Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen too much of what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

How Doctors Die The Saturday Evening Post

In this video from SoCal Connected, Murray explains the often undiscussed pain and discomfort terminal patients experience on life support, and what families might not consider when choosing to prolong a loved one’s life at all costs.

The Problem with Life Support The Saturday Evening Post

Ann Kim today: “Here I am with my two sons on New Year’s Day this year. We’re at Ocean Beach in San Francisco. They were just 3 and 7 when I was diagnosed, and now they are young men. I am so grateful for each day I have with them.” Photo courtesy Ann Kim.

Shortly before my 39th birthday, when I was taking a shower, I felt a lump about the size and shape of a pea in my right breast. I felt a chill go through my body. A week later, on my 39th birthday, I got a biopsy. When the doctor called with the results (I was setting out the birthday cake for my older son’s seventh birthday), the news was bad: I had breast cancer. I wanted to cry, but I couldn’t. It just felt surreal.

In literature and film, medicine is often depicted as a paternalistic profession, with patients given little information and expected to follow their doctors’ orders blindly. In real life, my experience was the opposite. Instead of having an all-knowing doctor telling me what to do, I found myself with a team of doctors relying on me to make the critical treatment decisions. I was like a president with advisors, but I knew nothing about the topics, and the choices and the information were overwhelming. What I expected was Dr. Brilliant Guide; what I got was Dr. Me.

My first appointment was with a pre-eminent breast surgeon at a top-rated comprehensive cancer center. She carefully laid out the options for me: lumpectomy with radiation or mastectomy with reconstruction. The lumpectomy would mean a less invasive procedure and a quicker recovery but also require several weeks of daily radiation and a lifetime of mammograms and MRIs. The mastectomy would entail more invasive surgery and a longer recovery time but eliminate the need for radiation and ongoing screening. Long-term survival odds were the same. My surgeon had no recommendation either way.

Anxious to get her to cast a vote, I tried a personal approach. I had Googled my surgeon before the appointment and found that we were of the same age and ethnicity, and we were both mothers. “You and I could be sisters—twins, even,” I told her. “If you were in my shoes, what would you do?”

Ann Kim during chemotherapy in 2005: “This is one of the few photos I have of myself when I was bald. My sons and I are cuddling together in bed during a trip to Yosemite in the winter.” Photo courtesy Ann Kim.

She paused before answering. “Whenever women ask me that, I tell them that it’s a personal decision, and that I can’t make it for them,” she said. “But when I look at you, I see myself. I would choose a mastectomy with reconstruction.”

I was grateful for her answer but also frustrated on behalf of other patients. Why do doctors express their much-more-informed opinion so reluctantly?

I had more decisions to make when I met with a plastic surgeon. He laid out the options: saline implant, TRAM flap (which uses skin, fat, and muscle from the belly region to construct a breast), or LAT flap (which uses skin, fat, and muscle from the back region to construct a breast). I chose to get an implant, but I developed severe capsular contracture, which is when scar tissue forms around the implant and causes painful stiffness and hardening of the tissue. After multiple surgeries, I had to remove the implant altogether. In retrospect, I wish I’d considered the choice of no reconstruction at all, but it was not something that I even thought to discuss with the plastic surgeon, nor did he mention it to me.

The hardest phase of my medical training was choosing an oncologist, the person responsible for administering chemotherapy and other systemic cancer treatments. Weeks had passed since my surgery, and I was convinced that the cancer was already beginning to spread. I wanted to begin chemotherapy right away. But the oncologist offered me the most intimidating set of choices yet.

I could take four rounds of Adriamycin plus Cytoxan, either at four-week or three-week intervals. I could add four rounds of Taxol or Taxotere, again at either four- or three-week intervals. I could participate in a clinical trial in which I would receive either a new drug called Herceptin or a placebo. After my chemotherapy ended, I could choose to take five years of an oral hormonal drug called Tamoxifen, or I could suppress my ovaries by taking a drug called Lupron or Zoladex and take five years of an Aromatase Inhibitor such as Letrozole (brand name Femara), Exemestane (Aromasin), or Anastrozole (Arimidex), or I could take five years of Tamoxifen and follow it up with another five years of an Aromatase Inhibitor.

