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

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 

Promoting Justice In Palliative Care

Posted on Saturday, November 1st, 2014 at 8:54 am by lifemediamatters

Dr. Catherine Deamant of John H Stroger Hospital addresses end of life care and more in Cook County’s Safety Net Hospital

Dr. Catherine Deamant

Dr. Catherine Deamant is the director of Palliative Care Services at Cook County Health and Hospital Systems. Based on Chicago’s near west side, the 464-bed Stroger Hospital is dedicated to the health care needs of Cook County’s underserved population; its emergency department treats more than 110,000 patients each year. 

Why did you pursue palliative care, and why do you practice in a public hospital?

I did my residency at Michael Reese Hospital in Chicago, and I had young patients with HIV. There was no clinic or care system for them. I come from a liberal framework and have always believed I should serve and respect those in need. I’m now a Unitarian Universalist, but when I was a resident, I had been looking at different spiritual communities and found a very liberal Methodist church. The minister there challenged me to think about what am I going to do in the world. He suggested Cook County Hospital, and I loved the idea. I had a mission, because you don’t work here for the ambience.

Being a lesbian, I had always felt drawn to care for gay men. The principles of respecting the worth and dignity of each person and our interconnectedness is important to me. So when I started at Cook County Hospital in 1990, I joined as an internist in general medicine doing primary care and HIV care. At that time, HIV care was a lot of palliative care because there were not a lot of treatment options. I did that for a decade, and I was asked to teach end of life care to the residents.

Palliative care wasn’t an accredited field of medicine until 2008- I was eventually grandfathered in- but we started a palliative care program here in 2001. It is one of the older palliative programs in a public hospital system.

Describe Cook County Hospital’s palliative care department

We did 850 inpatient consults last year, and we have four ambulatory palliative care clinics. We do about a day and a half of home visits each week. Our team includes seven physicians, but they are not all full-time in palliative care. Some are geriatricians and some practice hospital medicine. We have an advance practice nurse, a social worker who is also a bereavement counselor, and we are going to add to more advance practice nurses to expand our ambulatory palliative care. We are looking to hire an advance care planning counselor.

Our department has been valued and supported because Cook County leadership has always believed that palliative care is the right thing to do. It has never been about the finances of it. Palliative care has always reflected the mission of the hospital.

We received a Circle of Life Citation of Honor from the American Hospital Association for developing a staff morale model for other palliative care and hospice teams, which includes monthly reflective reading and discussion sessions.

My colleagues nominated me for the 2014 Hastings Center Cunniff-Dixon Physician Award, which I won for modeling skill and compassion at the bedside. That was the greatest honor to have my own team feel that about me.

John H. Stroger, Chicago. Google Images.

John H. Stroger, Chicago. Image via Google Images.

We have a high quality palliative care program, period. Not just for or in a safety net hospital. We do it all in an under-resourced area, and we exceed quality standards compared to other university hospitals here in Chicago. We have always been very well respected, we have always looked toward our standards, how we are communicating and how we are providing services. Many of our providers have been here for many years. We had a core team that cared from the very beginning, and we kept adding layers to it.

There’s a quote that holds my program together, you can see it on the Louis Pasteur Memorial Statue in front of the old County Hospital. Pasteur said, “One doesn’t ask of one who suffers, what is your country and what is your religion? One merely says, you suffer. This is enough for me, you belong to me and I shall help you.”

We are committed to serving all patients with respect and dignity.

Do you find that the patient population you serve would typically have a tougher time of receiving palliative treatment and adequate pain management than other populations?

Some of the barriers and disparities around pain management have to do with how people obtain information from patients, interpret what they are saying, hear how they describe their pain. Yes, physicians are less likely to prescribe pain medications for minorities. That’s not the case here.

Louis Pasteur Memorial Statue

Louis Pasteur Memorial Statue. Image via Flickr.

Do you find that the typical stereotypes surrounding end of life care and minority patients hold true at Cook County Hospital?

In literature about black patients, they would be considered less likely to accept hospice care and more likely to die in intensive care units. That is not our reality.

I had an abstract at the American Academy of Hospice and Palliative Medicine in 2010 and am now preparing a manuscript on this. About 30 percent of U.S. adults have advance directives. Among our black cancer patients here, we had 90 percent completion of advance directives and decisions for natural death and acceptance of hospice.

What’s the difference? We think it’s about health literacy. It is not the problem of patients. It is our role to address misconceptions of hospice and be honest and empathetic when you communicate prognosis. Many of my patients have not had access to care, and many present at a very late stage. They are so overwhelmed by complex psycho-social issues. The reason for palliative care consultation in other places may be pain management, but for us it is almost always defining the goals of care and complex decision-making.

Thirty percent of our patients have limited English proficiency. It’s always important to use an interpreter, because patients want to know what is happening, they want to make decisions and they want to hear the information correctly.

What do you hope to achieve in each patient encounter?

I would hope to give them the time and attention and listen to what is most important to them. I would hope that I can share the information they need to make informed decisions. I come from a place where I have all the information to share, and if they want to hear it- I am happy to tell them everything I know. The buck stops with me. There’s a “shoulda, woulda, coulda” mentality sometimes among physicians that the other guy can talk to the patients about the important stuff, but it ultimately is my job.

I am actively listening to patients, hearing what their concerns are and what they are hoping for. I hope that I have addressed those worries and given them the information they want and identify with them what their priorities and plans are.

It cannot be my agenda. I don’t have any trouble giving a recommendation, but I want what the patient wants. The vast majority of patients want to be home at the end of life, to be comfortable and have a natural death. I help make that happen.

What have been some of the most gratifying parts of your work?

