I wish I had an answer for my dead patient’s husband…
What you are bout to read is not exclusive to the United Kingdom. These are world-wide issues in the world of “care.” ~ Ed
I am inside intensive care, looking surreptitiously through a glass window and preparing myself. I see a patient crowded by tubes, machines and stricken relatives. The figures in front of me tell an unmistakable tale of disaster. Everyone knows the patient is dying; apparently, they’ve been waiting for oncology to give the word to pull out.
“It’s not good,” the intensive care physician says. “We’re thinking she’s had enough. But we waited for you as it’s a chemotherapy-induced complication – the family needs to hear you say it’s time.”
The patient is a working woman with a husband and children. I burn under the gaze of many eyes trained on me, asking what someone will eventually blurt out privately: “How can you give chemo to dying people?”
I tread softly inside. The patient is drifting into unconsciousness. She denies pain and I’m glad.
Her family ask if it’s true she is dying. Feeling ruthless, I say yes. Adding that even if she survives, there is little hope of recovery. I ask them about their expectations. They tell me that she never really felt well after diagnosis. Nonetheless, last week they were having dinner together, knowing that her prognosis wasn’t good but not so grave either.
“I am very sorry that she became so sick with treatment. Our intention was to make her better.”
They look at me with bleary eyes, too spent to challenge my bleak assertion. Finally, her husband says: “Our heads are spinning, but we have to let her go.” The four daughters agree.
The family flocks in. Goodbyes are murmured. The machines are silenced. She dies. Like everyone else, I am inexplicably moved by the family’s grace, pragmatism and acceptance. Not every family lets go like this.
The family says everyone tried but at such times, doctors can be seized by an indescribable urge to make things better.
“I can’t change the past”, I say, “but I promise to look into what we could have done better.”
They have no expectation of me but we all hunger for answers.
For several weeks, I pore over her file and talk to the people involved whenever I can find them.
The diagnosis took too long to establish but the sequence of investigations was reasonable as was the choice of chemotherapy. Then the trouble started. The patient became ill shortly after the first treatment with a constellation of symptoms. In the short interval of weeks between her first emergency presentation and death, she attended hospital many times and saw at least a dozen professionals. She received transfusions, antibiotics, fluids and x-rays. She saw interns, fellows and specialists and an array of nurses. She called an after-hours service, sought online advice and went back to emergency. She described weight loss and a weakness so profound that she couldn’t get out of the car. She felt overwhelmed and despondent but believing it to be a passing phase, coaxed herself to have a second round of treatment.
One immediately questions how a patient could receive chemotherapy in the face of these abysmal signs. The throwaway response is that oncologists can prescribe chemotherapy to the grave, but actually, it wasn’t so simple.
Every doctor she saw in those few weeks managed the problem at the time. Fluids to prop up the blood pressure, antibiotics for an infection and oxygen for shortness of breath. In a time-poor system that rewards throughput over diligence, every doctor trusted someone else to put the pieces together. Nurses relied on doctors for reassurance. The ambulance took her to different hospitals. People worried but didn’t worry enough – and I say this remembering all the times I have discharged patients on the wings of a prayer because the system is all uphill.
No one alerted the oncologist, expecting the patient to do it. In fairness, most patients do make it to their first follow-up appointment to discuss toxicities but some don’t. The patient thought that feeling awful was the cost of getting better. If there was doubt, there was no nominated nurse coordinator to ask. The ultimate irony is that the only place she started to receive coordination and full explanations turned out to be in intensive care – an intervention far too late and far too costly, for the patient, her bereaved family and broader society.
What was the cause of this patient’s death? The death certificate says cancer. But I can’t help thinking that a more proximal explanation was the fragmented medicine that unintentionally allowed her to deteriorate. To be a patient facing a life-threatening illness is bad enough but for illness to be compounded by insurmountable logistics is doubly punishing.
Despite an outstanding record in many areas (but sadly not Indigenous health), a 2015 OECD report described the Australian healthcare system as fragmented and too complex for patients to navigate, amplified by a split in funding and responsibilities between the federal and state governments. This problem is getting worse in an ageing population groaning under the burden of multiple chronic diseases. What modern patients need is management of the whole person rather than a small part of the body.
Unfortunately, these patient experiences are more common than we’d like. Reflecting on what we could do better, I think of three things.
One, patients with a serious illness need a care coordinator as a single point of contact. The coordinator should have the expertise and authority to harness assistance, whether from a doctor, nurse or allied health. We can afford this, it just requires a shift of focus.
Two, medicine must examine its emphasis on niche specialisation over sound generalists such as GPs, geriatricians and internal medicine physicians. I was intrigued the first time I was introduced to “an ankle guy”, but now it’s common to meet robotic surgeons, retina specialists and thyroid oncologists. Yes, some patients need doctors who can do one thing exceptionally well but we all need doctors who can do many things ably and can access experts easily.
Finally, administrators must be aware of the very human cost of a system where doctors don’t communicate and which patients can’t navigate. Responsibility cannot simply be attributed to clinicians who are doing their best amid strained infrastructure and a bloated bureaucracy. Managing the healthcare of an ageing nation will require an unbiased look at why we get some things so wrong.
After much soul-searching, I call the patient’s husband. I wish I had an answer but, of course, I don’t. I glumly say that all I learned was that we should have recognised the warning signs and communicated better.
I expect his regret to surface but he is impossibly gracious.
“You did what you could, the rest is destiny, isn’t it?”
I am not convinced it was destiny. Perhaps he is naturally forgiving or perhaps he just doesn’t want to think about what could have been. But thinking about it won’t bring her back, so I say a polite goodbye. I hope I never have to see another case like this but I know it’s only a matter of time.
Written by Ranjana Srivastava for The Guardian ~ May 21, 2019
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