Palliative care teams help help terminally ill patients live as good a life as possible until the end.
Rebecca Roberts had never heard of palliative care two years ago when her boyfriend, "Papa" Joe Funes, begain suffering multiple organ failure. But by the end of Papa Joe's life, she was devoted to the medical process.
Dr. Matthew Katics, director of palliative medicine services at Salinas Valley Memorial Hospital, defines palliative care as a specialty that provides patients total care while they are enduring an often fatal illness. By definition, palliative care can treat non-terminal patients, but the lion's share of care is done during the patients final weeks or months of life.
"Total care cuts to the heart of palliative care," Katics said. "We move away from treating a disease and toward treating a person. Palliative care is not synonymous with hospice."
Palliative care is often confused with hospice, but they are not the same. Hospice allows terminally ill patients to return home to spend their final days in familiar surroundings and made comfortable. The goal of palliative medicine is to improve the quality of life for the patient, terminal or not. Palliative care is a multi-pronged approach, using physicians, psychosocial workers to treat mood, nurses skilled in this type of care, and members of the clergy and other spiritual leaders.
"Palliative care is a medical specialty directed at those with life-limiting chronic disease," said Dr. John Hausdorff, medical director of the palliative care team at the Community Hospital of the Monterey Peninsula. "It focuses on providing relief from the symptoms, pain, and distress of illness, whatever the diagnosis."
Katics used an example of a patient entering the hospital for a hip replacement. The patient has suffered excruciating pain for many years and is now addicted to opiates. After the surgery, a palliative care team – the doctor, nurses and a psychosocial care worker – will help the patient explore alternative treatments for long-term pain management to get them to the point of functional recovery.
Or a patient could come into the hospital with difficulty breathing and suffering from chronic obstructive pulmonary diseases. The emergency room stabalized the patient's breathing, but what about when he goes home? Then what? The palliative care team will review his medicines, talk with him, and even evaluate him for any mood disorders. COPD is a fatal disease that can take years to kill.
"We want you living as good as you can, feeling as good as you can, for the time you have," Katics said.
Papa Joe begins a journey
It was the summer of 1994 when Roberts received a call informing her that her boyfriend was en route in an ambulance from King City to Salinas with a massive head injury. When she arrived at SVMH, she didn't recognize him, she said. His head was massively swollen and his skin was the color of slate.
Thursday afternoon Roberts and Katics sat under the shade in a patio at the hospital, catching each other up on their lives since Papa Joe died two years ago.
That 1994 summer, Papa Joe was found on the ground at the base of a grandstand in a park in King City. One side of his head was horribly malformed from an impact – from what, exactly, was never established. It could have been the result of an altercation with what Roberts calls "Joe's acquaintances." But a neurosurgeon told Roberts that the pattern and severity of the injury was not consistent with a blow from a club or cane. The damage was far greater.
Nearly 20 years later, a good many in King City harbor far more nefarious believes – that Papa Joe might have been beaten, then climbed to the top of the stands to lick his wounds. It was there that Joe, who had minor run-ins with King City Police before, was tossed off the grandstand where he sustained the violent injuries to his head. Other, less dramatic, scenarios feed the rumor mill in the farming and ranching community in the deep southern part of Monterey County.
Initially no police report was written up, but when SVMH required one to proceed with treatment, Roberts said the response was, "You mean that son of a bitch is still alive?" A broadly worded report was written, where it remains an open case because it is now a homicide.
Meanwhile Joe remained in a coma, and doctors were telling Roberts he didn't have a chance of survival. But with Roberts fighting every effort to disconnect him from life support, Papa Joe continued to live. First minor moves, a hand squeeze, then one day he opened his eyes and tried to talk. A doctor came in removed the breathing tube and Joe talked with a raspy, tired voice. He also answered all the doctor's questions, who then determined he was alert and oriented. He went home, extremely disabled.
A fall re-injured the original head trauma, and the result was stroke-like symptoms. Back in the hospital he began to retain water and his kidneys began to fail. Joe was now being treated by the palliative care team and they stabilized him. That was when Roberts met Katics for the first time. Her experience with doctors was not good. In the early days she had face-to-face confrontations with a doctor who was determined to unplug his live support. Katics and his team were different.
"He's one of a kind," Roberts said. "After all those years of posturing and the sighs aimed at me, all my distrust melted away."
Katics' approach to Papa Joe
Often the gravely ill patient is the only one doctors must contend with. When families are in the mix, each member sometimes has wildly different views of the best care for their sick loved one. The facts that all must keep in mind as they approach their last days is that medical science is allowing people to live longer, but not better. Diseases that would have killed a generation ago can be contained for years. But what does the patient want?
