Tagged: Healthcare in the United States

Death with Dignity: Vermont House to vote amended end of life bill

The Vermont House will soon vote on a more stringent version of the Senate legislation known as “Death with Dignity.” The House legislation would grant physicians the ability to prescribe life-ending drugs to some terminally ill patients; however, the bill has more caveats, such as mandatory hospice enrollment.

Several weeks ago, the Senate whittled down its 22-page bill to just two pages, simply granting doctors immunity from prosecution for supplying life-ending drugs to any terminally ill patient with less than six months to live.

Vermont Death Act

But with a 7 to 4 vote, the House Human Services committee backed a new bill restoring much of the process the Senate version eliminated, such as the requirements for both oral and written requests, and a 48-hour waiting period before filling a prescription. Furthermore, it requires every prospective patient to have an advanced directive and be enrolled in hospice, VPR’s Bob Kinzel reports.

“We have all of the safeguards that they have in Oregon. We have a 15-year track record in Oregon with this law,” said Rochester Rep. Sandy Haas, a Democrat who helped overhaul the Senate’s bill.

Oregon mandates patients verbally request life-ending drugs to their physicians, followed by a 15-day waiting period and then another verbal request. Patients also must submit written requests. Then, they wait 48-hours before picking up the barbiturates.

“That bill was about doctors. The bill we passed this morning is about patients,” Haas said. “The Senate bill purports to be immunity for doctors for malpractice, basically for misprescribing, for confusing patients about what happens.”

Republican Rep. Anne Donahue from Northfield, said she worries the new version will make it easier for families to coerce loved ones into committing suicide. “A person can then wait a month or two or three or more before actually taking (the drugs),” Donahue said. “And at that point there’s absolutely no protection about coercion, family pressures, financial pressures and even whether a person still has the capacity to make that decision.”

Donahue said she favors how the Senate version limited the ability of the state to intervene once an individual committed to end his or her life. “I think that the direction that the Senate went made a huge amount of sense and didn’t have the intrusion on rights and the intrusion of the state actually sanctioning suicide,” Donahue said.

A possible vote is set for Tuesday. If passed, the bill would be kicked back to the Senate for a vote. This is the farthest this Oregon-style legislation has advanced in Vermont. Last year, a bill came before the full Senate, but it failed.

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GSN’s David Goldhill: “American health care killed my father”

Game Show Network President David Goldhill says it was the American health care system that killed his father, not the pneumonia for which he sought treatment at a New York City hospital. He addressed the need for health care overhaul at last weekend’s Association of Health Care Journalists conference in Boston.

Goldhill

Goldhill’s newly released book, Catastrophic Care: How American Health Care Killed My Father- and How We Can Fix It, outlines his helplessness in watching his father acquire a hospital-borne infection and subsequent five-week stay in the ICU. Goldhill argues his death, at 83, was entirely preventable and all too painful for both his father and family.

“If you’ve had a loved one die in the hospital, you’ve likely seen someone tortured to death,” Goldhill said to room filled with journalists. His argument is based in his belief that the health care industry fails to adopt cost-saving, life-saving ideas because the incentives in the business are “fundamentally broken.”

Americans, Goldhill argued, have learned to accept medical mistakes as inevitable, whereas in the restaurant industry, eateries can be shut down after one meal served tainted with something suspicious- often of dubious origin.

“In hospitals, we took the most personal, heterogeneous, important service and we have made it impossible- impossibly expensive, impossibly complex and completely lacking in accountability,” Goldhill said.

His father’s death was one of more than 200,000 each year due to medical error, and his gargantuan medical bill was covered by Medicare. One of Goldhill’s many sources of anger is how a failing product- the health care delivered to his father- could be compensated in full. He writes that high costs, over treatment, bad service and error are the inevitable consequences of an insurance-based system.

Americans typically have more coverage than they need at any one point, and Goldhill cited one of his 23-year-old full-time employees. If she marries, has two children, and her income grows annually at 3 percent, that woman will pour $1.8 million into the health care system- more than her family will likely ever use.

“It’s time to hold this industry accountable to standards of service, quality, consistency and value, and then it will start to change.”

