Reimburse Doctors For Helping Patients Plan End Of Life Care, Experts Say
Posted on Monday, March 23rd, 2015 at 6:44 pm by lifemediamatters
This piece was first published in Reuters Health. President Randi Belisomo is a contributor.
Physician incentives are needed to improve end of life care in the U.S., health experts said Friday at an Institute of Medicine (IOM) forum.
The forum convened at the National Academy of Sciences to discuss action on the recommendations of the IOM’s seminal fall report, Dying in America.
“Our current system is not equipped to deal with these challenges,” said IOM President Victor Dzau, citing a rising number of elderly with multiple chronic illnesses, too few palliative care services to keep pace with demand, and time pressures that keep providers from having conversations with patients about end of life preferences and values.
“We need to make sure that healthcare providers do not shy away from these discussions,” said Senate Aging Committee Chairman Susan Collins (R-Maine). “Until we solve the reimbursement issue, I don’t think we are going to make true progress.”
Senator Mark Warner (D-Virginia) said he regretted his failure to talk with his mother, an Alzheimer’s patient, about the end of life care she desired. He lost the opportunity to have this conversation when she lost her ability to communicate, nine years before her death.
“I was an informed citizen at the time, the governor of Virginia, and yet my family and I didn’t have a full understanding of everything that was before us,” said Warner, indicating that he will reintroduce a measure to create a Medicare and Medicaid benefit for end of life planning.
When people fail to plan for end of life care, they may suffer through ultimately futile, invasive and often unwanted treatments, advocates say. Surgeon and author Atul Gawande detailed the “medicalization of mortality” occurring over the past several decades, noting that the most likely time for Americans to undergo surgery is the last week of life.
“We fail to recognize that people have goals and priorities in their lives we need to serve besides just living longer,” Gawande said. “The way you learn what people’s priorities are is by asking.”
Last year, the Centers for Medicare and Medicaid Services rejected an American Medical Association request to create a billing code for doctors to use when they spend time helping patients plan for future care. Patrick Conway, chief CMS medical officer, said the coding would be considered this year.
If physicians will be reimbursed, work remains to ensure the quality of care patients receive. “Metrics in this area are not easy to develop, but they’re not impossible,” said Christine Cassel, president of the National Quality Forum. “Payers need to know they are paying for the right kind of care.”
Fearing Lawsuits, Some Physicians Provide Unwanted Medical Treatments To Seriously Ill Patients
Posted on Friday, March 13th, 2015 at 7:33 am by lifemediamatters
Physician decision-making is often tinged with concern for legal liability, causing some doctors to provide unwanted, often futile, medical treatments to patients nearing death, said an attorney and bioethicist to a crowd this week at the University of Chicago’s MacLean Center for Clinical Medical Ethics.
“Clinical challenges at the end of life are often about when to say ‘we’re done,’ about how far to go in treating patients who are unlikely to survive, or who are unlikely to recover,” said Nadia Sawicki, an associate professor of law at Loyola University Chicago. “As a legal matter, patients and their families typically have the ultimate say in decisions. Physicians and other health care professionals serve a vital role in guiding those decisions and making recommendations based off their professional expertise.”
Physicians ought not be in a position where the threat of legal liability causes them to violate their own ethical convictions.
Experienced physicians are usually more realistic about a patient’s prognosis or disease trajectory than family or close friends. But in some cases, Sawicki said, physicians fearing future litigation from family members for withdrawing medical treatments will push for continued, often aggressive, therapies.
“Evidence shows that in many, if not most cases of futility conflicts, health care providers and institutions ultimately do continue to provide treatments requested by families, even if this violates their own professional convictions about medical practice and medicine,” she added. “Physicians ought not be in a position where the threat of legal liability causes them to violate their own ethical convictions.”
Health care providers are more likely to face litigation for withdrawing treatments than for providing them, a symptom of the “contradiction” in American law, Sawicki said. Even though Americans have the right to medical self-determination, including the freedom to decline life-saving medical interventions, tort law does not recognize prolonged life as a legally compensable injury. However, some courts are now reconsidering that position and allowing claims to proceed.
