Most of us would agree that doctors should not treat patients without their consent, except in special cases like emergency care for an unconscious patient. It’s not enough for doctors to ask “Is it OK with you if I do this?” They should get informed consent from patients who understand the facts, the odds of success, and the risk/benefit ratio of treatments. The ethical principle of autonomy requires that they accept or reject treatment based on a true understanding of their situation and on their personal philosophy. Numerous studies have suggested that patients are giving consent based on misconceptions. There is a failure of communication: doctors are not doing a good job of providing accurate information and/or patients are failing to process that information. I suspect it is a combination of both.

An article in the New England Journal of Medicine reports that while the great majority of patients with advanced lung cancer and colorectal cancer agree to chemotherapy, most of them have unreasonable expectations about its benefits. For some cancers, chemotherapy can be curative, but for metastatic lung or colorectal cancer it can’t. For these patients, chemotherapy is only used to prolong life by a modest amount or to provide palliation of symptoms. Patients were asked questions like “After talking with your doctors about chemotherapy, how likely did you think it was that chemotherapy would…help you live longer, cure your cancer, or help you with problems you were having because of your cancer?” A whopping 69% of lung cancer patients and 81% of colorectal cancer patients believed it was likely to cure their cancer, and most of these thought it was very likely.

False beliefs were:

• More common in colorectal cancer than in lung cancer
• Three times as high for non-white and Hispanic patients
• Twice as high for patients who rated their communication with their physician very favorably
• There was no correlation between inaccurate beliefs and educational level, income, functional status, or the patient’s role in decision-making

It’s ironic in a way. These patients thought chemotherapy was better than it really is, but generally chemotherapy has had very bad press. It has been so demonized that some patients reject it out of hand, and those who accept it often find it nowhere near as bad as they had been led to believe. An e-mail correspondent wanted to label chemotherapy “quackery” because he said it only offered a 2-5% benefit for cancer survival. I had to explain to him that “quackery” refers to treatments with zero benefit, that it is meaningless to speak of cancer as a single entity, that the benefits of chemotherapy depend on the type and stage of cancer, that chemotherapy is curative for some types of cancer, and that it is also used for its adjuvant and palliative effects.

He also asked, “Surgery for cancer has a much greater success rate than 2-5% right?” I explained that it is meaningless to talk about the success rate of “surgery for cancer.” You have to look at specific types and stages of cancer. The success rate for breast cancer surgery in ductal carcinoma in situ stage 0 is 98% for 10-year survival. For pancreatic cancer, virtually all patients are dead within 7 years of surgery. It makes a huge difference whether metastasis has already occurred at the time of surgery. And some cancers, like blood cancers (leukemia, etc.), are not treatable with surgery.

I don’t think oncologists are deliberately lying to patients about chemotherapy. But I suspect they may be carefully choosing their words to put it in a more favorable light, since they naturally want to do something and to offer the patient hope. This may not be operating on a conscious level. And the very fact that they are offering chemotherapy to a patient gives it credibility, no matter what they say.

Whether or not the oncologist offers subtly biased information, the patients’ own biases contribute to poor communication. They want to survive. They want to have hope. It is only natural for them to put a positive slant on what they are told; they may not try to understand the negatives or they may minimize their importance. In some cases, they simply refuse to hear the facts and continue to believe what they want to believe. This study suggests that patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy.

Should we accept these misunderstandings because they give patients hope? Should we be concerned that they have not met the standard for giving informed consent for their treatment? Other studies have shown that patients with advanced cancer would accept toxic treatment for even a 1% chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure. So if they are accepting chemotherapy on the basis of these misunderstandings, they are not doing what they say they want to do. The misunderstandings might even interfere with end-of-life planning and care. Previous studies have shown substantial discrepancies between patients’ and doctors’ estimates of their life expectancy.

Another recent study published in the Annals of Family Medicine showed patients have similar misunderstandings about the value of screening tests and preventive treatments.

