I’ve Waited So Long, I Could Die

I’ve Waited So Long, I Could Die

Posted on Friday, May 22nd, 2015 at 10:13 am by lifemediamatters

Courtesy WikiMedia Commons via Pixabay

Courtesy WikiMedia Commons via Pixabay

It has been a year since waiting lists at VA hospitals made international headlines, as our American veterans struggled to access timely health care. In the months since, The Associated Press has found that the number of medical appointments delayed 30 to 90 days has largely stayed flat. Appointments taking longer than 90 days to complete have nearly doubled in number, and patients typically get sicker during the wait.

However, our veterans’ waiting list isn’t our only worrisome one. Another is just as onerous- the list of those patients with End Stage Renal Disease (ESRD) awaiting donation of a kidney for transplant. Congress approved an exclusive benefit for citizens with ESRD in 1972, authorizing Medicare to fully fund patient dialysis- the only treatment that can prolong their lives. This technology and the benefit making it affordable resulted in a 260 percent growth in the number of those awaiting kidney transplants. Meanwhile, there was only a 16 percent growth in kidney supply. This explosive demand parallels such at the VA. In a country of enormous abundance, these waiting lists are killing our citizens.

There is a way to attack this waiting list, just as the VA is working to better serve its veterans. It takes a to-do list- not a waiting list- to achieve a creative solution. That solution is one supported by ethicists, scholars and the medical community; there has been wide consensus that now is the time to test the model for a regulated market for the sale of kidneys for transplant.

The current problem with such a proposal is that it’s against the law. Congress approved the National Organ Transplant Act (NOTA) in 1984, prohibiting the sale of organs and criminalizing such action with a prison term and fine. With no other scalable solution proposed, Congress explicitly outlawed organ sales.

In the 30 years since NOTA’s passage, the transplant waiting list has come to be known as a “waiting list to die,” ballooning to more 100,000 candidates who hope to receive one of 13,000 available kidneys each year. On average, between seven and 12 people awaiting a kidney die each day. In a country with such abundance, this reality is unconscionable.

In a country of enormous abundance, these waiting lists are killing our citizens.

Congress must authorize a pilot program for a regulated market in which live and deceased donors can be compensated to provide kidneys to unrelated candidates. We don’t need to categorically rescind portions of NOTA, but we do need to allow a test to determine whether providing payment for kidneys could ethically reduce the waiting list so that thousands won’t die due to a wait each year.

Altruistic donation is a selfless act and has been the only source of kidney supply. As wonderful as it is, altruism will never meet the demand. It is outrageous that our ESRD patients are regularly allowed to die while highly regarded ethicists, transplant surgeons and scholars are poised to support a proposal for such a regulated market test.

To be sure, there could be abuses in a system of financial incentives. However, these potential abuses are no morally worse than not trying financial incentives in a regulated market. A policy of financial incentives will produce fewer unfortunate results than the current system. Our veterans are heroes, and those who provide organs are, too. Let’s try on their behalf.

Video Urges Hospice Providers To Treat Patients’ Terminal Prognosis

Posted on Sunday, April 12th, 2015 at 9:03 am by lifemediamatters

The National Hospice and Palliative Care Organization (NHPCO) is circulating a video that encourages hospice providers to think in terms of terminal prognosis and not only principal diagnosis when caring for dying patients.

“Determining what aspects of care hospice providers are responsible for has become an issue of growing importance in recent months,” according to a NHPCO statement sent to Life Matters Media. “There is significant concern from regulators on Capitol Hill that some providers may be relying on a single diagnosis, thereby defining their scope of responsibility too narrowly, ultimately failing to provide and coordinate all the care and services that they should.”


President J. Donald Schumacher talks about treating patients’ terminal prognosis

The Centers for Medicare and Medicaid Services (CMS) requires a principal diagnosis on reimbursement forms for patients using the Medicare hospice benefit. However, “principal diagnosis” is often only part of what should be reported to provide more comprehensive reasoning for a patient’s short life expectancy. In 2013, 67 percent of claims listed only one diagnosis.

Hospice care aims to provide comfort and pain management for terminally ill patients with a life expectancy of six months or less. It is most often used when curative treatments are no longer effective.

“As providers of hospice care, we must properly frame the way we think about and characterize our patients and the scope of our responsibility in providing care to them,” said J. Donald Schumacher, NHPCO president and CEO, in a statement. “The question can be asked, ‘Does this diagnosis or condition contribute to or influence the patient’s terminal prognosis?’ If so, then it is our responsibility.”

