End-of-Life Choice, Palliative Care and Counseling

Posts Taggedphysicians

Assisted Dying: Experts Debate Doctor’s Role

By Katie Moisse
ABC News
July 13, 2012

Peggy Sutherland was ready to die. The morphine oozing from a pump in her spine was no match for the pain of lung cancer, which had evaded treatment and invaded her ribs.

“She needed so much morphine it would have rendered her basically unconscious,” said Sutherland’s daughter, Julie McMurchie, who lives in Portland, Ore. “She was just kind of done.”

Sutherland, 68, decided to use Oregon’s “Death With Dignity Act,” which allows terminally-ill residents to end their lives after a 15-day requisite waiting period by self-administering a lethal prescription drug.

“Her doctor wrote the prescription and met my husband and me at the pharmacy on the 15th day,” said McMurchie, recalling how her mother “didn’t want to wait,” she said. “Then he came back to the house, and he stayed with us until her heart stopped beating.”

But not all doctors are on board with the law. In the 15 years since Oregon legalized physician-assisted dying, only Washington and Montana have followed suit, a resistance some experts blame on the medical community.

“I think it has to do with the role of physicians in the process,” said Dr. Lisa Lehmann, director of the Center for Bioethics at Brigham and Women’s Hospital in Boston and assistant professor of medicine at Harvard Medical School. “Prescribing a lethal medication with the explicit intent of ending life is really at odds with the role of a physician as a healer.”

More than two-thirds of American doctors object to physician-assisted suicide, according to a 2008 study published in the American Journal of Hospice and Palliative Care. And in an editorial published Wednesday in the New England Journal of Medicine, Lehmann argues that removing doctors from assisted dying could make it more available to patients.

“I believe patients should have control over the timing of death if they desire. And I suggest rethinking the role of physicians in the process so we can respect patient choices without doing something at odds with the integrity of physicians,” she said.

Instead of prescribing the life-ending medication, physicians should only be responsible for diagnosing patients as terminally ill, Lehmann said. Terminally ill patients should then be able to pick up the medication from a state-approved center, similar to medical marijuana dispensaries.

But assisted dying advocates say doctors should be involved in the dying.

“Patients deserve to have their physician accompany them there and not walk away,” said Barbara Coombs Lee, president of the Denver nonprofit Compassion and Choices.

Coombs Lee, a nurse-turned-lawyer and chief petitioner for the Oregon Death with Dignity Act, said decisions about death should be no different than other treatment decisions.

“Physicians don’t walk away from patients who make other intentional decisions to advance death, such as refusing a ventilator or a pacemaker,” she said. “Why walk away from a terminally ill patient requesting life-ending medication?”

McMurchie agrees.

“Anything that improves access to assisted dying is a step forward,” she said. “But I think shepherding patients through their final days is a huge part of a physician’s responsibility.”

Better Preparation Could Improve the Quality of Death–and Life–for Terminal Patients

By Marissa Fessenden
Scientific American
July 9, 2012

Terminally ill patients in the U.S. these days face expensive care and prolonged declines. And many hospitals lack a designated palliative care team, which focuses on patient comfort at any point in the life cycle but becomes more critical at the end. In terms of care, the solution to our medical system’s woes might be as simple as a conversation about how we die.

“Many clinicians are afraid to talk about prognosis—how long a patient may have to live,” says Alexander Smith, a palliative care physician at the University of California, San Francisco. “Talking about death in America is forbidden, a taboo topic.”

Voices clamor to be heard in the discussion about end-of-life care. Patients prefer to die at home and in comfort. Physicians struggle to speak to patients they have been trying to save but worry about legal issues. Politicians debate the best way to curb rising health care costs and shun “death panels.” Amid this fervor, researchers in Sweden found last year that conversations about imminent death are associated with improved care and less pain and suffering. Now, a team at Harvard Medical School reveals more detail about the social and psychological factors that affect quality of death.

