Health Reform and Reminiscences of Hospice Patients

This blog is dedicated to a good friend and patient of mine who died last month in hospice. I had taken care of her for 15 years. We had many remarkable and enjoyable conversations regarding her growing up in a home where her father was a physician. She thought very highly of her father and the profession of medicine. She knew the value of good medical care and how much it means to all of us, even physicians and their families. She had seen the human side of medicine in its effects on her father and her family.

Earlier this year, she contracted lung cancer and fought valiantly against it. She endured multiple pulmonary emboli (blood clots), pneumonia, and, finally, terminal pleural effusions (fluid between the lungs and chest cavity), which, despite the best chemotherapy, were all too much for her. The last time I saw her, we discussed hospice as an option. My file note says it all: “Had a frank discussion with patient regarding her limited options, and she chose to enter hospice.” She entered hospice care, and I left for a family reunion. She died in hospice before I returned. I will remember that final conversation I had with her until the day I die.

As a hospice physician, I have had thousands of conversations with patients with terminal health conditions over my 30 years of practice. This particular conversation was wide-ranging. It included her fond memories and recent regrets, her hopes for the future and her concerns for her loved ones. She just had her pleural effusions temporarily drained and for the first time in days could talk without gasping. She had chosen to fight until there was no hope, and now she accepted her reality and chose to relinquish the fight. She now was focused on her family and their needs. She spoke soberly but with great wisdom and clarity. I am proud to have known her and honored to have had her as my friend and patient.

From many previous conversations, I know this patient was excited about the Affordable Care Act (ACA) with its promise of offering health care to decent, hard-working people who were suffering and too often dying from their inability to see physicians like her father and me. She was frustrated with the stuttering rollout of the ACA but was active in trying to maximize its positive effects, as well as supportive of improving it where it needed to be improved. As a physician, I have a moral and legal obligation to stop at the scene of a motor-vehicle accident and offer care; as a physician, I have a moral and legal obligation to report abuse and neglect that I witness while providing care to my pediatric patients and my impaired adult patients. Neither I nor my now-deceased patient could ever understand how — when medical care through Medicaid or health-care coverage through the Exchange is available — we, as a state and as a society, allow so many citizens not to have access to medical care. Is there not a moral obligation — a moral imperative — in this situation?

In Iowa, thousands are without health-care coverage because they believe either that the ACA is simply “wrong” or they lack the means to enroll for health care. A year into writing this blog, this realization saddens me most. Across the nation, millions now have health care that was previously unavailable to them. In Iowa, almost 100,000 more people now have Medicaid because of the ACA. In Iowa and Nebraska, 86,000 individuals are insured by a nonprofit cooperative insurance entity, CoOportunity Health, which was created with loans from our government as enacted through the ACA. These 86,000 policyholders now own CoOportunity Health, because of its cooperative structure. As a recent study again proved health-care coverage through Medicaid or insurance purchased through the Exchange saves lives. My late patient knew that. I know that. The challenge and my patient’s legacy is that, for Iowans who are eligible for health care, they receive health care. We need to promote it, publicize it, support it, cheer it on, simplify it, and make available the means for people to easily enroll in these health-care programs.

In the upcoming November election, there is one question we should all ask before we vote for any candidate: Will this candidate, once elected, seek to more easily allow individuals to receive medical care, or will they seek to deny or remove medical care from those who desperately need medical care? Writing this blog over the past year, we have discussed several issues, including patient-centered medical homes, insurance Exchanges, the peace of mind that comes with obtaining health insurance, and the benefit of establishing an Iowa-based Exchange. I look forward to continuing these conversations. I have several more issues to examine in this forum.

Yesterday I met the daughter of a another hospice patient. She had moved her dad into her home in the country to care for him in his final weeks. He loved to be outside or look out the windows to observe the beautiful surroundings at his daughter’s rural residence. In home visits with him, I would marvel at the pond and woods this patient could observe and enjoy from his bedroom windows. He would describe to me the wildlife he saw. His daughter told me that, since her dad’s death, a red-tailed hawk had been present regularly outside her house, sitting on the roof with a mate or perched on a fence post. Once it tried to fly into the house. She saw the presence of the hawk as significant. I am sure that both of my patients mentioned in this blog are observing our collective actions on Earth and cheering for their favorite endeavors, be it a viable health-care system available to everyone or the rich state of wildlife in Story County. Similarly, I, too, am cheering for both of these righteous endeavors.