You'd Better Not Die or I'll Kill You

by Jane Heller

  Ilene: Sometimes it’s a personality thing. But often it’s about how we handle stress. We don’t mean to have “a tone,” but maybe the previous patient set us off or the lab is delayed with a result or the CT scanner is down. Those kinds of things frustrate us and when we’re frustrated we don’t always mask it.

  Jane: Conversely, I can’t stand it when the doctor tries to be friendly by shaking the patient’s hand. I mean who knows where that hand has been?

  Ilene: The Japanese way of bowing is probably better. And you’re right to try and protect your husband from germs. But I have to say that many, many caregivers don’t do a very good job.

  Jane: Excuse me? You’re knocking caregivers?

  Ilene: They try to do too much by keeping the patient at home, not having enough help, not putting Grandma in a facility. They’re in denial. They’re working so hard and doing everything they can, but they don’t want her in a nursing home.

  Jane: Can you blame them?

  Ilene: No, but I see patients who are just not clean because they’ve been sitting in their own poop. Or they’re not being adequately fed. The family members can’t do it all, so the patient gets sicker as a result. They’re unknowingly responsible for elder neglect and it’s the last thing they want to happen. They may be saving the patient from the evil nursing home, but they’re also trying to do more than they’re capable of.

  Jane: What’s the solution?

  Ilene: If you can access home-health nursing and have the resources for it, great. If not, do your research on nursing homes and find the best one. No matter what kind of nursing home it is, the more you visit, the better care your relative will get because the staff will know they’re being watched. My dad used to bring cake to my grandmother’s nursing home every time he came, so everybody loved him. A little food goes a long way with health-care people.

  Jane: What happens in the ER when there are numerous family members trying to make a life-and-death decision about Grandma’s treatment? Do you listen to the one whose name is on the advance directive?

  Ilene: If there’s no family member around, I go by the paperwork that’s there; if there’s a living will and it says the patient doesn’t want extraordinary measures, we don’t do extraordinary measures. If we have a patient who clearly should not be resuscitated and we have a phone number of a family member, we’ll call and try to get an advance directive.

  Jane: What if the advance directive says one thing and the family member says another?

  Ilene: If the relative in control says to rip up the advance directive, we rip it up. I think it’s wrong, because it goes against the patient’s wishes, but that’s how it works. Which is why each patient needs to be very careful about who gets power of attorney. Don’t make it the son who never listened to you.

  Jane: What happens when a patient dies in the ER? I know as a doctor you must be used to it, but is it hard for you as a human being?

  Ilene: My mother died in an ER of a sudden heart attack when I was in med school, so I’ve been in the position of being the one to receive that horrible news. I’m fine with the natural passage of life, but dealing with the family members and their emotions triggers some sadness for me. I tear up 50 percent of the time.

  Jane: Do you have a script that you follow?

  Ilene: I do. I say, “This is what happened. We did everything we could. I’m sorry, but she died.” I try to be as compassionate as possible, sit down with them, be at eye level, hold their hand, or touch their shoulder. One thing we were taught in residency was to make sure to use the words “died” and “dead.” We do not say “pass away” or anything like that, because it allows family members to live in a state of denial. They have to acknowledge that their relative has died in order to move on. Beating around the bush is not compassionate.

  Jane: A very difficult job, I’m sure. Do you ever use humor to get through it?

  Ilene: Absolutely, even when a patient dies. Sometimes we’ll get ten or fifteen family members in the room, and when you tell them what happened, they become so hysterical that we have to admit them into the hospital.

  Jane: And that’s funny?

  Ilene: In a way, yeah. Our term for it is: “Stop, drop, and roll.” They literally stop talking, do a belly flop onto the floor, and roll around crying. When you have multiple people doing it, it’s crazy.

  Jane: You doctors are a laugh riot.

  Ilene: You have to understand that we’ve all faced that situation. Instead of crying about it, we laugh about it.

  Jane: Any final advice for caregivers?