“Patients can be harmed, as much by receiving unwanted care, as by having care withdrawn,” she added. “Courts are more effectively balancing tort law and consent. In a sense, with the threat of liability more balanced on each side, U.S. physicians should feel encouraged to do what they think is best in accordance with professional ethics and standards of care.”
She went on to list a handful of academic studies exploring the motivations of some medical providers for ignoring patient or surrogate wishes. According to a 1995 study published in the American Journal of Respiratory and Critical Care Medicine, 34 percent of physicians continued life-sustaining treatments, despite patient wishes that they be halted.
“We conclude that physicians do not reflexively accept requests by patients or surrogates to limit or continue life-sustaining treatment, but place these requests alongside a collection of other factors, including assessments of prognosis and perceptions of other ethical, legal, and policy guidelines,” researchers write. “While debate continues about the ethical and legal foundations of medical futility, our results suggest that most critical care physicians are incorporating some concept of medical futility into decision making at the bedside.”
A 2012 survey led by Dr. Ferdinando Mirarchi, medical director of the Department of Emergency Medicine at the University of Pittsburgh Medical Center, determined that 20 percent of physicians would defibrillate a patient with a clear do-not-resuscitate order.
“There are times where we have seconds to minutes to act,” he said. “In those instances, when a document gets misinterpreted, someone lives or someone dies.”
Mirarchi’s findings were echoed in a recent study published in BMC Medical Ethics. Fifty-two percent of physicians agreed that the risk of liability is lower when keeping someone alive against their wishes than in mistakenly failing to resuscitate.
“When confronted with a spouse’s wishes that conflict with those provided by the patient’s (advance directive), over half of respondents considered the threat of legal liability as important or very important to their decision,” researchers write.
Reflections Of Med Students Upon First Patient Deaths Prove Valuable To Experienced Clinicians
Posted on Thursday, February 26th, 2015 at 11:03 am by lifemediamatters
Medical students caring for the terminally ill must learn to be both sensitive and resilient to cope with workplace stress and provide comfort to patients and their families, said a bioethicist to a crowd this week at the University of Chicago’s MacLean Center for Clinical Medical Ethics.
“Being present to patients and families is a complex skill of being personally engaged, available and open to particular needs,” said Mark Kuczewski, director of the Neiswanger Institute for Bioethics and Health Policy at Loyola University Chicago. “There is a struggle to be desensitized enough to do one’s work, but sensitive enough to deal with the particular patient and family.”
Kuczewski, in collaboration with other end of life care experts, asked 68 students completing clinical clerkships to reflect and write about their experiences caring for dying patients. Researchers then mined answers for common themes.
Many students noted a lack of discussion about care options for patients approaching death, Kuczewski said, because clinicians were too immersed in details of immediate treatments.
Not once did my team mention or consider that Ms. W was in the process of dying. I did not hear any talk about end of life care, so I didn’t think it was necessary to talk about this with the family. I spent a lot of time with them (the family) answering questions…She (patient’s sister) was very suspicious and felt like she was not getting the whole story. I don’t think she did get the whole story either.
Other students said they were shocked by the suddenness of death and lack of acknowledgement by nurses and attending physicians.
I didn’t even get a chance to say goodbye to the family. Before I even realized what had happened, the family was gone, the patient removed from the list and my next patient waiting for me to take care of them. The team didn’t make any comments about her death that morning, and everything seemed to continue and move on as if nothing had happened…I initially did not know what I wish had happened, but the way the situation ended lacked any closure for me.
Kuczewski identified common “pledges” from students from which veteran clinicians could benefit. The most common commitment: to remain aware of and sensitive to the needs of families, and not allow needs to go unaddressed.
All I can do is take from this experience and move forward by being there for others when the time comes.
I will never let that be OK again.
The second most common pledge was to refer families to pastoral care.
If I am not available to be present with those grieving, I will make sure that other qualified people are, so these people are not alone.
On a couple of different occasions the family asked me if I would join them in a quick word of prayer when I came to check in on the patient. Through these moments I completely forgot that I was in the medical profession, and I became connected and a part of this family and the grieving and emotional process.
