"Ethical hope"—a lifeline for sick patients

August 9, 1999

A new study shows that giving seriously ill patients overlyoptimistic expectations can be as dangerous as giving them none. How do you negotiate the middle ground?

A new study shows that giving seriously ill patients overlyoptimistic expectations can be as dangerous as giving them none. How doyou negotiate the middle ground?

There are always remarkable patients like Greg Anderson. He was diagnosedin 1984 with squamous cell lung cancer that had spread through his lymphaticsystem, and his doctors gave him 30 days to live, tops. Fifteen years later,Anderson is alive and well--and helping others suffering from life-threateningillness. He's the founder and CEO of the Cancer Recovery Foundation of America,a nonprofit concern that counsels cancer patients, among other activities.

But there are also patients like the late Mark Radtke, whose physicianswere so invested in his survival that they completed his last chemotherapytreatment just 48 hours before he died. The 43-year-old spent his last daysin a hospital ICU "hooked up to so many tubes, bags, and monitors,it was difficult for me to find a place to touch him," his widow, Nena,recalls. The Radtkes' two children, ages 6 and 9, were not allowed in theICU, and Nena's visits were limited to five minutes each hour. It was notthe kind of goodbye she had wanted.

Cases like Radtke's are common. Oncologist/hematologist Thomas J. Smithof the Massey Cancer Center in Richmond, VA, says one large insurer foundthat 50 percent of its cancer patients died within two weeks of gettingchemotherapy. By that point, he says, it's usually much too late to achieveof meaningful improvement.

And therein lies the problem: How do you do your best to cheer on a GregAnderson while not encouraging false hope or futile care? And how do yougracefully shift gears--and help the patient and family do the same--whendeath seems inevitable? The challenge applies no matter what life-threateningillness the patient has. If you're the primary care physician, your patientsmay continue to look to you for information and support even though they'reunder a specialist's care. What you say--or don't say--can make a tremendousdifference in how the patient experiences his illness and final days.

A study of terminally ill cancer patients, published in JAMA last year,sheds new light on this dilemma. It's the first study to suggest that fosteringfalse hope can cause real harm, a finding that flies in the face of conventionalwisdom. "It's commonly believed that it is cruel to take away hopeby forcing patients to come to terms with their prognosis," says oncologistJane C. Weeks, director of the Center for Outcomes Policy Research at theDana-Farber Cancer Institute in Boston and lead author of the study. "Wewanted to raise the possibility that it might, in fact, be compassionate."

Patients' perceptions dictate choices

The JAMA study queried 917 patients who had advanced lung or colon cancerthat had spread to the liver. The patients and their physicians were askedto rate the chance of surviving at least six months. Patients also wereasked whether they preferred life-extending therapy or palliative care.

The study found that patients were far more optimistic than their doctors,but the physicians were more accurate. For instance, among doctors and patientswho estimated at least a 90 percent chance of living six months or more,doctors were right 71 percent of the time, and patients 57 percent. Eighty-twopercent of patients gave themselves better odds than their doctors did,and within that group, 59 percent gave themselves far better odds.

These overly optimistic patients did live longer than those who mademore conservative estimates. But they were also 2.6 times as likely to chooseaggressive cancer treatment. Those who got it didn't live longer than thosewho chose palliative care (after adjustments were made for such factorsas age, sex, disease stage, etc.). And it appears that they suffered more,since they were 1.6 times more likely to be readmitted to the hospital,undergo a resuscitation attempt, or die attached to a ventilator.

"The study showed that patients who don't understand their prognosismake different choices," says Weeks. "It's not unreasonable toinfer that their choices were not optimal for them."

As Mark Radtke's death suggests, it's not only the patient who sufferswhen there's misunderstanding. There can be lasting consequences for thepatient's family. In California, for example, the widow and two childrenof an electrical contractor sued the man's physicians for lack of informedconsent. Miklos Arato died of pancreatic cancer within a year of his diagnosis.His wife alleged that none of the physicians had disclosed the high mortalityrate before asking him to consent to an experimental treatment. The chiefoncologist testified that one reason he didn't was that "it might effectivelydeprive [the] patient of any hope of cure, a medically inadvisable state."

But his widow claimed that had he known the truth about his life expectancy,Arato would have spent his remaining days at home and gotten his businessaffairs in order. And that, she said, could have prevented the eventualfailure of his businesses and the substantial losses his family incurred.Though the courts ultimately cleared the doctors, the case illustrates thefar-reaching implications of physician-patient miscommunication.

What patients need to make good decisions

Physicians need to be acutely aware of these implications, says Weeks."Doctors struggle every day with whether it's better to be brutallyhonest when a patient's prognosis is not good, or to withhold informationto retain hope," she says. But if you don't help patients understandthe likely natural course of the disease, and how various treatment optionsaffect it, Weeks continues, they won't be able to make treatment--or life-planning--decisionsconsistent with their values.

