Three months ago, my father Andrew Shih Lun Bau passed away, peacefully, in his own home. Next week, on Christmas Day, we would have celebrated his 93rd birthday.
As someone who now seeks to improve both health and health care for all, I learned many lessons about health and health care from my father over the course of his long and full life. I also learned a lot about life, and about dying with dignity and grace.
I learned from my father that health truly is not just the absence of disease, but optimal health and well-being. He had both a difficult and interesting life, leaving his native China at age 27, and spending the rest of his life in Japan, Hong Kong, and the United States, learning to speak, read, and write the Japanese and English languages along the way. In Japan, he was a post-World War II Allied Occupation civilian employee and then a small businessperson, creating success for himself and his business partners in international trade, a restaurant, and nightclub.
For the rest of his working life in Hong Kong and the United States, he worked for a multinational Japanese company, quietly doing his job as an accountant for decades, eventually retiring as the manager of the local accounting division.
For his entire life, he keenly felt responsibility as the oldest son in his family for his mother and four younger brothers still in China. Only as an adult did I begin to appreciate the life-long burden this was on my father. He always seemed to know the latest news about all the family members, whether they were in China, the U.S., or working somewhere else in the world. He discovered inexpensive calling cards so that he could call his brothers (and my mother’s sister) regularly in China. One of his greatest joys later in life was having two of my cousins decide to settle here in the U.S. and raise their families here, strengthening the family connections across the two countries.
And when it came to our family, my father the introvert became an eloquent storyteller, with endless stories about this or that family member, sharing snippets of his own past that he gradually revealed with more and more detail with each re-telling. When we describe the importance of family in our Chinese or other cultures, I think about my father’s role and identity as the family patriarch for so many decades and now, so many generations.
In my childhood, I only knew my father as a hard-working and emotionally distant man, who rarely smiled or laughed, but ran our household efficiently. Like many immigrant parents, he and my mother constantly pushed us three children to study hard and to take advantage of the opportunities America promises. My father, with only a high school education himself, was proud to see his wife earn a master’s degree at age 41, and all three of his children graduate with master’s degrees.
My mother’s success as a teacher was soon eclipsed by her cancer diagnosis. I watched as my father took my mother to her medical appointments, and in and out of the hospital, trying to support my mother as she endured the side effects of early, often still experimental, radiation and chemotherapy treatments. During that time, my father was even more quiet, trying to maintain as much normalcy for our family as he could. Neither he nor any of us children knew, or could talk about, what it meant to be a family caregiver – or to watch helplessly as your loved one slowly lost the long battle with cancer.
After my mother died in 1974, my father asked me five months later what I wanted for my 15th birthday. I told him that I wanted him to quit smoking because I wanted my only surviving parent to live a long life. So at age 55, my father the life-long smoker quit smoking that week, and never smoked another cigarette in his life. I didn’t know at the time how effective I had been as a smoking cessation advocate. And that I received my birthday wish, with nearly 40 more years of his life.
After his retirement, my father seemed to become a different person. He took up the arts, beginning with Chinese brush painting, and then pottery, and finally stained glass making. I marveled at how the unemotional, always rational, life-long accountant slowly began to “paint outside the lines” as his art evolved from controlled pieces to become more and more expressive and playful. To this day, I can tell the time period of his dozens and dozens of pottery pieces. The first, older ones have solid (dark) color glazes in the shapes of ordinary bowls and plates. The latter pieces have less conventional shapes (with lips and curves and odd shapes and sizes) and the glazes are lighter and more colorful (some even have more than one color!).
Through the years, my sister, brother, and I were at my father’s side as he experienced, and then survived, his own health issues. He had colon cancer, a bleeding ulcer, pre-carcinoma in his stomach, hypertension, then hypotension and recurring syncope. He gradually lost most of his eyesight through macular degeneration, and became increasingly physically frail. Yet my father continually demonstrated a remarkable resilience and adaptation to each change in his health – being unable to drive, walking with a cane, and then a walker. We were blessed that until the week he died, his mind was crystal clear, and his memory was encyclopedic.
As my father grew older, he became a more and more frequent user of health care services. I became the family member who most often accompanied him to his medical appointments. He was an ideal patient, always taking his medications, remembering and being on time (or early) for his medical appointments (and having the $10 co-payment ready in his wallet), even taking his blood pressure reading twice a day and recording it meticulously in a calendar (he was a member of the quantified self movement before it even had a name!).
I began to refer to my father and his second wife, my stepmother – who also has multiple health issues – as my personal, continuous “focus group of two.” I would read all the correspondence they received from their health plan or Medicare and marvel at how incomprehensible and generally ineffective almost all of it was (did they really expect someone to read all six pages of the letter in small print, especially an older adult?). I would help them fill out patient experience surveys, and then get frustrated at the vague and often culturally inappropriate wording of the survey questions.
More revealing to me as the policy wonk was to see how policy changes were implemented in practice. As an advocate for interpreter services in health care , I saw how access to health care interpretation began to be operationalized during all the hospital admissions for my father and stepmother. First, I would notice the appearance of a dual handset phone for health care interpreting, then more and clearer signage about the availability of interpreters, and then witness the hospital staff health care interpreter “rounding” on the patient floors, introducing herself to patients (in Chinese) and asking if they needed anything.
