A Thought-Provoking Exploration of Aging and End-of-Life Care and A Review of Being Mortal by Atul Gawande
You have to be prepared for "that", my father's doctor told me when he called me out of the hospital room alone.
In May 2022, my father was hospitalized for a stroke, and I returned to his city to care for him for four months, the longest I had stayed in my hometown in over a decade. There were more than ten items in my father's discharge diagnosis. Multiple cerebral infarction and left-sided hemiparesis were the main reasons for this hospitalization, in addition to a carotid artery stent to hopefully unblock the narrowed carotid artery to prevent another stroke afterwards, in addition to chronic symptoms such as hypertension level 3 (very high risk), atherosclerosis, type II diabetes, hyperuricemia, post-stroke depression, and sleep disorders.
My father was 70 years old at the time and this was his third stroke, which completely took away his ability to care for himself. He had only one child, me, and my mother was unable to care for him while she was in post-stroke rehabilitation. So, during the time my father was in the hospital, it was my father's 80-year-old sister (also known as my aunt) and I who cared for him, and as family members, we felt very exhausted.
My father's condition was very recurrent and he also suffered many complications that we did not expect, and was in and out of the NCU (Stroke Intensive Care Unit) and ICU several times.
In a less serious case, he developed a urinary tract infection after surgery and had a low-grade fever for four or five days, which confined him to bed rest and delayed his rehabilitation exercises; in a more serious case, due to the need for dual anti-drug therapy (antiplatelet + anti-coagulation, aspirin and clopidogrel) after the stroke, and the prolonged bed rest and inactivity also added to his symptoms of constipation, hard fecal masses and suppressed coagulation, which led to several intestinal hemorrhages. One of them was so critical that his blood pressure dropped to 76/48 before he was admitted to the ICU due to intestinal bleeding, and I signed four critical care notices in the 24 hours after that. The doctor took me aside and whispered to me to be prepared for "that".
I knew what it was like to be prepared for "that" when the adrenaline was ready to explode, and I restrained myself from discussing with doctors from multiple departments, trying to be rational about what to do at that point. In retrospect, the decision to continue to "fight" or "let go" was not made by me, but by the medical staff. They made the choice for me - to try to extend precious life. I couldn't really be rational, because I didn't know what my father was asking for, what he could give up, how he would live, or survive.
It was then that I learned about a book called The Best Farewell, originally titled Being Mortal in English, which was published in 2014 by Atul Gawande, a surgeon who explores the challenges and choices people face as they age and approach the end of their lives. Referring to real-life cases he was exposed to as a surgeon and his experience caring for his own father, Gawande argues that modern medicine has limitations in dealing with end-of-life issues and offers insights into how we can improve care for people nearing the end of life - by putting the patient at the center.
More or less, I was hoping to find answers in this book, to find strategies that would give me the weapons of thought to deal calmly with what I needed to face when "that" situation finally came.
Some of the things I am already dealing with are my father's retirement and life after he is discharged from the hospital.
At home, tormenting each other
After being discharged from the hospital, my father was barely able to take care of himself; he was unable to move his left arm or leg and could not walk on his own, so he could not go to the toilet by himself, could not sit up by himself from a lying position, could not bathe by himself; the only activities that were still possible were rolling over and eating. He could still move his right hand. After we put a bowl of rice in front of him, he could put the rice into his mouth by himself with a spoon, usually letting the food spill all over. Then we made him wear a bib with him, which he was not happy with, but there was no way around it.
We hired a live-in caregiver to take care of my father. My original plan was that at first the caregiver and I care my father together for a while, and then I would return to the city where I work after the caregiver became familiar with the environment.
The caregiver we hired was very professional and had worked in a nursing home. He was conscientious and responsible, he quickly adapted to the environment, kept accurate time records for my father's oral medications and insulin injections, and in addition, he was very good at cooking and preparing food.
But in fact, we found that it didn't work. My father always woke up at 2 a.m., screaming to pee, but when I put the urinal in the right place and waited for him to pee, five minutes passed, ten minutes passed, twenty minutes passed and he still couldn't pee. So I thought I'd give up and dragged my sleepy body back to bed to rest. But within five minutes, he was screaming to pee again, but he still couldn't get it out, and the cycle continued through the night.
Sometimes he would scream for the fan to be turned on, sometimes at 4:00 a.m. he would scream for his teeth to be brushed, he would scream for sleeping pills, mostly he would call my name, he would call the caregiver's name, and occasionally he would call the name of the caregiver who had taken care of him during his previous hospitalization - as if my father didn't know he was out of the hospital, didn't know day from night , unaware that he had taken sleeping pills.
