Everyone appreciates a bright perspective, especially in grim circumstances. But you know what’s a really poor arena for downplaying the bad news? Medicine.

A new report in the Annals of Oncology this week reveals that in two thirds of breast cancer studies, side effects were downplayed – including serious ones. And, as Reuters reports, it’s a field-wide problem in the health care industry: Last fall, cardiology journal editors warned authors to “watch their language” in reporting, and pediatrics researchers warned of “spin and boasting” in their journals.

Aside from the ethical issues of publishing misleading information, the habit of rushing to make it all seem better has serious consequences. Because the sunnyside talk doesn’t stop at the journals. It trickles over to doctors, who then minimize what a patient’s real experience is going to be like.

And even without overly optimistic literature to inspire them, doctors and their lack of understanding can be an issue. A 2007 study in the journal Drug Safety found that over 60 percent of patients who complained of side effects to a particular drug said “their doctors did not appreciate the impact the symptoms had on their quality of life.” At the time, health policy professor Albert W. Wu told American Medical News that doctors “have the bad habit of discounting patients’ complaints. In our desire not to worry patients unduly, to persuade them to take their medications as directed, and perhaps because we are pressed for time, we may at times dismiss the problems they mention.” Yeah, now tell those of us who’ve ever been to the doctor something we don’t know.

There are a whole mess of problems with doctors misleading patients, however unintentionally they may be doing it, about the potential side effects of treatments, drugs or procedures — and then undervaluing their patients’ complaints when they kick in. It isn’t just that it sets up patients for more than they may be prepared to bite off. It isn’t just that when you underplay side effects and symptoms, you risk ignoring serious health problems. It’s also that it’s so goddamn frustrating. It’s a built-in guilt trip for patients, who wonder why they’re having a hard time when they’re ostensibly not supposed to be. It pressures them to feel as if they shouldn’t complain. It makes them feel like failures for not being good or doing it right. It makes them question what they’re going through. And it encourages them to play along with one of the great abiding fictions of illness – that it’s all okay; that everything’s fine.

A man on his deathbed smells delicious chocolate-chip cookies baking. He makes it out of bed and crawls downstairs to the kitchen, where he sees the cookies cooling on the table.

He reaches up for one, only to have his wife smack his hand away.

“Don’t touch them!” she says. “They’re for your funeral!”

That’s one of many jokes Fritz Behr has told Dr. Justin Thomas at the St. Peter’s Hospital Cancer Treatment Center lately. Behr visits the oncologist on Tuesdays, and has promised to bring two jokes with him at each appointment.

“It’s like ‘Tuesdays with Fritzie,’” Behr said, alluding to “Tuesdays With Morrie: An Old Man, a Young Man, and Life’s Greatest Lesson,” a 1997 book about a young man’s visits with his dying former college professor.

Behr, 79, has a big repertoire of jokes and also has stage four cancer. A tumor was removed from the back of his tongue about a year ago and he refused follow-up radiation therapy.

About 36 days ago, he decided not to eat, which he could do only with great difficulty anyway.

Now he spends his days at home, with plenty of visitors. He said he feels no hunger or pain, although he smells food and sometimes dreams of it.

“I got no regrets,” he said. “I’m as happy as a clam.”

He didn’t expect to make it to Thanksgiving but enjoyed it at the home of his daughter, Lorraine Formaz, and her husband, Pete. Fritz sipped coffee.

“The doctors tell me you can live for months without eating, if you drink enough water,” he said. “It’s amazing.”

Behr came from Nazi Germany to New York City at age 8, and became a patrolman with the New York Police Department back when officers, if they weren’t in a car with a radio, communicated via call boxes on the street.

He ascended the ranks, eventually overseeing hundreds of officers throughout all five boroughs in various tasks.

His life changed on Sept. 11, 1976. Croatian nationals who had hijacked a plane also planted a bomb in Grand Central Station. Behr was among those injured during the attempt to diffuse it.

“I should have been dead then. The guy over here’s dead,” he said, gesturing as if at a colleague. “The guy over here, his fingers are gone. The guy over here, he doesn’t see so good anymore.”

Shortly thereafter, disability pension in hand, he moved out to Montana on the recommendation of a colleague who had moved to Livingston.