Goldhill said the average healthy senior spends $5,500 each year on health care. “The amount of health care (seniors) are getting is genuinely frightening,” he said.

It is estimated that ten percent of the American population assumes 70 percent of the care, and Goldhill used this statistic to bolster his claim that “we define the whole system on the basis of the most extreme cases.”

How can the health care system change?

Goldhill argued that the Affordable Care Act will not fix the problem. National insurance does have a role, but for catastrophic events only. In other cases, individuals should use health care savings accounts to pay for other things, like routine exams or management of chronic conditions. Goldhill acknowledged such a change will take some time, likely two generations, and will only come about if prices come down.

Prices would drop, he said, if the industry would reorganize itself to serve consumer needs. This reorganization would happen if resources that currently pay for non-catastrophic events transfer to health savings accounts.

As an example, Goldhill cited the development of the personal computer. In its advent, the computer was one of the most expensive products for sale. It’s initial $18,000 cost translates today to roughly $200,000. “If someone had said to you back then that within a few decades, we would have one in every pocket, it would have been an argument for greater spending in mental health,” an amused Goldhill said.

But it happened. Why? “We created billionaires out of people that have figured out how to make them simple, accessible and cheap,” Goldhill answered.

The same, he said, could be true for health care.

“It’s time to hold this industry accountable to standards of service, quality, consistency and value, and then it will start to change.”

-Randi Belisomo

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Death Cafe: A movement discusses end-of-life

People across the nation are meeting for coffee to discuss death and dying.

deathcafelogo

Death Cafe, a growing movement that started in Europe, brings adults together to discuss death, dying and advance care planning over coffee.

The Death Cafe Web site states the goal of these cafes: “To increase awareness of death with a view to helping people make the most of their (finite) lives.”

Sociologist Bernard Crettaz, who started hosting the first “cafe mortals” in Switzerland in 2004, said that fellowship brings out truth. ”I am never so in tune with the truth as during one of these soirées. And I have the impression that the assembled company, for a moment, and thanks to death, is born into authenticity,” he wrote in “Cafés Mortels: Sortir la Mort du Silence.”

Six years later, Jon Underwood started the U.K. Death Cafe, after he read about the emergence of the cafes in Paris and decided to offer them himself, mostly in London.

Last year, the guide to hosting cafes encouraged Lizzy Miles, a 43-year-old hospice volunteer, to organize a cafe in Columbus, Ohio. She tries to keep the coffee and cake free, through fundraising and donations. Frank discussion then ensues with her guests.

Death Cafe Logo (1)

“The goal is to raise death awareness with the view of helping people make the most of their lives. I’m really passionate about death,” she told The Huffington Post.

Nothing about death is too taboo for discussion. Wondering if cremation is better than burial? Ask. Struggling with an illness? Share your experiences. Even theological discussions are okay.

More recent cafes have emerged in Albuquerque, N.M.; Ann Arbor, Mich.; Belfast, Maine; Sonoma, Calif., and Chicago.

Elements, a cremation company based in Chicago, was inspired to start hosting cafes in the spring. “We realized the importance of opening up the conversation, and how simple conversations about our own demise are needed in our community,” legal counselor Ronette Leal McCarthy told LMM.

“We hope to offer a unique perspective to others that will help Death Cafe Chicago mature and offer insight on a topic many shy away from– death and all that surrounds it,” McCarthy said.

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Hospice remains a last resort, despite increase in deaths

Image: AMIDA Hospice Care Inc.
Image: AMIDA Hospice Care Inc.

Although it seems more Americans are choosing to die in hospice instead of spending their last days in intensive care units, new findings published in the Journal of the American Medical Association show hospice is often a last resort, only after aggressive treatments fail.

Researchers studied more than 800,000  fee-for-service Medicare beneficiaries who died in 2000, 2005 and 2009. They were at least 66-years-old and died of cancer, dementia or chronic obstructive pulmonary disease. Findings show more seniors are dying in hospice, but the rate of ICU use in the last month of life is also higher. In 2009, some 30 percent of the decedents experienced the ICU in the last months of life. Some 12 percent had three or more hospitalizations in their last 90 days of life.