We have so many patients who come to Chicago from other countries to work. When they are terminally ill, we work to facilitate their return home if that is their goal. You will never hear of us sending patients back like you hear sometimes at private hospitals.

The Mexican consulate and Polish consulate have been tremendous advocates and resources. The consulates have purchased one-way tickets if the patient’s family cannot afford the cost of travel.

We are very intentional about ensuring that patients are medically stable to travel. Some people are too sick to be able to return on a commercial flight, but I often see patients’ will and desire to come into play.

We have helped 60 patients return home in the past two and a half years. When they go and succeed, it is such a privilege. When they don’t make it, it is devastating.  

What would you change about health care delivery at your hospital?

We must advocate for more parity in health care delivery. Undocumented patients in renal failure can get dialysis in Illinois. However, if you are a green card holder for less than five years, you cannot access insurance under the Affordable Care Act.

We have to get rid of the politics. I am treating a woman now who has ALS and has been a green card holder for three years. She will not be able to qualify for public aid, but she will die.

Why can’t we expand Medicaid coverage? If you are a green card holder for less than five years and have a terminal illness, you need to be covered and qualify for hospice. Not qualify for hospice under charity care. That’s an advocacy piece of my work towards justice in health care that I am going to continue to work towards.

What’s next for you?

I have been at Cook County for 24 years. I have twins in the 8th grade, and I leave for work before they wake up and I return from work after they have had dinner. I am retiring from Cook County at the end of December, going to work closer to home in Evanston at NorthShore Health System. The patients will be very different, but my goal will shift to serve the community in which I live. There are many universalities in palliative care and the end of life, and those are what I will address in my new role at NorthShore.

Duty Of Physicians To Inform Patients Of Hospice, Palliative Care

Posted on Saturday, June 1st, 2013 at 1:11 pm by Life Matters Media

Physicians have an ethical duty to inform their patients facing end of life about hospice and palliative care services, said Dr. Frederick Smith, director of clinical ethics at North Shore-LIJ Health System.


Dr. Frederick Smith

Smith’s presentation, part of the University of Chicago’s second annual Conference on Medicine and Religion, criticized the choices of many physicians who urge their patients to continue with more aggressive, painful treatments instead of more comfortable end of life care. Drawing inspiration from Judaism, Christianity and Islam, Smith suggested hospice and palliative care are compatible with religious teachings about death and pain. “A central function of religion is to provide meaning and consolation,” he said.

There are two things a failing patient needs to accomplish the “work of dying”: consciousness and time, Smith said. Dying allows patients time for reflection about life and opportunities for reconciliation. “Jesus wants his followers to seek reconciliation,” Smith said, noting the Lord’s Prayer.

“The Prophet Muhammad placed great value on forgiving the poor man’s debt,” Smith said. “The sacred books of the three great traditions, which originated with God’s call to Abraham, summon their adherence to a righteous life, comprised with loving adherence to God and honorable treatments to family, neighbors and even strangers. They teach that death is not the end.”

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. Palliative care is treatment that enhances comfort and improves the quality of life for patients. When deteriorating persons are not allowed time to begin the “work of dying,” they are more likely to leave feuds and conflicts unresolved, often carried on with the next generation. “Feuds should not be taken to the grave,” Smith said.


One-third of hospice patients are too frail to begin the “work of dying,” because they are too frail, Smith said. They are transferred to hospice too late, only after aggressive treatments fail. Medicare reimburses for hospice care for up to six months, with extensions for failing patients who continue beyond six months.

Findings published in the Journal of the American Medical Association show hospice is often a last resort.

“Clinicians frequently ignore conversations about the likelihood of survival. If patients with life ending conditions truly knew the end was coming, would not it be better to take advantage of hospice?” Smith said.

Spirituality At End Of Life

Posted on Friday, December 28th, 2012 at 5:07 pm by Life Matters Media


Physicians and nurses at Boston medical centers cited a lack of training as the main reason why they rarely provided spiritual care for their terminally ill cancer patients, even though most patients considered it important to their end of life care.

A new study published in the Journal of Clinical Oncology reports that out of the 204 physicians from four medical centers who participated in the three year study, just 24 percent reported providing spiritual care. Among the 118 nurses, only 31 percent reported providing care.

“I was quite surprised that it was really just lack of training that dominated the reasons why,” senior author Dr. Tracy Balboni, an oncologist at the Dana-Farber Cancer Institute in Boston and researcher of spirituality, told Reuters Health.

Spiritual care may range from prayer with a physician or nurse to recommendations for a hospital chaplain.

Spiritual care “is considered by patients to be an important aspect of end of life care and is also associated with key patient outcomes, including patient quality of life, satisfaction with hospital care, increased hospice use, decreased aggressive medical interventions, and medical costs,” Balboni said.

Even though current palliative care guidelines encourage medical practitioners to mind religious and spiritual needs that arise during a patient’s end of life care, most medical practitioners remain silent. Ninety-four percent of patients with advanced cancer had never received any form of spiritual care from physicians.

Stanford School of Medicine

Stanford School of Medicine

Spiritual care may become more common in the future, however. “There was a time when nurses and physicians may have said, ‘That’s not my job,’ but I think the tides are changing,” said palliative care researcher Betty Ferrell of City of Hope, a cancer research center in Duarte, California.

“I think we are realizing we can no longer ignore this aspect of care,” Ferrell told Reuters. She’s a professor of nursing who was not involved in the new study.

Study researchers suggest more spiritual care training for physicians and nurses. The study found only 13 percent of doctors and nurses reported having such training. However, those who received training were almost 11 times more likely to provide spiritual care to their patients than those who had not.

Palliative Medicine, Hospice Care?

Posted on Tuesday, December 4th, 2012 at 7:50 pm by Life Matters Media

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.