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The Idea Of A Good Daughter

2024; Project HOPE; Volume: 43; Issue: 12 Linguagem: Inglês

10.1377/hlthaff.2024.00783

2694-233X

Jennifer Beard,

Gender, Labor, and Family Dynamics

Narrative MattersAge-Friendly Health Health AffairsVol. 43, No. 12: Risk Adjustment, Insurance Markets & More The Idea Of A Good DaughterJennifer Beard AffiliationsJennifer Beard ([email protected]) is a clinical associate professor at the Boston University School of Public Health, in Boston, Massachusetts. The author thanks the Boston University Medical Campus Narrative Writing Program for years of inspiring conversations, collaboration, and support. The author is grateful to Kristine Black and Zoe Beard, fellow travelers on this difficult journey. To access the author's disclosures, click on the Details tab of the article online.PUBLISHED:December 2024Free Accesshttps://doi.org/10.1377/hlthaff.2024.00783AboutSectionsView articleSupplemental MaterialView PDFPermissions ShareShare onFacebookXLinked InRedditEmail ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsDownload Exhibits View articleAbstract A public health professor and her mother failed to receive long-term care support from the health care system when they needed it most.TOPICSCaregiversHome careElder CareOlder adultsLong-term services and supportsSystems of careCancerIllustration by Brett Ryder Everyone in my mom's hospital room was looking in my direction. I glanced over my shoulder to see whether someone was behind me. No, it was me they were looking at. Mom was being released after a three-week stay with what amounted to a feeding tube. The hospital staff were expecting me to oversee her daily care. A natural assumption, but our situation was complicated. Mom lived alone in Ohio. I live in Boston, where I am a professor. Fourteen months earlier, my father and brother had died two days apart. We had no other relatives. But the truth remained that Mom needed daily assistance, and I was the obvious person to provide it, even if it meant moving back to Ohio and eventually giving up my career and home. Mom was the one person in her hospital room who wasn't expecting me to do any of this. We were both devastated by the recent halving of our small family. But Mom was also beginning to enjoy her new independence. And she took great delight in my professional success. I am a first-generation college graduate, and she had sacrificed much to send me to Youngstown State University. She often talked about her daughter, "the professor in Boston." My success was her success. When I think about my mom in that difficult year, one photo always flickers in my mind. We were sitting in El Carlos, a now-shuttered restaurant in Lake Milton, Ohio, where we had stopped for dinner after a leisurely drive through the rural towns and farms surrounding Youngstown. In the picture, Mom is beaming, smiling with her whole face, with her newly white hair (after fifty years of L'Oréal red) and black shirt brightened by the orange wall behind her. I had come from Boston to commemorate the one-year anniversary of the deaths of Dad and John. We were still living with gnawing grief, but we were also celebrating their lives, our endurance, and her first year of living and thriving on her own. Against that orange wall, Irene Bogacki Beard radiates optimism and delight. Six weeks later, Mom called to tell me that the shooting pain she had been feeling in her back for the last couple of months was caused by a tumor on her spine. Her doctors suspected metastatic breast cancer. I immediately made plans to fly to Ohio to take her for a mammogram and biopsy. By the time I arrived, the pain had spread to her stomach and was so debilitating that we went straight to the emergency department (ED). That afternoon trip to a Youngstown hospital turned into a twelve-hour wait on a gurney in the hall, a late-night transfer to a well-respected urban teaching hospital seventy miles away, and a three-week stay. It was the start of a dark and eye-opening odyssey. The doctors quickly gave us a diagnosis: stage IV breast cancer that had spread to Mom's bowel and spine. They unblocked her bowel and put a catheter in her chest for total parenteral nutrition, or TPN. All her nutrients were to come from a finely balanced liquid cocktail pumped into her body for twelve hours each day. Every night Mom would be hooked up to a three-liter bag containing clear viscous fats, amino acids, vitamins, and more. The tapered flow through the thin rubber tube connected to the port in her chest was controlled by an electronic pump attached to a rollable intravenous bag stand. Until my epiphany in Mom's hospital room, it had never occurred to me that I would have to make a choice between caring for my sick mother and maintaining the life I have built over decades in Boston—my home, my career, and my future security. I have been teaching public health graduate students since 2005, so maybe I should have seen this crisis coming. I have long known how easy it is to fall into one or more of the many cracks in the US health care system, sometimes inextricably. Nevertheless, I