With permission, I am reprinting Larry Minnix’s great essay on his mother’s experience with the health care system. Contrasting it against the “death panel” rhetoric floating around, he actually shows how current proposals would actually pay for services that have up until now been provided at times for free from providers who at the end of the day have the patient/resident at the heart of everything they do. Thanks Larry and here it is:
My acid test of health care reform is how it will make my familyÛªs life better. IÛªve told many stories about my late mother, a real character. She died of cancer almost five years ago. She lived at Wesley Woods, a HUD 202 facility in Atlanta. She was a volunteer there for years. She moved in ÛÒ her decision ÛÒ within a year after my daddy died. She was lonely.
MotherÛªs cancer was rare and difficult. Multiple surgeries, experimental drugs, tended by compassionate geriatricians and oncologists, nurses who came to her apartment without compensation, her great-great niece Ashley, a pediatric ICU nurse who spent three nights per week at the Towers, her great nephew Steve, a staff member who did chores (probably on a cash basis, but IÛªm not sure), and Chaplain Woody. And there were numerous friends like Doris, Peggy and Lynn. And she had my wife Kathleen and me. Kathleen stayed close in Atlanta, while I lived in Washington, D.C. Our own long-distance caregiving story.
Mother was middle-class poor. She worked for the county government for 40 years. She earned a couple of thousand dollars a month in retirement and Social Security and had $130,000 in the bank after selling her house and receiving the payouts from my late fatherÛªs insurance policies.
She had Medicare Part A, took advantage of Medicare Part B (a voluntary opt-out program) and supplemental insurance offered by the county. She had a car, which she sold when driving became difficult and the upkeep a strained expense. The sale put $3,000 in her bank account.
Mother died at Emory Hospital while living at Wesley Woods. Of course, we had to think about the prospect of nursing home care. Fortunately, she had enough to pay for the great care she would have received at Budd Terrace or A.G. Rhodes at Wesley Woods. When that money ran out, she had too much income for Medicaid at the time in Georgia, so my wife and I would have supplemented. That made me rehearse in my mind about difficult choices of state school tuition for my sons instead of private college tuition versus nursing home care for Mother. Fortunately, we didnÛªt have to make those choices, but we did have bigger choices to make.
The bigger choices: how aggressively does the cancer get treated at various stages? Who decides?
A few years earlier, my mother, father, wife and I decided to update our wills, living wills and durable powers of attorney. Mother and Daddy switched their care to a couple of wonderful geriatricians at Wesley Woods, who gave them great attention and wise counsel. We had the same attorney, an old friend, help us draw up the documents. Mother and Daddy had different ideas about the conditions related to aggressive treatment, but both agreed that final decisions would rest on my shoulders if they were unable to decide. Before their lives were over (he died of heart disease), both documents had to be invoked so my father could avoid aggressive/liability-driven treatment at a local emergency room, and my mother could be comfortable with clinical quality versus quantity of life as she faced the inevitable.
My mother, my wife, MotherÛªs oncologist and I sat in the doctorsÛª office a few months before she died. The cancer had returned, this time inoperable, and experimental medications werenÛªt helping. The doctor explained the options: much more aggressive chemotherapy, with side effects, and low probabilities of cure, though always a chance, versus comfort care.
Her position: ÛÏI donÛªt want to die because I donÛªt want to miss anything. So, if treatment can get me several months or more, IÛªll try it. If not, I donÛªt want to suffer. So, Doctor Lawson, we all know the score. You and Larry decide. Now, IÛªd like to talk about something else. I believe IÛªve put that in writing already.Û Comfort care and quality relationships became the objectives after more than an hour with the doctor.
The second choice came a few weeks later. She began to smother. Fluid around the heart and lungsÛÓinternal lesions from the cancer. The hospital drained them. The question: how many times do we anesthetize her to drain them? Very soon, it would need to be done every few hours. Temporary relief through a painful procedure. MotherÛªs great-great niece, Ashley, along with Woody, the doctor and my wife were her ÛÏpanelÛ at the bedside. The conclusion: enough is enough. She passed a few hours later.
Now, how would health care reform ideas floating around Washington improve my motherÛªs experience? After all, Medicare already offered her choice of doctors and hospitals. Those doctors and hospitals had choice in terms of whether they wanted to serve Medicare patients, which, thankfully, they did. My motherÛªs drugs were covered by the combination of Medicare and supplemental insurance. No one ever questioned those doctorsÛª ordersÛÓeven the experimental. The time her geriatrician and oncologist spent with her related to their wise counsel was not totally covered. In fact, geriatricians and family practice doctors are grossly under-reimbursed for encounters where the interaction is not for a procedure rendered.
The services delivered to my mother in her apartment were not covered by anyone. They were either given freely by friends and committed professionals or paid in cash by my mother. I later found out she needed more of these support services than I knew or she led me to believe. She could have been more independent and comfortable, but she didnÛªt have the money. Fortunately, she had friends and family from whom she bootlegged attention in her own endearing way. But what if she was a person without those precious assets of friends, family and charm?
The various health care reform proposals airing in Washington today would do the following to improve my motherÛªs experience:
* Actually pay the physician for the time he/she spent with my mother, wife and me to reach ethical, responsible decisions from time to time.
* Provide for a daily cash benefit to help my mother cope more comfortably and easily at the Towers without imposing on friends.
* Allow her choice of trusted providers in her community.
* Cover more drugs if she had needed them.
* Pay for care management to help her ÛÒ and me ÛÒ see that her care had continuity. She might have avoided a couple of emergency room visits. Reduce the possibility for spousal impoverishment if both of my parents had lived longer, had become more disabled and if one had needed Medicaid.
* Allow her to purchase insurance without being excluded for pre-existing conditions. Currently, my family cannot get insurance because of pre-existing conditions.
* Assure that her therapy wouldnÛªt have been capped, if needed.
* Allow me to bring my mother to Virginia from Georgia with consistent eligibility requirements and, again, a daily cash benefit to help us help her in our home or in another setting.
Your AAHSA staff is in the middle of health care reform. We meet a lot of policymakers and review a lot of drafts of possible language for health care reform bills. It is now a seven-day-a-week responsibility. The summary above is what the basics of health care reform would do (or would have done for my mother), if many of the provisions being discussed are enacted.
Some people are calling such provisions ÛÏsocialized medicine,Û government interference in our lives and ÛÏdeath panels.Û They donÛªt know what theyÛªre talking about.
My motherÛªs ÛÏdeath panelÛ would have continued to be her doctors, my family, a chaplain, a great-great niece and a lawyer. No one from the White House, the House of Representatives, the Senate, HHS, or even the Politburo would play a role other than to make sure she was assured of more choices, guaranteed coverage and more peace of mind.
No reputable policy maker here is advocating for socialized medicine or death panels. There will be things we like ÛÒ and some we donÛªt ÛÒ about a final health care reform bill. WeÛªll be vigilant about that and keep you informed. But donÛªt be a victim of unintended, or even manipulative, rhetoric.
We all have the responsibility to filter the rhetoric through personal experience and facts. I begin with the question: Does any proposal make it easier on people like my mother or yours?