Complicating this communication is the fact that no matter how forthrightyou are, some patients can't--or won't--understand. They may confuse palliativecare with cure. Or they may insist that their condition is curable whenit's not. Other patients may not understand that their condition iscurable. "What you tell patients is only part of the story," saysLos Angeles radiologist Saar A. Porrath, who is waging his own fight againstcancer. "What they hear is the other part."

What can you do to make sure your seriously ill patients--or their designees--havewhat they need to make fully informed decisions about care? One simple stepto prepare for such conversations is to complete a form such as the oneon page 122. By going over the form with the patient point by point, you'llprompt a discussion of his prognosis, life goals, and rest-of-life planning.It helps make explicit what you can and can't do, and it may eliminate confusionover whether the disease is considered curable. "Patients love thefact you've written the information down and told them how to contact youduring off-hours," says oncologist Thomas Smith, the form's author.

To initiate discussion after a dire diagnosis, ask the patient what heknows about his disease and what he wants to know. The first question willgive you the opportunity to clarify any misunderstandings, and the secondgives patients some control over how much information they're given.

Boston internist Andrew Billings, who speaks frequently on end-of-lifeissues, recommends telling patients what they want to know before you tellthem what they have to know. When you deliver unpleasant news, be honest,Smith advises, "but don't hide the truth in medical language the patientor family isn't likely to understand. Let the patient know, 'You have anillness from which you might die.' "

As Mark Radtke's health declined, one of his physicians started usingmuch more medical terminology than he had earlier, Nena Radtke recalls."I could sense the doctor was scared," she says. "He wasvery caring, but I think he was just trying to feel his way through it,as we were.

"I wish we had gotten a more realistic scenario early on,"she adds. It was only after her husband died of intravascular lymphoma thatshe learned that the disease is almost always fatal.

Conveying "ethical" hope, and the difference it makes

There is a flip side. In your zeal to be honest, be careful not to "performstatistical last rites," warns hematologist/oncologist Mitchell Gaynor(pictured below)of the Strang Cancer Prevention Center in New York City."It can become a self-fulfilling prophecy." Plenty of patientshave died right on schedule.

If there's reason to talk about survival odds, make sure the patientunderstands there's a difference between statistics, which are based onnumbers, and people, who have their own unique potential. Gaynor makes apoint of telling patients: "You never hear about the people who live.All you hear are the stories of famous people who've died of cancer."He tells his patients about people he has treated who are now cancer-free,or who lived much longer than the usual prognosis.

Your tone and unspoken expectations will color the communication. Billingsrecommends resolving your own sadness before you share bad news. "There'sa natural tendency to convey a hopelessness that's more the physician'sthan the patient's," he says. Similarly, guard against a tendency towardpessimism. Whether or not you express it, patients will sense it.

"Hope is incredibly important. In your own mind, you've got to giveeverybody a shot," says Manhattan gastroenterologist Sidney J. Winawer,whose wife outlived by several years her doctor's prediction that she'ddie of stomach cancer in a few months. Winawer ended up writing a book aboutthis experience--Healing Lessons (Little, Brown & Co., 1998).He holds a chair in the gastroenterology-nutrition service at the MemorialSloan-Kettering Cancer Center.

"Every person is unique," Winawer stresses. "You don'tknow how a patient will respond to treatment or the resources he'll mobilize."Winawer also contends that human beings have the emotional complexity tohave hope and be realistic about a poor outcome. His wife was totallyrealistic, he says, and yet, at the same time, she found within her thepower to slow death's advance and make full use of the time she had left.

Experts say you can employ several practical strategies to stimulatea patient's will to live and combat the hopelessness. Support groups, personalcounseling, and exercise can help patients maintain a positive attitude.So can teaching patients to live in the moment, to feel gratitude for eachday, rather than think about what will happen tomorrow with the next CTscan, says Gaynor. Many patients have benefited from such practices as meditation,yoga, and t'ai chi, which can help bring this shift of focus. In some cases,deep breathing by itself is effective. (For an example of how meditationand a support group can help, see the box below.)

Helping patients to live in the moment brings tangible benefits. Whenpatients focus on an unknown future--and expect that their disease willreact in a certain way by a certain time--"all that does is add stress,"says Gaynor. But learning to live in the moment "fosters peacefulness,which is important in recovering from any illness," he adds.

The other benefit of such practices as yoga, exercise, and meditation,says Winawer, is that they return a sense of control to patients. "Ifwe support patients in finding ways to help themselves, instead of alwaysimposing our will on them, they'll be better patients: more compliant, andless likely to experience the side effects of treatments."

You can also make a powerful difference in the patient's experience ofthe illness if you raise the possibility that a serious disease can be acatalyst for profound--and positive--life changes.

Consider Greg Anderson. His dire prognosis--one month to live--inspiredradical changes in the way he viewed himself and his relationships. Andersoncredits his recovery partly to modern medicine and partly to his holisticapproach. He had surgery to remove his left lung and radiation to selectedlymph nodes, but no chemotherapy. He says the turning point in his diseasecame after he spent a week focusing intently on sincere forgiveness of himselfand the people in his life toward whom he harbored hostility. That was hisway of eliminating a long-term source of internal stress, which he believescontributed to the depression of his immune system.