My head was spinning. Having spent an hour describing the options, the oncologist had run out of time and had to move on to her next patient. Rather than recommending a particular course of treatment, the oncologist told me and my husband to go home and think about it and make an appointment to meet with her again.

I didn’t want to wait several more weeks mulling over treatments I didn’t really understand. At my friend’s suggestion, I met with another oncologist. He offered the same options as the first oncologist but recommended a specific course of treatment and gave strong supporting reasons for it. I appreciated that he was advocating an aggressive approach (adding a third chemotherapy agent and combining ovarian suppression with an Aromatase Inhibitor). But, mostly, I was grateful for a straightforward answer. He became my oncologist.

For young women with breast cancer, treatment decisions often extend beyond surgery, radiation therapy, and oncology to medical specialties such as genetic counseling, fertility planning, gynecology, psychiatry, physical therapy, and primary medicine. Unfortunately, even at a comprehensive cancer center, the patient must coordinate these various disciplines. And if you go “a la carte” like I did, mixing and matching doctors in different practice groups and at different hospitals, good luck.

In the end, I had to create an Excel spreadsheet just to keep track of my appointments: breast surgeon every six months; mammogram every year (ideally just before the breast surgeon visit so that we could discuss the results); MRI every year for the first two years (ditto, but scheduled six months from the mammogram); oncologist every four months for the first five years, then every six months thereafter; ditto for the blood test with tumor markers; PET/CT every year for the first three years; bone density test every year for the first five years (to track the bone thinning effects of the Aromatase Inhibitors); MUGA heart scan every few months for the year of Herceptin (owing to the cardio-toxic effects of Herceptin and Adriamycin); gynecologist every six months; primary physician every year; and so on. I was able to keep track of this because I’m fairly organized. But what about most people?

In many respects, the collaborative approach that doctors take to cancer treatment is welcome. No one wants a high-handed doctor making treatment decisions without the patient’s involvement or understanding. But a patient can’t in the end play the role of doctor. We might want to know why a doctor is recommending something; but we still want a recommendation. Also, many of us need a guide just to navigate all the appointments and logistics, which can be Byzantine.

Today, nearly eight years after my initial diagnosis, I continue to be vigilant in monitoring my health. (Hormone-sensitive cancers like mine have a “long tail”—meaning they can recur 10, 15, even 20 years after diagnosis.) I read articles and books about cancer. I attend lectures and take notes about the latest treatments. And I participate in a breast cancer support group.

If, knowing what I know now, I were able to go back in time and advise myself on how to be Dr. Me, I would have said three things that I also say to new acquaintances in similar circumstances. The first is that you should always bring a family member or friend to your appointments and have him or her take notes. Often, we patients are so overwhelmed that we can’t remember what we were just told or don’t ask any questions. The second is that you must take care of your whole self. Treat yourself to delicious and healthful food every day. Watch a funny movie and laugh with your friends. Take naps and hot baths as needed. The third is that you should feel free to complain. I have seen too many friends suffer in silence, whether it’s nausea from chemo (doctors often prescribe the cheapest anti-nausea drugs before moving up to the more powerful stuff) or simply trouble getting an appointment. If the front desk or support staff are unhelpful, tell your doctor—doctors don’t want to lose you as a patient.

In an ideal world, of course, no patient would have to shoulder so many responsibilities along with trying to get well. One of the best improvements that could be made would be for patients with cancer to have a “patient advocate.” If you were diagnosed with cancer, the medical center would partner you with a professional patient advocate who would guide you through the cancer treatment process. The patient advocate would set up appointments for you, make sure your care was coordinated, and offer general health-related suggestions (alternative treatments, massage, nutrition classes, support groups). The advocate might even accompany you to appointments and help you with decision making. This would go a long way toward letting those with serious conditions have the luxury of being patients, so that they don’t have to be Dr. Me.

