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A personal perspective from the medical care frontlines

Patricio V. Marquez's picture
Image courtesy Patricio Marquez

Despite health-promotion and disease-prevention efforts, we are all at risk of catastrophic health events, which can strike at any moment, in the form of a traffic injury, a newly discovered tumor, a brain hemorrhage, or another sudden affliction affecting us or someone we love.  When such events occur, we may abruptly face life-and-death situations that teach us first-hand the critical importance of timely access to medical care.

A recent event of this kind nearly ended the life of my wife, Lani.  This experience has shown me with utmost clarity the value of universal health coverage—a familiar phrase in health policy, but whose meaning for me has now become intensely personal.
 
For our family, when affliction struck, being covered by a comprehensive health insurance plan through my work gave us rapid entry to the medical system.  Yet we know well that our privileged situation differs from the reality faced by large segments of the global population.  Too many people have limited or no access to quality medical services when they face similar crises, due to weak health care organization, financing, and delivery mechanisms.  The randomness of disease and injury, and the enormous financial costs often associated with their treatment, can spell both medical and financial catastrophe—especially when care can only be obtained by out-of-pocket payments.  This makes effective financial protection and health service coverage a moral and social imperative.  This must be codified as a legal right or mandate to guarantee access to health care as a social good available to all on equal terms. 

We’ve also learned that, while financial protection matters, equally important is the organization of the health care system along a care continuum.  On the night of Lani’s emergency, we saw the life-saving capacity of an integrated system in action.  As soon as he noticed his mother’s condition, our younger son Alejandro had the presence of mind to call 911, the nationwide emergency response number in the United States. Within seconds, he reached a command center that dispatched a well-equipped ambulance.  As paramedics implemented practiced protocols, the ambulance sped her to the emergency room of the local community hospital, where she benefited from care coordination involving nurses, technicians, and physicians supported by imaging technology and medicines.  In that community hospital, ER teams are equipped to stabilize patients, establish diagnoses, and define comprehensive response plans, including referral to specialized centers via an emergency medical service helicopter.  This combination of resources is crucial to take advantage of emergency medicine’s “golden hour”: the short period following severe acute injury, during which there is the highest likelihood that prompt treatment will prevent death. 

At the tertiary care hospital where my wife was admitted, we experienced the top level of the care continuum.  It became clear to me that the quality and effectiveness of care at the neurosurgical critical care unit largely depended on the knowledge and skills of health personnel. In our case, this included specialized physicians, who coordinated the process, as well as the indispensable cadre of nurses and technicians, who worked around the clock at bedside.  Available technology and medicines are important supportive tools, but the capacity of the medical and nursing team to use them following evidence-based guidance is essential for proper diagnosis, treatment, monitoring, and ongoing evaluation of patients.  

Among other lessons, this means that medical and nursing education cannot remain static—it needs to continuously change in accordance with evolving evidence-based medical knowledge and the introduction of new technologies, drugs, and procedures.  Continuing education serves as the conduit for channeling new knowledge and technological development to constantly improve medical practice.

During Lani’s hospital stay, I also observed with amazement the critical role now played by electronic medical record (EMR) systems in helping coordinate the flow of patients’ medical, administrative, and financial information among health care facilities, hospital units, and health insurance agencies, all now virtually interconnected.  We experienced in a direct, personal way the remarkable progress that EMRs embody.  These systems enhance clinical decision-making and coordination, help reduce medical errors, facilitate performance measurement, and enable continuity of care as patients move across the health system.  

A related feature that has also consistently drawn my attention is the hospital’s emphasis on patient safety.  This begins with correctly identifying patients (e.g., using at least two identifiers, such as name and date of birth) to make sure that each patient receives the correct medicine and treatment.  The safety focus also encompasses attention to effective communication among caregivers (e.g., reporting critical test and diagnostic results within a defined timeframe); proper labeling of medications, syringes, and other essential supplies; management of clinical alarm systems to alert caregivers to potential problems; and measures to reduce the risk of health care-associated infections, particularly ensuring that all medical staff wash their hands between patient visits.  In my wife’s case, great value was placed on systematic efforts to reduce the risk of falls, which account for a significant portion of injuries in hospitalized patients. 

