My dad is a wonderful man, a former tax accountant who shared his passion for tennis by teaching young men who lived in the South Bronx to play. He retired early to introduce others to meditation and other methods of stress reduction that he had found helpful, and he ended up as a volunteer community mediator.
In October 2013, just a few months after giving up playing tennis, my 88-year-old father was diagnosed with Stage 4 prostate cancer. He responded well to the hormone treatments, but by May 2014 his prostate had gotten so large that he had difficulty peeing. Although he liked saying, “I don’t like to brag, but I have a HUUUGE prostate,” this condition had become dangerous; the blockage began to cause kidney failure.
My dad’s urologist gave him two choices: He could either live with a catheter (a tube inserted into his bladder) for the rest of his life, or he could have surgery to trim his prostate to create a channel for the pee. After hearing that sporting a catheter would end his table tennis career and that he’d have to spend only one night in the hospital if he chose surgery, my dad overcame a long-standing fear of germs and elected to have the surgery.
Because my mother’s immune system was shot from having chemotherapy for lymphoma, mine were the boots on the ground at the hospital. Despite not being a clinician, I felt well equipped by my almost 20 years working for the Agency for Healthcare Research and Quality to serve as my father’s health-care proxy.
The surgery went well, but the next day there was too much blood in my dad’s pee. He had to stay in the hospital an extra day so they could flush the blood out while the catheter was still in place.
On his third day in the hospital, my father was pronounced ready for a “voiding trial.” They pumped a liter of fluid into his bladder, removed the catheter and waited to see whether he could pee. However, my dad felt no urge to go. Even after drinking cup after cup of water and sitting with a hand-held urinal for several hours, he couldn’t get anything out.
It was early that afternoon when I noticed that he was having some difficulty speaking. He was clearly trying to say something but couldn’t come up with the words he was searching for.
I pointed out the problem to the urology nurse practitioner. “Dad, what are you trying to do?” I asked him.
“Well, I’m trying to . . . ” His words trailed off. “You see, I’m making an effort . . . I’m . . . ” He couldn’t say, “I’m trying to pee.”
The nurse practitioner suggested that we call the stroke team. Although I didn’t think my dad had had a stroke, I knew I might be attributing the symptoms to other health issues, which frequently happens to stroke victims in hospitals. So I agreed, and the nurse called in the stroke team.
Fifteen minutes later, half a dozen neurology residents were swarming around the room. One of them performed the standard stroke assessment. The next thing I knew, they were rolling my dad out the door.
“Where are you taking him?” I asked.
“To the ER to give him tPA,” the lead resident answered as they wheeled him down the hall. I knew what tPA was: Tissue plasminogen activator (tPA) is a stroke-treatment drug that busts up clots that block the flow of blood to the brain. But I was not convinced that my dad was having a stroke.
“But I haven’t consented,” I called after them.
“This is an emergency!” they replied and kept going.
I stood my ground. “I’m his health proxy. You’re NOT giving him anything without my consent, and I haven’t consented!” That stopped them.
“You’re right,” the resident said, backpedaling. “Could you come with us while I explain?”
As I trotted alongside them, the resident explained that my father had had a stroke, that there was medicine they could give him to break up the blood clot but that there was a short window of time in which the medicine could be administered.
How, I wondered to myself, could they be so sure he’d had a stroke? Did they know my dad had been too shaky on his feet to take a walk that morning, that he had not eaten until the nurse made him have a yogurt midmorning and that he later threw up his lunch? Did they know that he hadn’t slept much the past two nights?
Could it be that his full bladder was causing his kidneys to go toxic again? I’d seen my dad get fuzzy when he had a bladder infection – maybe that was the problem. Or maybe the exhaustion from trying to pass the “voiding trial” and the worry about the pain he’d feel if they had to put the catheter back in were affecting my elderly father.
Maybe I’d watched too many episodes of the medical drama “House,” but it seemed as if the doctors hadn’t ruled out other possible causes of my dad’s symptom. They hadn’t asked me anything about his history other than the time of the onset of symptoms. I was worried that these neurologists in training might see a stroke where there wasn’t one because that’s what they were looking for.
“Why are you so sure it’s a stroke?” I asked the lead resident. “Was there anything other than the language problem?”
No, the resident answered, there was nothing else.
On the way to the emergency department, we stopped for a CT scan to make sure my father wasn’t bleeding into his brain, which is a counter-indication for administering tPA. All I had heard thus far was how tPA could reverse stroke symptoms – no one had told me about any potential downsides. I asked the stroke team about the risks from tPA if my father was not having a stroke. I was told there was a small risk (on the order of 1 percent) that tPA would cause him to bleed into his brain, which could either kill him or leave him severely impaired. No one bothered to mention that the risk of a catastrophic brain bleed from tPA was even greater if he was in fact having a stroke. Or that there was a risk of a noncatastrophic brain bleed. And no one told me what might happen if we didn’t give him the medicine.
