The palliative care program featured in this story, Care Choices, is a collaboration between Ellis Hospital’s palliative care and the Visiting Nurse Service of Northeastern New York. This program is a model for all communities in New York State and beyond. It also provides a clear and on-point definition of palliative care for anyone who in uncertain what palliative care is or if it would benefit them or a loved one. Well done … you are leading the way.
The Center to Advance Palliative Care (CAPC) has an established National Palliative Care Registry whose business is to gather data on both the prevalence and the characteristics of palliative care programs across the country.
Dr. Diane Meier, Director of CAPC and colleagues pooled data from the National Palliative Care Registry on staffing of palliative care programs in hospitals during 2012 and 2013. Data indicated that nearly 18,000 additional palliative care physicians would be needed to meet the needs of existing palliative care programs in the United States. In this article, Healio HemOnc Today, interviewed Dr. Meier about the findings and the impact she hopes they will have on palliative care programs across the country.
Home-based palliative care programs are getting a lot more attention in research. They have shown to make a connection between quality of care and potential cost-savings to the system even if the intervention costs money!
Nearly 90% of adults say that they would prefer to receive end-of-life care in their homes if they were terminally ill, yet only a small proportion of Medicare beneficiaries die in their homes.(2,4) This study shows that a home-based palliative care program can decrease unwanted hospitalizations, increase the chances of dying in one’s home, and improve utilization of hospice services, all with a significant savings in cost.
Hospital-based palliative care programs have been growing rapidly across the country, largely due to the mounting evidence of improved quality and costs savings. Maybe it is time we focus some of those expansion efforts on providing care for patients where they actually want it – in their homes.
Dana Lustbader, MD and coauthors from ProHEALTH Care—An Optum Company and ProHEALTH Medical Management (Lake Success, NY), Optum Center for Palliative and Supportive Care (Eden Prairie, MN), and OptumCare (Phoenix, AZ), describe a Home-Based Palliative Care (HBPC) program that was implemented within an Accountable Care Organization of a Medicare Shared Savings Program. The retrospective study compared individuals enrolled in the HBPC program to those receiving usual care.
An HBPC team included registered nurses, social workers, doctors, and administrative staff, each with strong clinical skills in palliative care. Care included home visits, telephone calls, and access to telepalliative care, in which patients and caregivers could interact virtually with any member of the team using a smart phone or computer. Ultimately, the progam was associated with a $12,000 reduction in the mean total cost of care per person, fewer hospital admissions and emergency room visits for individuals with advanced illnesses.
“This is strong evidence that home-based palliative care delivers on the value equation—improved quality at lower cost,” says Charles F. von Gunten, MD, PhD, Editor-in-Chief of Journal of Palliative Medicine and Vice President, Medical Affairs, Hospice and Palliative Medicine for the OhioHealth system.
Researchers analyzed claims data for 28,731 patients from around the country under age 65 and with metastatic lung, colorectal, breast, pancreatic or prostate cancer. They looked for how often patients within the last 30 days of their lives received chemotherapy, radiation, an invasive procedure, went to the emergency room or were admitted to the hospital, or received intensive care; or died in the hospital.
Looking at chemotherapy alone, they found that rates ranged from 24 percent of prostate cancer patients receiving chemotherapy in their last 30 days to 33 percent of patients with breast cancer. Rates of hospital admission or emergency room visits were some of the highest, with 62 percent of colorectal cancer patients and 65 percent of lung cancer getting hospitalized or visiting an emergency room.
“Overuse of aggressive care at the very end of life for a cancer patient can translate to increased burden on patients and their families,” Falchook said. “If these treatments are making patients sick, and if patients continue to go to the hospital, this can reduce their ability to really spend time with their loved ones at the end of life, and to get the most time out of the life that they do have left.”
Patients’ perceptions of care quality within and across settings are important for the further development of palliative care. The aim of this study was to investigate patients’ perceptions of palliative care quality within settings, including perceptions of care received and their subjective importance, and contrast palliative care quality across settings. This paper is part of and analyses data from a larger cross-sectional study, using a questionnaire that measured patients’ perceptions of quality of palliative care.
Published in the December, 2015 Journal of Pain & Symptom Management this article suggests that a special business case is needed in which the financial benefits for organizations such as hospitals and payers are aligned with the demonstrable clinical benefits for patients. Based on published studies and the authors work with PC programs over the past 15 years, authors identified 10 principles that together form a business model for specialist PC. These principles are relatively well established for inpatient PC but are only now emerging for community-based PC. Three developments that are key for the latter are the increasing penalties from payers for overutilization of hospital stays, the variety of alternative payment models such as accountable care organizations, which foster a population health management perspective, and payer-provider partnerships that allow for greater access to and funding of community-based PC.
USA Today published this article on February 17, 2016. Utilizing personal stories and clinical opinon and experience this article discusses the efficacy of continuting life prolonging treatment when the potential for little benefit and potential for great physical and emotional burden looms. Steven Etoch, a cardiothoracic surgeon at Norton Healthcare in Louisville states, “The decision is frequently not, ‘Can we do something, it’s should we do something?’ The author concludes that ‘Whichever path patients choose — cure or not — many doctors say they need to have more and earlier access to palliative care, which aims to ease symptoms and treatment side effects as well as related social, psychological and spiritual problems.’
This study examines the impact of music therapy on patients who are undergoing palliative care. Researchers examined 84 patients who were taking part in palliative care. The participants were divided into two groups: One received music therapy, and the other was the control group that received verbal relaxation exercises. In the music therapy group, the patients listened to two sessions of live music-based relaxation exercises using a monochord, a wooden instrument that provides an atmospheric, relaxing sound.