In such a situation, the caregiver and I could not rest during the night but still needed to continuously care for my father during the day. Sometimes, we chose to ignore my father in the middle of the night, only to have him pick up his cell phone and call my aunt, who had a high blood pressure attack as a result.
In just a few days, we came to the brink of collapse, and the final blow was his bowel problems. After three days without a bowel movement, we had to manually intervene - straining to pass stool if it was constipated could easily trigger a stroke - and we injected glycerine enema into his anus, then intended to pick out the dry, hard stool by hand. This process was very uneventful and later evolved into a disaster.
It was a short period of co-residence and an attempt at in-home care. I was facing an increasingly unsustainable situation and had to make a choice between my life and work, which I was gradually losing control of, and my dear father, who was becoming increasingly vulnerable and dependent.
In the book Being Mortal, I read an almost similar scenario with the story of Lou and his daughter Shelly. 88-year-old Lou lives with his daughter Shelly, who also needs to take care of her own children who are in high school, and her husband who has been unemployed for a year and a half. Shelly's job is not just a caregiver for Lou, but "a 24/7 janitor and driver and schedule manager and medical and technical problem solver, as well as a cook and waitress and waiter, not to mention a breadwinner".
She wanted to be a good daughter, she wanted her father to be safe and she wanted him to be happy, but she also wanted a life she could control. One night, she asked her husband if she should find a place for the elderly. She felt ashamed just for having this thought, which broke her promise to her father.
Trapped in a nursing home
We had to put my father into the care of a nursing home where the caregivers had more experience in dealing with these situations (such as bowel problems for constipated patients). In the stairwell, I discussed it with my aunt and the head of the home care company where my live-in caregiver worked, and we couldn't imagine a better option.
According to China's urban hierarchy, my father's city has a resident population of 940,000, which is very close to a Type II city, and there should be sufficient resources in terms of supply and demand for senior care, but we had no luck in finding a suitable institution.
The first nursing home we looked at was recommended by the home home care company, and the owner drove us to visit the home himself. The environment was terrible, with dark corridors, small rooms, rotten smells, open kitchens, old people stuck in beds, some of them wearing scratch-resistant gloves, and a lifeless look - it made you feel like it was a zoo, just cages, and chains.
We also tried to find a public nursing home, but the public institutions here only accept orphans, which means they will only accept elderly people who have no one to support them.
Next to a public nursing home, we found one that was considered good. It is in an 11-story building, where the 2nd-5th floors are a Level I hospital with geriatric specialists and rehabilitation rooms, and the 6th-11th floors are a nursing home, with "medical care" as one of its selling points. The nursing home's caregivers provide day and night care, while doctors and nurses from the hospital downstairs can go directly to the nursing home to provide medical assistance if needed. The environment of the nursing home is not bad, at least it is bright and clean. We were hesitant to make the decision that "this is the place".
But how to tell my father - who had just left the hospital and returned to his home - that he needed to go to a nursing home? Then the director of the nursing home came and acted as the "bad guy", she came to my father's home to check his condition and had a talk with him. My father did not object, and he accepted the arrangement.
The person in charge assessed my father's level of care, which was the highest level of care, and then gave him a COVID-19 test and told us that the nursing home would send a car to pick us up the next day.
The last night I lived with my father was one of the quietest nights since he came home, and he hardly made any more screaming. I even had the thought that he wasn't showing through his actions that he could be quiet at night (in fact he didn't fall asleep) and not disturb everyone's sleep so that he wouldn't have to go to the nursing home.
The next morning, the nursing home sent an ambulance to pick him up, but getting downstairs became a problem. My father lived on the fourth floor, and there was no elevator in the old house, so we had to carry him downstairs on a stretcher under a blanket, with four people each holding a corner of the blanket. After the tedious signing of papers and a will, and the shopping for waterproof mats and some household items, I finally had a moment of peace.
I seemed to be relieved from the dilemma of caring for my father for a while, but he wasn't. I have never been able to accurately describe my father's experience in the nursing home; I just noticed his eyes growing dull until I came across the description of the author's wife's grandmother Alice's situation in "Being Mortal":
They told her they hoped that with physical therapy she would learn to walk again and return to her house. But she never regained her ability to walk. Since then, she has been confined to a wheelchair and subjected to a stereotypical convalescent life.
