The Road to Harm is Paved with Good Intentions – The Patient Experience Matters
We want to be clear that we support the conversations, opinions, lessons learned and the message of hope that have been part of the conversations on the “balcony of personal reflection.” However, to move forward we must face some hard facts and truths.
Universal healthcare was introduced with the best intentions and has brought huge benefits – extending healthcare to millions. However, Canadian healthcare is failing to live up to its promise and potential. The majority do not see this; they are fortunate enough to avoid much contact with the system or have straightforward complaints dealt with appropriately – the “easy” part of healthcare. The measure of an excellent system, though, is how well it copes with more complex and chronic conditions, and excellence is something we should expect when we have one of the world’s most expensive systems.
It is also evident from any extensive exposure to the healthcare system that many healthcare professionals labour with great dedication against an overloaded system, sometimes having to overcome overwhelming resource obstacles.
The comments I (Peter) make are influenced by spending hundreds of hours in consultations, emergency rooms (ERs) and hospitals: following thyroid surgery, my wife Chris was medicated for hypothyroidism for 10 years; after developing diabetes and diabetic neuropathy, she was found to be hyperthyroid (causing or exacerbating the diabetes). Three years later, she developed early symptoms of a Charcot foot, was repeatedly given antibiotics but was repeatedly refused X-rays that would have avoided the partial disablement that followed. Eleven years later, she rapidly became confused and began to hallucinate, symptoms that were mistaken for Alzheimer’s or a mini-stroke but turned out to be a UTI – a condition four times more likely at her age. After her discharge from the hospital and finishing antibiotic treatment, her condition deteriorated with symptoms of sepsis – a common complication of UTI that went uninvestigated and was her probable cause of death, 2½ weeks after being readmitted to hospital.
This is not intended as condemnation of the entire system. Chris also received some excellent healthcare – unfortunately, in her case, it was too often too late to prevent serious harm. Nor is it a plea for perfection; even the most able in any sphere will make oversights and mistakes. However, many of the failings are avoidable in more instances than can be attributed simply to “bad luck” or individual human frailty – “the road to hell” for too many.
The Ghost of Healthcare Consciousness appears and offers the following:
“Unfortunately, in addition to quantity care delivered there is a quality and patient safety gap – a gap between promise and potential; the majority of Canadians do not see its ‘worst side’; and the measure of an excellent system is how well it copes with more complex and chronic conditions. Too often politicians, administrators or care providers make observations such as: ‘everyone is facing the same challenges’; ‘it’s no worse than in the UK’; ‘we have better healthcare than in the US’ (hardly a good comparison since the US has the most expensive and worst system – in terms of overall performance – in the western world). Complacency and benchmarking against the mediocre or worst never leads to excellence. In the private sector it results in getting fired or going bankrupt!”
Observations about patient safety problems encountered and observed are crucial as they are constructive platforms for new conversations to test assumptions held: one cannot hope to arrive at solutions until one properly defines the problems – and understands how to address them. We are not convinced that this has been the constant rigour within the Canadian healthcare system – hence, our relatively poor performance. One only has to look at the mountains of research and reports that demonstrate significant variance between institutions, between provinces, between wards and between units.
There is no bitterness intended in this essay. Chris was not “cut down in her prime”; she lived a full and happy life (even after health setbacks). What was lived by her experience of healthcare was the gap between the theory and practice of patient empowerment. When you enter a doctor’s office or hospital there is a profound shift in power. You give up your body and power to a team of professionals, a team of strangers. This experience is quite different than any other service sector where you have the power to walk away and never return. In a healthcare environment, you don’t get to vote with your wallet. And yet if we think about it … from a patient perspective, this is my healthcare system, I am a shareholder, I pay for it through my taxes and am entitled to safe and reliable care. More than just “fixing” the immediate “complaint,” patient empowerment also involves taking the initiative to advise patients how to best manage their condition(s) and the risks and symptoms they may encounter from complications. Chris was diligent in following medication instructions, caring for her diabetes and feet after being diagnosed with diabetic neuropathy but was left ignorant of the risk and appropriate response to developing a Charcot foot; just as she hadn’t been told of the need for, and possible consequences of not, having six-monthly blood tests following thyroid surgery; nor advised of the risk and symptoms of sepsis following UTI. It is not enough to admonish patients to “ask the right questions”; many know too little to know what to ask. There is nothing new in what was experienced – it was the reality of being a patient in a system that struggles to get things right. Perfection is unattainable, but we will never approach perfection unless we commit to striving for nothing less.
We have a healthcare system that is admirable in its goal (universal care). We have healthcare professionals who are dedicated and caring, often going “well beyond the call of duty” and a system that is continually evolving to keep up with changing conditions and demands. It is not perfect. No matter how advanced the field of medicine becomes, one constant will always remain and that is: medical attention and care services will be provided by people. The importance of this was captured in a sentinel report, Crossing the Quality Chasm: “The science and technologies involved in healthcare – the knowledge, skills, care interventions, devices and drugs – have advanced more rapidly than our ability to deliver them safely, effectively and efficiently.” It is the effectiveness of the interaction between care providers and patients that determines the efficiency and safety of the system. What does great customer service look like? The answer boils down to three concepts: attention to care, communications and trust. When one of these elements is missing, patient safety and quality breaks down.
Creating a new patient safety future will require visionary leadership, competent and patient safety focused management and governance, a fully engaged workforce and a new conversation with the patient – the customer. It will also require a sound cultural and accountability strategy.
Three recommendations for your consideration:
- Policy aligned with current reality, e.g., treatment practices, technological and drug progress and utilization, and productivity – including fee and payment schedules aligned with the changing and evolving role and scope of practice changes.
- Transparency and public reporting,as “a way of life,”including training/education in how to initiate, receive and answer patient and family questions. Far too many healthcare organizations view patient experience as (just) making and keeping patients happy. This misses the point – patient experience is also about a hospital’s philosophy for the delivery of care.
- Reality connection –being in touch with what is really happening every day, every minute at the “front lines” of care delivery.
We close with a passage from the essay, “Fragmentation vs. Collaboration”: “… How can we as leaders create a culture that encourages cohesive future expression of intellect, passion, commitment and experience? How can we lead the development of a cohesive system that satisfies patient and consumer needs and expectations? We need to learn to stop worshipping the system as it presents itself now. It is only a tool, an evolving tool … To make best use of human and financial resources will require initiative, sensitivity, objectivity and courage. We may not have all the answers today, but if we have the proper balance of responsibility across the system, expressed through vision, values, courage, reality checks and ethics, we can begin a transformation journey. Transformation requires courage and leadership. Without it we are lost.”
Transformation requires courage and leadership. Join next week’s conversation titled: “Engagement, Feedback and the Continuous Flow of Information”
About the Author(s)Peter Cox and Hugh MacLeod … Concerned Citizens
AcknowledgmentThe Canadian Patient Safety Institute (CPSI) exists to raise awareness and facilitate implementation of ideas and best practices to achieve a transformation in patient safety. We envision safe healthcare for all Canadians and are driven to inspire extraordinary improvement in patient safety and quality. To address many of the challenges mentioned in the essay above, the Canadian Patient Safety Institute – with partners – has tools and resources such as: Effective Governance for Quality and Patient Safety Program, Global Patient Safety Alerts, Patient Safety Incident Analysis and Canadian Framework for Teamwork and Communications. In addition, if you would like information about Patients for Patient Safety Canada, please contact www.patientsafetyinstitute.ca
MacLeod, H., Davidson, J. 2013. “Fragmentation vs. Collaboration.” Longwoods Ghost Busting Essays.
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