The NHPCO, the nation’s largest nonprofit organization representing hospice and palliative care programs, created the 10-minute video for use during hospice staff meetings and training. Jonathan Keyserling, senior vice president of health policy, said a series of complex issues needed clarification among providers, including a congressional mandate to reform payment methodology..

“An effective tool is to look at all those items that are connected to the prognosis that qualifies a patient and their family for hospice services under Medicare,” Keyserling said. “It’s really a reiteration of the existing statute. The Affordable Care Act has nothing to do with this affirmation.”

Although the video is not targeted to patients and families, Keyserling hopes it encourages them to have a conversation about their end of life care wishes, even if it does not involve hospice.

“We think it’s critically important that families sit down and have a conversation about their goals and objectives at the end of life,” he added. “It’s therapeutically neutral, but we encourage families to have that conversation so that there are no surprises, so that when a patient is not able to speak, then their loved ones have a good idea about what that patient would have wished.”

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.

Victor Dzau

IOM President Victor Dzau

“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.

Dr. Atul Gawande

Dr. Atul Gawande

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.”

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Doctors, Nurses Begin To ‘Measure What Matters’ For Hospice Patients

Posted on Tuesday, March 3rd, 2015 at 8:01 pm by lifemediamatters

For the first time, the quality of hospice and palliative care will be held to quality measurements developed by nurses and doctors who specialize in end of life care.

The American Academy of Hospice and Palliative Medicine, which includes some 5,000 physicians, and the Hospice and Palliative Nurses Association, which has more than 11,000 members, are pushing the health care industry to consider 10 key quality indicators to guide fellow providers in evaluating palliative and hospice care.

Calling their effort the “Measuring What Matters” project, the physician and nurse groups hope to use the selected measures to “systematically evaluate our effectiveness and develop strategies to keep improving our practice to ensure patients and families get the very best care possible across settings,” said Sally Norton, co-chair of the Measuring What Matters Project and a professor at the University of Rochester School of Nursing.

logo-2The groups say measuring quality hospice and palliative care is important, yet there are no standard quality indicators in the U.S. Among the key measures is the need among providers to respect patient wishes about life-sustaining treatments, as well as discussions with patients and families about their emotional and spiritual needs.

“We are thinking about quality and looking carefully at what we do and how well we do what we do,” said Dr. David Casarett, co-chair of the Measuring What Matters Project and a professor of medicine at the University of Pennsylvania’s Perelman School of Medicine. “We should all be encouraged to do better.”

Hospice is generally considered medical care provided for those facing illness near the end of their lives. It can be provided in a patient’s home or in hospice centers, or within hospitals, nursing homes or other long-term care facilities. There are more than 1.5 million dying Americans who receive care from hospice providers each year, according to the National Hospice and Palliative Care Organization.

The hope in the measurements of hospice care is for providers and health systems to “see these measures and start using them,” Casarett said. “Health care providers can take the lead.”

It’s the latest in an escalating trend and evolution toward bringing more accountability to health care through performance measurements and value-based care. Under the Affordable Care Act, for example, hospice providers are already required to report certain quality measurements to the government or lose out on a 1 percent increase in Medicare reimbursement.

Pain control is one of the major quality measures under the government’s “Hospice Quality Reporting Program” that hospice providers must report. The measure “reflects the number of patients who report being uncomfortable because of pain at the initial assessment” and whether “that pain was brought to a comfortable level within 48 hours,” according to the Centers for Medicare and Medicaid Services.

The Medicare pain measure is similar to one of the AAHPM and HPNA quality indicators of prompt administration of pain treatment.

web_hpna-300x122The nurses and doctors involved with the Measuring What Matters project say these measures are critical for providers to consider and get out in front of other efforts by insurance companies and government health programs under the domain of the Centers for Medicare and Medicaid Services.

Private and government payers are moving more toward paying providers for quality care and outcomes and moving away from traditional fee-for-service medicine. Critics of the fee-for-service model say it allows doctors and hospice providers to get paid no matter the quality of care provided.

While accountability and paying for performance in the hospice and palliative care arena have a long way to go, AAHPM and HPNA want providers to be ahead of the issue.

“We don’t want to wait for CMS to come up with a measure but begin to do this ourselves,” Casarett said.

AAHPM and HPNA hope providers use the measures to compare against each other and learn through shared practices. The groups worked on developing the measures for about a year and a half, using input from myriad provider groups and existing data on quality of end of life care.

For now, however, AAHPM and HPNA want to get providers thinking about ways to improve, even if they just adopt a couple of the first 10 measures, Casarett said. Eventually, they hope to hone and broaden the list they have.