"Is giving them more days better or just prolonging the suffering?" Katics asked. "People are complex and they have a desire to know."
When there is family involved, there are emotions and confusion. There are many paths a patient can elect to follow, but Katics and his team ensure none of the decisions are made in ignorance.
"Each path is OK as long as you are doing it with your eyes open," he said. "Part of my job is to get to clarity for the patient and family."
The sooner a patient teams with a palliative care unit the better the outcome, whatever that may be. The ideal time would be at the point of diagnosis of a serious disease, said Christine Short, director of Nursing Support Services and coordinator of the palliative medicine service at CHOMP.
"If palliative care starts at an early stage, such as upon a serious diagnosis, a thoughtful conversation can occur with the patient about what matters most and is most important to them," she said. "Our priority is to respect patients' wishes and interests, and to make sure they understand their situation well enough to make informed decisions."
In one case at CHOMP, a woman with long-term gastrointestinal issues had several surgeries and had difficulty managing ongoing pain and nausea. After dealing with the immediate medical issues, the palliative care team met with her and her husband.
The team asked her to think about the future – what interventions she wanted and who would speak for her if she couldn't. A social worker – part of any palliative care team – stepped in and helped the couple with an advanced healthcare directive, which provides instructions to medical teams for future care. Both SVMH and CHOMP palliative care teams strongly advise everyone to pick up an advanced directive from their primary physician, fill it out, have their doctor keep a copy, have the hospital file another copy, and keep a copy for you.
"Giving the couple the advanced directive prompted them to talk with their friends to arrive at clear directions to any future physician caring for them," CHOMP's Hausdorff said.
Papa Joe's goodbye
When Roberts decided there was nothing more doctors could do for her love, she made the decision to take him home. But she was surprised that there was one more thing Katics could do for them. Joe's breathing was distressed and he needed a breathing bag in the ambulance on the way home. But paramedics weren't allowed to use an ambu bag, as they are called, per ambulance company policy.
"So Dr. Katics jumped in the back of the ambulance and bagged Joe all the way home," Roberts said. "And then at home, he helped me set up all the supplies I would need to care for Joe."
His two daughters, his mother, and his grand-kids sat around his bed. He looked at Roberts with raised eyebrows in that "I'm sorry" expression, closed his eyes and died.
On Thursday, Roberts and Katics sat on the patio, at times holding hands as they talked about Joe.
Fighting back tears, Roberts told Katics that she loved Papa Joe. "We were talking and had a whole plan to move away, start a new life, and then two days later, boom, that happened."
Katics took that in for a moment, squeezed her hand and softly told her: You advocated for him, and you fought the fight that was right for him."
With mounting evidence that cancer research and biomedical discovery are slowing even as a 45% increase in cancer cases is projected by 2030, the National Patient Advocate Foundation (NPAF) – a national non-profit organization providing the patient’s voice in improving access to quality cancer care – just released a blueprint to accelerate the delivery of promising new treatments to patients and launched a new grassroots movement called Project Innovation to drive action.
Issued as a call to action, the new white paper – Securing the Future of Innovation in Cancer Treatment – is the result of consultation with biomedical researchers, medical innovators, patient advocates, clinicians and policymakers and offers a roadmap for addressing the pervasive obstacles slowing the pace of cancer discovery. Among the barriers cited are a nearly 20% drop in government-funded basic research since 2010 and a steady decline in venture capital investment in biotechnology since 2007.
Also impeding progress are logistical, bureaucratic, institutional and regulatory obstacles that add years to scientific discovery and drug development, such as added steps and inefficiencies in the clinical trials process, duplicative and conflicting standards, auditing mandates, increasing regulatory requirements and delays in review decisions. As a result, it takes nine or more years from discovery to approval for a new cancer therapy compared to an average time of two years for HIV drugs. Further, because drug development is an uncertain process, a 2010 Tufts University study puts the cost of developing one innovative cancer drug at upwards of $1 billion.
“This report represents a wakeup call for all Americans and is intended to spark a national movement to make cancer innovation a national priority,” said Nancy Davenport-Ennis, NPAF’s founder and chairman. “Cancer kills 1,600 Americans every day and this number will only increase in the years ahead unless we commit as a nation to hasten the pace of medical discovery. It is time to put cancer innovation on the national agenda and press for solutions that will save lives instead of continuing a one-sided conversation on the cost of treatment.”
