiotherapist, a doctor spending six months with us as part of his GP training, a doctor who is training in palliative medicine and is nearly ready to apply for her first consultant job, and me. Our occupational therapist will join us when she can. She is baking cakes with a patient who cannot remember what she did yesterday, but who remembers baking with her mother many years ago. This kind of memory work often unlocks important new information in understanding our patients better. And it provides cake.

  The meeting begins. One of my ward-round habits is that we have a cup of tea or coffee together while we talk through the important issues for our patients. Then, once we have discussed the main areas to be tackled during the ward round, we process around the hospice, visiting each patient in turn. For some, the focus may be a physical symptom or progress towards plans for home; for others it may be the effects of a recent change of medication, or the impact of work done in physiotherapy or occupational therapy sessions; for others again we may be discussing emotional distress or existential issues. Occasionally there is a new patient for me to meet, in which case the full story-so-far will be presented by one of the junior doctors, and we will consider the whole list of issues to be addressed for the patient and their family.

  Today’s meeting will discuss five current patients whom I know well, two more whom I have known from my work in the hospital palliative care liaison team and who have transferred to the hospice for attention to particular symptoms, and one new patient.