Although hospice use did increase from 22 percent in 2000 to 42 percent in 2009, about 30 percent used a hospice for three days or less.

“We are not getting the right care to the right people,” study author Joan Teno told Politico. “And if we want to improve care, we’ve got to change the incentives — and publicly report the quality of care.” Teno is a health policy expert at Brown University and a practicing physician at Home and Hospice Care of Rhode Island.

Patients are moving from their hospital bed to the ICU for aggressive treatments, and they then move to a hospice to die. Nearly one-half transitioned to hospice in the last two weeks of life. Teno connects these short-term stays to the growing pattern of greater use of intensive services at the end of life. Hospice becomes an “add on” that does not reduce hospital resources.

Moving across care settings can increase stress on the patient and disrupt pain medications. “This is extremely burdensome to family members watching their dying loved ones,” Teno said.

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The lack of advance care planning persists

“Consider the Conversation”: A discussion at Fourth Presbyterian Church

Film

The acclaimed “Consider the Conversation: A Documentary on a Taboo Subject” was screened at Fourth Presbyterian Church in Chicago on Wednesday, in collaboration with the Chicago End-of-Life Care Coalition.

Directed by longtime friends Terry Kaldhusdal, a fourth grade teacher and filmmaker, and Michael Bernhagen, a hospice advocate, the film showcases  interviews with health care professionals, religious leaders and the terminally ill in order to explain the importance of having the freedom to choose one’s end of life preferences. It also highlights the moral dilemmas surrounding the hastening of death, such as stopping eating and drinking, for those suffering and the artificial prolonging of  life.

Loretta Downs, the CECC president, thanked the audience for being brave enough to watch such an emotionally evocative film. “Now we are living for years with chronic illnesses that before would have killed us.  We think that we will never die, but we are required to talk about end of life,” said Downs, who is also featured in the documentary. “The film has inspired many people to have these conversations.”

The audience seemed to enjoy the film and engaged in a lively conversation afterwards. “I thought it was excellent, said Susan Thompson, 75. “It emphasized being natural in the most difficult moments of death and life.”

Downs acts out planning an advance care directive after film
Downs acts out planning an advance care directive with her colleague Daryl Isenberg, Ph.D., after the film for audience

Laura Pond, 54, said she did not like the film’s stance on hastened death. “I found it difficult to watch because I have a chronic illness and I thought people in the film were giving up,” she said. “You do not give up. It is not God’s plan.”

Marty Preiss, 60, said she found the film both compelling and engaging. She is planning a similar event for a screening at her church in Chicago’s  northern suburbs.

The film has also been well received by health care professionals. “I have never recommended a film on the end of life before. But people deserve to see “Consider the Conversation” because it deepens our passion for life and enriches our lives,” wrote Compassion and Choices’ Barbara Coombs Lee.

“Consider the Conversation” has won  multiple  awards,  including the Award of Excellence in End-of-Life Care from Agrace HospiceCare and the Silver Award of Excellence: Best Documentary or News Special from the Milwaukee Press Club.

Part two: “Consider the Conversation: A Documentary About Unintended Consequences” will be released early next year.

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Hospice enrollment policies contribute to underuse of care

Hospice enrollment policies contribute to the underuse of hospice care in the U.S., according to new findings published in the journal Health Affairs. Findings from the first national survey on hospice enrollment policies found 78 percent had at least one policy restricting care access for high-cost patients.

Although almost all Americans live within close proximity to a hospice, more than half of patients eligible for the care die without it. There are more than 3,500 hospice providers in the U.S.

Some 600 hospices were studied, and according to researchers, “patients with potentially high-cost medical care needs, such as chemotherapy or total parenteral nutrition,” had a greater likelihood of facing the restrictions. Limited enrollment policies were identified in both for-profit and nonprofit hospices. These restrictive policies include not receiving chemotherapy, total parenteral nutrition, blood transfusions, an intrathecal catheter, radiation therapy, tube feedings or requiring a primary caregiver at home.

“It represents a barrier to people who want hospice care but can’t receive it,” said lead author Melissa Aldridge Carlson, a palliative care researcher at the Mount Sinai School of Medicine.