The study, published in the medical journal Academic Medicine, calls for teaching institutions to standardize team protocols to help students formally recognize and process patient deaths.
“Something akin to a spiritual ‘time out’ procedure after a patient dies might be an efficient yet effective way to acknowledge death,” researchers write.
It also calls on educators to find ways to support students in their wish to remain connected to dying patients and their families.
“Most immediately, students need support in developing habits of action conducive to their stated goals,” they write. “Encouraging students to follow dying patients who have rotated off their service, allowing students to offer their pager number and physical presence to dying patients and other like behaviors should be recognized as ’best practices’ among faculty.”
POLST Pioneer Susan Tolle: How Care Preferences May Become “For Tonight”
Posted on Wednesday, November 12th, 2014 at 11:08 pm by lifemediamatters
For many seriously ill and aged Americans, advance health care directives alone will not be enough to ensure their end of life care preferences are honored in case of emergency or incapacity, said Oregon Health and Science University medicine professor Dr. Susan Tolle during a lecture Wednesday at the University of Chicago MacLean Center for Clinical Medical Ethics.
Tolle, the director of the OHSU Center for Ethics in Health Care, began developing and disseminating the Physicians Orders For Life-Sustaining Treatment (POLST) program in 1991. POLST is a medical order that allows the terminally ill to make clear what medical treatments they desire and wish to avoid; they may indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. They may also indicate the location where they prefer to receive care.
POLST, first adopted in Oregon, is far more detailed than conventional living wills or advance directives. The form must be signed by a medical practitioner to be valid.
Tolle’s hope is that patients in their last year of life will carry a copy with them to guide emergency medical services to provide or withhold specific treatments. Ideally, a POLST form will be completed only after meaningful conversation among the patient, doctor and family.
“There has been general agreement for at least 20 years that people have a right to make decisions about the treatments they want at the end of life,” Tolle said, emphasizing that traditional advance directives are still valuable in lifting emotional burdens from family members deciding among end of life treatments for loved ones.
“It is emotionally less demanding for family members who stand by what they’ve been told to do,” Tolle added. “Advance directives also allow you to appoint a surrogate. They do some really important things.”
However, Tolle argued that advance care plans are more “philosophical and for the future.” As seriously ill individuals approach death, she said those plans should become “for tonight” in the form of a medical order.
Increased rates of advance directive completion have had little effect on the location of death; while only 10 percent of elderly Americans say they wish to die in a hospital, more than 40 percent do.
Tolle led a recent study of death records from 58,000 people who died of natural causes in 2010 and 2011 and determined some 30 percent had copies of their POLST form in a state-wide registry. Researchers compared the location of death on death records to POLST patient preferences, Reuters Health reports.
POLST includes three order sets that could impact the location of medical care. More than two-thirds of patients with POLST forms had chosen the first option: “prefers no transfer to hospital for life-sustaining treatments . . . transfer if comfort needs cannot be met in current location.”
In 2013, Illinois modified the Department of Public Health Uniform DNR Advance Directive to closer resemble the National POLST Paradigm standard. More than a dozen other U.S. states have similar programs.
Dr. Susan Tolle will receive the 2014 MacLean Center Prize in Clinical Ethics, an award of $50,000, during the Dorothy MacLean Fellows Conference on ethics in medicine. The conference will be held at the University of Chicago Law School on Friday and Saturday, Nov. 14th and 15th. The MacLean Center Prize is the largest award in the field of clinical medical ethics.
Media Landscape Opens Opportunity For Earlier, Better End Of Life Care: ASCO’s Inaugural Palliative Care Symposium
Posted on Saturday, October 25th, 2014 at 7:04 pm by lifemediamatters
The prevalence of end of life decisions in current media and literature provides an opening for physicians to prompt conversations about the subject with patients, said Dr. Anthony Back, a Seattle Cancer Care Alliance medical oncologist, in remarks to the Palliative Care Oncology Symposium in Boston. Before beginning such difficult dialogue, however, he offered frameworks to facilitate end of life conversations both early and later on in a patient’s disease trajectory.
