End-of-Life Choice, Palliative Care and Counseling

Posts Taggedphysicians

Patients Have Trouble Giving True Informed Consent

by Harriet A. Hall, MD
KevinMD
January 1, 2013

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. More

What Doctors Need to Learn About Death and Dying

by Karen M. Wyatt, MD
Huffington Post
December 6, 2012

“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. More

Overtreatment Is Taking a Harmful Toll

By Tara Parker-Pope
The New York Times
August 27, 2012

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.” More

Dr. Marcia Angell: Ballot question to allow physician aid in dying respects patient wishes

By Dr. Marcia Angell
Boston.com
July 31, 2012

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.

Palliative Care Deserves Physicians’ Attention

By Joe Cantlupe
HealthLeaders Media
July 19, 2012

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.