The aim of hospice care is to manage the pain and symptoms of the terminally ill so that their last days are spent with dignity. The care is not intended to treat the disease.  Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less. Medicare states that to elect the Medicare hospice benefit, an individual “waives the right to receive all other Medicare covered services for the terminal illness and related conditions.”

Hospices may restrict access because of current Medicare reimbursements, which account for more than 80 percent of hospice revenue. The reimbursements do not cover treatments related to a patient’s terminal illness, so a hospice must pay for it. As Carlson points out, the average per diem reimbursement is only $140 per day.

The researchers explain, “many patients with terminal illnesses can benefit from using oral chemotherapy for palliative rather than curative purposes; radiation; or blood transfusions for treatment- or disease-related low blood cell counts.” Any one of these treatments can cost more than $10,000 a month.

Open access policies allow enrollment of those who are not yet eligible for the Medicare hospice benefit, anticipating that they will remain with the hospice when they do become eligible. Patients receive the medical comfort and social support available through hospice while simultaneously retaining access to medical treatments for their disease.  Such patients may be covered by private insurance plans or pay for the care out of pocket.  However, initial reports indicate that the cost of caring for patients enrolled through open access policies is generally absorbed by the hospice provider.

The authors conclude that increasing the hospice per diem rate for patients who require complex palliative treatments and removing the Medicare hospice benefit limitation on concurrent care may enable more hospices to expand their enrollment to patients who need and want it.  Providing hospice services in a cost effective manner for those whose treatment plans include concurrent life-extending and palliative care is the subject of the a pilot project funded by section 3131 of the Affordable Care Act, although results for this pilot project are years from completion.

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POLST Illinois moves forward

The Physician Orders for Life-Sustaining Treatment (POLST) program, designed to improve the quality of end of life care, is on its way to Illinois. Health care professionals met at Rush University Medical Center Thursday to discuss the form’s development and strategies for raising public awareness.

Sample POLST

The Chicago End-of-Life Care Coalition sponsored the discussion led by Julie Goldstein, M.D., a clinical ethicist and palliative care physician at Advocate Illinois Masonic Medical Center.

POLST program forms are more detailed than conventional living wills or other advance directives. They allow patients to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across in-state care settings and direct doctors to provide or withhold life saving treatment in emergency situations.

For instance, an individual may choose to decline resuscitation efforts, but of for artificial nutrition. An individual may choose artificial nutrition with set limits or permanent placement.

Goldstein answering audience questions

“POLST improves on the existing uniform DNR form,” said Goldstein. “POLSTs are medical orders and have to be followed by all medical care providers.” To be valid, a POLST form must be signed by an attending physician.

Loretta Downs, president of the CECC, told LMM that POLST is essentially about enhancing personal liberty at end of life. “For Illinois, accepting the POLST form is a statement encouraging people to take advantage of their liberty regarding end of life decisions. It empowers the individual to make a clear statement about whether or not he or she wants end of life care and what level of treatments.”

The POLST form will be available in early 2013, a version of the IDPH DNR Uniform Advance Directive. Goldstein said it will be most similar to the California POLST. The final form awaits approval from state health officials and it may be “ultra pink.”

Many in attendance left hopeful that the form would help their patients. Kriston Kurelic, a social worker at Passages Hospice, says she is excited about the form’s implementation. “I’m very interested in the changes that will happen,” Kurelic said. “It will be very beneficial to long-term care. It will be beneficial to patients and families.”

Christine Nelson, director of nursing at Manor Care, agrees. “I think anything that helps us assess what people’s wishes are more clearly is helpful,” she said. “The only barrier I see is time being taken to explain the form to patients.”

The task of educating patients will likely fall on individual health care providers. Because it is a physician order, it is intended to be accompanied by a meaningful doctor-patient dialogue. Carol Blendowski, a Rainbow Hospice nurse practitioner, says time is what is required to have such conversations, but thinks patients will ultimately find the POLST easy to navigate. “I can see clearly now,” she said. “This form is user friendly.”

POLST was developed in Oregon in the 1990s, and now 15 states have POLST programs. Twenty-eight states are considering the use of POLST forms.

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What is palliative, hospice care?

POLSTs work, says Respecting Choices’ Bernard Hammes

What is palliative, hospice care?