He had earned a law degree in the meantime from St. John’s University (“Right at the top of my class, thank you very much,” he said) and worked for Attorney General Mike Greeley (a Democrat) for more than 11 years, and then in the office of Gov. Stan Stephens (a Republican) where, he said, he sucked up job duties “like a vacuum cleaner,” before retiring again in 1993.

He took up skiing in his 60s. In recent years, he waged a one-man crusade against litter on local roads, particularly in the South Hills, driving a truck with a “Litter Patrol” seal that looked almost official.

Sometime in mid-2011, he began having difficulty swallowing.

He went to a throat specialist, who said he had a sinus infection. Another specialist said he had acid reflux.

Finally his primary care physician, Dr. Don Skillman, recommended he go to the famed Mayo Clinic in Rochester, Minn.

There, about a year ago, a doctor diagnosed him correctly: “You have an ulcer on the back of your tongue,” she told him.

A biopsy revealed it was cancer, and surgeons removed part of the base of his tongue.

And so began difficulties with food. He began using a feeding tube, gaining liquid nourishment from “a hanging bag” three times a day, he said.

After about a month at the clinic he was faced with the prospect of radiation therapy. He refused.

Back in Helena, he had continued complications with his throat. He ate through feeding tubes, either through the nose or directly to the stomach.

He’s had “wonderful care” at St. Peter’s Hospital, he said, including therapy to help with speech and swallowing.

He learned to swallow enough to handle pureed foods, and was able to free himself from the feeding tubes.

But every bite, every meal, remained a challenge.

“Angela is an excellent cook. She has worked very, very hard to accommodate me and nurse me,” he said. “But all that pureed food looked awful. Didn’t taste that good either.”

After consulting with doctors and Angela, he decided he didn’t want to go through the hassle of eating anymore. Angela said she supports his decision, although he tends to make his own decisions in any case.

“I’m not interested in prolonging my life,” he said. “I’ve had a long and interesting life.”

In addition to family in the Helena area, he has a son in Arizona. Another one died about 17 years ago at age 30, Behr said.

That son, he said, was an alcoholic and drug addict who squandered opportunities at Carroll College and died of AIDS, while Fritz held his hand.

“I told him, when he couldn’t breathe anymore, ‘Let it go, Fred, let it go,’” he said.

There are lots of tragedies in everyone’s life, he noted, and lots of wonderful things.

He’s especially thankful for the care from St. Peter’s, in particular the hospice care. A nurse comes a few times a week to check on him and see if he needs anything.

He’s made arrangements for his funeral. Mediterranean Grille will be catering it, and some friends say they’re going to play bluegrass music.

He’s on just a few medications, including a painkiller he takes sparingly.

Among the medals, badges and plaques honoring his police work is a frame with three documents: A Nazi-era passport, with a picture of 8-year-old Fritz and a red “J,” for being Jewish; a certificate of naturalization, with a photo of Fritz in early adolescence, marking his American citizenship; and another certificate from the German government, issued just last year, officially reinstating his German citizenship.

“I got to come to this country, I got to be of service in New York and Montana,” he said. “What could be better?”

Jane has voted in every election since she was 18. Now 33, she’s disappointed that she missed heading to the polls for the first time last week. But Jane has a lot of things to be disappointed about. She knows she is going to die soon. She knows that she will not survive long enough to see the benefits or consequences of her vote. So in the company of less than 60 percent of age-eligible voters in America who exercise their right, why did Jane want to cast her ballot? She votes to fulfill her civic duty. She votes because she believes her vote makes a difference. She votes to impact her daughter’s life. She votes to maintain some normalcy in her own life.

Jane was diagnosed with liver cancer at the age of 31 — a rare occurrence in someone so young and with no underlying disease. She had surgery, but her cancer returned. Since then, she has undergone other operations and has pursued standard and experimental therapies. She has exhausted every medical option available, and now Jane has changed her focus toward creating memories and a secure life for her 1-year-old daughter.

When her cancer returned, Jane and I had a difficult discussion about her future through the process of advance care planning. We identified personal goals and values that defined her own acceptable quality of life. We identified the characteristics and features that define her self-worth. Jane is a single mother, a teacher, a daughter, a sister, a member of her community.

As a single mother, Jane recognized that her daughter’s well-being was to be the focus of what life she has left. Certainly, she dreams of watching her daughter grow up, attending her graduation, and seeing her grow into an independent woman. Despite Jane’s own young age, she is able to realize that death is inevitable, and she has taken steps to control what she can.

