Final entry…
I think the most absurd, desperate, and tragic moment of our journey through the U.S. health care system was when the insurance company denied us the right to use the cardiologist whom Craig had been seeing for over a year because the insurance company didn’t have a contract with the hospital at which he did surgery. How convoluted is that? We chose the cardiologist based on the insurance company’s recommended list, but in an emergency life-and-death situation, we were refused help because of a contract, a piece of paper that somebody, somewhere sitting at a desk, signed.
I am not angry because in retrospect, it was obvious Craig’s body was breaking down with congestive heart failure and chronic kidney disease. Perhaps, if they had found the kidney stone in his ureter two years’ earlier, he would have survived longer without all the blood pressure medications and negative side effects. The doctors needed to look just a little further, maybe a couple of centimeters, to find that kidney stone that had been lodged in his ureter for as long as ten years, according to one doctor. The pharmaceuticals and surgical procedures prolonged the inevitable, but our life became one of endless doctors’ appointments, medications, and tests.
I had a friend, a French woman who befriended me when I was a student in Paris in my 20’s. Sadly, in 2008, she got breast cancer. We corresponded throughout her illness. When she needed to undergo radiation and chemotherapy, she stayed in a sanitorium at the beach for the duration of her treatment. She was able to open the doors to her room and breathe fresh salt air every day. I went to visit her after she returned home. A nurse came daily to tend to her. House calls are common in France. A car and private driver picked her up to go to her follow-up doctor visits. And she was not rich. She was a secretary. You can dismiss this as anecdotal evidence, but…
WHAT ARE OUR HEALTH CARE VALUES?
The difference in health care values between the U.S. and France, Canada, and many other countries, is staggering and tragic. The U.S. health care system ranks as one of the least efficient health care systems in the world. There is something systemically wrong when you can only get health insurance if you have a job. When you must drive yourself or a loved one to the doctor when they are very ill. When calling 9-1-1 may cost you a hefty sum for transport.
The slogan for Dignity Health, the fifth-largest hospital system in the United States, is “Hello Humankindness”. First of all, that isn’t even a word—please don’t insult our intelligence. Pictures of happy, smiling people with the bright orange slogan is plastered everywhere in their hospitals—at the entrance, on the workers’ badges, next to the elevators, in the elevators, in the bathrooms, on the meal trays. It is nauseating. And honestly, our experience was exactly the opposite. It was impossible to get any sleep with the monitors beeping at all hours of the day and night, and everyone agrees that sleep is one of the most important factors in healing. Patients are awakened every few hours for tests. Blood tests are done so often the patients are black and blue and nurses find it difficult to locate veins to stick. Doctors spend at most maybe five minutes during their visits. They never touch the patient, most never even look you in the eye. Rather, they spend their few moments looking at their notes or typing into their tablet. Many of the doctors have thick accents and are difficult to understand. Accent reduction classes would be warranted, but they don’t have time. Nurses provide the only human contact and they are overworked, frantically trying to keep up with their workload.
The contemporary version of The Hippocratic Oath to which doctors swear is surprisingly humane:
“I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.” https://www.pbs.org/wgbh/nova/doctors/oath_modern.html
Sadly, in practice, these human values disappears. How has medical care wandered so far away from warmth, sympathy, and understanding? How do we get back to some semblance of humane caring?
We were lucky because Craig qualified for Medicaid, but there are many more people who don’t qualify for welfare, but don’t make enough money to pay for health insurance, expensive premiums and co-pays, and prescribed drugs. I don’t know the answer to this question, but I know a lot of people are asking it and a lot of people are clamoring for real change.
One idea that has been gaining ground is the idea to expand Medicare to the whole population. Right now, you have to be 65 years or older to obtain Medicare. 75% of people with Medicare are happy with the system, so the argument is why not expand it. Medicare for All
How do other industrialized countries manage to provide low-cost, high-quality health care to their citizens while spending vastly less than America does. In The Healing of America, journalist T.R. Reid views the issue as fundamentally a moral one: “Should we guarantee medical treatment to everyone who needs it? Or should we let Americans… die from ‘lack of access to health care?’”
https://journals.lww.com/ajnonline/Fulltext/2018/11000/Fixing_America_s_Health_Care_System.33.aspx
WHY ARE WE AFRAID OF DEATH?
Spoiler Alert: No matter how well you take care of yourself, at some point, you will die. No one gets out alive! It is a universal experience. Can it be that bad? It is understandable to be afraid of the unknown, but our culture has a particularly difficult time with death.
Death of a loved one plunges us into grief and mourning over our loss, but our loved one is free at last from any further pain and suffering. Understandably, we attempt to prevent this death, hoping for healing, but sometimes prolonging life is actually cruel. We are kinder to our animals than we are to our fellow human beings. Why? Because it will be so painful to us, the survivors. Isn’t this a selfish position? In true compassion, supporting our loved one’s transition is courageous. Accepting the impending loss and suffering we will experience for the benefit of our loved one. Thankfully, we have hospice programs now that are helping us navigate that path of acceptance of the inevitable. I am eternally grateful to the hospice organization that helped me. We experienced this spiritual moment together and then the care workers were gone. I don’t even remember their names, but I will always honor them.
CAN DEATH BE BEAUTIFUL?
An oxymoron yes, but Craig’s death was beautiful. An exquisite moment. It was also extremely painful for me and everyone, but I am so grateful that he died the way he did. He was at home surrounded by his loved ones and his music. I was able to say goodby and tell him how much I loved him and I thanked him for loving me. I know this sounds contradictory, but it couldn’t have been better.
THE UPSIDE OF GRIEF AND LOSS
I spent many months during my grieving straddling that ephemeral space between life and death. My friends and family felt so bad for me that I had the double whammy of the Covid pandemic lockdown and Craig’s death to deal with. Honestly, the lockdown was a blessing to me. I didn’t have to deal with the usual social life which ground to a halt. It gave me time to process my feelings. I wrote a lot. I played music a alot. I took long walks. I meditated. I tried to be patient. And I tried to be kind to myself. I was defining this new relationship—grieving that Craig’s physical body was no longer here. We could no longer sing or laugh together. I would never feel his arms around me again. This new relationship would be a spiritual one now.
Finally, at times now, I can feel a joy that swells from within me. Not always, but a small flame, a spark for life, has returned. A more profound joy for the simple things in life—my grandchild’s laughter, a beautiful sunset, Venus in the clear night sky, a hawk catching the thermals, a phone call from a dear friend. I appreciate them even more. That is the upside of grief and loss.
Thank you for reading my story. I’m going to take a break from writing this blog until the new year. 2022 is just around the corner. In the meantime, may you and yours experience joy and peace with a healthy dose of gratitude. peace and love, Debora