• 90% overestimated the effect of breast cancer screening
• 94% overestimated the effect of bowel cancer screening
• 82% overestimated the effect of hip fracture preventive medication
• 69% overestimated the effect of preventive medication for cardiovascular disease

Doctors also have some serious misunderstandings in these areas. In a study by Gigerenzer et al. researchers did a survey of 160 gynecologists attending a continuing education session in 2007. They described a patient who has a positive mammogram and who asks her gynecologist whether that means she has cancer for sure, or what the chances are. What would they tell her? They were given the pertinent information (1% prevalence in that population, 90% of women with cancer test positive, 9% of women without cancer test positive). They were given a multiple-choice question with 4 answers: 81%, 90%, 10%, and 1%. The correct answer, which could be easily calculated from the statistics provided, was 9%. The other answers were wrong by an order of magnitude. They could derive the answer from the statistics or they could simply recall what they should have known anyhow. The gynecologists gave answers ranging from 1% to 90%; the majority of them grossly overestimated the probability of cancer as 90% or 81%, and only 21% answered correctly (not even as good as chance). I don’t know about you, but I find that positively frightening.

Conclusion

Doctors and patients have misconceptions about the value of chemotherapy, screening tests, and preventive measures. And probably a lot of other things! If patients are to give truly informed consent, doctors must have accurate science-based information and must find ways of effectively communicating their knowledge to patients without losing their patients’ trust and regard and without destroying hope.

“The old man and the young woman sat across from one another stiffly perched on plastic chairs, staring down at the floor — doctor and patient. The tension in the room, exaggerated by the silence between them, was almost unbearable. Then the patient, stroking a trembling, emaciated hand across a hairless scalp, spoke haltingly, “Doctor, promise me I’m not going to die.”

According to a recent post in the New York Times by columnist Jane Brody, this type of interaction with a terminally-ill patient creates occupational distress for many doctors who are not equipped emotionally to handle such a difficult situation. She states that doctors who are unable to cope with “their own feelings of frustration, failure and helplessness … may react with anger, abruptness and avoidance” toward their patients who are dying. When this occurs, doctors may recommend futile treatments to patients at the end of life because they cannot connect with those patients on a human, suffering level and have nothing else to offer them.

The article touts mindfulness meditation, a practice recommended by palliative care specialist Dr. Michael Kearney, as a solution for discontent and disconnected doctors. I wholeheartedly agree that mindfulness meditation can be a very helpful practice for calming anxiety and learning to be present. However, I believe that this problem — doctors who find themselves unable to cope with perceived failure when a patient is dying — requires a deeper and more fundamental solution: Doctors need a new understanding of death and, therefore, life.

These are the fundamental truths of death and dying that should be taught to every medical student from the first day of training:

1. Death is inevitable.

Every living thing on Earth will die. Death ultimately cannot be avoided or prevented, even though it can and should be forestalled when reasonably possible. The fact that every patient eventually dies creates a sense of hopelessness and futility for doctors if they pit themselves against death as an enemy — for that is a battle that can never be won. But those who recognize that the end of life is actually the final stage of human development can help their patients face their last days with dignity and make reasonable choices for their care and treatment.

2. Death is a mystery.

No matter how hard we try, we simply cannot control or accurately predict when natural death will occur. In my hospice work I have seen many patients who lived far longer than expected, against all reasonable odds, and I have also seen patients who died much sooner than expected, from causes not related to their terminal illness. We have to accept this mysterious nature of death even while we work to circumvent it or prepare for its arrival.

3. Death makes life more precious.

When life is perceived against the dark backdrop of death, we can see how it shines and glistens for us, evermore precious because it is fleeting. This is the gift that our mortal nature provides us — an opportunity to cherish each moment simply for the fact that it will not last.

4. Dying provides an opportunity for transformation.

In my work with hospice patients I have witnessed over and over the transformative power of love and forgiveness during the last days of life. When dying is respected as a natural part of life and time is allowed for the process to unfold, patients can turn their focus to matters of the heart and soul and find meaning in both life and death. But this does not happen when death is perceived as an enemy that must be resisted until the final breath is taken. Doctors can help their patients change focus by advising them with honesty when the time comes that pursuing further treatment is futile and will cause more harm than benefit.

