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How to Manage the Healthcare of a Dying Parent

In the spring of 1989, my mom called the Los Angeles Dodgers World Series champion 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 (autographed photographer 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 you, 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 have done 60. She was still drove every day and had 75 retired. (She'd earned two college degrees in her 60s.)

Third, I've been a health journalist for 20 years. I've 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. Oz called You: The Smart Patient: An Insider's Handbook for Getting the Best Treatment . So we were not 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 of the time it takes for you to make a critically ill loved one-and-make-no-mistake.

A collusion of silence

That's the technical term for the tacit agreement among doctors, patients, and family members to avoid talking about. It comes from good intentions, cowardice, superstition, and misguided kindness, and it often leads to additional suffering. 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 so a conspirator, as many patients are understandably.

"There's nothing more threatening than talking about death," said Paul K. Han, MD, director of the Center for Outcomes Research and Evaluation at Maine Medical Center Research institutions. "So doctor and patient often do not even go there."

As a consequence, my mother never knew her real options. They would probably never be chosen for themselves.

"The collusion of silence happens all the time," said oncologist Timothy Gilligan, MD, director of coaching at the Cleveland Clinic Center for Excellence in Healthcare Communication, which trains physicians to communicate effectively with patients.

Stage IV cancer is the usual demon that. "We talk about treatment, we talk about next steps, but we do not talk about what's really going on, which is getting worse." brews this situation, but it can occur with any life-threatening condition, such as kidney disease or congestive heart failure. In a journey that's brutal enough, that's what it's all about. As a final insult,

"One of the worst outcomes is when a patient and the family are totally unprepared for what's coming up , Says internist Danielle Ofri, MD, Ph.D., of the New York University School of Medicine.

"The wife of a patient with cancer once told me," I was not prepared for it 'They had no time to get ready.

After talking to dozens of cancer Specialists in end-of-life communication, I see my mistakes ,

 Ron Geraci and his mother

Ron Geraci and others his mother

Ron Geraci

Hard lessons # 1: Doctors do not tell you everything

Stunningly, in 2018, physicians still have full discretion to disclose only

"There's no ethical mandate that says we have to deal with patients. Gilligan. "But we do have a mandate to honor our patients' autonomy, and they can not exercise their autonomy. There is a culture in hiding of 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 is not to protect patients from the truth; our job is to help you get through difficult times when things are not going well. "

One challenge is that honest conversations in these settings can be extremely upsetting. Denial, shouting, and tears.

"When you give people bad news, a lot of times." "Jessica Zitter, MD, an intensive care and palliative care physician and assistant clinical professor of medicine at UC San Francisco, says.

"In looking at these studies have recorded doctor-patient conversations, it's clear that physicians often do not tell all the facts, ignore patient Anthony Back, MD, an oncologist with the University of Washington, and Fred Hutchinson, Cancer Research Center 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.

"I do not find prognoses helpful," one specialist replied while recommending that my mom undergo a second brain surgery in three months. More internal excuses include: "I did not want to dash the patient's hopes" and "I'm not going to force-feed people info they do not seem to want to. "

This is disturbingly common, research shows. JAMA Internal Medicine found:

  • "[Seriously ill] physicians do not respond
    • "Physicians frequently avoid these discussions by hedging (eg, not communicating to a prognosis estimate when questioned) or changing the subject (eg, discussing diagnostic tests)." Cited research showed that's 33 percent of the time.

      Our surgeon's evasiveness fueled our false hope, and my mother consented to do it again. Instead, the surgery has been disproven and mentally impaired until it died. 19659002] 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, do not receive any formal training on how to do this delicate job.

      "Computing for an oncologist," says Dr. A. Back.

      Hard Lesson # 3: You won. There are many doctors who, because they're not trained, they're just going to give the patient's reaction. "

      Hard Lesson # 3: You won 't be rational or have the good to be cruel

      I was not an idiot. I was acutely aware that we needed to talk 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. "Okay, but what are the risks of the surgery and radiation?" "Look, we've got that they could be the most common outcomes?" "What if we're not lucky? "

      Useless. My book-smart game plan did not anticipate two things: This is not the doctor's first rodeo in evading upsetting details. Introducing the slightest hint of pessimism felt cruel. It's impossible to look at my mother's or sister's eyes and keep pushing the doctors for answers. Tensions flared When I asked again and Specialists dodged. And hell, so I wanted to believe we were among the powerball winners in the survival lottery.

      My mom quickly next-stepped off a cliff.If you think your emotions do not override your intellect, stick a pin in your palm.

      Hard Lesson # 4: The doctors do not help you deal with death

      My mother's metastasized lung cancer and rapidly growing brain tumors meant she would almost assuredly be within six months to a year (unless, again, she was anextremely lucky outlier and perhaps a few months longer). Quickly or slowly, she was dying. This was my final mistake. The doctors disappeared when Mom began her final decline.They never acknowledge that her treatment plan, at least, had not worked. I learned later that this is not rare.

      The lack of compassion was startling. But it was probably due to the incompatibility in treating a dying human being.

      "In the early 1900s, people with infections often died; "VJ Periyakoil, MD, a geriatric and palliative care doctor with Stanford School of Medicine."

      "Only recently has technology extended the dying process and allowed the end of life to be completely medicalized. "

      We did not escape some of that dehumanization. Mom died at home, in bed, before my eyes.

       How to make an end-of-life action plan </p>
<div class=

       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, you know what is oddly worthless? Printouts. You'll have mountains of them because printing out can feel like fighting. Here are four tactical tidbits I wish I had been in my stacks. Unlike the other 878 must-dos I highlighted that could have made a difference. </p>
<h4 class= Seeing a palliative care doctor right after diagnosis

      This might seem to be a pimp, but it's essential. Jennifer Temel, M.D., says at Harvard Medical School's oncologist and professor of medicine, says research hows that your parent wants to deliver it to you sooner than you can in a palliative care specialist. Dr. Temel's landmark 2010 study in the New England Journal of Medicine found that patients who received palliative care within two months of diagnosis lived longer than those who did not. They had much better mood and quality of life. This is probably due to better pain and symptom management, less distress, and less aggressive treatment.

      Make a video

      Mom wrote letters to us in case she did not survive her first brain surgery. Had I been smarter and more prepared,

    1. What activities do you
    2. What do you really hope to do in the next few months or years?
      1. Arthur Caplan, Ph.D. , head of medical ethics at New York University School
        of Medicine. Hearing how to do your parent wishes to live in your parent's words-can offer an entry point to talk about the therapy's likelihood of doing those wishes. Dr. Periyakoil created a letter template for doing this. (Google "Periyakoil" and "letter.")

        Caplan recommends recording a video of your parent's reading

        Frame difficult questions with "Would you be surprised …?"

        Instead of asking, "What's the chancet Dad wants to 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.

        19659055] 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 to do it. Distilling 3,000 words "Dad's Cancer Has Spread But You Think I Want To Do It." the situation.

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