  Ilene: Yes. I have a hard and fast rule about men: never let them come to the ER unaccompanied by a sister, a girlfriend, a wife, or a mother. Men are incapable of giving an appropriate history. They downplay everything. One man came in with an allergic reaction. I said, “Have you ever had an allergic reaction before?” “No.” “Anything where you felt like your throat was closing up or you had itchy welts or even a light rash?” “Never.” “You’re sure?” “Positive.” An hour later, his mother arrived and said, “Why aren’t you doing this and this because he was in the ER a week ago with the exact same thing?” That’s what men are like. They should never go to doctors’ appointments on their own either.

  Jane: Amen. I tell Michael all the time, “Nagging wives save lives.”

  Ilene: Oh, one more thing. Can you guess the most dangerous day to go to the hospital?

  Jane: Christmas Day—Michael’s favorite time to get sick.

  Ilene: No. It’s July 1—the day all the doctors and residents and medical students get promoted to the next level. Everybody is starting a new role and they’re all clueless.

  Jane: Good to know. So Christmas Day isn’t so bad after all.

  Ilene: Actually, it’s the second most dangerous day. People want off. Nurses call in sick. The doctors who are working have worked many, many days in a row and are overtired. And the patients are at their most acute. Try to avoid that day.

  Jane: Fat chance.

  CHAPTER 4

  Doctors—Can’t Live with ’Em, Can’t Live Without ’Em

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  “When you meet a doctor, interview him. ‘Can you do this, this and this?’ If he can’t, you say, ‘Sorry. Nice to meet you, but I don’t think you fit what I’m looking for.’ Just being able to say that changes things. When you’re out picking and choosing, you need to have the power to say no instead of being stuck with someone and being angry and resentful.”

  —NEAL MAZER, psychiatrist

  As the caregiver of a spouse who has had enough doctors over the years to populate an entire city, I can honestly say I’ve met them all—the nice ones, the mean ones, the hip ones, the nerdy ones, the talented ones, the clueless ones, the ones who take the time to listen, the ones who blow you off without a backward glance, the ones who deserve our undying gratitude, the ones who deserve to have their medical license revoked.

  Who doesn’t have doctor stories? Here are a few of mine:

  ∗ Michael was scheduled to undergo a procedure with a doctor who showed up forty-five minutes late and who said, without a trace of embarrassment or apology, “I overslept.”

  ∗ I was in Michael’s hospital room one morning and the doctor’s prescription pad fell out of his pocket onto the floor. He nodded at me to pick it up for him. (I did not.)

  ∗ Michael was only fourteen when he was diagnosed with Crohn’s. He and his bewildered mother were in the doctor’s office.

  The doctor to his mother: “Your son has terminal ileitis.”

  His mother: “Terminal? He’s going to die?”

  The doctor (with attitude): “No, not that kind of ‘terminal.’ Here. You can read about it in this.”

  At which point he reached for a huge medical textbook and flung it across the room at her.

  ∗ Michael went for a first appointment with a new primary-care physician, a young woman who was in our network of providers. He had just had a section of his nose removed due to
melanoma surgery and was heavily bandaged. She not only did not look up from her notes to ask him what had happened to his nose, but she began by saying he needed to “make it quick” because she had to get home before her babysitter left.

  ∗ Michael was in excruciating pain for what he knew (from experience) to be a kidney stone. He was referred to a urologist who tested him and found no evidence of any stone. Michael assured him he had a stone, as small and undetectable as it might be, and asked for pain medication. The doctor refused, telling Michael he was probably an addict who was only there to score some Vicodin. The next day Michael passed the stone, put it in an empty pill bottle, and dropped it off at the doctor’s office with a note that said, “Here’s a present for you. Thanks for all your help.”