In my ideal world doctors would be educated in the wisdom of all aspects of health, including the decline of physical health that ends in death. Doctors would be the guides who help us make reasonable choices, who see beyond our fears, and who possess the compassion and tools to ease our suffering. Doctors then would be the wisest members of our society, never deluded by the myth of immortality.

When a doctor such as this is asked by a patient, “How can I live, knowing I am going to die?” the answer would be:

“You must turn your focus to those things that matter the most to you. Put your energy into living each and every moment fully rather than trying to escape death. Then when the time of your death arrives — and no one really knows when that time will be — you won’t feel bitter and deprived. You will be filled with the joy of a life of meaning — no matter how many years of life you have been given.”

Healing takes place not when death is forestalled, but when life is embraced and affirmed in its entirety, from beginning to end. When doctors can fully understand the nature of death and dying, they will become the true healers that are desperately needed in this world.

When it comes to medical care, many patients and doctors believe more is better.

But an epidemic of overtreatment — too many scans, too many blood tests, too many procedures — is costing the nation’s health care system at least $210 billion a year, according to the Institute of Medicine, and taking a human toll in pain, emotional suffering, severe complications and even death.

“What people are not realizing is that sometimes the test poses harm,” said Shannon Brownlee, acting director of the health policy program at the New America Foundation and the author of “Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer.”

“Sometimes the test leads you down a path, a therapeutic cascade, where you start to tumble downstream to more and more testing, and more and more invasive testing, and possibly even treatment for things that should be left well enough alone.”

Have you experienced too much medicine? As part of The New York Times’s online series The Agenda, I asked readers to share their stories. More than 1,000 responded, with examples big and small.

Some complained that when they switch doctors they are required to undergo duplicate blood work, scans or other tests that their previous doctor had only recently ordered. Others told of being caught in a unending maze of testing and specialists who seem to forget the patient’s original complaint. I heard from doctors and nurses, too — health professionals frustrated by a system that encourages these excesses.

Terrence Power of Breckenridge, Colo., said that after his wife, Diane, learned she had Wegener’s disease, an uncommon autoimmune disorder, the couple found it difficult to refuse testing recommended by a trusted doctor. The doctor insisted on office visits every three weeks, even when she was feeling well. He frequently ordered blood tests and X-rays, and repeatedly referred her to specialists for even minor complaints. Even when tests came back negative, more were ordered, and she was hospitalized as a precaution when she developed a cold. During one six-month period, she had 25 doctor visits. The couple was spending about $30,000 a year out of pocket for her care.

“He was convincing enough that we felt we needed to have it done,” said Ms. Power, 60, who recalls being sedated before an endoscopy procedure, one of the last tests she allowed her doctor to perform. “When they were getting ready to knock me out I was thinking, ‘Why am I doing this?’ But we felt like the doctor knew what to do and we trusted him.”

After several years of physical suffering and near financial ruin from the medical costs, the couple began questioning the treatment after consulting with other patients in online support groups. Mr. Power spoke with his own primary care doctor, who advised him to find a new specialist to oversee Ms. Power’s care. “It’s a really hard thing to determine when they’ve crossed the line,” Mr. Power said. “You think she’s getting the best care in the world, but after a while you start to wonder, what is the objective? He seemed caring, but he didn’t really consider my wife’s time and the suffering she was going through having all these tests done.”

Under the new doctor’s care, the regular testing stopped and Ms. Power was finally able to achieve remission. Now she sees the doctor only four or five times a year.

Sometimes the toll of too much medicine is brief, but emotional. Kara Riehman, 43, of Atlanta was vacationing in California when she lost a struggle with an ironing board in her hotel room and ended up with a black eye.

As the bruising peaked around 10 days, she called her doctor to make sure everything looked normal. But instead of seeing her, the doctor, through a conversation with the nurse, ordered a CT scan. She had no symptoms other than a bruised eye, but the doctor never spoke with her or examined her. The scan came back with an ambiguous finding, and the nurse told her it could be a tumor. She was then given an M.R.I. and for two weeks while she waited for the results, she worried she had brain cancer. The nurse called to tell her the M.R.I. was fine.

