The first time I lost my dad was in 2010, just a few weeks after his 62nd birthday. On a Sunday morning in December, he called me from his local emergency room in Pennsylvania. His speech was slurred and, as my heart pounded with dread, I knew immediately what he was about to tell me. He had suffered a stroke.
The stroke made it difficult for him to speak clearly, use his dominant hand, remember new information, and think critically. In an instant, I lost the precious parts of my dad that connected us. He was no longer the parent who could give me advice when I was feeling down, tell me a funny story about his day, or debate with me for an hour about the current political climate. He was simpler now, often dependent on go-to phrases such as “We’ll see” and “I’m OK” during conversations. He had survived the stroke, yet I missed him terribly.
With the help of visiting nurses and caregivers, my dad lived in his home for eight more years. But after a couple minor heart attacks and an emergency bowel obstruction, he had reached a tipping point. He needed 24-hour medical support so, in February 2019, he agreed to move to a nursing home near my house in Massachusetts.
His first few months there were brutal. Another heart attack, a gall bladder infection that turned into sepsis, and three more bowel obstructions brought him to the hospital five times, each time leaving him weaker than the last. By May, he was unable to walk or dress himself, and we lived in perpetual fear of the next medical emergency. His nursing home staff helped him update his advance directive, as he no longer wanted any invasive procedures, like intubation or nasogastric tubes.
My dad’s body was failing, and I wanted answers. I decided to speak on my own with his cardiology, surgical, and intensivist teams about his prognosis. End-of-life care was on the forefront of my mind but, to my surprise, his physicians never mentioned it.
“We can’t predict the future,” one of his cardiologists said. “People can live for a long time with these medical issues.”
Yet my dad’s life continued in the same pattern — living in a revolving door between the hospital and the nursing home — always waiting for the next bomb to drop. And boy, did it drop.
In November, he had yet another bowel obstruction, this one requiring emergency surgery. My dad was suddenly faced with a life-or-death decision, and despite his advance directive, he wasn’t ready to die. He agreed to the operation.
The procedure had to be performed in stages due to his failing heart. His surgeons couldn’t tell us how long it would take to complete the surgery, as each operation was dependent on how much stress his body could handle. For the next three weeks, he and I took turns consenting for his surgeries depending on the day and his level of consciousness.
By the time the surgeons had finished, my dad had endured eight operations. He had a 9-inch incision extending across his abdomen, which was left open for fear that closing it would cause a life-threatening infection. He had three tubes coming out of his abdomen, two of which were deemed permanent. He was battling pneumonia and deep stomach ulcers, and his doctors were still planning more procedures.
Stuck in the intensive care unit for weeks, my dad was exhausted. Most days he could barely answer his phone and, when he did, he had nothing to say. During one of my visits, I asked him if he would have agreed to the procedure if he had known it would take eight separate operations. His eyes dropped to his chest, and he shook his head no. This extreme form of medical care began feeling to me more like a form of torture.
I once again asked his doctors for guidance, and once again they met me with the same vague responses. “There’s no reason he can’t recover eventually if he doesn’t have any more complications,” one of his surgeons said.
I was beyond baffled. After six life-threatening hospitalizations in nine months, my dad had become even less able to function independently. Yet none of his physicians would entertain the subject of end-of-life care with us. Instead, they recommended I speak with the palliative care team.
I first met with a palliative care attending doctor and fellow, both of whom were kind and empathetic. They promised to visit my dad regularly to understand his wishes for continuing treatment and to call me weekly as his condition changed. During the first week, they followed through on their promises. The attending called to let me know my dad had changed his status back to “do not intubate.” Then we hit a roadblock.
My dad’s condition worsened again and his surgeons recommended a “lifesaving procedure” that would require a temporary breathing tube. It was as if the limits my dad had just set about intubation were merely suggestions instead of written orders.
Feeling conflicted and pressured by his doctors’ recommendations, I paged palliative care for advice. But I didn’t hear from them. In fact, I didn’t hear from them for the remainder of my dad’s hospital stay. Once again, he and I were left alone to navigate the costs and benefits of continuing treatment.
I spoke with Dr. Jeffrey Schnipper, a friend of mine and research director for the Division of General Internal Medicine and Primary Care at Brigham and Women’s Hospital, about the disconnect I had observed between my dad’s worsening state and his doctors’ unrelenting hope. “Unless doctors are told otherwise,” he said “they will do everything they can to prolong someone’s life.” He acknowledged that many medical practitioners are not trained to handle conversations that focus on quality of life or relief of pain and suffering, and instead lean toward recommending their own treatments. “If you’re a surgeon, for example, you may be biased to believe your surgeries will work.” This can leave family members confused as they navigate major care decisions.
To make matters more challenging, many patients, like my dad, have diseases that lack a clear prognosis. As Schnipper explained to me, “Oftentimes, patients with multiple, chronic medical problems will experience a series of acute illnesses with incomplete recoveries, and while each episode may look treatable, the overall course is one of decreased function and decreased quality of life. But just because someone’s prognosis isn’t predictable doesn’t mean that medical professionals can’t initiate goals-of-care conversations to understand their patients’ wishes and values.”
A study by Texas A&M University researchers found that the reluctance to initiate palliative care conversations happens on the patient side as well. Many patients, especially those with serious diseases, describe what is called hostage bargaining syndrome, whereby they’re too intimidated by their doctors to push back on treatment recommendations for fear of offending them or challenging an authority figure.
As my dad’s health care proxy, I certainly experienced this. I felt ineffective challenging his doctors because I didn’t have the medical background to know whether their recommendations were necessary, or if there were alternative options. But it’s this inability to speak honestly or advocate for a loved one that contributes to the lack of meaningful and valuable treatment plans that reflect a patient’s wants and needs.
By the time a palliative care team gets involved — assuming that ever happens — many medical decisions have already been made that aren’t consistent with a patient’s quality-of-life goals. With a shortage of trained palliative care professionals across the U.S., our health care system can’t rely solely on this specialty to help patients and families advocate for treatments that align with their wishes.
I believe that every physician who works with acutely ill people needs to be trained in having goals-of-care conversations with their patients, and these conversations need to happen early and often. In my dad’s case, this conversation should have started during his first hospital visit after moving to Massachusetts and continued through each subsequent visit.
This work, of course, shouldn’t all fall on doctors’ shoulders. Patients and their family members need to be having conversations with each other about their wishes, ideally before a significant medical event even occurs. A better understanding about how my father would have wanted to live and the minimum quality of life he would have found acceptable would have given me the confidence to push back on his physicians much earlier.
In the end, after all of his surgeries, hospital-related complications, and nearly a decade of battling chronic diseases, my dad and I decided together that it was time to start hospice care. He passed away four weeks later, peacefully and in no pain, listening to Frank Sinatra and surrounded by people who love him. It was exactly what he wanted.
Aimee Gindin is the director of account management at Magnetude Consulting and a freelance writer.