Over the coming weeks we will post segments of our paper for our readers. This series aimes to provide a deeper understanding of Patient Commando’s position as a provider of patient story, narrative and experience.
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I am not a number, I am a free man!” Patrick McGoohan — as “The Prisoner” 1967
A secret agent is kidnapped to a mysterious, isolated village. Referred to as “Number 6”, he is subjected to psychological warfare to extract information from him and turn him into a compliant, docile, informant. His struggle against the many fantastic attempts to brainwash him is a gripping parallel to patients in an ever increasingly complex health care system.
To many patients, hospitals are like mysterious, isolated villages, with a foreign culture detached from their own experiences. From insurance numbers, to “take a number,” to room numbers, bed numbers, chart numbers, file numbers, blood numbers and test numbers, our health care system seems more like a math quiz than a place of caring for a suffering human being.
It seems that we hear daily about another doomsday prediction that “the system is unsustainable.” A host of think tanks and pundits repeatedly tell us that the economic pressures just cannot accommodate the present model of delivery of care. As the authors of this paper point out, the direct cost of providing care for those with chronic illness is $160 billion. A tidy sum no doubt.
Buried under the mountains of paper documenting all of these numbers is a creeping recognition that the system isn’t just about numbers, dollars and cents, or economic models. This recognition is starting to come from doctors, nurses, social workers, frontline workers, hospital administrators, politicians, universities, medical schools and patients. It is a growing recognition that this $160 billion is not an expense squandered on new technologies, massive concrete infrastructures, wonder drugs, overpaid or underpaid clinicians and inglorious bureaucracies at every stage of service delivery. It is instead recognition that this $160 billion is an investment in humanity that needs to extract a return not from the technological equipment and caring workforce that delivers the care, but from the human equipment that is receiving the service.
No one is alone in their illness battle. Families share a patient’s terrifying fear, pain and loss of body functions we all take for granted. Families struggle with fear for their loved ones’ well-being, worry over their care and hope for recovery.
Often this distress is shared under a cone of silence. Patients and caregivers enter a period of stress affecting relationships and communication. Many face cultural, educational, language and even gender barriers that negatively impact a patient’s vital understanding of, and participation in their health care experience.
Paradoxically, many who are so affected by the silence are among the first to turn to strangers to share their experience, whether in a waiting room or treatment room or support group. It feels safe talking to strangers who share the same experience, feel the same pain or understand the source of a pain you experience. You can be anonymous and give and take comfort from others who are nonjudgemental, who can provide unencumbered sanctuary and relief for a few precious moments. This group hug can last seconds, or longer, and be shared by a simple nod of acknowledgement or the patience to listen to another’s entire life story because that is what that person needs.
Sharing the experience has the ability to profoundly affect an entire nation. Thirty years ago, a one-legged 22 year old from B.C. took the Canadian public on a cross-country journey. He raised the Canadian consciousness about cancer single-leggedly. As Canadians learned more about the journey of that patient, Canadians shared their love and concern for a young man who had the courage to share his dreams, his hopes, and determination. Described as “a very ordinary young man” by his mother, he demonstrated that one person’s voice is powerful enough to change the world.
In the years that have transpired since Terry Fox’s remarkable journey, we have witnessed a health care system undergoing transformation. We know it’s under strain. Yet we as patients know and understand that the people who make this system work, who care for us every day, are dedicated and committed to one objective – getting us better.
Part of this transformation is driven by an understanding that starts at the very top, that the patient voice can inform practice change. The system is learning to recognize the patient as the centre of the delivery of service. If you listen to the CEO’s and executives at the highest levels of care you’ll hear many of them saying the same thing: The patient experience will drive change.
Meanwhile, patients are saying they’re prepared to play a bigger role in their health care. Greater patient engagement is leading to increased adherence to treatment plans. Increasingly patients are ready to take a more active role and a chief motivator has been the encouragement and experience of other patients. From these voices, we will all benefit.
We are witnessing a transformation in patient behaviour. Many chronic patients, similar to “The Prisoner”, are expressing their individualism. At one time patients were “brainwashed” to behave in a certain way, the same way children are expected to behave in some cultures – seen but not heard. That is no longer the situation. Patients are becoming more educated and informed about their conditions. Some are becoming activists and advocates. Some have abandoned the mainstream and sought out alternative and complementary treatment. At its core, this trend of enlightened patients + the recognition from health care system + the focus on patient-centred care = more engaged patients and better outcomes for everyone.
The authors of this paper are two young women with Master of Public Health degrees who I met serendipitously in a stairwell in the shared office environment where we work. Both are starting their professional careers while I am 30 years into my unplanned career as a patient with a chronic illness. I was inspired that their unrestrained enthusiasm for health care could create a document that would explain how a patient initiative focused on patient storytelling can be employed to benefit humanity. As agents of change, they tackled a difficult project and have delivered a well documented report.
This work clearly illustrates and highlights that the patient experience is the intersection of medicine and humanity. Patients who share their experience on stage, on video, through poetry, song, or prose, are inspiring a new level of discourse about the meaning of illness in our society. The stigmatization of people with illness is being overcome by patient leadership and the participation of other stakeholders in the health care system.
Being able to tell our stories makes us feel good. The very act of telling our story is an act of conscious liberation that reminds us that we are not numbers.
Zal Press Executive Director Patient Commando Productions
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