was stunned as I peered into the gaping long-term health care chasm that had just opened at our feet. Before Mom's discharge, all our conversations with her doctors focused on cancer care. They asked whether I would be able to bring her to Cleveland for monthly tests and to her radiation appointments in Youngstown. I said yes, of course. I planned to return to Ohio at least once a month to drive her to oncology appointments. I would help her arrange rides to other appointments, and we would continue talking every day. Mom was clear: She didn't want to move to Boston to live with me. Her life, memories, friends, and teenage granddaughter were all in Ohio. Mom's doctors were optimistic about her cancer prognosis. They expected her tumors to respond well to radiation and medication, which they did, and quickly, with very few adverse effects. The TPN was another story. During Mom's twenty-one days in the hospital, we told anyone who would listen that I would be going home to Boston, that we had no one who could move in or consistently visit twice a day to help with the TPN. Mom had spent twenty-five years working as a licensed practical nurse. She was optimistic that she would be able to learn to set the TPN up herself. My sister-in-law, a registered nurse who lived a couple blocks from my mom, was happy to help out. She agreed to visit every night and morning for a few weeks to help Mom start and stop the pump as she learned how to do it herself. The doctors assured us that the hospital's home care team—nurses, social workers, pharmacists, and other staff members dedicated to helping chronically ill patients and their families make the transition back home—would support us in handling the TPN. I believed that would be enough. My magical thinking shattered the night Mom went home. We were elated when we arrived at her apartment. My sister-in-law and niece brought celebratory popsicles and Jell-O (staples of a liquid diet). But our relief started to evaporate as soon as the nurse arrived. She was patient and kind, but it quickly became clear that Mom would not be able to start or stop the TPN on her own. Cataracts in both eyes made it impossible for Mom to see the tubes, buttons, and digital numbers on the pump. Her hands were so cramped and weakened by arthritis that she had a hard time grasping the thin clear rubber tube, much less inserting and detaching it from the port in her chest. While she was deeply attached to her iPad, Mom often panicked when trying to operate other electronic devices. The pump was the beating heart of the TPN setup, and she couldn't even see the on-off button, let alone the digital display. Her mounting anxiety was palpable. After the nurse left, we turned down the lights, put lavender essential oil into diffusers, and watched 90 Day Fiancé (Mom's favorite reality television show) in the glow of gently alternating colored lights. She started to relax, and so did I. We agreed to get some rest before deciding what to do next. But we got very little sleep that night or in the coming months. In fact, Mom never had another night of uninterrupted sleep in her life. Around midnight, I was sitting in bed responding to work email when the pump alarm went off. I rushed down the hall. Mom was sitting up in bed, dazed and distressed. The electronic message said that there was air in the line. The nurse had not prepared us for this. I found the booklet that accompanied the pump on the cluttered kitchen table, but it wasn't helpful. While the alarm continued to bray like a distressed donkey, I fiddled with the buttons. Not knowing what else to do, I restarted the pump, and quiet returned. But only briefly. The alarm woke us three more times in as many hours. At 4:00 a.m. I couldn't get it to stop. I called my sister-in-law, who got out of bed, drove over in her pajamas, figured out how to prime the pump, and went back home. Mom's delight at being home quickly settled into a state of persistent stress. Her natural optimism buoyed her spirits each day, only to be knocked down again and again. Some of these challenges may have been surmountable with time, patience, and practice. Mom did get better at navigating her apartment while connected to the TPN. But nothing could have prepared us to deal with the accursed pump. Even though it was replaced three times, it woke us multiple times each night, sometimes going off when Mom made a hasty movement and other times for no apparent reason at all. We were furious and helpless. Mom openly lamented her lost dignity and autonomy. And I finally, fully understood that the hospital had committed me, without my knowledge or consent, to be my mom's full-time in-home health assistant. I called everyone I could think of for help: the hospital's home care nursing superintendent, a hospital social worker, Mom's doctors, and her insurance company. The insurance company told me that medically necessary in-home care was covered. The oncologist wrote orders stating that the assistance Mom needed to keep the pump running each night was indeed medically necessary. But the hospital's head home care nurse and social worker patiently, and