Project Innovation to spearhead a national dialogue on cancer innovation
To turn these findings into practice, NPAF will spearhead Project Innovation, a social activation effort to involve patients, their family members and local citizens in speaking out about the importance of accelerating cancer innovation. Utilizing the online hub – www.projectinnovation.org – digital advertising and multiple information channels, Project Innovation will tap the energy and ideas of cancer patients, advocates, healthcare professionals, biomedical researchers, medical innovators, payers, policymakers and 21st century thinkers on ways to move cancer discovery forward. Plans call for hosting regional town halls, workshops and advocacy forums across the country; scheduling meetings with federal and state legislators and regulators; and arming interested citizens and patient advocate volunteers nationwide to advocate for cancer innovation in their communities.
Project Innovation is a collaboration of leaders from national cancer advocacy organizations, providers, biomedical research institutions, the business community and industry to put cancer innovation on the policy agenda.
Three pillars of innovation
Through Project Innovation, NPAF’s agenda-setting report will be distributed widely to patient advocates, healthcare professionals, biomedical researchers, medical innovators, payers, and policymakers with the goal of elevating cancer innovation as a national priority and advancing policy solutions addressing three pillars of innovation. Specifically, NPAF’s action agenda calls for action in the following areas:
Expand the science of innovation by reducing logistical obstacles
Improve the value of innovation by bolstering funding opportunities
Enhance the delivery of innovation through improved communication and coordination between providers and patients
The Chesterton Health and Emergency Center offers average wait times of 15 minutes or less and has maintained a patient satisfaction rate in the 99 percentile since it opened in 2012, according to medical director, David Hunnius, DO.
The center, which is open 24/7 and is the area’s only freestanding emergency facility, also assures patients will receive primary care from board-certified emergency medicine physicians.
“There’s no type of emergency we can’t handle; this is a full-service department, staffed by experienced, board-certified physicians. We offer everything a hospital-based emergency department does,” said Hunnius, who, since 2009, also has been medical director of Franciscan St. Anthony Health – Michigan City, parent of the Chesterton center.
“We provide compassionate, highly skilled medical care, which results in very satisfied patients, as evidenced by our patient satisfaction scores,” Hunnius said. Travis Thatcher-Curtis, Franciscan St. Anthony Health Emergency Department manager, who also oversees the Chesterton center, said the 15-minute average figure is not a gimmick, but is based on 2013 tracking board data. Assessing patients sooner results in faster diagnoses, treatment and ultimately, satisfaction, he added.
“Besides the high patient satisfaction scores recorded since we opened, the Chesterton ED was also a 2013 Press Ganey Guardian of Excellence Award winner, which is presented to organizations that achieve satisfaction scores in the 95 percentile or greater over a designated period of time. Our patients are receiving the definitive level of care they need in a timely manner and are receiving it from a care team with a high level of competency with regards to emergency medicine.”
Thatcher-Curtis said being able to more quickly complete the treatment process “gives patients back time in their day because of the efficiency with which we can provide services.”
The center also includes an onsite laboratory, high-field open MRI, 64-slice CT, ultrasound, mammography and general x-ray services, along with primary care and specialty physician practices.
HHS recently released the final Exchange and Insurance Market Standards for 2015 and Beyond rule, affecting several provisions within the Affordable Care Act.
The rule finalizes most provisions as proposed, including policies relating to health insurance discontinuation and renewal, quality reporting and enrollee satisfaction surveys, the Small Business Health Options Program (SHOP), and adjustments to risk corridors and the medical loss ratio (MLR) requirements in light of transitional policies and technical issues associated with 2014 open enrollment. The rule also finalizes stronger standards for Navigators and other consumer assistance entities.
Consistent with the proposed rule, issuers will see some benefit from the changes to the MLR provisions and premium stabilization programs to recognize the uncertainty created by the transitional policies and technical issues of 2014. In addition, state regulators were granted slightly more flexibility to request a delay in employee choice for 2015, which should help stabilize risk pools in the small group market and encourage more issuers to participate in the SHOP. However, issuers will face greater burden from the finalized requirement for plans to provide a 24-hour expedited exceptions process for coverage of non-formulary drugs under exigent circumstances.
The requirement for plans to expedite the process to cover a non-formulary drug under certain circumstances will help ensure that consumers have timely access to certain prescription drugs.
HHS intends to release technical guidance on some of these provisions, including the process by which it will make sequestered funds from the reinsurance and risk adjustment programs available to issuers in FY 2016. HHS has already released technical guidance on the proposed methodology for calculating quality ratings, which HHS intends to finalize shortly. Next year, HHS intends to release guidance on Enrollee Satisfaction Survey (ESS) vendors and details regarding the display of rating information and ESS results in marketing materials.
