I watched an aged couple today as they made love.
She is in her late eighties, he’s a little older. Thirteen years ago, Sylvia (not her name)
became vague and forgetful. Bruno (not her husband’s name) passed the farm on to
the children so he could care for Sylvia at home. For ten years this worked well, but as
Sylvia became less active she gained weight and as Bruno aged he lost muscular
strength, the strength that built the farm that sustained a family. Three years ago, Sylvia was admitted to the nearby nursing home. Bruno visits Sylvia every day.
Until today Sylvia had remained the most placid, easy-going resident in the home. When she was found this morning, burning with a high fever, pale and limp, helpless even to sit, breathing fast, her heart racing, her blood oxygen levels low, she remained that same tranquil, agreeable person.
“She’s severely demented”, said the nurse, “It’ll be cruel if we overtreat her. Let’s just
keep her comfortable.” This is code for, let her die.’
When I met Sylvia at 0630 she gazed at me, eyes wide. Was this recognition? The opposite? What, who, remained behind that enquiring gaze?
‘Hello, Sylvia, I am the new doctor.’
Sylvia, her face pale, yellowed, smiled. I thought of my mother, another placid smiler.
Sylvia spoke, a voice soft, barely reaching my hard ears.
I leaned over her and listened as she spoke again: “You’re the doctor.”
Attending at her bedside in the early morning, clad in my running shorts, vivid cap and colourful singlet, I don’t look like anyone’s idea of a doctor – or a runner. But Sylvia knew.
These were not the words of one ‘severely demented.’
I called Bruno, made the call that relatives know will one day come, the call they dread: ‘Bruno, I’m the doctor caring for Sylvia. She has a fever. I thought you should know… She’s not in danger, but we need to decide what treatment will be best for her and I’d like you to come in and give me your advice.’ A lot of words, too many words. Words to paper over insecurity, uncertainty.
Bruno thanked me for calling. He asked, ‘When would you like me to come, Doctor?’
‘Any time that suits you, Bruno.’
‘No Doctor, you’re a busy man. My time is my own. When will it suit you best?’
We agreed to meet at nine-thirty.
I studied Sylvia’s file. There was a reason for her long stare – she has glaucoma. And diabetes which will make her vulnerable to infection.
I read the family’s biographical notes: ‘Sylvia is a gentle, happy, quiet and kind person; compliant; she has sons, husband, extended family, friends who visit her often; she likes fruit, enjoys stories on television; she understands, even though she answers with only a few words. Please speak to her slowly.’
Elsewhere I read a relative’s observation: ‘I believe Sylvia does not have the ability to consent to or decline treatment.’
Once again I thought of Mum, a patient who’d always agree with a doctor, always wish to defer, to oblige.
I found Sylvia’s End of Life Directives: ‘Keep her clean and dry and as free of pain as possible. Please do not provide therapy that is futile. In the event of acute deterioration or critical event, she may have IV fluids, IV antibiotics, CPR, defibrillation not more than twice, a short course of ventilation.’
I tried to decode the directives: the family allows resuscitation, ventilation and defibrillation – more or less Intensive Care – while excluding futile treatments. But you never know whether intensive treatments might be futile. You do know CPR must be vigorous to succeed. In the words of an Emergency Medicine Physician of my aquaintance, ‘If you don’t break any ribs you won’t save them.’ And short ventilation slides easily into prolonged. Dying is prolonged and deformed; and any living that remains is disfigured.
This constitutionally gentle soul, comfortable in her frailty, undistressed even in her febrile state, would she welcome such rough treatment? What roughness, which bodily incursions, can the family tolerate?
I needed Bruno to help me untangle this nest of contradiction.
At nine-thirty, I found Bruno seated by Sylvia, holding her hand. On her bedside table, a pear, freshly peeled and sliced, waited Sylvia’s pleasure. I introduced myself. Once again I told Sylvia I was the doctor. She looked at me, then over to Bruno. He nodded and her wide face relaxed and fell into a smile. Since my earlier visit her temperature had fallen and her breathing improved.
I listened to the front of Sylvia’s chest. I wanted to examine further, to hear the breath sounds at the lung bases. Sylvia, aged, weak and ill, would need help to sit up. Ordinarily I’d ask a nurse to support her but Bruno was here. Sylvia would know, her body would remember the touch of Bruno’s hands.
‘Bruno, when I sit your wife up, will you hold her shoulders for me?’
I hauled Sylvia’s upper body upright and Bruno leaned forward and placed one hand on each shoulder and steadied her. My stethoscoped ears listened intently to the breath sounds. Faint crackling betrayed the pneumonia I suspected.
Pneumonia, the old person’s friend. Will antibiotics save Sylvia? ‘Bruno, this is pneumonia. It’s a dangerous illness. Do you want us to use antibiotics? We’d give them through a vein…’
But Bruno, raised in a time and a school where the doctor gave orders, replied: ‘You’re the doctor. Whatever you decide will be for the best.’
Deep in cogitation, I applied the stethoscope again. Eventually I looked up. Two large brown hands, the joints wrecked by time and work on the farm, supported Sylvia’s creamy shoulders. Bent forward, held by her man, Sylvia gazed into Bruno’s eyes. I noticed her right hand. Sylvia moved it back and forth along the inside of Bruno’s forearm. Up to the elbow, back down to the wrist, up, down, Sylvia’s fingers stroked Bruno’s skin.
The fingers caressing, moving upon the silence.
Two people, oblivious of this interloper, oblivious of all, man and woman made love and confounded me: where I had wondered how much treatment would be too much, now I sensed how much the two still gave and received from each other, how precious to each was time with the other.
How much treatment will be enough?
Speechless this is beyond beautiful
The faculty of love in Faye. Is beyond beautiful
Lovely story. We ask impossible decisions of our doctors. There is a generational divide, though. Our parents wanted the doctor to decide and relieve them of responsibility. We want to have control over what happens to us and must therefore learn to carry the weight of decision ourselves. I am sitting on a pack of papers which I keep not getting around to which will direct my relatives about what NOT to do. I will try and be clear, so no one has to make uncomfortable decisions. It’s just the size of the pack I find off-putting…
I think it most judicious on your part , h chorionic gonadotropin, to delay completing those forms
I wrote my will a few years ago and so far it’s hS been a waste of effort and time
No need for those instructions until you or your brain is dying
No sign of either of those…
These observations took place precisely as I read atul gawande on ‘being mortal’, a book of astonishing common sense that has impelled me to think to plan to confer and to act in preparation for the period between my becoming helpless and becoming dead
If I knew when that would happen precisely I’d borrow and spend and gift a lot of money…
Atul gawande – see 2014 Reuther lectures
His book changes lives – mine for one