In the spring of 1989, my mom called the manager of the World Series champion Los Angeles Dodgers, Tommy Lasorda, on the dugout phone during an exhibition game in Florida.
For months, she had been trying to get her 18-year-old son (me) an autographed photograph of the reclusive pitcher Sandy Koufax with a personalized comment, as a surprise gift. Dozens of calls and letters went unanswered. So she got resourceful.
I’m looking at that photo now. We all love our mothers. Mine died on August 16, 2015. I loved her.
In March 2015, she was diagnosed with lung cancer that had spread to her brain. Though I never saw her shed a tear, the devastation that accompanies such news hit my siblings and me hard. Still, I figured we had a few advantages.
First, she would be treated at a world-class cancer center at an esteemed university hospital.She’d have the best care.
Second, she had good “base strength,”vital in fighting cancer. Yes, she was nearing 81, but she could do most things she’d done at 60. She still drove every day (often too fast) and had only retired as a social worker at age 75. (She’d earned two college degrees in her 60s.) She was looking for volunteer work when the diagnosis came.
Third, I’d been a health journalist for 20 years. I’d written and edited countless articles about navigating the health care system, including many for Men’s Health. I even wrote a book with TV’s Dr. Oz called You: The Smart Patient: An Insider’s Handbook for Getting the Best Treatment. So we weren’t exactly going into this blind.
But none of those advantages helped my mother. Her final six months brought regrets I’ll carry forever. I’m writing this article because when the time comes for you to care for a critically ill loved one—and make no mistake, it will come—there are some vital things you should know.
A collusion of silence
That’s the technical term for the tacit agreement among doctors, patients, and family members to avoid talking about how long a person will likely live and the quality of life they will have. It arises from good intentions, cowardice, superstition, and misguided kindness, and it often leads to additional suffering. It’s rooted in an archaic era of medicine when maintaining patient ignorance was a doctor’s paternalistic duty and right.
My mother, our doctors, and my family used the collusion of silence to avoid painful realities and fuel the false optimism we urgently wanted. Yes, my mom was also a conspirator, as many patients understandably are. She didn’t want us to suffer.
“There’s nothing more threatening than talking about death,” says internist and palliative care physician Paul K. Han, M.D., director of the Center for Outcomes Research & Evaluation at Maine Medical Center Research Institute. “So doctor and patient often don’t even go there.”
As a consequence, my mother never knew her real options. Our collusion let her become a victim of aggressive treatments that the specialists would have likely never chosen for themselves. And it rendered her bedridden, cognitively impaired, and dead sooner than the cancer probably would’ve killed her.
“The collusion of silence happens all the time,” says oncologist Timothy Gilligan, M.D., director of coaching at the Cleveland Clinic Center for Excellence in Healthcare Communication, which trains physicians to communicate effectively with patients. “We talk about treatment, we talk about next steps, but we don’t talk about what’s really going on, which is that things are getting worse and life expectancy is becoming shorter.”
Stage IV cancer is the usual demon that brews this situation, but it can occur with any life-threatening condition, such as kidney disease or congestive heart failure. Once the collusion of silence begins, it launches you into a spiral of false hope and damaging medical measures that speed disability and add pain, suffering, loss, and financial debt in a journey that’s already brutal enough. As a final insult, it can rob you of the opportunity to say goodbye.
“One of the worst outcomes is when a patient and the family are totally unprepared for what’s coming or don’t under-stand how quickly things can change,”says internist Danielle Ofri, M.D., Ph.D.,of New York University School of Medicine.
“The wife of a patient with cancer once told me, ‘I wasn’t prepared for how fast the end would come.’ They had no time to get ready. He was still trying to take care of logistic son his deathbed, giving her passwords for his bank account and email.”
After talking to dozens of cancer specialists and researchers who specialize in end-of-life communication, I see my mistakes. They all had the same root: I was well armed with practical information (we all are today), but I lacked the wisdom, perspective, and courage to use it effectively.
These are the lessons I learned too late.
Hard lesson #1: Doctors don’t tell you everything
Stunningly, in 2018, physicians still have full discretion to disclose only the information they feel they should reveal to a patient and their family.