The CT scan showed no bleeding. As we moved quickly on to the emergency department, I was pressed for my consent to give my father tPA.
“It’s the standard of care!” the resident kept hammering at me. “We’re running out of time.”
I repeated that I had not consented and proceeded to call my mother. While I was on the phone explaining the situation to her, a senior neurology resident interrupted me to make sure I really understood that time was running out. I put my mom on speakerphone so she could hear what the senior resident had to say, which was what I’d already been told: that tPA would break up the clot, that tPA was the standard of care and that it was critical for my father to get the medicine right away.
After I shooed the resident away, my mother gave her opinion. Maybe it was just that tPA had received good press coverage, she said, but she wanted my dad to get the medicine. So I consented. It was barely within the three-hour treatment window when they administered the drug.
Shortly after receiving the drug, as my dad was being wheeled up to the neurology unit, he sat halfway up with outstretched arms, shook violently and then lay back down. “He’s having a seizure,” someone cried, at which point he seized a second time.
The tPA caused my father to have an intracranial hemorrhage – he bled into the right side of his brain. Throughout the rest of that night in the neurology intensive care unit, he shook uncontrollably, didn’t appear to understand us and couldn’t communicate at all. Tears streamed down my face.
What had I done? Had my mistake been to allow them to give him the tPA? Or had it been in questioning its administration in the first place and losing valuable time? Why, despite being an expert on health literacy who was developing training modules to improve informed consent in hospitals, had I been unable to come up with the questions to get the information I needed to make a truly informed choice in a timely manner?
Since that time, I’ve thought about what happened and how hospitals could improve.
For the average patient meeting specified stroke criteria, clinical trials have shown more benefit than harm when tPA is administered within three to four hours of the first symptoms. The earlier the patient receives the medicine, the better the results. This creates both intense time pressure and the impression that there is no time to spare to consult with patients and families.
The impression is a false one. There is time for patient and family engagement, but it has to be integrated into treatment protocols. The stroke protocol, for example, could dictate that while the patient is being evaluated, a member of the stroke team gathers information from family members.
Doctors are the experts in medicine. Patients and their families are the experts in themselves and their bodies. The neurology residents who evaluated my father for stroke should also have been asking me what my father was normally like, whether he had ever experienced symptoms like this before and whether I knew of anything that might account for his current symptom. This time could also be used to alert the family that a decision might have to be made quickly and find out whether any other relatives should be involved in the decision.
The protocol could also specify that during the CT scan, the family be briefed about the results of the evaluation, the purpose of the scan and the upcoming decision about whether to administer tPA. Had the residents taken more seriously my doubts about whether my dad had had a stroke and my concerns about the treatment, they might have told me that they had checked my father’s blood sugar level and that there was a second symptom of stroke they hadn’t told me about. Instead, valuable time was wasted.
In the next step of the protocol, the doctor would sit down with the patient and family, elicit their goals and preferences and go over the benefits, harms and risks of the options, including the option of no treatment. Giving me tailored risk-benefit calculations would have allayed my concerns that the treatment they recommended was dictated by a rule of thumb instead of my father’s particular situation.
The final step of the protocol would be to check that the information had been understood and to help the patient and family make a choice. Everything could be accomplished in a short amount of time if the process was streamlined and roles were clearly delineated.
Many hospitals do not even follow the basic tenets of informed consent when delivering tPA. To turn informed consent into informed choice, hospital leaders need to make clear communication an institutional priority.
Some people would argue that stroke treatment is not an area that should be subject to shared decision-making. They would say that the science is clear and that a doctor’s objective should be to administer the medicine as quickly as possible. But I believe that patients and family members have an important role to play, even when decisions must be made quickly.
My father was lucky. He got back most of his functioning after the brain bleed, although he can play table tennis only while sitting down and can no longer go outside by himself because he is a fall risk. The doctors are pleased with the outcome, but I’m dismayed with the process.
When the residents gave my father a stroke diagnosis, I needed someone to serve as an unbiased interpreter of the evidence, to recognize my knowledge of this particular patient and to ask about our values and goals. I needed someone to acknowledge that we faced a hard decision, that there were no guarantees and that it was ultimately our choice. Health-care systems can and must do a better job.
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Brach is a senior health policy researcher at the Center for Delivery, Organization, and Markets at the Agency for Healthcare Research and Quality in Rockville, Md. This article was excerpted from the journal Health Affairs and can be read in full at healthaffairs.org.