Despite its growing popularity in hospitals, most Americans remain unaware of the comfort and benefits palliative care can provide some terminally ill patients.

“There is a clear need to inform consumers about palliative care and provide consumers with a definition of palliative care,” researchers commissioned by the Center to Advance Palliative Care advise. According to Public Opinion Research on Palliative Care, seventy percent of the general population doesn’t know anything about palliative care, and 14 percent were “somewhat knowledgeable.”

The researchers also found that it is difficult to inform physicians about palliative care, because they often wrongly equate it with hospice or end of life care.

Public Opinion Strategies

Palliative care becoming more popular

Palliative care is treatment that enhances comfort and improves the quality of life for patients in life’s last phase. No therapy is excluded from consideration, according to the National Hospice and Palliative Care Organization (NHPCO).

Palliative care is becoming increasingly widespread. There are more than 1,600 hospitals that have palliative care programs in the U.S., according to Dr. Diane Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine. Some 85 percent of large hospitals have a palliative care team. Sixty-seven percent of small hospitals have programs.

Dr. William H. Frist, a heart transplant surgeon and former U.S. Senate Majority Leader, recommends palliative care. ”[A] brand new field in medicine is making chronic, agonizing, and even terminal illnesses much more manageable… palliative care has emerged as the best solution for those facing serious, painful diseases, and introduces the very real possibility… that we can now live with these diseases for a long time,” he wrote recently for The Week.

Public Opinion Strategies

Palliative care also costs much less than aggressive end of life regimens. Patients who receive palliative care services cost hospitals between $1,700 and $5,000 less per admission, according to findings published in the Archives of Internal Medicine.

Hospice care remains overlooked

Hospice care is different from palliative care; its aim is to manage symptoms so that a person’s last days are spent with dignity and quality. The care is not intended to treat the disease but the person, according to the American Cancer Society.

Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less.

“Many people believe that hospice is only for people who have cancer. This may be due to the fact that many of the patients cared for in the early days of hospice were cancer patients,” Becky Hillier, public relations director for Rocky Mountain Hospice, wrote for the Montana Standard. Less than 25 percent of hospice patients admitted to the hospice are cancer patients.

The NHPCO reports that 36 percent of hospice patients die or are discharged within seven days of treatment. Many terminally ill suffer more than they need to because they wait to enroll in a hospice program.

“We continue to see more dying Americans opting for hospice care at the end of their lives, yet far too many receive care for a week or less,” said the NCPCO’s J. Donald Schumacher. “We need to reach patients earlier in the course of their illness to ensure they receive the full benefits that hospice and palliative care can offer.”

One reason the terminally ill wait for hospice, he said, is due to the misconception that hospice means giving up.

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Terminally ill opt for less treatment when in communication with doctors

Cancer patients who talk with their physicians about how they want to die are less likely to opt for aggressive end of life treatments in the last two weeks of life, according to a new study published in the Journal of Clinical Oncology. Instead, these patients end life more comfortably at home or in hospice care, and as a result spend much less on hospital care.

“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said Dr. Jennifer Mack, lead author of “Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study.”

“We should at least consider having these discussions soon after diagnosis if we know that a patient has incurable cancer,” Mack, from the Dana-Farber Cancer Institute in Boston, told Reuters Health.

The researchers studied more than 1,200 patients with stage IV lung or colorectal cancer who survived at least one month from the time of diagnosis, but died during the 15-month study period. Using interviews of the patients and/or their caregivers and a comprehensive medical record review, the researchers determined if and when the patients had discussions with their doctors about end of life.

Researchers found that 88 percent had end of life discussions, but more than one-third of those took place less than a month before the patient died. Those patients who had end of life discussions documented in the medical record but did not recall them in the patient or surrogate interviews were more likely to have chemotherapy within the last 14 days of life, or acute intensive or hospital care within the last 30 days of life.

Patients who reported having the discussions with doctors were almost seven times more likely to end up in hospice than those who didn’t have those talks. Hospice focuses on comfort care and pain management for terminal patients, instead of treatment.

“A lot of patients don’t want (aggressive treatment), but they don’t recognize that they’re dying or that this is relevant for them,” said Dr. Camilla Zimmermann, head of the palliative care program at University Health Network in Toronto. She wasn’t involved in the study.