She lost all privacy and control. Most of the time she wore a hospital gown. She woke up when they woke her up, bathed when they arranged for her to bathe, dressed when they told her to dress, and ate when they told her to eat. She lived with someone who had been placed in the facility. She had several roommates, but she was not consulted by the facility when they moved in. All of them had cognitive disabilities, some were quiet, some were rowdy, and one even kept her up all night. She felt like a prisoner, cast into prison simply because she was old.
This was the same state my father was in, and we (me, my mother and my aunt) all thought that with rehabilitation, my father could regain some ability to walk. Because during his hospitalization, after the stroke was stabilized and before the intestinal bleeding occurred, he was able to walk from the bedside to the bathroom holding the handrail. And his own laziness in not following the protocol for completing the rehabilitation program - only doing three minutes of a twenty-minute pedaling program and then wanting to stop - was the reason he did not eventually regain the ability to walk. We all seem to blame him for this problem.
The "prison-like" lifestyle of the nursing home was the result of well-intentioned protection that greatly suppressed the preservation of self-reliance and dignity. This is not the case of my father alone; other elderly people with similar levels of self-care are in the same situation. Nor is this a problem in China; in the United States, in India, when medical care has advanced to a certain point, everyone encounters this problem - people are less likely to die suddenly, but slowly move toward the end of their lives as they age and become frail and lose the ability to care for themselves, and how this journey should proceed is something that society as a whole needs to think about.
When to let go
After three months in the nursing home, all of my father's physiological indicators had improved dramatically. His blood sugar was gradually returning to a reasonable range and his blood pressure was under control at a safe level for his age, but he was not happy.
He may have made one or two new friends, and he would play chess with the rehabilitation physician, but more often than not he was confined to lying down or sitting in a wheelchair. His only pastime in the nursing home was drinking water or milk, so he frequently rang the bell to call the caregiver to pour him water, and when the caregiver didn't have time to respond - he would call me or his aunt, day and night.
What kind of path has led us step by step to the present situation. I even questioned the rightness of giving my father a carotid stent; was it essential treatment?
I think what we are missing is the "hard conversation" mentioned in "Being Mortal" - about my father's expectations.
I still don't quite understand my father's attitude toward death. He spent a lot of time in the hospital saying things like "let me die" and "I want to be euthanized," but at the moment when he was bleeding profusely from his intestines, blood and feces were pouring out of his anus from time to time, and he was in shock, he said "It would be a shame to die like this".
When my father was pushed into the ICU and the doctors told me to be prepared for "that", I had one simple thought in mind - to let him live as long as I could financially afford it.
But that wasn't true. I didn't understand my father's need for life and death.
In the book Being Mortal, I read about the concept of "end-of-life wishes" and how, before that moment in life, we need to answer these four questions:
If your heart stops, do you want to be resuscitated?
Are you willing to take aggressive treatment such as intubation and mechanical ventilation?
Are you willing to use antibiotics?
If you cannot feed yourself, are you willing to take nasal or intravenous nutrition?
Of course, the discussion itself is more important than these questions.
I am not too sure about my father's wishes, we have talked about body donation and the disposal of ashes. But I only had a superficial idea of "how to die," or "how to live well until death," and that was that he wanted to die without tubes all over his body. I knew this, but I was not able to convey this wish to the ICU doctors.
The book mentions a palliative care specialist, Susan Block, who had a conversation about whether her father, Jack, needed a procedure to remove a cervical spinal cord mass when he was 70 years old:
She told him, "I need to know,** how much you are willing to endure in order to earn a chance to live, and what level of survival** you can tolerate." The conversation went very painfully. He said: "If I can eat chocolate ice cream and watch televised soccer, then I'm willing to live. I would suffer a lot if I could have that opportunity." When he heard this, Brock was completely shocked ......
The conversation proved crucial, because after the surgery, he suffered a bleed in his spinal cord. Surgeons told her that they would have to do another surgery to save his life. But the hemorrhage had left him nearly paralyzed, and he would be severely disabled for many months, and likely forever. What did she hope to do?
"I had three minutes to make a decision. I realized that he had actually made the decision." She asked the doctors if her father would still be able to eat chocolate ice cream and watch soccer games on TV if he survived. Yes, they said. So she agreed to let them operate on him again.
What happened, for me, can no longer be changed. Although I read "Being Mortal" only after everything had happened, he at least gave me a heads-up that I could still prepare for the future by saying:
I should also have a conversation with my father about what he expects from life and death, before "that" happens again.
As for myself, I may not be as fortunate as my father, who at least has me as a child to take care of him, while I don't plan to have children, and what to do with my life is a path I need to explore.