The researchers interviewed 396 advanced cancer patients and their caregivers, and then followed up a few months after death. Nine psychosocial factors were found to make a significant difference in the quality of patients’ final days.

In surveys, patients define (pdf) a good death as one where they can manage their pain, remain lucid, feel prepared and interact with family members. In the new study, patients with a higher quality of life during their final days included those who avoided hospitalizations and stays in the intensive care unit (ICU), were not worried about death, prayed or meditated, received care at home, did not use a feeding tube, were visited by a pastor in the hospital or clinic, did not undergo chemotherapy in the final week of life, and felt an alliance with their oncologist regarding therapy. The results were published online July 9 in the Archives of Internal Medicine.

ICU stays in the final week of life mattered the most, accounting for 4.4 percent of variance in outcomes, whereas a sense of alliance between patient and physician accounted for 0.7 percent. Much of the variance remained unexplained. Other influences could include underlying cancer biology or even a patient’s personality and general outlook on life, says Holly Prigerson, a psychiatry associate professor at Harvard Medical School and the study’s senior author. But, these factors could give policymakers and hospitals a cost-effective road map for end-of-life care decisions in the future. Prigerson cites the frustration and helplessness that oncologists feel when their patients are beyond curative care. Withdrawal, however, apparently is not the answer. “Just being present and being there, rather than abandoning patients and withdrawing,” she says, “matters a tremendous amount to patients.”

But not all of the findings have clear policy implications, says Diane Meier, a professor of geriatrics and internal medicine and director of the Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York City. How much a patient worries or whether they find comfort in prayer may be hard to change. But already, physicians are trying to keep patients approaching death out of the ICU. Meier says she expects more clinics, hospitals and offices to welcome pastors. Finally, training physicians to convey a sense of commitment and alliance with their patients can help. “These are teachable skills that right now are not in the curriculum at medical schools,” she says.

Medical ethicists still debate how to best communicate end-of-life options to patients. But some states, such as New York and California, mandate that physicians start the conversation and offer information on palliative care designed to improve patient comfort. Such discussions could also reduce costs. In a 2009 study, Prigerson’s team found the cost of care in a patient’s final week was $1,041 (35.7 percent) less, if he or she had an end-of-life discussion with doctors.

A reluctance to discuss end-of-life decisions may lead to care that is too little and too late. Half of all adults older than 65 years of age made an emergency room (ER) visit in the last month of life, according to a study in the June issue of Health Affairs. Data from the Health and Retirement Study was linked to Medicare claims to track ER use and death. Three quarters of the emergency visits led to hospitalizations and of those admitted, two thirds died there.

Hospital emergency departments focus on triage and stabilization and are not equipped to deal effectively with patients near the end of life due to illness or age, says Smith, the study’s lead author. The visit comes at a time of crisis for these patients and their family members, he explains. Many are not prepared for the end of life. For instance, only 10 percent of the study participants were enrolled in hospice care. “We’ve come a long way from where we were 10 to 15 years ago,” Smith says. But, he adds, clinicians need to develop more robust palliative care programs and focus on care outside the hospital, such as in doctor’s offices and in the home.

Improvement on the way
One of the topics physicians could and often do discuss is palliative care, which offers relief and comfort, such as medicine to tame nausea. Large hospitals are most likely to have palliative care teams, finds a 2011 report from the CAPC. The report gave the nation as a whole a B grade—up from a C in 2008—observing that less than a quarter of all states still need significant improvement. However, there is only one palliative care specialist for every 1,200 people living with a serious or life-threatening illness in the U.S. compared with one oncologist for every 141 newly diagnosed cancer patients. Additionally, only 54 percent of public hospitals provide palliative care.

That access could be extended under the Patient Protection and Affordable Care Act of 2010 (pdf), recently affirmed by a Supreme Court ruling, says Kathy Cerminara, a law professor at Nova Southeastern University in Florida and an expert in law governing treatment at the end of life.

