Notes and comments from the front lines of the American health care system.
By Mary Harvill, J.D.
Away from the din of the summer town hall meetings and shout downs over health care reform, I spent my excellent summer vacation getting a first hand look at Spokane’s regional health care system from my husband Jim’s bedside.
Phase 1 of Jim’s healthcare tour begin the first week of June at Holy Family for a biopsy to learn whether or not he had lung cancer. A few days after the biopsy, his lung collapsed during a procedure to insert chest tubes into his chest wall to drain fluid accumulating there from a fungal infection and bacterial pneumonia. His lungs couldn’t work properly due to ARDS (Acute Respiratory Distress Syndrome). He had to be sedated and placed on a ventilator. He spent a total of eight weeks at Holy Family Hospital in Spokane, seven weeks in the Intensive Care Unit (ICU). As all of this is happening, I had the distinct sense that the medical cost meter was running. I wasn’t sure what his medical plans covered or didn’t cover, nor did I particularly care. All I cared about was the status of my husband’s health—his vitals, his progress, the potential for improvement or the “what ifs” of a downward spiral. 
My husband has only been hospitalized once before, for pneumonia when he was 15 years old. He became Medicare eligible last year and had secondary health insurance coverage through a private health insurance company. We were neophytes to the Medicare system. Even though his medical team consisted of no less than five doctors, all specialists, there was no doctor in charge of the overall treatment plan. Thus, by default, I became the person evaluating all of the incoming information. I determined early on that I needed to develop “the plan” or both of us were going to get swept away. To ensure that I was getting the facts straight, I asked for and was grudgingly given access to my husband’s chart after signing multiple layered documents promising not to sue the hospital because my husband could not consciously agree to the release of his private health information, though legally I was his representative and advocate guiding all of the medical decisions. We can thank the Health Insurance Portability and Accountability Act of 1996 (HIPAA) for this exercise.
Once I started signing everything Mary Harvill, J.D., I found that I was treated much differently. I’d become a force to be reckoned with. My experiences as the daughter of a medical malpractice attorney, and a hospital-based dietician (my dad and mom respectively) positioned me as every doctor’s nightmare depending on what transpired between the doctor and me. Most of them learned how to create a good working relationship with me. The doctors who didn’t were either quickly dismissed or sent to the “Mary Harvill School of Behavior Modification” for lessons in humility, communication, and to have their doctor ego removed.
We have God (or whomever your spirit guide of choice is) to thank for keeping Jim alive. We have Medicare and United Healthcare to thank for funding his hospitalizations. But our experience shows that it also takes a determined patient advocate (in this case, me) willing to confront doctors about the course of treatment, especially when they seemed to throw up their hands at the grim diagnosis of late stage cancer.
When Jim’s condition in the ICU worsened, I had to endure seemingly endless conversations with his doctors about “pulling the plug.” Each and every time, I told them “no.” This wasn’t Karen Ann Quinlan we were talking about. Jim had not been in the ICU for 15 years. Further, I specifically had to ask that these daily pull the plug conversations end. I told the doctors: “If I change my mind about this decision, I’ll let you know.” From this point forward, I told them, I only wanted to hear positive information and that I wanted them to exercise all treatment options available. I figured I had at least 15 years before I had to reconsider my decision. We prayed for a miracle and we asked everyone from every possible faith to pray too.
We got our miracle. Jim miraculously turned around and, after a tracheotomy, was weaned off the vent 24/7. The drugs used to sedate him, including the now famous Michael Jackson drug “Propofol” were reduced and ended. Jim was transferred to North Idaho Advanced Care Hospital (NIACH) in Post Falls, the next stop in the health care tour.
NIACH specializes in removing the trach to permit the airway to close up and begin the process of physical rehabilitation. Unbeknownst to both of us, Jim’s muscles had deteriorated from lack of use and had atrophied. We theorize this was caused by the drugs used to sedate him and the length of the sedation. I really don’t know how Michael Jackson was able to dance knowing he was being given Propofol.
The ventilator and sedation techniques are the brave new world of medicine. The machine (ventilator) can keep you going, the drugs can keep you sedated, but they don’t resolve the physical attrition due to this form of suspended animation.
I was starting to think, “No wonder the doctors want you to pull the plug.” I suspect that many people don’t have the willpower, stamina, desire and endurance to withstand the rigors of the long road back. My husband, never critically ill a day in his life, is not one of those people. I knew he would set his goals and work as hard as possible to achieve them.
I told the doctors: “If I change my mind about this decision, I’ll let you know.” From this point forward, I told them, I only wanted to hear positive information and that I wanted them to exercise all treatment options available. I figured I had at least 15 years before I had to reconsider my decision. We prayed for a miracle and we asked everyone from every possible faith to pray too.
By mid-August, Jim was on the verge of walking again. He had use of his arms, hands and could move his feet and legs. He could walk about six steps in a specialized piece of equipment we referred to as the parallel bars. At this point, however, North Idaho could take him no further. The facility was certified to provide rehab to patients up to one hour a day. If he wanted more intensive rehab, he had to transfer to a different facility. The next level up was St. Luke’s in Spokane, a facility that requires three hours a day of therapy, five days per week (though it can be seven days a week under some insurance plans). North Idaho permitted him to get to two hours a day, building enough strength to withstand the rigors of St. Luke’s.
Jim spent the entire month of September at St. Luke’s. During his time there he learned to roll over in bed, transfer from his bed to a wheelchair and vice versa, transfer to a shower bench, to use a commode and to stand upright by a countertop. He was able to stand up and walk with a walker but he needed more strength and “up time” to become capable of sitting upright and walking unassisted.