not unkindly, disabused me of this hope. I was told repeatedly by different people that neither private insurance nor Medicare would pay for in-home chronic care if the patient could rely on someone in their life who was teachable. Every time the person on the other end of the phone referred to "teachability," I would push them to clarify. What is teachability? Who is teachable? And what if someone is teachable but not available? I coach public health students on how to be better writers. I can usually get them to pin down the nuances of vague buzzwords like teachability. But, in this real life-and-death situation, I could not persuade anyone that the word referred neither to me nor to my sister-in-law. In their minds, we were sentient and currently in Ohio. That alone qualified us even though we both had full-time jobs, I lived 700 miles away, and my sister-in-law was a single mom and not a blood relative. The home care team tried to help. But they were working within the severe limitations of a faulty system. They said we could probably get Medicare to pay a home health aide to visit a couple times a week to help my mom with bathing or housework. But that was not what she needed or wanted. Mom was eager to do those things herself and regain some semblance of agency. She needed help restarting the TPN pump several times each night. And that simply did not exist, unless the help came from me. In other words, I was looking at the possibility of having to take an extended leave and maybe give up my career so that I could turn a temperamental pump off and on every few hours, every night, indefinitely. It was almost laughable. It was infuriating. And it was demoralizing. Mom worried about me as much as I worried about her. She was acutely aware that if I stayed, I could lose the life and security I had been carefully building for decades. I could not go home for more than a few days at a time. I was unable to work in any sort of focused way (even remotely). I was checking email; doing simple, fast tasks that needed immediate attention; and attending Zoom meetings from the car. But anything that involved time, thought, or planning was shoved aside.Temporary Reprieve Our next step was to hire a private nursing company and pay out of pocket. That's when I learned that only bonded, registered nurses could provide in-home TPN care in Ohio. This is worth repeating: Only bonded, registered nurses are allowed to provide in-home TPN care. Yet here we were, expected to do the same thing after just an hour of training. So we started paying more than $200 a day for a nurse to visit for fifteen minutes every night and morning to start and stop the TPN. But we still needed overnight help to deal with the equipment glitches. Mom was understandably terrified at the thought of moving to a nursing home, even temporarily. Still, we looked into that option and immediately hit another barrier: Very few facilities in the area provided TPN care, and the ones that did were full. Our struggle and Mom's life ended abruptly. A week after receiving good news from her oncologist and radiologist—the tumors were receding, and we might begin contemplating an end to the TPN in the coming months—my mom developed a septic infection. She was happy, chatty, and lucid when I talked to her on the phone just before the visiting nurse arrived to start the TPN at 8:00 p.m. on Friday night. She was still fine when the nurse came the next morning. Twelve hours later, the night nurse found Mom confused and incoherent. She called an ambulance and then called me in Boston. I had gone home for a few days as we experimented with different ways to deal with the middle-of the-night pump restarts. But I was also tempting fate. I had made three or four short trips to Boston that summer. Each time Mom had ended up in the ED, and each hospital admission, no matter how short, had taken its toll. This time, however, the good news from the oncologist had us feeling hopeful. So the sudden turn of events from optimism about the future to no future at all was dizzying, even shocking. At the same time, it was not surprising. The next thirty-six hours were a blur of phone calls with intensive care unit doctors and nurses. By the time I arrived early Monday morning, Mom's heart had failed, and she was on life support. She was almost unrecognizable—not the woman I had spent so many hours with, driving back and forth to Cleveland, singing along to Randy Travis. She was not the woman with whom, a week earlier, I had toasted the promised end to the TPN over fancy lemonade in the parking lot of a roadside barbecue joint. She had already left her body. I gave the doctor her "do not resuscitate" documents, and they removed the respirator. I still feel hollow when I think about it.I was simultaneously stunned with grief and utterly relieved. Like so many other family caregivers, I am still trying to reconcile the two. Irene Bogacki Beard died on August 23, 2021, eighty-four days after the first ED visit that launched our ordeal. The TPN port was likely where the infection entered. That radiant photo from El Carlos restaurant was published with her