When I took my father to his primary care provider, I asked his medical assistant about which electronic health record system they were using and whether she liked it. My father’s physician was able to pull up scanned copies (not yet structured electronic data) of hospital discharge instructions and lab results for my father. But this physician had not yet begun to use electronic prescribing, never conducted an electronic medication reconciliation, nor used many other functions of his electronic health record.
When we switched primary care providers for my father and stepmother to an internal medicine physician who specializes on care for geriatric patients, I witnessed a highly functional patient-centered medical home in operation. For the initial visit, I had prepared and brought with me a stack of copies of my father’s past hospital discharge instructions, lab results, list of diagnoses, medications, and my version of my father’s medical and social history. The physician looked at the papers and thanked me for bringing them but did not read them. Instead, she turned to my father and said, “Good morning, Mr. Bau, how are you? Can you tell me about yourself?” I was delighted that this physician prioritized her precious time with her new patient rather than reading the documents the patient’s son had brought (of course, this physician did read and digest all the documents and would refer to them in my father’s future visits and course of care).
This physician would make periodic home visits to my father, bringing her laptop computer so that she could wirelessly access past lab reports and other contents from my father’s medical record while at his house. When my father was unable to see her at her office clinic, she sent her nurse to his home if she could not come herself. She got occupational and physical therapists to make visits to his home to assess how my father’s daily routines could be improved. She prescribed, then adjusted, anxiety and depression medication to address his mood shifts as he became increasingly frail and frustrated about tasks he could no longer do for himself. She electronically sent all her updated prescriptions for my father to his neighborhood pharmacy (which then printed labels and instructions in Chinese). She had terrific office staff that seamlessly obtained all needed prior authorizations from my father’s health insurance plan. She corresponded with me as one of my father’s caregivers by email, never taking more than 12 hours to respond to my questions or updates.
So while my father had been a regular user of the emergency department and had been hospitalized frequently, since this primary care physician took responsibility for his care in November 2011 to the day he died, he was able to avoid any emergency department visit or hospitalization, despite his rapid decline in health. As accountable care organizations and payment reform demonstration programs struggle to achieve cost savings, this physician was able to minimize the health care costs that my father would ordinarily have incurred through her very patient-centered approach to his care in what ended up being the last ten months of his life. And he received what I felt was all the health care that was needed, and the highest quality of health care that could be expected.
The last lesson that I learned from my father was how to die with dignity and grace. Death is difficult topic in many cultures. In our American culture, which values individual autonomy, agency, and “freedom”, we are only beginning to use documents such as durable powers of attorney for health care decisions, advance health care directives, and physician orders for life-sustaining treatment to discuss, and then document a patient’s wishes about his or her end-of-life care. In traditional Chinese and many other cultures, these decisions are not to be made just by the patient, but collectively as a family, often with the family elder (or the one with the earliest birth order, like the oldest son), being the final decision-maker. Without these discussions and this type of documentation, both health care providers and family members are left trying to second-guess the wishes of the patient, and when there are differences of opinion, trying to reconcile those differences when they literally have life and death consequences.
What my father taught me and my family in the last year of his life was that he knew exactly what he wanted and needed for his comfort – and for his eventual death. He was able to communicate to us both verbally (in remarkably direct ways, given how quiet and often not very communicative he had been all his life), and non-verbally, what he wished. He was surprising blunt about his advance directive and physician orders for life-sustaining treatments. He didn’t want his life to be artificially prolonged, he didn’t want to go to the emergency department or hospital, he wanted to die at home.
For many months, my father resisted the idea of us bringing a hospital bed into his bedroom because when we had brought one to the same bedroom for my mother 38 years ago, she died a few days later. My father was not ready to die, so he was not ready for the hospital bed. But exactly two weeks before he eventually did die, he agreed to have a hospital bed brought in. Having the hospital bed meant he was much more comfortable and made our caregiving much easier in those last weeks, but it also was his way of telling us that he was ready to die.
We decided to use the outpatient services of a hospice organization, which immediately sent a nurse and a social worker out to my father’s house once they were called. They prescribed and monitored anxiety and pain medication to make sure my father would be comfortable. They sent a home health aide to help change and bathe him. Perhaps most useful, they had a phone advice line available 24 hours/7 days a week to answer our questions about how best to care for my father in his last days.
In the last days of my father’s life, I would often spend long hours with him, sometimes staying awake through the night. I never have been a parent, but had a few nights of waking up every hour to check on a loved one. In those last days, our roles as parent and child were totally reversed as I fed my father, changed him, tried my best to comfort him. I am grateful that two days before he died, after a long bout of restlessness and discomfort, I was finally able to get him calmed down and tucked in. My father then said to me (in Chinese) “thank you, I am comfortable now.” Those were the last words my father said to me before he slipped into unconsciousness, and then passed away. I now appreciate that even those last words from my father was his last gift to me – of reassurance, of gratitude, of permission to let go…
Today, three months later, I still very much miss my Dad.
I miss hearing his voice, and talking with him almost every day. His voicemail messages were always the same (even after he knew he was calling my mobile phone and not my home phone): “Hello, it’s me…where are you? Nobody is home? OK, call me back. Thank you.” I miss thinking about what I am going to cook for him or bring him to eat. I miss watching him still enjoy his food, trying to see (with his failing eyesight) a recent picture of one of us family members, or hearing a story about something one of us had done, or where we had traveled lately.
But most of all, I will miss the lessons that I had yet to learn from my father about health and health care, about life and death.