What patients want: care that is humane as well as advanced
In my long health care journey, I had outstanding care from knowledgeable clinicians with experience and skill. But I wanted to be treated like a person, not an array of symptoms, a problem to be solved, a case number on a chart.
It was a surreal moment. I was listening to my doctor explain that the Gamma Knife was no longer an option for my stubborn, dangerously located, and growing pituitary adenoma. That option, which we had talked about for more than four years, was not viable because the tumour had expanded so much that it was now located too close to cranial nerves, wrapped around my carotid artery, which would make the procedure dangerous. Instead, I was to have weeks of fractionated radiation (another term to research and literally wrap my head around). Before I could even ask what that meant, he said we would need to start immediately.
I was surprised to discover that “immediately” didn’t mean tomorrow. It meant 15 days later. And not because of availability or higher priority patients, but because it would take the radiologist and his team that amount of time to determine the appropriate course of treatment: dosage, location, patterning.
That was three years ago. Today, that hospital has an advanced computer that determines the correct radiation therapy with the same data input — but it takes 15 minutes instead of 15 days.
That’s the power, and the thrill, of astounding scientific advances in health care — and all the extraordinary progress it can, and will, make. The frontiers are being advanced at a dazzling pace. Now surgeries can be less invasive, diagnosis can be remote, new drugs can impact results, robots can perform operations, treatment plans can be personalized, health apps can share information with a swipe.
The delivery of medicine and health care are definitely in the midst of a technological revolution. I’m not a scientist. I am a former hospital executive, a grateful patient with an inoperable benign tumour and a chronic condition, an advocate, and a storyteller. In my journey, I saw and experienced many examples of how all these sophisticated tools to ease workflow, ensure patient safety, expedite treatment, and obtain better outcomes — successful as they are — often made clinicians feel robotic and dehumanized, distant, using technology as a shield, not a bridge.
Because although technological advances can empower, they can also overpower. That’s a real risk to compassionate patient care and a real factor in physician burnout.
I was struck by this recently when I was invited to give the keynote address — The Patient is a Person — at the Canadian Medical Association Health Summit in Winnipeg. It was an honour, especially as I was probably the only speaker without initials after my name. I was admittedly quite nervous, sharing the stage with and talking to people of great achievement.
However, I consider that the CMA is not actually about doctors. It’s about doctors and patients. So my voice would be about experience, not accomplishment. And I’d tell my story to the group, just as patients tell their stories to their clinicians.
With jitters in my stomach and a sheaf of notes in hand, I watched the beautiful video produced to introduce the conference themes, and me. The conference focus was the dazzling future that technology would bring to medicine, so powerful words appeared onscreen: innovation, problem solving, exploration, artificial intelligence, hi-tech, investigation, solution, cure.
Then it was my turn to speak. I noted in my opening comments that although considerable time and effort created the handsome production, I was disappointed (but not actually surprised) that the video did not include a single word about patients: compassion, person, care, empathy. It was the perfect segue to the core of my message: that despite transformational technology, patients crave the humanity that comes from an empathetic caregiver.
Clinicians and professionals must bring knowledge, technical skill, and compassion to their patients. Because without compassion, there is no care in health care.
Our world is increasingly evidence-based and focused on the latest technology. Our system is overloaded and fragmented, obsessed with progress, process, data, and measurement. The value of relationships and communications has been diminished. Access from person to person can seem impossible. Clinicians can be MDeities, dismissive impatient explainaholics, who don’t actively listen and are absorbed in technology rather than engagement.
And that’s why concentrating on the person in the centre has never been more important. Because patients crave care that is humane as well as advanced.
In my long health care journey, I had outstanding care from knowledgeable clinicians with experience and skill. But I wanted to be treated like a person, not an array of symptoms, a problem to be solved, a case number on a chart. To be treated like a person with a disease, not labeled only by the disease. I often felt I was on a conveyor belt of excellent, pressured, and busy specialists. The system feels as if it has been developed around process, not people, and geared to getting patients in and out as fast as possible. Access to treatment was possible; access to humane care too often was not.
“Patient-centred” is a mantra in every clinical practice, in every health care organizational strategic plan, a plaque on countless hospital walls. Hearteningly, glacial progress is being made, but the rhetoric still does not match the reality. Top
Getting to that reality relies on very basic steps. It starts by remembering what our parents taught us: treat others as you would have them treat you. Attend to all the small gestures that actually create our relationships and experience. Acknowledge the individual inside that blue hospital gown. Make every human interaction count, pay real attention, and offer genuine clinical empathy. Encourage and answer questions. Recognize that curing and healing are not the same thing, but that true caring will sustain the journey. Be kind, build trust, provide access, create bonds.
It also means moving away from high-tech, low-touch practice, which is so completely dispiriting and distancing. Eighty per cent of care is personal. I remember a talented doctor, who was so absorbed in my MRI image on the computer screen that he never even acknowledged or glanced at me until I asked if he might want to take a look at me, the “packaging.”
We all crave care that is humane as well as advanced. And connection is important in both directions: for patients to feel there’s a human not just a machine looking after them. And for doctors to be more engaged and fulfilled, less detached from the very reason they went into medicine: helping people. This will restore that sense of purpose and passion for demanding, complex work in a relentless, challenging environment.
The massive power of technology is literally transforming every element of our world. What this advance will be able to achieve in the future is breathtaking and unimaginable. I also believe it needs to be harnessed with compassion. As Kai-Fu Lee1 wrote, technology is “here to liberate us from routine jobs, and it is here to remind us what it is that makes us human.”
No matter how extraordinary our tools, thrilling our knowledge, and dazzling our progress, the human relationship is the very heart of healing. The secret of care of the patient is caring for the patient.
1.Lee KF. How AI can save our humanity. New York: TED Conferences; 2018. Available: https://tinyurl.com/y75q65rf
Judith John’s career spans all aspects of communications, marketing, and public affairs. In the health care sector, she has served as vice-president communications and public affairs at the Hospital for Sick Children and as vice-president communications and marketing at Mount Sinai Hospital and Foundation. She is currently a patient advisor for the University Health Network’s Partners in Care program. Top
This article has been peer reviewed.