“It was really terrible,” she said. “It was only two weeks, but there is a lot of cancer in my family. I never actually talked to my doctor through this whole thing.”

The total cost to her insurance company was about $7,000. “It did change how I think about interacting with the medical system,” Ms. Riehman said. “It made me much more of a questioning consumer.”

Jim Donohue, a Brooklyn bank examiner, had to intervene on behalf of his father, now 79, who had a stroke in March 2007. Doctors in Florida put him on several medications, including two antidepressants, and soon after the man began hallucinating and showing signs of dementia. Mr. Donohue began researching the drugs, and learned they were associated with cognitive problems. He persuaded his father’s doctors to change the medication, and his father quickly improved. He has since recovered, and has been living on his own for four years.

“All the medical professionals seeing him along the way, the hospital, two nursing homes and nobody thought of this,” said Mr. Donohue, who said his father never should have been given a diagnosis of depression in the first place. “I don’t know if we have too many specialists and every one is trying to practice their specialty, but it should not have happened.”

When Kathryn Gullo, a teacher in the Los Angeles area, gave birth to twins just 25 weeks into the pregnancy, she was thrust into the intense medical care of the neonatal ward that saved her children’s lives. But when her daughter, Grace, was 3 months old she was transferred to a different hospital, where the doctors insisted on subjecting her to a battery of tests for symptoms that other doctors had dismissed as normal for her condition. “We felt like we were being bullied,” Ms. Gullo said. “I had enough faith in her previous doctors that it was then easy to say no.”

The family switched hospitals and their daughter, now 5 and living with mild cerebral palsy and some vision and feeding issues, continues to require specialized care. But recently, when doctors suggested an M.R.I. that would require that their daughter be anesthetized, Ms. Gullo and her partner, Katie Ingram, said they asked two key questions: “What new information will this give us?” and “Will it change what we are doing?” After talking to the doctor, they declined the M.R.I.

“Not every mystery has to be solved, and not every problem has to be addressed,” Ms. Gullo said. “That’s hard to get your brain around.”

On Nov. 6, in addition to weighing in on the crucial political contests, Massachusetts voters will decide whether physicians may provide a dying patient with medication to bring about an earlier, more peaceful death if the patient chooses. On the ballot will be a Death with Dignity Act that is virtually identical to the law that has been in effect in Oregon for many years. If it passes, it will legalize physician-assisted dying, sometimes called aid in dying. (These terms are favored over the older term, physician-assisted suicide, because they distinguish it from the typical suicide in which a healthy person chooses death over life; here the patient is near death from natural causes anyway, and merely chooses the timing and manner of an inevitable death.)

There are a host of safeguards. First, the Act applies only to adults who are able to make their own decisions. It cannot be used through advance directives, nor by people with limited decision-making capacity. Second, the patient must have a terminal illness, with a life expectancy of no more than six months, as determined by at least two physicians. In addition, the patient must make two oral requests for medication to hasten death, separated by at least 15 days, and one written request, with two witnesses. By definition, the patient must be capable of swallowing the medication — usually barbiturates dissolved in a full glass of liquid — which ensures that it is voluntary. The law does not permit euthanasia, that is, the injection of a lethal medication by a physician or anyone else. If a physician believes a psychiatric condition is impairing the patient’s judgment, the doctor must refer him or her to a psychiatrist or other counselor. No physician is required to participate in assisted dying; he or she may refuse for any reason whatsoever. This is a choice, not a requirement, for both patients and physicians.

Last December, at its interim meeting, the Massachusetts Medical Society reaffirmed its long-standing opposition to physician-assisted dying — finding it “inconsistent with the physician’s role as healer and health care provider,” in the words of President Lynda Young. I will here discuss this and other arguments often made by physician opponents, and explain why I believe they are wrong, both medically and ethically.