Ann Kim is the president of Bay Area Young Survivors (BAYS), a support group for young women with breast cancer in the San Francisco Bay area.

Article originally published at Zócalo Public Square (zocalopublicsquare.org).

Going it Alone The Saturday Evening Post

“The Barbershop Quartet”

"The Barbershop Quartet"
by Norman Rockwell
Sept 26, 1936

Did you know that there’s a Barbershop Harmony Society dedicated to preserving the history and art of the old-fashioned singing style? And did you further know that a large mural of this 1936 Rockwell classic graces the outside of the society’s beautiful headquarters in Nashville, Tennessee? If you click on the cover for a close-up and observe how Rockwell captured each face at the point of a crucial note, you can just hear the faint strains of “Let Me Call You Sweetheart.” Or perhaps “Sweet Adeline.” And it sounds good!

I’m catching some details I hadn’t before noticed. I can’t believe I never noticed the old copy of “Police Gazette” with a scantily clad woman on the front page. And the Rockwell attention to detail includes a shaving mug, straight razor, and even a comb missing a few teeth.

“The Great Debate”

"lThe Great Debate"
by Norman Rockwell
Oct 30, 1948

When looking at this cover, I’ve always noticed the poor kid left to cry on the floor while his parents argue candidates. Get used to it, kid! This cover may be from the 1940s, but politics is still ugly business today. I’ve also always noticed that the sulking wife is determined the winner should be Harry S. Truman while hubby is adamantly for Thomas E. Dewey. What I haven’t noticed before are the overturned glass on the table, the kickin’ red slippers she’s wearing, and the dog and cat. The dog on the floor is just about as upset as the poor toddler! The cat on the back of the lady’s chair is in “fight or flight” mode—do I run or will I have to lash out at someone? “The dog,” said Rockwell, “is mine and so is the cat. The canary is straight off a picture in a bird-seed catalog.” It looks to me like that canary would like to fly away from the scene. Oh, and I love the old-fashioned toaster.

A Closer Look at Classic Rockwells The Saturday Evening Post

In their book Top Screwups Doctors Make and How to Avoid Them, the Graedons discuss potentially fatal medical errors that occur in hospitals, doctors’ offices, pharmacies, and elsewhere. The book includes ways that patients can be on the alert to make sure nothing happens to them—including what questions they should ask, how to ensure they’re getting the right medications, and so on. The authors also note that having a friend or family member come with you to the doctor to act as a note-taker and an advocate is always a good idea.

The Graedons have been involved with patient advocacy for more than 25 years, and this book is the culmination of their long experience. However, even though the statistics they quote are scary, there’s no reason to panic. The authors are quick to point out that if you have any questions or concerns about your treatment, you should speak to your doctor first. The book isn’t about making people distrust doctors; it’s about making sure patients are armed with the knowledge they need to significantly reduce the chance of mistakes. Remember: Although you need to be careful and alert, you should still trust the medical professionals who treat you.

In addition to their own experience, the Graedons consulted Dr. Peter Pronovost, M.D., Ph.D., who created a five-step checklist to increase safety at hospitals. For more on Dr. Pronovost’s work, check out his profile in the Post.

Top Screwups Doctors Make and How to Avoid Them is an easy-to-read book with an important message. As the Graedons point out, taking charge of your health and safety by asking questions and making sure you know what’s going on is one of the best way to reduce potential mistakes. If you or a relative is often in and out of the hospital or has a revolving carousel of medications, you should read the Graedons’ book. Forewarned is forearmed, and having this knowledge could stop a potentially fatal error.

Top Screwups Doctors Make and How to Avoid Them will be available from Crown Archetype on October 4, 2011, at a list price of $26.

Top Screwups Doctors Make and How to Avoid Them The Saturday Evening Post