obituary. I was simultaneously stunned with grief and utterly relieved. Like so many other family caregivers, I am still trying to reconcile the two.The Long-Term Care Chasm Every year our health care system drafts fifty-three million people to provide in-home care for someone they love, according to a 2020 AARP report. That's one in five Americans. More than half of these caregivers say that they have no choice. Most in-home care providers are women (61 percent) and White (61 percent). Seventeen percent are Latino, 14 percent are Black, 5 percent are Asian American or Pacific Islander, and 3 percent report being biracial or another race. All are sacrificing sleep, income, educational and professional opportunities, and economic security. Few are paid for this work. Many in-home care providers are forced to leave their jobs or drop to part-time employment. Others continue working full time while providing daily care (sometimes for years). AARP conservatively values the annual collective cost of their thirty-six billion hours of work at $600 billion. Ohio's PASSPORT program allows Medicaid-qualified people ages fifty-five and older who are in need of in-home care to hire a companion of their choosing. This person can be a family member. But to qualify for Medicaid, you can have no more than $2,000 in assets. My mom's savings and investments were modest, but she wasn't eligible when she needed assistance. I was fortunate compared to many other caregivers. Living and working three states away was, bizarrely, a plus in my favor, as Ohio does not mandate paid family leave. Massachusetts is one of thirteen states (including Washington, D.C.) that require employers to cover full paid leave to care for a family member for up to three months. After that time was up, I would have had to take unpaid leave without benefits or quit. If the situation had progressed that far, I would have had to give up my apartment, switch from my employer-sponsored health insurance to a costly Consolidated Omnibus Budget Reconciliation Act (COBRA) plan, and cease contributing to my retirement savings—all terrible options, especially for someone in their late fifties. The long-term care situation in the United States will only get worse. By 2050, 22 percent of the population will be retired, according to the Census Bureau. Everyone living in the US will likely have to provide care for someone they love someday, and most of us will need similar care as we age. Although we are all unwitting members of this invisible labor pool, some are more at risk than others. People with excellent retirement investment portfolios, family wealth, expensive long-term care insurance, a passel of grateful children and grandchildren who live nearby, and delightful family relationships may be OK. The severity of the struggle to care for loved ones will break down along gender, racial, ethnic, and socioeconomic lines. Our long history of economic inequality and structural racism will place the heaviest burden on poor and middle-income families who do not have generational wealth. Black, Latina, and Asian American and Pacific Islander women will be hit the hardest. In October 2023, Senators Shelley Moore Capito (R-WV) and Ed Markey (D-MA) introduced the Alleviating Barriers for Caregivers Act (S 3109). Both senators referenced their family caregiving experiences in press releases. A companion bill (HR 8018) was launched in the House of Representatives in April 2024. Both pieces of legislation join similar bills awaiting attention, as well as President Joe Biden's 2023 Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers. This presidential and bipartisan support is heartening. Yet movement toward real change, if it happens at all, promises to be glacial—too slow for anyone currently struggling to keep their loved ones alive and healthy and their own lives and careers afloat. The executive order seems to be the most promising. However, a Department of Health and Human Services press release marking the one-year anniversary described "new momentum for growing and stabilizing the direct care workforce and improving support for family caregivers," but no specific actions. This is not enough. Some states are forging ahead with innovative programs of their own. The WA Cares Fund, a public long-term care insurance program in Washington State that all workers pay into, is the most comprehensive and is set to start providing benefits in 2026. Systemic transformation can only happen when truly innovative policies are funded and implemented at the federal level. The proposed legislation houses assistance for caregivers under Medicaid, Medicare, and Social Security, which will continue to push families into poverty instead of pulling them out of it. There is something fundamentally wrong with having to spend down or transfer your assets as a prerequisite for support. Because many policy makers and voters see long-term care, particularly for elders, as a family responsibility, the political will and urgency needed to create change are weak to nonexistent. The entire system is banking on our desire to be loving, grateful daughters and sons. As