Both at the hospital and the brain injury rehabilitation center where Lani was transferred as an inpatient, the open and respectful interaction between the provider teams and our family has been invaluable in my wife’s care and rehabilitation. Including medical and nursing staff, together with occupational, speech, and physical therapists, care teams have furnished complete information about Lani’s treatment and rehabilitation plan, and kept us informed about the evolution of her condition.  This has helped address our questions and minimize anxiety and fear.  Providers have patiently educated us about different aspects of the care process, explained patients’ and family members’ rights, and even clarified mundane health insurance benefit provisions.  Since, for Lani, care and rehabilitation will not end upon discharge from the facility, we are also relying on our daily discussions with providers to learn how best to care for Lani once she moves home, and her rehabilitation shifts to the ambulatory setting.
 
I am ever more grateful to my other two kids who, along with Alejandro, have been bulwarks of support over the past eight weeks: Carlos, the oldest, Laura, the youngest, and my daughter in law, Heather.  Together, we’ve been on a long, mentally and physically taxing journey through the health system.  On that road, I’ve witnessed first-hand the promise of science and new technologies to revolutionize medical care.  New discoveries are enabling Lani to recover cognitive capacity and steadily improve her physical function and mobility.  They are helping her refine the skills she’ll need to independently perform daily activities at home, at work, and in the community—all this within an astonishingly short time after a brain hemorrhage.  At the same time, I have become a deep believer of the complementarity of science and spirituality, and the empowering force derived from the daily support provided by my two sons and daughter and the rest of our family network.  Indeed, the combination of clinical excellence, deep religious faith, and family solidarity are helping us manage this family ordeal with hope rooted in our commitment to each other. We shall overcome!

Comments

Submitted by Ventura Bengoechea on

Thanks for sharing the life threatening health condition that affected Lani (and the entire family) and for converting it into a clearly explained case of a well performing medical care system. Even more important the message about the need of having universal health coverage, so that access to high quality medical treatment is not restricted to a few who can afford it, or are lucky to work for an employer offering a good health benefit.

Submitted by Karine Mouketo-Mikolo on

Thanks for sharing this private experience. Indeed, UHC is very important. I come from the Republic of Congo, a small country of about 5 millions people in Central Africa. My mother passed away five months ago because the local medical system is not equipped and they could not save her from a brain hemorrhage. My family was able to ensure a good medical insurance for her, she had been taken to the best clinic in the country, but being financially able is useless in a country where medical care system is so weak... Ae still have a long way to go in Africa. There is no need to have doctors coming from the best universities in Europe or overseas, if our local system is not equipped for them to express the talent acquired from the universities abroad...

Submitted by Eliot SOREL MD on

Patricio, We are immensely grateful and privileged to have read your vivid rendition of your family's unforeseen tragedy and trauma coupled with a modern health system's rapid response, your family's solidarity and spirituality. May Lani's healing and recovery continue unimpeded and may she and you together with your children and extended family be blessed with many wonderful years together. Prompt access to excellent care saved Lani's life. Fifty percent of the world's population have no access to care. Total Health for All in the 21st Century must be one of our global community's top priorities. Abrazos, Eliot

Submitted by George Alleyne on

Patricio
Firs, I hope Lani will make a full functional recovery and that you and the family will have the strength and faith to accompany her on the journey. Thanks for sharing the personal story which points up eloquently and poignantly the gaps -the inequity across the world. I suppose this drive for reducing these gaps is what moves you and me. As we say appropriately "keep the faith"
George

Submitted by Gauden Galea on

Best wishes to Lani and the family.

I am touched by your personal story and send best wishes for full and speedy recovery to Lani. She was also lucky to have a supportive family around her to help her cope with the emergency.

Your story also reinforces an aspect of Universal Health Coverage that is also often forgotten. As we push ahead, rightly, on population level prevention policies, we also need to remember the importance of excellence and timeliness in response to acute emergencies. Many of the premature deaths targeted in the SDGs are avoidable by addressing emergency responses to stroke, myocardial infarction, injury. Thanks for raising this issue in your blog, Patricio, and for your family’s generosity in turning personal pain into a lesson for all.

Submitted by Shams Syed on

Patricio. This is a deeply moving perspective. Appreciate you sharing such a personal experience to shine a light on what we hold true to in such situations. Lani is special to many of us, and we wish her and you all the best at this time. There are of course many Lanis across the world - as you beautifully describe - that do not have the connect point with a quality health system that places compassion and science hand in hand to deliver the care required. It is the individual experience that we need to bring to the table, just as you have done, to remind us all that what we do is not abstract. What we do in pushing systems to deliver quality care means everything for the individuals, families and communities that we serve. Thank you again Patricio.

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