Physicians are only healers. This sees the physician’s role too narrowly and abstractly. Yes, it is all very well to say that physicians should be healers, but suppose healing is not possible? When death is imminent and dying patients find their suffering unbearable, then the physician’s role should shift from healing to relieving suffering in accord with the patient’s wishes. This is not a matter of life versus death, but about the manner of dying, and it’s not primarily about doctors, but about patients.

Physicians should never participate in taking life. Doctors who believe this do not usually object to withdrawing life-sustaining treatment, such as a mechanical ventilator, if requested by a patient or proxy. But they believe that writing a prescription is more active, hence unethical. Here again, this argument focuses too much on physicians and not enough on patients. If we look instead at the patient’s role, we see that assisted dying requires purposeful actions on the part of the patient, whereas a mechanical ventilator could be disconnected from an unconscious patient. Even some doctors who believe assisted dying is sometimes warranted think they should not write the prescription, but outsource it to someone else. This is a form of abandonment, in which doctors prize their self-image above the patient’s needs.

Patients who request assisted dying may be suffering from treatable depression. The diagnosis of depression is difficult because the symptoms overlap with those of terminal illness, and dying naturally produces sadness. Moreover, there are no good studies of the effectiveness of therapy in this setting. Nevertheless, the act requires physicians to refer patients for counseling if they believe a patient’s judgment is impaired by depression or another psychiatric condition, and that is a common reason doctors give for denying requests in Oregon.

Permitting assisted dying will put us on a “slippery slope,” leading to abuses, such as using the law for patients who are not terminally ill or who are especially vulnerable — for example, the uninsured. The best answers come from Oregon, where the law has been used sparingly (most requests are refused) and exactly as intended. (For details, see the Oregon Health Authority’s Division of Public Health reports.) Assisted dying there has accounted for 596 deaths over 14 years, only 0.2 percent of all deaths in the most recent year. Most patients were suffering from metastatic cancer, and the prognosis was clear. Far from being vulnerable, they were relatively affluent, well-educated, and well-insured, and nearly all were receiving hospice care at the time of their request. About a third who requested medication did not use it, but kept it at hand because it provided peace of mind. No law works absolutely perfectly, but this one seems to come about as close as possible.

Good palliative care can relieve all suffering, so permitting assisted dying is unnecessary. Probably most dying patients, even when suffering greatly, would choose to live as long as possible. That courage and grace should be protected and honored, and we should put every effort into treating their symptoms. (Palliative care in Oregon is among the best in the country.) But not all suffering can be relieved. Most pain can, but other symptoms can be harder to deal with — symptoms such as weakness, loss of control of bodily functions, shortness of breath, and nausea — and the drugs to treat them often produce side effects that are as debilitating as the problems they treat. Even worse for many patients is the existential suffering. They know that their condition will grow worse day after day until their deaths, that their course is inexorably downhill, and they find it meaningless to soldier on. Why should anyone — the state, the medical profession, or anyone else — presume to tell someone else how much suffering they must endure while dying? Doctors should stand with their patients, not against them.

Do you know about palliative care, the comprehensive treatment for the very sick, but not for those who are dying?

Some doctors do not.

As a physician, do you feel it is a sign of “failure” on your part, when longtime patients have grown tired of treatments, and simply want comfort as they approach end of life?

Some physicians think it is.

As the population ages, and hospitals prepare to care for more chronically ill patients, more physicians should get acquainted with palliative care, to not only to improve patient care, but as a potent cost-savings tool.

With palliative care, hospitals can avoid needless tests and procedures, in part, because patients no longer want them. Palliative care is the comprehensive treatment focused on pain, symptoms and stress of serious illness, or even spiritual assistance for the very sick. Some studies have shown it can extend life.

Still, although not widely practiced, palliative care is becoming part of the discussion among healthcare leaders to improve care, especially for the elderly.  In May, a panel of healthcare leaders met in Chicago as part of a HealthLeaders Media Breakthroughs session that focused on improving readmission rates for hospitalized cardiac patients. The talks veered off into other topics, among them palliative care, as well as hospice, or end of life care.