Since his recovery, Anderson has counseled thousands of individuals withcancer, and those he has helped are counseling others. "We have a databaseof 13,000 people who are very motivated to help themselves heal," hesays. About 62 percent have outlived national norms for their kind of cancer,he adds.

Patients need to hear these kinds of stories. Gaynor says he has seenmany of his patients transform their lives for the better. He invites thesurvivors to his support groups to spread the message.

Don't forget your role in supporting seriously ill patients. Andersonsays the most important thing a physician can tell a patient with a life-threateningillness is: "We're going to do everything possible to get you wellagain."

How to shift gears when death seems inevitable

But what if the patient seems unlikely to make it? Don't wait to introducethe concept of hospice, says oncologist Thomas Smith. Have the hospice contactthe family even if the patient is getting aggressive treatment. This givesthem time to get used to the idea.

You don't have to eliminate all hope, says oncologist Jane Weeks. Onekey finding from her study is that patients who believed there was evena 10 percent chance they wouldn't survive six months were half as likelyto want curative treatment as those who fully expected to survive.

If you believe that medical treatments can no longer control the disease,say so, says Smith. What if the family or patient is counting on a miracle?Here's how Smith would respond: "I don't have any medical means tocontrol this disease. That doesn't mean God won't or can't heal you at anytime. We can always hope and pray for the best. But since none of us canpredict the way God works, we should plan on some concrete things. Haveyou made a will and a living will that tells me and your family about yourwishes for artificial life support? Are there things you'd like to do withthe remaining time you have? Now's the time to do them, because you mightnot be able to later."

At the same time, let the patient know what you can do to maintain hisquality of life. Reassure him that you'll still be his doctor, even if curativetreatment stops. "It's important to say, 'We're not giving up on you.We're just shifting gears and trying to keep you up and functioning as longas possible. We'll use whatever means are necessary,' " says Smith.

Be sure not to impose your choices on the patient, says Boston psychiatristPaula Rauch. "For some people, aggressive treatment is the only waythey can remain hopeful. Discontinuing it can be so emotionally disabling,they couldn't maintain important relationships. A parent of a young childmight think, 'I need my child to know I never gave up. I tried everything.'That can be important to the child as well."

Even when there's little that medicine can do, being receptive to thepatient and his family counts for a lot, says Rauch. Adds Anderson: "Ifyou can care for the patient and assure him there are still tremendous momentsto be lived despite his illness, then you've gone from doctor to healer."*

One doctor's unusual method to help patients cope

Imagine spending a few evening hours every other week with two dozenor so of your most seriously ill patients, and sending them back out intothe night uplifted and deeply grateful to have you as their physician.

Imagine the trust that would forge, the compliance problems it wouldminimize. Imagine hearing from them that what they've learned from you onthese evenings has improved every aspect of their lives.

Such is the satisfaction that oncologist Mitchell L. Gaynor, directorof medical oncology at Strang Cancer Prevention Center in New York, derivesfrom his work.

For years, Gaynor has run a free support group every other Wednesdayin a first-floor conference room of an Upper East Side Manhattan high-rise.The session begins with a meditation, accompanied by Gaynor playing "singingbowls"--traditional instruments used by Tibetan monks. The sound evokesa sense of the sacred, making the conference room seem like a monastery.Gaynor tells his patients to focus on their breath, and then leads themthrough a series of ancient sacred sounds, meant to help them "moveinward, to experience an inner silence." The sequence is designed totake them beyond physical relaxation to a harmonious state that allows themto achieve peace within.

Later in the meditation, he reminds patients that even during the moststressful circumstances they can return to this calm state just by workingwith their breath. Then he opens the floor for patients to talk.

Gaynor says that sound, particularly from the bowls, provides the mosteffective means he knows to help anxious cancer patients move through thefear and reconnect with what is most alive within themselves. In his upcomingbook, Sounds of Healing: A Physician Reveals the Therapeutic Power ofSound, Voice, and Music (Broadway Books, 1999), Gaynor tells of a patientwith metastatic breast cancer who was adamantly opposed to chemotherapy.After her first exposure to the sound meditation, she agreed not only tochemotherapy but later to a bone-marrow transplant. She's now in remission.

Rosemarie Hernandez, a Bronx woman who has been battling cancer for sixyears, and who recently lost her 29-year-old daughter Cindy to pulmonaryhypertension, says the support group sessions "completely relax me.That peaceful feeling lasts for days." Another patient says that workingwith Gaynor inspired her to make personal changes and has turned this periodinto "the most beautiful time in my life."

Gaynor's methods are made possible in part by a growing openness to spiritualand faith-based practices as adjuncts to traditional medical therapy andnutrition. While his approach is decidedly unique, it's just one exampleof how physicians are bringing this dimension to medicine--to the delightof their patients.

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