  Not that there haven’t been wonderful, positive doctor stories; Michael wouldn’t be alive if not for caring professionals and their expertise. Here are some examples:

  ∗ Michael’s first surgeon was a circumspect man who never showed emotion. One morning, near dawn, he showed up in Michael’s hospital room to check on him. He had just come from an eight-hour operation and his patient had died. He was so overcome with sadness that he cried. It was a rare display of humanity from this doctor or any doctor, and Michael never forgot it—or how the doctor made time to see him even though he was drained and exhausted.

  ∗ Michael went to see a specialist about his high incidence of kidney stones. The doctor was aware of the relationship between the stones and Crohn’s, but was unaware of a remedy and determined to find one. The doctor then spent months at the Yale Medical School library researching the subject and ultimately came up with a drug called cholestyramine, which helped Michael for years.

  ∗ Michael’s current gastroenterologist is a marathon runner and a man of boundless energy and good cheer. He’s extremely accessible and returns calls even in the evening. He’s also one of the only doctors we’ve encountered who actually turns to me, makes eye contact, and asks, “And how are you doing, Jane?”

  The challenge for caregivers is how to communicate effectively with doctors who don’t have much of a bedside manner, who can’t get off the phone with you fast enough, who are gifted intellectually but don’t have the personality to match. How do we force them to answer our questions without kidnapping them, tying them to a chair, and denying them food and water? Yes, they’re busy, but part of the job of being a caregiver is to ask them what they’re doing with our loved ones and why.

  So, first come the questions; they should be written down beforehand so we don’t waste everybody’s time. In most instances, we’re under stress, too overwhelmed to think clearly. Having the questions at our fingertips is definitely the way to go. Do you keep a pad and pen handy? Or make notes on your smart phone? Either way, some general topics to cover with any doctor:

  ∗ Please explain the diagnosis and prognosis.

  ∗ If there is no diagnosis, what tests do you plan to do to find one?

  ∗ Is there a specialist we need to consult?

  ∗ If there is a diagnosis, what is your treatment plan?

  ∗ How many of these cases have you treated/operated on before?

  ∗ Will the drugs have side effects and, if so, what are they?

  ∗ Will the patient be on a special diet?

  ∗ How long will the patient be in the hospital?

  ∗ If there is pain, how will it be managed?

  ∗ What are possible complications?

  ∗ Will you be overseeing the care personally?

  ∗ What’s the best way to reach you?

  Kelli Jackson, an RN in the Critical Care Unit at Cottage Hospital in Santa Barbara, agreed about writing down questions ahead of time—but she cautioned that we should pick our shots.

  “When the doctor comes in, family members should say, ‘I have four questions for you,’ ” she suggested. “It makes a doctor more accountable. Sometimes it’s nice to get as many questions as possible answered by the nurse so there aren’t as many for the physician, who doesn’t want to stay long.”

  Why don’t physicians want to stay long?

  “They’re busy,” she said. “And they may not know all the answers, so they want to be in and out.”

  What’s the best way to get them to stay then? Besides keeping the list of questions short?

  “Family members should ask for a meeting,” she said. “They should say, ‘I know this isn’t a good time. Can we set up a better time to sit down and talk about what’s going to happen next?’ Our physicians are up for that a hundred percent. They’ll plan a time that’s convenient for them.”

  Michael Lindenmayer, founding partner and chairman of the Caregiver Relief Fund, had a different take on doctors who don’t return calls or answer questions to our satisfaction.

  “Fire him,” said Michael. “If that doctor is too busy to service you, look for another doctor. It’s easy to say, ‘Well, he’s the only one in my insurance plan.’ Sorry. You’re not doing your homework. And if you’re in an area where there’s absolutely no health coverage and you have no ability to get anything done, then you have to take a serious look at your situation and ask, ‘Am I in the right place?’ ”

  Good advice, but I came up with my own way of compelling the doctor to stay in the room long enough to answer my questions.

  Let me set the scene:

  Michael was in a hospital in Florida recovering from surgery. Every day his surgeon would stop in for a quick look—and I do mean quick. I would be sitting in the chair by the bed and no sooner did I stand to approach the doctor than he was out the door, as if he had an allergy to caregivers. His behavior was worse than frustrating; it was crazy making.