Jane has appointed her health care power of attorney to speak on her behalf and make decisions if she is unable. She has provided her advance directives, outlining the extent of medical therapy she would want when her health deteriorates. Most importantly, she has discussed these goals and values with her family, and in doing so, she has relieved them of any burden or guilt that so often accompany end of life decisions.

Having completed these steps, Jane can now focus her time and energy on creating a legacy for her daughter. As her health declines, Jane’s role within her family and community will change. She will no longer be able to serve as the caregiver; instead, she will need one herself. She will mourn the loss that this transition entails.

To Jane, going to the polls Nov. 6 was an important contribution to her community, an example for her daughter, and an affirmation of her personal value. When she awoke at 3 a.m. on Election Day with severe abdominal pain, she came to the emergency room and was admitted to the hospital. She is sad about the loss of her last opportunity to vote, but she is focusing her thoughts on planning for the upcoming holidays.

Why is Jane able to grasp the inevitability of her death and cope so productively? She is not particularly spiritual, nor has she ever suffered loss in her own family. She attributes her peace to ongoing conversations and exploration of her personal values — her advance care planning.

A recent study from the Dana Farber Cancer Institute in the Annals of Internal Medicine demonstrates that while most patients with advanced cancer in this specialty center have had end-of-life discussions, they tend to occur during acute hospital care, with providers other than their primary oncologist, and late in the course of their illness. They tend to focus on advance directives rather than advance care planning.

Advance care planning is a dynamic process that evolves over time as a person’s health goes from well, to ill, to ultimately terminal. Less than 10 percent of people will die suddenly; most of us will experience a protracted life-threatening illness. Medical advances have led to few cures of illness, have prolonged the experience of living with chronic illness and have prolonged the process of dying. Add to this the fact that for the next 18 years, baby boomers will be turning 65 at a rate of about 8,000 each day, and it is clear that the role of advance care planning needs to be embraced.

The barriers to effective advance care planning are numerous. There are individual attitudes of death and dying to contend with; there are heath care barriers of discomfort with these personal conversations, time constraints, and a feeling of perceived failure on the part of the medical community. It is imperative that we, as patients, health care providers and members of society, overcome these barriers and remain active in pursuing our personal values and goals.

Jane is a role model for civic mindedness and an example of successfully navigating through life’s toughest challenge.

This Election Day, Massachusetts is poised to approve the Death With Dignity Act. “Death with dignity” is a modernized, sanitized, politically palatable term that replaces the now-antiquated expression “physician-assisted suicide.” Four polls conducted in the past couple of months have shown strong support for the ballot question, although a well-funded media blitz by the opposition is kicking in during the final several weeks and may influence voter opinions.

Oregon’s Death With Dignity Act has been in effect for the past 14 years, and the state of Washington followed suit with a similar law in 2008. Despite concerns of skeptics, the sky has not fallen; civilization in the Northwest remains intact; the poor, disenfranchised, elderly, and vulnerable have not been victimized; and Oregon has become a leader in the provision of excellent palliative medicine services.

But the Massachusetts ballot question has the potential to turn death with dignity from a legislative experiment into the new national norm. The state is the home of America’s leading medical publication (the New England Journal of Medicine), hospital (Massachusetts General), and four medical schools (Harvard, Boston University, University of Massachusetts, and Tufts).  Passage of the law would represent a crucial milestone for the death with dignity movement, especially since 42 percent of the state is Catholic and the church hierarchy vehemently opposes assisted dying. Vermont and New Jersey are already entertaining similar legislature, and if the act passes in Massachusetts, other states that have previously had unsuccessful campaigns will certainly be emboldened to revisit this subject.

The American right-to-die movement began in the 1980s and 1990s with Derek Humphry’s book, Final Exit, and his organization, the Hemlock Society. It was a reaction to a wave of technological advances, including antibiotics, antifungal medications, ventilators, dialysis machines, cardiopulmonary resuscitation, organ transplantation, and intensive care units. Death appeared to be on the run, cure was truly possible, and patients were politely requested to be quiet and allow physicians to heroically perform miracles. And that is when Dr. Jack Kevorkian—the bad boy of medicine—appeared on the scene.