“Obviously, it’s probably one of the most complex topics we could discuss,” said Greg Johnson, DO, chief medical officer for Parkview Health, Ft. Wayne, IN, during the panel discussion.  ”I also think that when we talk about end-of-life care, we need to approach it with more curiosity and information than with judgment and direction,” Johnson says.

Although there were almost no palliative care programs in America a decade ago, about 63% of hospitals with 50 or more beds have a palliative care team, according to the Center to Advance Palliative Care. It is likely that palliative care is going to expand, but it is still largely misunderstood, even among physicians.

For those patients who are weary of dealing with their pain, tired of medical procedures, and who want to live their days as fully as possible, palliative care may be the answer. In cases of people even more seriously ill, and possibly closer to death, hospice may be the correct treatment option. Too often, physicians don’t pose the question: Patient, what do you want to do?

Bruce Robinson, MD, MPH, director of the chief of geriatric medicine at Sarasota Memorial Hospital in Florida told me how, too often, physicians may articulate their hopes for patients, even when it’s a terrible illusion.

“The patients want to keep that hope,” he says. “The doctors want to just do what they do and that’s how they make their living, so they are happy when a patient says, ‘I want you to do something. I want to pretend I’m not dying.’ So stuff gets done.”

Other physicians may not endorse palliative care, or even hospice care, because they wrongly feel those programs may reflect poorly on their own work, healthcare leaders tell me. Some doctors may see those programs as symbolic that they have given up hope, that all those procedures, all the plans for their patients, were for naught. That’s too bad.

At the Breakthroughs session, panel member Johnson raised the point that physicians “feel like it’s a failure” to have such discussions involving palliative or end of life care. That shouldn’t be the case, he says. “We have to be willing to follow-up what the patients’ goals are,” Johnson says.

“Because what I’ve seen too frequently is the patient will have stated their goals of care and then somewhere that gets overwritten. And we see the 94-year-old patient that didn’t’ want anything who is on on a ventilator for a month. And that’s a very sad thing.”

The essential question for palliative care is “how do we manage symptoms so the patient can feel as good as possible, and have optimal life experience? The conversation in chronic care management goes a long way,” said panel member Kathleen Martin, RN, vice president of patient safety and care improvement for Griffin Hospital, Derby, CT.

While palliative care is increasing, its generally poor name recognition, among the public, as well as among healthcare workers, including physicians, is a significant obstacle, Timothy E. Quill, MD, a professor of Medicine, Psychiatry and Mental Humanities at the University of Rochester School of Medicine and Dentistry tells HealthLeaders Media.

“Palliative care has a name recognition issue,” Quill says. “About 20% of the public may know what it is, but once people and patients learn what it is, their question becomes: ‘why didn’t I get that earlier, why isn’t that the care for all seriously ill people?’ Hospice care has a higher name recognition, but it’s for people at the end of life,” he says.

While there is some uncertainty what exactly is palliative care, some healthcare facilities are offering both palliative and hospice care programs, which they see as crucial to improve care among the elderly, and offering as many options to them as well as their families.

The Hospice of the Valley, in San Jose, CA, is one of those facilities that serves both populations.  There is an increasing need for mental health or community-based programs to assist the patients, says Sally Adelus, president/CEO of the Hospice of the Valley, told HealthLeaders Media.

Because the scope of care is evolving for the elderly populations, it’s important that physicians work closely with families to consider palliative or hospice care options. The Sutter Health system, a network of doctors and hospitals in northern California, has an advanced illness management program that partners with patients and families to better coordinate care for palliative patients and also consider end of life options, says Brad Stuart, MD, chief medical officer at the Sutter Care at Home in Fairfield, Calif.

Stuart says it’s important that both disciplines (palliative and hospice) “collaborate for the best outcomes we can have.” Much of the focus for improved patient care, especially those in palliative care, is moving toward ” focusing on goals of patients in their own lives.”

Even in the hospice and palliative care world, however, there are “turf” struggles, as in many other areas of healthcare, he says. “We’re trying to change the medical culture. It’s an uphill battle,” Stuart says.  Physicians gaining knowledge about such care is a start, he adds.