Editor’s note: For more on this topic, stay tuned for the upcoming June issue of Health Affairs, which features a series of articles on accountable care organizations.
Accountable care is a relatively recent addition to the health care vernacular, but its roots can be traced to the decades-long effort to coordinate medical care. In the United States, health care has evolved into a fragmented pay-for-volume system which has both driven up cost and decreased quality. Coordination of care is meant to reverse this trend.
Through such solutions as Health Management Organizations (HMOs), Integrated Delivery Networks (IDNs) and now Accountable Care Organizations (ACOs), policymakers, providers and payers have sought to consolidate and coordinate patient care. Contemporary care coordination efforts focus on accountable care which increases provider accountability for the cost and quality of care.
The driving principle behind the formation of ACOs is the Institute for Healthcare Improvement’s triple aim: improving the patient experience of care, improving the health of populations, and reducing the per capita cost of health care. One of the broadest applications of this concept is the creation of Medicare ACOs under the Patient Protection and Affordable Care Act. This includes the Pioneer ACO Program and the Medicare Shared Savings Program.
More recently, states have also pursued ACO contracts to cover Medicaid populations. In the private sector, providers have forged ACO contracts with commercial payers. At the close of 2010, only 41 preliminary Accountable Care Organizations existed. The number of ACOs more than tripled to 138 a year after the passage of the PPACA. By 2012 the number nearly tripled again, and by the end of 2013 more than 600 ACOs were operating across the U.S.
In the past year, CMS has begun releasing both financial and quality results from Pioneer and Medicare Shared Savings Program (MSSP) ACOs. Some commercial ACOs have released selected results as well. While results are preliminary and incomplete, both CMS and commercial ACO results warrant a cautious but optimistic outlook on ACOs and their ability to accomplish the triple aim.
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Sample Group
The Leavitt Partners Center for Accountable Care Intelligence conducted an analysis of ACO results to determine the cost and quality implications of the ACO model on the U.S. health care system. Information was gleaned from primary and secondary research, including the Leavitt Partners ACO Database of over 620 ACOs. Information about Pioneer and MSSP ACO results was gathered from CMS, and includes press releases, announcements, and data sets.
Data was supplemented with information gathered through interviews and surveys carried out with the leadership of more than a hundred ACOs nationwide. Commercial ACO results were gathered primarily through publically available data such as press releases by affiliated providers or payers and supplemented by interviews with ACO leadership. A breakdown of how many ACOs were represented in our study can be found in Table 1.
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Findings
Although ACOs share common goals, they vary widely in terms of organization and level of development. Results will be discussed separately for Pioneer, MSSP, Medicaid and Commercial ACOs. Where available, both financial and quality results will be discussed and analyzed.
Pioneer ACOs
Thirty-two organizations began the Pioneer ACO program in 2012. Of these organizations, 23 remain in the ACO Pioneer program. Nine ACOs left the pioneer program, with seven of those transitioning to the MSSP ACO program and two leaving completely.
“We really did learn a lot as a Pioneer ACO,” said the VP of one of the departing ACOs. “However, we’d be better off putting our energy into the health plan we already have… We didn’t have the confidence, based on historical trends, that we could beat the trend. We would have been in a loss position and writing a check to Medicare.”
The Pioneer program generated $147 million in total savings with approximately $76 million in savings returned to ACOs. Of the original 32 Pioneer ACOs, 12 shared in savings while 19 did not share in savings or losses. Only one ACO shared in losses. Addressing these mixed results, the CEO of one Pioneer ACO that neither shared savings nor losses stated, “Our objectives were not to do well in a particular financial cycle. We believe the payoff is going to be accumulated clinical transformation.”
Figure 1
Pioneer ACOs were held to a set of 33 ACO quality metrics, which are also common to the MSSP program. These metrics span four quality domains: patient experience, care coordination, patient safety, preventive health and at-risk populations. ACOs were held responsible only for the reporting of these metrics, not for any quality improvement.
All Pioneer ACOs successfully reported quality metrics to CMS and showed improvement where comparable data was available. In interviews with Leavitt Partners, Pioneer ACO leaders outlined a few tools they used to improve the quality of clinical care including best practices, evidence-based medicine, and electronic health records.