Two provisions in the act explicitly address hospice care, a common way for patients near death to receive palliative services. The first provision authorizes the secretary of the U.S. Department of Health and Human Services to fund a study determining whether patients in hospice programs would benefit from offering curative and palliative cared simultaneously (For now, hospice care typically requires patients to forgo curative treatment in order to enroll.)

The second provision is likely to challenge rural health providers, an already struggling sector, according to the palliative care report card. The provision requires reevaluation for any patient remaining in hospice care after six months. Hospice programs that show a high rate of reenrollment can face review and potential fines. Medically underserved areas, including rural stretches of many states, struggle with short staffing and a lack of hospice providers already, Cerminara explains. Requiring face-to-face encounters for patients hoping to remain on hospice may prevent professionals from recommending service in the first place. “Congress has a good goal in trying to prevent fraud and abuse, but they’re doing it in a rough way,” Cerminara says.

Overall, a change in end-of-life care appears to be on the horizon, Prigerson says, that has more to do with patients’ social and psychological needs than conventional biomedicine. “There has been a dramatic shift in the recognition of the importance of attending to the psychosocial needs of patients who are dying,” she says. But patients still could benefit from more consistent dialogue about their choices, not to mention wider access to care.

What Makes the End-of-Life Experience Peaceful?

By Jenifer Goodwin
US News
July 9, 2012

Dying patients face their final days better if they are not in the hospital, not on a feeding tube or chemotherapy and feel that they have a trusting relationship with their doctor, a new survey of terminally ill cancer patients reveals.

Other factors that helped them find peace in the end, the survey showed, were prayer, meditation, a pastor’s visit and freedom from excessive worry or anxiety.

The survey involved about 400 U.S. patients with advanced cancer who were told they had less than six months to live, and their closest caregiver, usually a spouse. The cancer patients, whose average age was 59, were surveyed an average of four months before they died. Their caregivers were then surveyed about the end-of-life experience.

Several factors determined how the patients and their caregivers rated their quality of life at the end. Among the most important: not dying in the intensive care unit or hospital; not having to endure aggressive, life-prolonging treatments at the end, such as feeding tubes or chemotherapy; and feeling their doctor saw them as a whole person and treated them with respect, said lead study author Holly Prigerson, director of the Center for Psychosocial Epidemiology and Outcomes Research at Dana-Farber Cancer Institute in Boston.

“What the results suggest is that attention to patients’ psychosocial needs, their spiritual needs, their comfort, their worries, their need to not be abandoned by their health care team and to feel valuable and significant are the things that matter most to the patients and their families,” Prigerson added.

“It’s not . . . how much chemo or what procedures are performed or heroics. In fact, it’s the opposite. It’s the human connection that seemed to be the most important [for] good quality of end-of-life care,” she said.

The research was published online July 9 in the Archives of Internal Medicine.

Oncologists tend to focus on curing patients, but many are less comfortable dealing with end-of-life issues, the experts said. The findings show that even when a cure is no longer possible, patients still want to know their doctors care.

“When patients aren’t curable anymore, a lot of physicians feel there is very little they have to offer their patients, but what these results suggest is the opposite,” Prigerson said. “In fact, physicians are one of the most important influences on the quality of life of their patients — by being there, being emotional available, being present and not emotionally abandoning someone because you can’t cure them of their cancer.”

Alan Zonderman, a senior investigator at the U.S. National Institute on Aging, said the study is important because it includes actual data, rather than anecdotes, about what matters to patients and their families at the end of life.

“It means that we can give physicians some real guidance based on some genuine evidence from patients and people who are truly close to the patient,” said Zonderman, who was the co-author of an accompanying editorial in the journal.

The findings also illustrate how important it is for physicians who treat cancer patients to be able to “shift gears” and focus on the quality of a patient’s last days when a cure is no longer possible, said Dr. Michele Evans, senior scientist and deputy scientific director at the U.S. National Institute on Aging.