“There’s no ethical mandate that says we have to tell patients everything no matter what,” says Dr. Gilligan. “But we do have a mandate to honor our patients’ autonomy, and they can’t exercise their autonomy if we withhold important information from them. There is a culture in medicine of hiding information from patients in order to avoid upsetting them, and I’m very frustrated by that, because getting upset by bad news is a normal human reaction. Our job as doctors isn’t to protect patients from the truth; our job is to help them get through difficult times when things aren’t going well.”
One challenge is that honest conversations in these settings can be extremely upsetting. Nudging a terrified group toward recognizing that “fighting with everything we’ve got” may add pain and suffering while failing to prolong life can cause denial, shouting, and tears.
“When you give people bad news, a lot of times they become angry or desperate or despairing or extremely disappointed in you, which is a horrible feeling,” says Jessica Zitter, M.D., an intensive care and palliative care physician and assistant clinical professor of medicine at UC San Francisco. “Doctors need to be trained to accept and anticipate that onslaught of emotion from patients and families.”
“In looking at studies that have recorded doctor-patient conversations, it’s clear that physicians often do not tell all the facts, ignore patient cues, gloss over things, and hesitate to reveal information,” says Anthony Back, M.D., an oncologist with the University of Washington and Fred Hutchinson Cancer ResearchCenter and co-director of the UW Center for Excellence in Palliative Care.
It defies belief, but physicians can refuse to talk about a patient’s prognosis even when asked point-blank. My family experienced this.
“I don’t find prognoses helpful,” one specialist replied while recommending that my mom undergo her second brain surgery in three months. He spoke about how statistics don’t relate to individuals, which I’ve later learned is a typical justification for avoiding anguishing details.More internal excuses include: “I didn’t want to dash the patient’s hopes” and “I’m not going to force-feed people info they don’t seem to want.”
This is disturbingly common, research shows. Here’s what a 2014 study review in JAMA Internal Medicine found:
- “[Seriously ill] patients regularly bring up concerns related to dying [to which their] physicians do not respond.” One cited study found that this happened in 84 percent of cases when a patient raised the topic.
- “Physicians frequently avoid these discussions by hedging (e.g., not committing to a prognosis estimate when questioned) or changing the subject (e.g., discussing diagnostic tests).” Cited research showed that doctors hedged in 29 percent of instances and changed the topic 33 percent of the time.
Our surgeon’s evasiveness fueled our false hope, and my mother consented to the second surgery thinking it would help her walk again. (That was her main short-term hope, because the first operation put her in a wheelchair.) Instead, the surgery left her bedridden and mentally impaired until she died a short time later—one clearly foreseeable outcome that no doctor had mentioned.
Had we discussed this risk for just one excruciating minute, I believe my mother would have given that second operation much deeper thought. I’ll never know.
Hard Lesson #2: Doctors are clumsy at delivering bad news
Most physicians, including cancer specialists, don’t receive any formal training on how to do this delicate job.
“A lot of the lay public would be shocked to realize that training about how to communicate with patients is not compulsory for an oncologist,” says Dr. Back. “There are many doctors who, because they’re not trained, hesitate to put the real info out there because they’re not sure how they’re going to handle the patient’s reaction.”
Hard Lesson #3: You won’t be rational or have the guts to be cruel
I wasn’t an idiot. I was acutely aware that we needed to talk more about the big picture so my mother had the information to decide how to spend her waning time alive. So I forced hard questions on the specialists. “Look, what’s our ultimate treatment goal here?” “Okay, but what are the risks of the surgery and radiation?” “Look, we get that she could die on the table—but what are the most common outcomes?” “What if we’re not lucky?”
Useless. My book-smart game plan didn’t anticipate two things: This is not the doctor’s first rodeo in evading upsetting details. Introducing the slightest hint of pessimism felt cruel. It was impossible to look in my mother’s or sister’s eyes and continue pushing the doctors for answers. Tensions flared when I asked again and specialists dodged. And hell, I also wanted to believe we’d be among the Powerball winners in the survival lottery. So I gave up and let us keep focusing on the “next step.”
