By Doug Magill
Valerie Kay knows what it’s like to be alone, and frightened. To be lost in the labyrinth of a modern hospital, to have no one to turn to, to know that her life was bleeding away inside her. And to have no one listen.
The face of the petite and energetic blonde shadowed the despair she felt the night after she delivered twin daughters via cesarean section as she described her ordeal.
Cautioned against any strenuous activity she nonetheless had a coughing fit after accidentally ingesting some liquid into her airway while eating. She immediately felt something burst in her lower left side. She frantically notified the on-duty nurse who tried to sooth Valerie after taking her blood pressure. She was told, “We’ll keep an eye on you,” but the duty physician was not notified.
Within a short period of time Valerie could feel pain under her right clavicle, echoing a problem she had dealt with earlier in her life. It was an indication that she was bleeding internally. Soon, she had trouble breathing, underscoring the fact that the blood flowing inside her was putting pressure on her diaphragm.
After continued pestering of the nurse, the resident on call was finally paged. His attitude was of annoyance at having his sleep interrupted, and he did not even focus on Valerie or her symptoms as she described them to him. Leaving abruptly, he said that someone might be in later and maybe then they would take an X-Ray.
Valerie was now desperate. She knew the symptoms of the problem she was dealing with. A few years earlier, after a minor surgical procedure to one of her ovaries, she had felt the same pain, and the same desperation caused by her difficulty breathing. Although what had caused the bleeding was never determined, she was well aware of what happened internally once bleeding begins.
The Latrobe, Pa., native had been in medical device sales for many years, and was accustomed to dealing with the idiosyncrasies of the medical world. Her husband had taken a sports information job in North Dakota, and they were finally in the process of having children. Despite her difficulties, she was able to conceive and deliver a daughter in 2000.
Now in delivering twins, she was once again in a desperate struggle to breathe, and to survive. Valerie called home to ask for help, but the phone went unanswered. Having nowhere else to turn, she focused on breathing, on making it through a few minutes at a time, praying for dawn, and the possibility of being given more attention by the day shift.
When the next shift came on duty, the head nurse immediately recognized the severity of the issue. All Valerie remembers is the nurse’s eyes wide with alarm, and her own struggle to voice a desperate plea, “Help me!” The nurse immediately scheduled a surgical suite, the on-call surgeon and a cardiologist in a frantic campaign to save Valerie’s life.
Six pints of blood were aspirated from her abdomen, and a new incision was made to see if the bleeder could be located in her chest cavity. Bearing significant scars today, Valerie still doesn’t know what was bleeding, and why it stopped. But she left the hospital with a deep conviction that no one else should have to be so alone, so scared, and so helpless.
Returning to her career at Boston Scientific, Valerie knew that the miraculous devices that she marketed to cardiologists required a sophisticated level of education and understanding. They could save lives, but getting the right information to the right people was always a struggle. Advocating change through new techniques or information is extraordinarily difficult in a world where specialization is the rule of the day.
She began researching the idea of starting a company to assist patients with complex medical issues, but the demands and rewards of her job prevented her from making the leap. She went through a mentoring program sponsored by Baldwin-Wallace College, where she was encouraged and supported. But she struggled with the fear of being alone in the world of entrepreneurs, and wasn’t sure she was ready.
Following a surprise and potentially lucrative opportunity at a startup medical-device company, she thought that her dream of developing her own business to assist others was fading. Within months the company folded, and Valerie was unexpectedly out of work. Seizing the situation as an opportunity, she worked with her mentor at Baldwin-Wallace, Ron Cohen, and began formalizing the plans for her company: Navigate Healthcare.
Years ago it was customary for a patient’s primary-care physician to coordinate medical care and be the primary source of information. Today, under the pressure of Medicare’s fee-for-service model and absent significant tort reform, care is splintered across specialties and tests and facilities to the point that patients feel no one has a comprehensive picture. No one really is in control of their care.
Some hospitals provide patient advocates to help with the confusion and the complexity, but that is within fairly narrowly-defined parameters. In reality, no one really represents the patients, other than themselves. While many diseases that were once significant causes of mortality can be treated and cured, many patients die from the overall lack of control in many medical institutions.
The numbers are staggering. It is estimated that over 225,000 patient deaths each year can be attributed to medical mistakes. Effectively, it is equivalent to two 747 jumbo jets crashing every day.
And yet, huge medical institutions grow bigger, and treatment gets more complex. All the while becoming more disbursed in terms of control and continuity.
Valerie believes that we are now in a situation in which it is vital that patients have someone understand the information available, evaluate the treatment options, and monitor conflicting prescriptions and tests. As her attorney Bill Ferry posited, “You wouldn’t go into a complex jury trial where there are specialized terms and practices without competent representation. Why would you do the same in the medical world?”
To that end Valerie and her company believe that for those who have a family member dealing with a chronic illness, an advocate is essential to research and filter all of the available information and to coordinate care among specialists. For those who have dealt with such problems, one member of the family usually ends up taking on that role. The time commitment can be enormous. As can be the fear that something might be missed in available information or in the world of experimental medicine.
For families struggling with the exigencies of geriatric care, the complexity of all of the options and paperwork and agencies can be bewildering and frustrating. Here too an advocate can make sense of what is available and what needs to be done. And can help guide a family through the process of gradual decline.
Another potential area of need is that of patients who are pre-planning their care and want as much control as possible. This will become more acute if Obamacare is implemented due to its government-dictated treatment protocols and concomitant drastic reduction in options. For them an advocate will manage all of their records, provide analysis of medical options, make sure that appointments are kept and results followed-up. This is an area of growing need, and presents the possibility of including such coverage in company plans – extending even to the loved ones of employees.
Just as companies today provide legal and financial-planning assistance to employees, it is only a question of time before medical-care advocacy becomes as essential tool for attracting and retaining competent personnel.
It should not be forgotten, too, that ultimately success in dealing with the world of medical care is for the most part directed to reducing the need for it. And having an advocate can help with one of the most important parts of treatment: attitude. The belief that someone is looking out for you and making sure you are getting the right medical care can contribute to the belief that you can make it.
Norman Cousins, writer, editor and author of Anatomy of An Illness understood. “Drugs are not always necessary. Belief in recovery is.” Likewise, advocates such as those with Navigate Healthcare can help with that most important medical tool – hope.
A cancer survivor, Doug Magill is familiar with the difficulties of determining treatment options and selecting providers. He is a consultant, freelance writer and voice-over talent. He can be reached at email@example.com