MSSP ACOs
The MSSP ACO program is broader than the Pioneer program with less stringent rules for participation. CMS has released preliminary results on the first two cohorts of MSSP ACOs, which include 114 ACOs that started in 2012. Of the 114 MSSP ACOs, 54 kept costs below budget benchmarks and 29 of those saved more than 2 percent, thus qualifying for shared savings (see figure 2). These 29 ACOs received $126 million in savings and generated $128 million in total CMS trust fund savings. The other 60 MSSP ACOs experienced spending above their set benchmark.
Figure 2
One of the principle differences in the MSSP program is the ability to choose between an upside-risk-only contract (sharing in savings; no risk for losses) or an upside/downside-risk contract (sharing in savings while being at risk for losses). ACOs accepting both upside and downside risk would receive a larger share of any shared savings due to their willingness to risk shared losses. Only four ACOs elected to take downside risk and two of those shared in losses.
The CEO of one ACO that incurred shared losses remained positive when reporting to MedPAC stating, “I’m actually quite optimistic about ACOs as a real catalyst to change the paradigm of care delivery… I’d like to wait and give these ACOs a chance to perform. You know, we haven’t gotten a lot of negative feedback from the marketplace or from our members.”
MSSP ACOs were held to the same aforementioned set of 33 ACO quality metrics. Again, MSSP ACOs were required only to report quality metrics. Failure to do so resulted in forfeiting a portion potential shared savings. All but five MSSP ACOs successfully reported their quality metrics.
Medicaid ACOs
Medicaid ACOs are still in their infancy and have only been adopted by a few states, including Oregon, Iowa, Vermont and Colorado. The maturity of these programs varies widely and little information is available in the way of results. Perhaps the best test case can be found in Oregon where Medicaid ACOs have been designed to cover the entire geography of the state. Detailed financial results released by the Oregon Health Authority (OHA) show that Medicaid ACOs were able to decrease cost of care for 19 out of the 21 financial measures tracked. Areas of cost increases were focused around outpatient primary care. While the overall savings were marginal, the OHA is, “encouraged by the first nine months of progress data.”
In their February 2014 report, OHA highlighted results of their 17 quality metrics. A focus on utilization resulted in a 13 percent decrease in emergency department visits and an 8 percent decrease in all-cause readmission while hospitalization for chronic conditions was cut by a third. Other areas of improvement include technology (EHR adoption has doubled in Oregon), primary care, and preventive care. Colorado’s Medicaid ACO program has also highlighted positive preliminary results including $44 million in gross savings in its second year. Few other state programs have publically released their quality or financial metrics. It remains to be seen if shared savings will offset investment costs.
Commercial ACOs
Perhaps the most diverse group of ACOs are those with commercial contracts. Like Medicare ACOs, commercial payers with ACO contracts strive for the “triple aim” goals of improved patient experience, improved quality of care, and decreased cost of care. However, they are not necessarily held to the same financial requirements, quality metrics, or reporting timeline used by the Center for Medicare and Medicaid Services (CMS). Publically available commercial results tend to highlight mostly positive aspects of a particular ACO.
Results are more difficult to compare than Medicaid ACOs due to their lack of uniformity in measurement and reporting. According to the Leavitt Partners ACO Database, there are 287 ACOs with commercial contracts, only 12 of which have reported financial results of some sort. Eleven of the 12 commercial ACOs report having saved money. Very few of these have reported a dollar figure for savings, but costs were reported to have decreased by between 2 and 12 percent.
Successes include one New England ACO that reported a medical cost trend 1.2 percentage points better than its market overall, as well as a large Northeast ACO which shared approximately $2 million in their contract with United Healthcare. Savings aside, the cost of ACO investment was made clear by one Northwestern ACO that reports spending about $1 million on infrastructure and only earning $125,000 in savings in the first year.
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In addition to negotiating their own financial arrangements with providers, commercial payers with ACO contracts also determine their own quality metrics. Some metrics are similar to those set by CMS while others are unique to a specific payer.
Table 2 provides insight into the quality metrics of some of the leading players in ACO commercial contracts. Commercial ACOs have been tight lipped about their quality metrics; quality metrics found in table 2 were garnered from publically available sources and are not a comprehensive list. Commercial contracts focus on preventive care management of chronic illnesses and access to care. Fifteen commercial ACOs reported quality results, although only about 50 percent of those provided quantifiable data.
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Winners and Losers
More important than providing a pulse on the ACO movement, the true value of these results lies in their ability to influence those organizations considering entering into the world of accountable care. These results represent a variety of sources including large health care systems, smaller physician groups, private payers, government contracts, etc. This makes them applicable to a wide variety of providers cautiously considering accountable care.
The results here go beyond answering the question “is it working?” They show winners and losers in the ACO game and highlight successful strategies as well as potential pitfalls.