My mom quickly next-stepped off a cliff.If you think your emotions won’t override your intellect, stick a pin in your palm. If you bleed, expect your judgment to warp in ways that will horrify you in hindsight.
Hard Lesson #4: The doctors won’t help you deal with death
My mother’s metastasized lung cancer and rapidly growing brain tumors meant she would almost assuredly die within six months to a year (unless, again, she was anextremely lucky outlier and lived perhaps a few months longer). Quickly or slowly, she was dying. This would have been obvious to any person even glancingly familiar with lung cancer mortality data and not deluded by false hope.
I had hoped her medical team would at least help us navigate that sad path. That was my final mistake. The doctors disappeared when Mom began her final decline.They never acknowledged that their treatment plan, at minimum, hadn’t worked. I learned later that this also isn’t rare.
The lack of compassion was startling. But it was probably due to the wider incompetence in treating a dying human being. This is partly because slow dying is a relatively new occurrence in medicine.
“In the early 1900s, people with infections often died quickly; most treatments we have now didn’t exist,” says VJ Periyakoil, M.D., a geriatrics and palliative care doctor with Stanford School of Medicine.
“Only recently has technology prolonged the dying process and allowed the end of life to be completely medicalized.”
We did escape some of that dehumanization. Mom died at home, in bed, before my eyes. It’s the one thing I don’t regret.
How to make an end-of-life action plan:
Google “how to help terminally ill parent,” and you’ll find loads of useful checklists that can fool you into thinking you’ll be prepared. But here’s a secret: When you’re in the fiery sea of adrenaline, desperation, and CT scans, do you know what is oddly worthless? Printouts. You’ll have mountains of them because printing out shit can feel like fighting. Here are four tactical tidbits I wish had been in my stacks. Unlike the other 878 must-dos I highlighted, these could have made a difference.
See a palliative care doctor right after diagnosis
This might seem like cocking a rile around a limping pony, but it’s essential. Researchs hows that your parent will live better and possibly longer if you bring in a palliative care specialist as soon as you can, says Jennifer Temel, M.D., an oncologist and professor of medicine at Harvard Medical School. Dr. Temel’s landmark 2010 study in the New England Journal of Medicine discovered that patients with stage IV lung cancer who received palliative care within two months of diagnosis lived longer than those who didn’t. They also had significantly better mood and quality of life. This was probably due to better painand symptom management, less distress, and less aggressive treatment.
Make a video
Mom wrote letters to us in case she didn’t survive her first brain surgery. Had I been smarter and more prepared, I would have recorded a video after she was diagnosed and asked her to answer these three questions:
- What matters the most to you at this time in your life?
- What activities do you most enjoy doing?
- What do you really hope to do in the next few months or years?
A video like this will tell the medical team what your parent really wants from treatment, says Arthur Caplan, Ph.D., head of medical ethics at New YorkUniversity School
of Medicine. Hearing how your parent wishes to live and what he or she is living for—in your parent’s words—can offer an entry point to talk about the therapy’s likelihood of delivering those wishes. Dr. Periyakoil created a letter template for doing this. (Google“Periyakoil” and “letter.”)
Caplan recommends recording a video of your parent reading the letter to give it more impact to doctors.
Frame difficult questions with “Would you be surprised…?”
Instead of asking,“What’s the chancet hat Dad will make it to Christmas?” ask, “Would you be surprised if Dad died before Christmas?”
This wording may yield more honest information about your parent’s prognosis.
Recap with the “teach back”method
Physicians tend to deliver bad news in a massive info dump, buried under medical jargon and euphemisms. This helps obscure what might be emotionally devastating. (For example, the word “lesion” may sound less frightening than “tumor.”) To get the true bottom line, tell the physician how you’ll relay to another family member what he or she just explained. Distilling 3,000 spoken words into “Dad’s cancer has spread but you think chemotherapy will buy him another three months of life pretty much as he’s living now” can help force specifics into the conversation—or at least make the doctor aware if you don’t understand the situation.