sociologist Sandra Levitsky argues, if we are ever going to reimagine social welfare as available to and benefiting all, we need to move beyond our prevailing cultural fixation on family responsibility. This emotional compulsion to care for aging parents because they cared for us when we were children is reinforced by the desperate knowledge that there are no other options. And it is predicated on women working in the home. So millions of Americans do what they must, thus perpetuating a social contract that has not matched our economic and family reality for more than fifty years.Transformative National Policy If someone had asked us in the summer of 2021 what we most needed to facilitate Mom's healing and well-being, our wish list would have been modest. Because a pump that always functioned properly all night was not an option, we would have asked to have someone nearby, on call, who could come in the middle of the night (possibly several times a night) to restart the pump. My mom lived in an apartment building for retired people. It wasn't a nursing home or assisted living facility. But most of the people living in the twenty-four apartments had limited mobility and other disabilities, and they likely could have used occasional assistance with small, health-related tasks. Having an available staff member in the building at all times whose job was devoted to helping all the residents with simple health technology assists and other tasks would have changed everything. It might not have prevented the infection that killed my mom, but her quality of life would have improved immensely.Three-plus years later, I want much more for all Americans: humane and pragmatic national policies that provide high-quality care to all who need it. Three-plus years later, I want much more for all Americans: humane and pragmatic national policies that provide high-quality care to all who need it. Such initiatives might include cash transfers, caregiving stipends that provide livable compensation, state-subsidized high-quality residential care, adult and child day care, and other supportive services. The WA Cares Fund may provide a helpful road map for a national program. Other examples abound in Scandinavia, Germany, the Netherlands, and Japan, either at home or in elder or dementia villages. In New Zealand, people in need of long-term care apply to their local district health board to have an assessor visit their home and identify their needs in conjunction with their doctors and family members. The assessor designs a care plan and assigns a service coordinator who organizes and monitors care. The United Kingdom protects patients who need long-term care assistance from depleting their wealth. The cost of care in all these places is funded through a mix of general government revenue, taxes, and insurance premiums. None of these examples are perfect, as each country anticipates future demographic challenges as a result of population aging. But we can learn a great deal from their experiences, from their policy and economic experiments, and from their collective understanding that we are all in the hot seat. We will all age. We will all need assistance someday soon. In her recent memoir, A Living Remedy, Nicole Chung describes her father's death as "a kind of negligent homicide, facilitated and sped by the United States' broken safety net and strained systems of care." The details of the health care morass Mom and I found ourselves mired in are different from Chung's. But we arrived at the same end: a beloved parent dead too soon from preventable causes and systemic failure. I now realize that the doctors in Mom's hospital room were not looking at me as they explained what was needed for her to be healthy and happy at home with TPN. They were looking at an idea of what a good daughter should be. Love and a Victorian sense of duty—that's what hospitals, insurance companies, and state and federal governments all bank on. Professor Jennifer Beard, who has a successful career and full adult life in another state, did not exist anymore. Instead, I was an unattached woman born to provide free family labor. At the time, I resented their assumptions. Now I see that they were also in a terrible position, one they face every day when they deliver the good news to a patient with complex health needs that they can go home. What I can't get past is that my mom died too soon from an infection that could have been prevented and, if caught earlier, treated. After my father and brother died, Mom could have succumbed to despair. Instead, at age seventy-eight, she embraced her new reality and started planning her future. She was determined to fight her cancer diagnosis, and she was optimistic that her TPN sentence would end soon. She might have gotten there but for a health system that provides little care, especially when it is most needed. Loading Comments... Please enable JavaScript to view the comments powered by Disqus. DetailsExhibitsReferencesRelated Supplemental Materials Article Metrics History Published online 3 December 2024 Information© 2024 Project HOPE—The People-to-People Health Foundation, Inc.PDF download