Having that conversation isn’t easy, Evans added. “We’re good at telling patients: ‘The nausea, the hair loss, the vomiting, it’s worth it, because we are going to get you to a cure,’” Evans said. “But in the course of some diseases, we are not going to get there.”

That’s when it’s important for physicians to have a strong, open relationship with patients, to be able to tell them the truth, and to be there going forward, she added.

Another key finding was the importance patients placed on “choosing where they were going to die and how they would spend the last time available to them,” Evans said.

“There is no way to make an [intensive care unit] a pleasant environment,” Evans said. If cancer patients are spending their last days there, “it often means the care has gotten out of control, and is no longer based on quality of life. It’s preservation of life at the cost of quality of life,” she added.

To make sure those end-of-life needs are met, experts say cancer patients should have documents such as advance directives, living wills and durable power of attorney for health care, which appoints someone to make health care decisions should you no longer be able to.

But equally as important, Evans said, is for cancer patients to make sure they discuss their wishes with their family and their physicians.

“It first has to start with a conversation with your immediate family, and you have to understand the dynamics of your family, so that when you may be too ill to make decisions, that they understand how you would like things to be done,” Evans said.

“So many times, we never had that conversation. Families will say, ‘We don’t know what to do, just treat him. He’s a fighter.’ This person in life may be a fighter. But what happens if we are going to lose the fight? Do you want to go down fighting, or do you want to have time to feel not so bad and to have us focus on the quality of your life?” Evans continued. “We as Americans, we don’t have that conversation frequently enough, and we don’t have it with our physicians.”

Oncology + Palliative Care = Winning Team

By Hollye Harrington Jacobs
Huffington Post
June 26, 2012

Right after my FBC diagnosis (f-bomb breast cancer for new readers), my husband and I had an information gathering week. After a series of diagnostic tests to determine the extent of the disease, we had a series of meetings to interview doctors to determine who would become a part of my/our health care team.

One big misnomer in our culture is that doctors (solely) develop a patient’s plan of care. No. No. No. This could not be farther from the truth! Patients have a real responsibility to be fully engaged in the development (and revision) of a plan of care.

After the testing was complete, we had meetings and interviews with the following doctors:

  • Two surgical oncologists (surgeons who specialize in breast cancer)
  • Three oncologists (doctors who specialize in treating cancer)
  • Two radiation oncologists (doctors who specialize in radiation of cancer)
  • Two plastic surgeons (doctors who specialize in reconstruction after a mastectomy)
  • One palliative care physician (doctor who specializes in pain management)

Whoa. Whoa. Whoa. Are you wondering, “Why palliative care?” Most people hear the phrase “palliative care” and think “buy the plot… she must be dying.”

We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief. If you take only ONE thing from this blog post (though I hope that you take more!), please learn that palliative literally means the relief of pain. This is such a pervasively-misunderstood concept in our culture, even in health care. Don’t even get me started.

Well, I already got myself started, so let me tell you that as a nurse and now a patient, I am all too familiar with the fact that surgeons and oncologists are not experts in pain management, despite inflicting a great amount of pain on their patients, which is quite an oxymoron, if you ask me. But it’s the truth. The silver lining is that there is an area of specialty focused on relieving pain and symptoms and it’s called… palliative care!

Incorporating palliative care into a patient’s care from the time of a diagnosis is deeply important to me because I have witnessed the benefits of palliative care as a nurse and experienced the benefits of palliative care as a patient. Consequently, I want every person who has to go through the wretched treatment for this disease to have access to the benefits of palliative care.

Such benefits include:

  1. Pain management
  2. Symptom management (e.g., fatigue, anxiety, shortness of breath, nausea, depression and constipation)
  3. Coordination of care
  4. Improved quality of life

Because the side effects of the disease and its treatment can linger… and linger… and linger, cancer has the potential to become a chronic issue. Speaking of which, I still can’t remember much of anything, courtesy of chemo brain. I also still can’t feel my toes, courtesy of the chemotherapy-induced neuropathy.