Regrettably, St. Luke’s was not flexible enough to permit Jim to participate in fewer than three hours a day. St. Luke’s officials told me they could lose their accreditation. What St. Luke’s and its accreditors should realize is that it’s better to permit a broader range of rehab services when faced with a patient like Jim for whom three hours of rehab a day was not viable but for whom two hours would have been reasonable and productive.
After being away from home four months, and because he was unable to meet the criteria at St. Luke’s, we concluded it was time to go home. Convalescence with round the clock skilled nursing care in a skilled nursing facility was the logical next step, though we both dismissed this option out of hand because of our own fears about the quality of the care he would receive in a nursing home. The unfortunate result was having to learn the hard way that I could not be his caregiver 24/7/365 and that neither Medicare nor private insurance would pay for a home health aide to assist us, so that I could reduce my 24/7 caregiver schedule to something more reasonable. After an exhausting week at home, with heavy hearts, Jim went to a skilled nursing facility where he is thriving once again.
We have God (or whomever your spirit guide of choice is) to thank for keeping Jim alive. We have Medicare and United Healthcare to thank for funding his hospitalizations. But our experience shows that it also takes a determined patient advocate (in this case, me) willing to confront doctors about the course of treatment, especially when they seemed to throw up their hands at the grim diagnosis of late stage cancer. Their resistance communicated the question, “why are you even trying?” The simple answer was because the patient (my husband) wanted to live. Life without hope is no life at all.
In the midst of living through this adventure I’ve thought a lot about the broader picture and the historic (if often bizarre) national debate we’ve been enduring over whether and how to reform the U.S. health care system. I do think the system is in need of reform. Why? Because of some of the stupidity involved in the guidelines and fine print.
For example, Medicare will pay for a wheelchair. But Medicare won’t pay for a wheelchair ramp if the person in a wheelchair must have a wheelchair ramp to access the inside of his own home when released from the hospital.
Medicare will pay for the hip replacement surgery if my husband falls down and breaks his hip (let’s say, hypothetically because he didn’t have a wheelchair ramp to get inside of his own home, he lives alone and doesn’t have anyone to assist him so he had to climb the stairs himself). Medicare won’t pay for someone to assist him in his own home or assist him with regular activities of daily living, especially if there are family and friends that can provide this assistance for free.
If my husband didn’t have a “me” in his life, if he lived alone in a home that was disability unfriendly, what would his choices be? Who would take care of him upon release from the hospital? That’s the scary part to me. If you are alone, without family and friends to assist you (and there are many, many people in this situation) where does that leave you in the face of a disabling medical condition? The fear is very real and this is why some of those political voices are gaining ground—fear of the unknown, the daunting “what ifs” that accompany disabling medical conditions.
The single payer system, Medicare, has worked well for my husband and having a secondary insurance policy through a private insurance company is an ace in the hole. Still, you don’t know what is paid for and what is not covered under the plan until you get the bill. We need to look at this system, find the gaps, the waste, and the oddities and fix them.
While I’m not afraid of reform, I also don’t think a legislative body like Congress is in the best position to drill down and look at the specifics of the entire U.S. healthcare system. What’s so difficult about this issue is the dirty secret that nobody really knows what is in their healthcare plan until a medical crisis happens. Then you find out and then you discover the glaring gaps.
Do I think Sarah Palin’s euthanasia death squads would have caused a different outcome for my husband? No. Why? Because there isn’t such a squad in the legislation. It’s a fiction designed to frighten older citizens.
I do think that some of us, myself included, need to go to the town hall meetings, contact our congressional representatives and shout over the folks who are creating fear and apprehension in the grass roots that is echoed in the mainstream media. We have a decent healthcare system that could be so much better if it were available to everyone.
The single payer system, Medicare, has worked well for my husband and having a secondary insurance policy through a private insurance company is an ace in the hole. Still, you don’t know what is paid for and what is not covered under the plan until you get the bill. We need to look at this system, find the gaps, the waste, and the oddities and fix them. But everyone has to be on the same page. It won’t be reform if new loopholes are designed to maintain the status quo among the gargantuan pharmaceutical companies, for-profit health insurance companies and medical facilities. How can healthcare profits be extracted at the expense of human lives? How can the CEO’s of these organizations live with themselves?
Reform doesn’t mean socialism or communism (and even if it did, would socialism or communism in the form of healthcare for all be a cardinal sin?) We all want to know the answer to the bottom line questions: “How does the present healthcare system affect me? and “how will healthcare reform affect me?” Right now, you only find out the answer to the first question when you get the hospital bill. You won’t know how reform will affect you until the reforms take effect, you experience a healthcare crisis and you get the new bill under the reformed system. The new bill brings with it fear of the unknown. But, again, it’s not as though this fear doesn’t exist now, under the current patchwork of rules and policies.
Reform should not be driven by special interest lobbyists unless they represent the groups that understand the gaps. The consumer should be given a greater voice in tailoring the reforms and the new approach tailored to what the consumers want and need in this healthcare reform process. Past consumers of healthcare know where the gaps are. No doubt, the final bill presented to the President will contain bridges to nowhere and other special varieties of pork that only our unique system of government can deliver. (Oh, if only we permitted our President the power of a line item veto.) If the reform bill isn’t up to par, President Obama should have the courage to reject the bill and send it back to the drawing board (with detailed suggestions) to be re-drafted and resubmitted.
Above all we should keep our eyes on the prize. Why not healthcare coverage for all? How can this country afford to continue to refuse to provide healthcare coverage to its citizens as a basic human right?
As for Jim and me, our agonizing, real-life experience with cancer and the American health care system goes on, though with more reasons for hope. Jim has now completed his first cycle of chemotherapy. Apparently, toxic drugs agree with him. He is rebounding after three months of debilitation. We remain optimistic that with time and cancer treatment, he will be able to gain enough strength to resume his daily activities, including walking again.
–CFJ
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