“Although this set serves as an initial starting place for standardizing U.S. measurement and benchmarks for care, more development and partnerships with organizations to develop benchmarking is needed, and additional or revised indicators may be needed for particular settings or populations,” Casarett and fellow palliative care providers wrote in the February issue of the Journal of Pain and Symptom Management. “Further research is needed to evaluate how best to define palliative care populations of interest for quality measurement, and how to measure the quality of hospice and palliative care both overall in different settings and for patients served by hospice and palliative care services.”

A link to the entire abstract and article can be found here.

The Top 10 “Measures that Matter” | Create infographics


japsenBruce Japsen is an independent journalist and contributing health care columnist to Forbes and author of  “Inside Obamacare: The Fix For America’s Ailing Health Care System.” He is a regular analyst to Fox News Channel’s Forbes on Fox show, WBBM Newsradio 780 and 105.9 FM in Chicago as well as WTTW’s Chicago Tonight public affairs program. He can be reached at brucejapsen@gmail.com 

LMM President Randi Belisomo: “America Is Ready To Talk About Death”

Posted on Monday, March 2nd, 2015 at 9:17 am by lifemediamatters

Randi Belisomo talks about her experiences facing terminal cancer

Randi Belisomo on the importance of end of life conversations

As millions of baby boomers age and health costs continue to rise, Americans are ready and willing to have open and honest discussions about death and dying, Life Matters Media President Randi Belisomo told a crowd gathered at a Chicago conference exploring end of life care.

“Americans are not talking about end of life issues as much as we should be,” said Belisomo Saturday during “Dying to Know: Life Affirming Conversations About Living and Dying Well,” a day-long event hosted by the Replogle Center for Counseling and Well-Being at Fourth Presbyterian Church. “But through the proliferation of information, education, media and community building, we can begin telling real-life stories about death and dying.”

If Americans become more comfortable with talking about the inevitable, patients nearing death may be more likely to enroll in hospice care and share their end of life care wishes with close family and friends, she said. Just as breast cancer, colon cancer and same-sex marriage were once rarely discussed and considered taboo, a cultural change is now making discourse surrounding mortality more common.

“There is ample evidence of the public’s desire for information,” she said. “Look at The New York Times’ bestseller list;” Belisomo pointed to Being Mortal, by Dr. Atul Gawande, Smoke Gets in Your Eyes, by Caitlin Doughty, and Roz Chast’s Cant We Talk About Something More Pleasant?

Belisomo opened her speech with her own experiences facing death and terminal cancer. In 2010, her husband, Carlos Hernandez Gomez, died of complications associated with colon cancer. She said the two did not discuss his end of life care preferences.

Nearly 200 patients, caregivers and physicians attended

Nearly 200 patients, caregivers and physicians attended

“Doctors told us his cancer was ‘treatable,’ even though it was incurable. We went full-steam ahead doing whatever we could to elongate whatever time we had left,” she said. “If metastatic cancer is a fight, it’s not fair. If it is a war, it’s not winnable. All of the militaristic language is misleading.”

He continued to receive chemotherapy and other treatments instead of enrolling in a hospice or palliative care program. Belisomo said she did not want to give up hope or take away his own.

“Ours was just one more example of failure to take all the steps we should have taken,” she said. “We didn’t think about how Carlos would do his own dying.”

Months after his death, Belisomo and his oncologist, Dr. Mary F. Mulcahy, were inspired to launch Life Matters Media. She hopes news and information provided by the nonprofit will inspire Americans of all ages to talk about death.

“Stories like mine are not outliers, they are the norm.”

Dying In America

Much of the latter half of her speech was devoted to the Institute of Medicine’s widely circulated report, Dying in America. 

The 2014 report cited the present as the best time to normalize conversations about death and dying, as millions of aging baby boomers will soon face difficult end of life care decisions for themselves and for their family members.

“Many Americans don’t know how to bring up end of life conversations. It needs to become the norm to have these conversations with family and doctors,” Belisomo said. “Death is not how it used to be. The stakes are gigantic.”

The IOM’s report also emphasized the urgent need for increased palliative services– medical care that provides pain relief and centers on enhancing the quality of life among the chronically or seriously ill.

A shift towards comfort care could save Medicare billions of dollars over the next decade. Seventy percent of U.S. deaths are paid for by Medicare, and 30 percent of Medicare spending is used on patients in their last year of life.

“Much of that care is unwanted and wasteful and futile in scope,” Belisomo said. “There is an urgent need for health care overhaul. The IOM calls for more person-centered care that minds the needs of patients, families and their values.”