The Symposium was the first such hosted by the American Society of Clinical Oncology to promote discussion and integration of palliative care- a medical specialty designed to address physical, emotional and psychological symptoms of disease. The meeting drew an international audience of medical, radiation and surgical oncologists along with nurses, social workers and physician assistants.
We have to role model the developmental pathway to wanting to do this, to learning to do this, to becoming a ninja.
“This is a window of opportunity to get in the public dialogue in a really public way,” Back said during a session addressing the skills required for optimum end of life care. Back pointed to The New York Times’ widely-circulated coverage of Joseph Andrey and his daughter’s struggle to honor his wish to die at home. Back also outlined social efforts underway nationwide as a result of a project that began in his home of Seattle, Death over Dinner, along the success of physician Atul Gawande’s new book, Being Mortal. Back helped launch Vital Talk, a nonprofit aiming to help foster better doctor-patient communication.
“This reflects the work done over the last 20 years that set the stage for this discussion,” Back said. “Being Mortal wouldn’t be on The New York Times’ best-seller list if not for the work you are doing.”
He emphasized, however, that work remains to help physicians charged with navigating patients through the complex medical decisions they may face as they approach the end of their lives. “The task for physicians is the question of ‘how do we get to telling patients that we will give them an extra layer of support to talking about the really tough stuff?’” Back said.
Communication, he warned, is a learned expertise that must include frank, explicit discussion about what may happen when curative treatment options are no longer available. “We have to role model the developmental pathway to wanting to do this, to learning to do this, to becoming a ninja,” Back said to laughter and applause.
Physicians miss opportunities to educate patients about what may be ahead in one of three ways, he said: 1) in thinking “bad stuff won’t be quite so bad” if you don’t talk about it, 2) by delaying discussion about “bad stuff until you absolutely have to,” or 3) in thinking that “cutting to the chase” will save time and decrease patient distress.
Those approaches are faulty, Back warned, and asked the audience to consider how they may move such conversations “upstream” in ways that will not “completely freak everyone out.”
For end of life dialogues occurring early on in a patient’s illness- the optimal time for such conversation- Back offered the framework P.A.U.S.E:
P.A.U.S.E. for early end of life dialogue
- Pause: As “time” is often cited by physicians as a barrier to facilitating what can be a lengthy and complex discussion, they should stop to consider that this conversation may be more important than one about further treatment options.
- Ask permission: Physicians should ask for permission to have this conversation and explain its importance. “Could we take a moment?” or “This will help me guide you,” are two conversation-starters that prove empowering to the patient.
- Suggest a surrogate: Patients who do wish to engage in advance care planning are often thwarted by confusion about proxy selection. Physicians should ask simply, “Who is the person who knows you the best?”
- Expect emotion: The many emotions that accompany such conversations often add to the time required to facilitate dialogue, further necessitating the need for physicians to “pause.” Doctors must empathize and realize the topic is a tough one for everyone in the room.
For end of life discussions taking place later in a patient’s disease course, Back offered the framework R.E.M.A.P:
R.E.M.A.P. for late end of life dialogue
- Reframe: Physicians are obligated to communicate that the “status quo” is no longer working. However, they often face tough follow ups: “There’s another chemotherapy after this one, right?” “I only want to talk about positive things,” or “I want to be aggressive.”
- Expect emotion: In response to these follow ups, there is even greater urgency to empathize with patients from the start
- Map: The conversation should turn to what a patient finds most important and to his or her goals. Physicians should explore patients’ interests, ask to see photographs and inquire about special family occasions or milestones.
- Align: Physicians should ask about a patient’s values and the beliefs guiding any particular goal.
- Plan: The final step for physicians taking part in late end of life dialogues is to match any particular treatment to a patient’s stated values.
Back acknowledged that the execution of a “P.A.U.S.E.” or “R.E.M.A.P.” conversation is often met with resistance. “Patients often say ‘it doesn’t feel like time to give up,”” Back said. “Assure them that ‘I’m not giving up on you.’”
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