Kevorkian was a revolutionary. He was beloved by patients and their families because of his gutsy intention to overthrow the medical establishment’s prevailing ethos and hubris about dying. Clad in his nerdy, light-blue cardigan sweater, Kevorkian paraded in front of the cameras to show off homemade suicide gadgets and the Volkswagen van he occasionally drove on house calls to help suffering people end their lives. Before receiving an 11-to-20-year sentence for the second-degree murder of Thomas Youck, a 52-year-old Michigan accountant who suffered from amyotrophic lateral sclerosis (Lou Gehrig’s disease), Judge Jessica Cooper said, “You had the audacity to go on national television, show the world what you did and dare the legal system to stop you. Well sir, consider yourself stopped.”

So let’s fast forward to December 2007, when Cody Curtis was diagnosed with cholangiocarcinoma. This is an unusual and deadly cancer of the bile duct, the tube that runs through the liver. Depending on the size of the tumor and whether it has spread throughout the body, patients with this cancer are offered surgery, chemoradiation, and sometimes a liver transplant. Even with aggressive treatment, however, cholangiocarcinoma is usually a fatal diagnosis.

On a website called How We Die, Cody wrote with characteristic brio and wit:

It’s interesting how I was diagnosed—for my 52^nd birthday I had gotten four, count them, four boxes of chocolate. And I ate them all. Afterwards I felt (deservedly) awful. I looked up my symptoms on the Internet and decided I was having a gall bladder attack like my father had earlier that year. It was a Saturday night so I didn’t want to go to the emergency room.

But I thought it was really weird, so a few weeks later I went in to see the doctor. She ordered an ultrasound. When I went back to her office to get the results, she looked at me and burst into tears. She said, “Your gall bladder’s fine, but you have a big mass in your liver.” The tumor was roughly the size of a grapefruit.

After Cody’s primary care physician calmed down, she discussed the implications of the finding and referred her to a local oncology surgeon, Dr. Katherine Morris—whom Cody and her family came to know as Dr. Kate.

Cody’s postings about her illness remained upbeat but realistic:

The good news was the location of the tumor made a resection of my liver possible. Your liver regenerates and within six weeks you have a new liver. I had the first surgery, which cut out about 60 percent of my liver. But there were complications and I ended up in the hospital for 50 days. I couldn’t walk. I couldn’t feed myself. My daughter lives in Washington D.C. She visited for a week and I didn’t know she was there. And a year after the original surgery, the cancer came back, metastasized to the liver, lungs, and lymph nodes.

When Cody and Dr. Kate met for the first time, the surgeon was 39 years old. During the preceding three years, she had established a vibrant solo private practice based in Portland, Ore., while also helping run a research and tumor banking program at a tertiary care center. She was happily married and highly satisfied with her professional life.

When I write medical stories, I routinely ask people to describe themselves and find that most physicians become flustered when asked this question. Although trained observers, doctors spend little time looking in a mirror or wryly considering their own appearance. They are no more or less narcissistic than the general public but rarely manage to put together a coherent description of themselves—let alone one that contains humor and modern cultural references. So I was delighted when Dr. Kate immediately responded: “I am hopeless at this, but will suggest, instead, a series of words to consider and words to avoid.” Among the words and phrases to eschew were “stout, stumpy, Rubenesque, jolly, looks like Austin Powers minus the chest hair.” Among those worthy of consideration are “a less anorexic Angelina Jolie, statuesque, willowy, serene, poised.” She continued: “I’m 5’4″; have dark, shoulder-length hair; kinda hazel eyes; and teeth I should have had straightened as a kid, but refused to have braces.” This was followed by the admission that, “I’ve a tendency to be willful!”

Dr. Kate grew up in a bucolic setting on the outskirts of Olympia, Wash., in a home that abounded with horses, cats, and dogs. One of her earliest lessons was that you don’t allow animals to suffer. She was raised as a Catholic and attended parochial school through eighth grade. She learned other lessons: People are responsible for themselves and their bodies, and autonomy is a cherished ethical principle to always be respected. Dr. Kate moved to Oregon to attend medical school and complete a surgical residency. She then traveled to New York City and Memorial Sloan-Kettering, where she did a surgical oncology fellowship focusing on cancers of the liver and pancreas. Portland, however, is not an easy city to leave, and she returned to establish a private practice and conduct clinical research. When Cody came to see Dr. Kate, she was one of a select group of surgeons specializing in the treatment of this particular kind of cancer.