  “Doctor, do you have a second?” I’d ask.

  “I’ll be back tomorrow,” he’d say and flee.

  The next morning: “Doctor, I wanted to ask you about Michael’s—”

  “Oops. I’m late. Gotta go.”

  The next morning: “Doctor, how long do you think Michael will have to—”

  “Let’s see how he does today. Bye.”

  Okay, I thought. This is unacceptable.

  The next morning I did not sit in my chair by the bed. I stood in the hall, outside Michael’s room, and waited for the doctor to appear for his hit-and-run. The second he was inside the room, I moved in behind him, planting my feet in the threshold, blocking the door. In other words, he would have had to barrel me over to get out. Trapped!

  I highly recommend this strategy to all caregivers who have found themselves in the same situation: just box the damn doctor in.

  At the other end of the communication spectrum, Michael had a surgeon who couldn’t stop talking—just not about anything related to Michael’s health. He was a baseball fan and when he heard I’d written a book about the Yankees, he only wanted to talk about that. At first I was annoyed, but I realized that establishing a rapport with a doctor—about anything—is better than having no rapport at all.

  When discussing the Doctor Issue with other caregivers, I discovered that quite a few have been frustrated by the lack of communication or the quality of the communication between them and their loved one’s physician(s). Some anecdotes from our roundtable:

  Yudi Bennett, on the doctors who were treating her husband for lymphoma: “They kept telling us about the eighty-percent chance with the chemo and the fifty-percent chance with the bone marrow transplant. Nobody ever explained to us that Bob could die at the drop of a pin. My experience with cancer was that people declined gradually. I thought there would be time. Bob and I went to a wedding and the next day he was in the hospital with an infection and two days later he died. Those last two days of his life were the worst two days of mine. I was shell-shocked. So was Bob. I wish that somewhere in the journey the doctors had said to us, ‘This could take a turn very suddenly.’ Maybe if we’d gone into a support group, it would have come up. I don’t know. But I fault doctors on this for always giving us the positive spin. It would have helped me to b
e a better caregiver to have had more information.”

  Jennifer DuBois, on the palliative-care doctor who was overseeing her mother’s treatment in the hospital: “My mother was supposed to be getting pain medicine so she would be kept comfortable. That’s why we were there—to get her comfortable and into the hospice wing—but it just didn’t go well at all because the medicine wasn’t working anymore. We got very frustrated with the fact that nobody seemed to be taking charge of the situation. That’s when I demanded that the doctor come down and look at her. I took him in the hall and got in his face. I said, ‘My mother’s situation is unacceptable and you need to do more.’ He said, ‘The only option that I have is to put her under anesthesia. You’ll have to say your goodbyes.’ It was really the only decision, and we made it as a family. But my advice is to demand to see the doctor and be straight with him. Nothing against nurses, but if they’re just following doctors’ orders, which is what they were doing in our case, and the doctors’ orders aren’t getting it done, then you need to demand to see the doctor. You have to be the squeaky wheel.”

  John Goodman, on the doctors who were treating his wife for Cushing’s syndrome at a New York hospital: “I was stunned how useless they were, shocked by the lack of care. My wife had a rare, serious case of Cushing’s and the head of the endocrinology team was this woman who treated it like it was a toothache. I remember standing in the hall and reaming her out. Then she left on a planned vacation and we got another doctor. I shook the guy’s hand and never saw him again—and I got a huge bill. I wrote him a letter saying, ‘You are a crook. I was in that hospital from morning till night and I never saw you again. When were you treating my wife? Why are you billing her?’ Finally, another doctor got involved and I remember sitting in the hallway with her saying, ‘I need to deal with an endocrinologist who cares and can give me answers.’ She said, ‘Mr. Goodman, I promise I’ll give you answers.’ Thank God she did. She really walked the walk.”