The great news is that the fields of oncology and palliative care are beginning to work together more consistently from the time of a patient’s diagnosis. This has traditionally not been the case because of the assumption that palliative care is only helpful at the end of life.

In fact, consistent with recommendations of the American Society of Clinical Oncology, the National Cancer Policy Board, and the National Comprehensive Cancer Network, concurrent palliative care is slowly but surely becoming acknowledged as a best practice for patients.

Finally, it is no longer the case that palliative care is consulted only at the time of a patient’s death, which is magnificent silver lining, if you ask me!

Should Doctors Learn to Grieve?

Why is it so difficult for doctors to confront the truth when a patient is dying, and almost impossible for most to talk about it openly with the patient and loved ones?

Last week I shared a hunch. A journalist asked me the question, “Why do doctors find these conversations so hard?” I said I could only speculate. But I would base my guess on decades of practice as a nurse and physician assistant, and watching doctors from the vantage points of those allied professions.

My guess was that doctors are among the people in our society most frightened by death. Their fear reinforces our society’s death taboo. They have not yet learned to live in harmony with mortality, and they don’t know how to grieve. Every dying patient presents another opportunity to deny the inherent role of loss and sadness in every human being’s life story. They act as though awareness of our transience does not define human consciousness, nor form the basis of our common shared humanity. In this way doctors are a bit “inhuman.”

The reporter said, “Wow, that’s really interesting.” Then the conversation ended.

This week comes news that science corroborates my hunch. The scientific study feels like synchronicity, coming so close on the heels of my flight of ideas.

Sunday’s New York Times carried Dr. Leeat Granek’s description of research into whether oncologists grieve when their patients die. She reports her central finding that, “Not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves, as well as for the quality of care they provide. “

Dr. Granek’s study reveals that most oncologists suffer from unacknowledged grief, and they experience their sadness all mixed up with feelings of guilt, self-doubt, failure and powerlessness. They keep these feelings to themselves because that is the professional code. As an aside, I’ll mention here that professional approval of suppressed grief almost went to the extreme of labeling demonstrable grief a mental illness. But the panel of psychiatrists updating the DSM (Diagnostic and Statistical Manual of Mental Disorders – the bible of mental illness and its billing codes) bowed to public criticism and reverted to a two-month exception for bereavement in its definition of depression.

Granek’s work found that doctors’ unacknowledged grief comes out in impatience, irritability, emotional exhaustion and inattentiveness. Half the study participants admitted their thwarted grief affects the care of subsequent patients. It motivates them to continue aggressive, fruitless treatments long after palliative care would be more appropriate and to distance themselves from patients as death approaches.

We must draw the stunning and unavoidable conclusion that doctors’ averted grief constitutes an important cause of the deplorable end-of-life care that is America’s norm. Patients receive warrantless treatment through repeated hospitalizations and suffer the inevitable pain, bodily invasion, isolation and loneliness it brings. Perhaps instead of calling for more medical education, we should call for guidance in grief resolution and support for its expression.

When he was 82 my father suffered a fatal heart attack during a minor surgical procedure. After he died, my sister and I brought my mother to the hospital. I have always admired the doctor who came to us in the visitation room, crouched next to my mother’s chair, and wept. He gave my mother a great gift, and even through her creeping dementia, she never forgot it. He didn’t know my father well, but he was willing to feel and reveal his unity with the universal tragedy of losing one who is most dear. “You are not alone,” his tears said to her. “You and I and all human beings who love deeply must also someday bear the pain of loss.”

Grieving openly serves the important function of assuring ourselves and others that it is normal, and temporary, and part of a full and authentic life. Only suppressed grief threatens one’s mental health.
With training and practice, I believe doctors could learn to experience the sadness of a patient’s death, acknowledge it, decouple it from feelings of guilt or inadequacy, and move to the other side of grief. As poet Mary Oliver reminds us, though we must journey through black rivers of loss, the other side is salvation.

Doctors would do well to heed Oliver’s advice:

To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.