She told Reuters: “The earlier you discuss these things, the more options you have. If you wait too long, you end up having these discussions with someone you don’t know, that you just met, in an inpatient setting,” instead of with your primary doctor.

According to Mack, ”If we start these conversations early, then patients have some time to process this information, to think about what’s important to them (and) to talk with their families about that.”

In 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives- more than the budget for the Department of Homeland Security, according to CBS News. Twenty to 30 percent of those medical expenses may have had no meaningful impact on the patients’ health.

Reuters is reporting data from the Dartmouth Atlas of Health Care, which found that 32 percent of total Medicare spending goes to caring for sick patients in their last two years of life.

National guidelines recommend patient-physician talks begin soon after a terminal cancer diagnosis. Researchers found that physicians initiated end of life discussions an average 33 days before death.

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Doctors must monitor health care costs: One physician’s plea to his peers

George D. Lundberg, M.D.

Physicians have both the duty and unique power to improve end of life care in the U.S., said George D. Lundberg, M.D., speaker at the James E. and Bonnie L. Eckenhoff Lecture at Northwestern University’s Buehler Center on Aging, Health and Society.

The U.S. spent around $2.7 trillion on health care costs last year, yet the quality life for Americans has not improved or translated into better care, said Lundberg, the editor-in-chief of CollabRx, a genomic-based health care analytics company. Lundberg acknowledged that many see health care spending as exorbitant for what consumers get in return. But actually, he said, consumers receive a lot- testing, technology, medication, surgery and hospitalization- whether or not all such things are really necessary. “Often a lot of what we need we only get a little. That, in a nutshell, is the problem.”

Health care reform is needed 

Lundberg asked the audience of medical students, doctors and nurses who controls American health care. “No one and everyone,” he answered. “Anarchy and chaos stand side by side. There’s nothing remotely akin to a U.S. health care czar. The marketplace determines how much money is spent on what, and how many people of what types work in health care. It is by no means a free market.”

He also asserted that lobbyists for hospitals, physicians, insurance companies and pharmaceutical companies exert tremendous power over U.S. health care, and as a result, they also control the U.S. economy. Health care spending amounts to 18 percent of the nation’s entire expenditures.

I want you to know and I want you to care about what you prescribe is going to cost. Insist, rise up as one, demand to know.

Lundberg said the U.S. health care system is the best in the world, for those who match the following ten-part description: 1)  having full health insurance that can’t be taken away 2) living in  a major metropolitan area 3) having a long term relationship with a physician 4) having knowledge of English and lacking a hearing or visual impairment  5) having education 6) having financial resources and access to transportation 7) being white 8) being naturally skeptical 9) having internet access 10) being male. Lundberg said most politicians who champion U.S. health care fit the prior description. “How about all the rest?”

Some simple solutions to health care

Monitoring spending is the simplest way to cut health care costs, Lindberg argued, and he made a personal plea to physicians to help with the task: “I want you to know and I want you to care about what you prescribe is going to cost. Insist, rise up as one, demand to know.” He noted that greater transparency of costs would also help lower spending.

Lindberg said that physicians have a duty to change individual care as a group or individually, because they are in charge of treatments and interact with patients. “They make the real things happen.”

End of life care

Lundberg concluded with a focus on end of life care. “Death is not the enemy. We all die,” he said. “The enemies of patients aren’t physicians. Disease, disability and pain, those are the enemies. I believe that all people deserve a death with dignity and without pain.”

Palliative care is the right option, he said, for some 80 percent of patients who die of chronic progressive disease. Unfortunately, most of these patients die in intensive care units, and often against their will.

Hospice care is also right for many, Lundberg said, but the process of the patient and family choosing the option often takes too long to receive its full benefit. “The main key to getting it right for patients with incurable chronic progressive disease is counseling. Medicare could pay for it.”

Lundberg is an academic pathologist and has 30 years of editorial experience writing and editing for major peer-reviewed medical journals, including: the Journal of the American Medical Association, 10 AMA specialty journals, the Medscape Journal and e-Medicine from Web MD.

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