Thanks to Cody’s case, Dr. Kate is now among the pantheon of a growing number of medical professionals who have been transformed by death with dignity. Perhaps it takes the dramatic actions of a flawed advocate like Dr. Jack Kevorkian to catalyze change that leads to the appearance of more reasonable and likable physician reformers. Physicians of this new generation do not seek out or necessarily welcome the role, but, having accepted it, they are irreversibly changed. Most are modest, highly intellectual, and intensely private professionals who are drawn to medicine because it offers a challenge and an opportunity to help relieve distress. Most are workaholics who accept the drudgery and frequent frustrations of the profession because it is occasionally interrupted by the incomparable pleasure that comes with vanquishing an illness, ameliorating suffering, and saving a life. Few of these physicians would ever have dreamed that their greatest accomplishment might entail helping patients to die. Not one of them would have imagined him- or herself becoming a death-with-dignity advocate.

These doctors defy the deeply ingrained taboo against death and they are soft-spoken combatants in this professional and cultural war. The media has briefly illuminated a few of them. Dr. Timothy Quill is a bioethicist and primary care physician who wrote a provocative New England Journal of Medicine article that is death with dignity’s literary equivalent of Harriet Beecher Stowe’s Uncle Tom’s Cabin. The first-person essay resulted in a grand jury investigation (he faced the possibility of indictment for murder or manslaughter), and it led to his eventual role as a plaintiff in a landmark U.S. Supreme Court case. Tim is this year’s president of the American Academy of Hospice and Palliative Medicine.

Dr. Marcia Angell is another member of this group. She was the first female editor of theNew England Journal of Medicine and has recently been attracting attention in her capacity as an eloquent spokesperson for the Massachusetts ballot question campaign. She fervently believes that it is vastly preferable for dying people to be offered a legal option of death with dignity than to secretly, fearfully, and often brutally kill themselves.

And then there is Dr. Kate Morris. At the time Cody became her patient, filmmaker Peter Richardson, a young native Oregonian, was absorbed by his state’s decision to legalize death with dignity. Cody eagerly agreed to participate in his film, and Dr. Kate grudgingly acquiesced. Both women poignantly described to Peter the aftermath of the surgery, the complicated recuperation, the resumption of a vibrant life, and finally the recurrence of cancer. In the end, the camera respectfully hovered outside of Cody’s bedroom, where her family gathered and where she ingested the lethal dose of barbiturates that allowed her the death with dignity she desired.

When I interviewed Richardson, he was still in shock that How To Die in Oregon had just received the Grand Jury Prize Documentary Award at the 2011 Sundance Film Festival. Since then, it has been broadcast on HBO and is contending for an Emmy. At the festival, Dr. Kate shared a few intense minutes in the klieg lights with Cody Curtis’ widower and her adult children, as they nervously answered audience questions.

Before moving to New Mexico for an academic position, the surgeon helped one more patient to use Oregon’s Death With Dignity Act. She has since volunteered to be the lead physician plaintiff in a case challenging New Mexico’s law against assisted dying.
For people like Cody Curtis and Dr. Kate, death with dignity is not incompatible with palliative care, and data show that 90 percent of Oregon patients who choose assisted dying are simultaneously enrolled in hospice, and 95 percent die at home. Death with dignity epitomizes self-determination at a moment when palliative medicine bumps up against its limits, when patients are undergoing irremediable existential suffering and are in the process of losing everything that is meaningful to them.

After her patient’s death, Dr. Kate concluded, “I think Cody taught me that ‘first, do no harm,’ is different for every patient. Harm for her would have meant taking away the control and saying, ‘No, no, no! You have got to do this the way your body decides, as opposed to the way you as the person decides.’ ”

Dr. Kate’s epiphany goes to the heart of the dilemma faced by physicians who are requested to assist in hastening dying. Most have been taught to adopt a passive stance and resist doing something rather than risk causing more harm than good. The ethical principle of non-maleficence has been a rationale for feigning deafness, and for ignoring or refusing to participate in a death with dignity. However, Dr. Kate has realized that another, more important principle—respect for patient autonomy—should supersede in these cases. Whether or not you would consider assisted dying as a personal option, we should allow others to exercise their preferences. It is time we became pro-choice at the end of life.