The researchers found that the patients who were in the music therapy group rated higher levels of relaxation and well-being after the session, compared to the control group. And it wasn’t just self-reported information; the researchers measured the physiological effects of the session, finding that music had a physical effect on the patients.
NY Times published this article on February 16, 2016. The article illustrates the lack of awareness and understanding of Palliative Care among not only the general public but many healthcare professionals. The article righlty states that “palliative care offers more care as needed, not less” and “unlike hospice, patients can use it at any point in an illness – many will ‘graduate’ as they recover witout forgoing curative treatment.
The American Society of Clinical Oncology (ASCO) and the American Academy of Hospice and Palliative Medicine (AAHPM) have partnered to create a consensus definition of high-quality palliative care incorporated into oncology practices.
Lead author, Kathleen Bickel, MD, MPhil stated that the consensus definitions were necessary in order to ‘improve palliative care delivery and access to patients with cancer, we must first define and agree on what oncology practices should be providing.’ Bickel worked with a 31-member multidisciplinary panel that included physicians, patient advocates, social workers, nurses, and nurse practitioners, to rank 966 different palliative care service items, grouped into nine domains, according to their importance and feasibility and whether the services were within the scope of medical oncology practice.
Items that ranked highly in all three areas—importance, feasibility, and scope—were included in the definition of high-quality primary palliative care in oncology. Bickel says that ‘these goals may adapt and change over time, but we hope this work will serve as a foundation for future palliative care–related quality measures, quality improvement initiatives, and educational activities and will help oncology practices improve their delivery of primary palliative care.’
Bickel, KE, McNiff, KK, Buss, MK, et al. ‘Defining high-quality palliative care in oncology practice: An ASCO/AAHPM Guidance Statement.’ Journal of Clinical Oncology. 2015;(supplemental abstract #108)
Hospitals are under increasing pressure to reduce costs by preventing hospital readmissions. Growing evidence has demonstrated that palliative care can decrease acute care utilization and inpatient costs. The objective of this study was to examine the impact of palliative care consultations on 30-day readmissions in an urban hospital setting. Authors conclude that there is great value in a palliative consult as these facitlitate goals of care discussions which in turn are associated with reduced readmisssion rates.
The 2015 State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals was released today on Capitol Hill. The report demonstrates that access to palliative care remains highly variable and depends more upon accidents of geography and hospital ownership than it does upon the needs of patients with serious illness and their families. The report was conducted by the Center to Advance Palliative Care (CAPC) and National Palliative Care Research Center (NPCRC).
Key findings on the growth in access to hospital palliative care teams across the fifty states include:
• Overall, the southern U.S states received a grade of C as compared to As and Bs for all other regions
• Only 23% of for-profit hospitals have palliative care. Not-for-profit hospitals are 7 times more likely to have a palliative care team than for-profits
• In a sign of progress since 2008, 17 states received a grade of A (up from 3 in the 2008 report and 7 in the 2011 report)
• 90% hospitals with 300 beds or more have palliative care teams
• 90% of hospitals operated by the Catholic Church have palliative care
• 96% of teaching hospitals now have palliative care teams, increasing the likelihood that the next generation of clinicians will receive training
People facing life-threatening illnesses often turn to palliative care, not only to address their pain, but also to navigate end-of-life choices. It’s never an easy process, but it’s even harder for those living in remote rural areas. PBS reports on how one doctor in Northern California is trying to come up with innovative ways to ease the process.
Urologist, Dr. Michael Rabow believes that physicians should discuss palliative care options to patients “right from the beginning of their diagnosis and treatment.” He suggests that one way for physicians to incorporate palliative care into the comprehensive care regimen might be to “think about palliative care like nutrition or other supportive interventions. The (physician) can position the benefits of palliative care and referral to a palliative care specialist in a similar way that nutrition is positioned.”
Bergman said the first step to addressing the greater use of palliative care begins with educating (physicians) about the benefits “and then to educate health systems about the fact that not only will their patients do better—their patients will live longer and likely at a lower cost.”
New York Times health reporter Jane Brody wrote this article to educate the general public about palliative care. There remains confusion about the term, what it is and who it would benefit. Palliative care is often thought of as synonymous with hospice, and yet the truth is that “hospice is a form of palliative care for people who are dying, but palliative care is not about dying. It’s about living as well as you can for as long as you can.”
The first principle of palliative medicine is to relieve the pain and other symptoms that burden people living with serious illness – in short, to help people feel better. Because complex illness thrusts patients into a decentralized and often confusing health care system, palliative care seeks help from many sources, including doctors and nurses specializing in pain control, social workers, chaplains, nutritionists, rehab specialists, pharmacists, and others.
Unfortunately, because palliative care is a relatively new specialty, it is often misunderstood by patients, families, and even some physicians.
This article very simply and eloquently discusses palliative care with the patient and family in mind. Palliative care is described as the best solution for people facing serious, painful diseases, and introduces the very real possibility of living comfortably with such diseases for a very long time. Author Dr. William H. Frist is a nationally acclaimed heart transplant surgeon and former U.S. Senate Majority Leader. Frist’s intention is to help clear up confusion about a topic that he believes will be revolutionary in the current health care delivery reform environment. Frist states that palliative care “will be central in the new wave of integrated Accountable Care Organizations (ACOs) and population-based reimbursement models that are being explored now. Programs that are designed to provide seamless care, from the beginning of an illness to the end, will increasingly rely on the expertise and person-centered approach of palliative care teams.”
This short (seven-minute) video highlights the need for expressing end-of-life wishes. Focusing on one woman’s experience of conversation with her mother about end-of-life concerns, the video explores the dynamics of end-of-life conversations, and notes that they are crucial. Many people are caring for their aging parents. Adult children often have trouble listening to their aging patents when their parents try to express their end-of-life wishes for the following reasons:
- End-of-life conversations are intrinsically sensitive conversations. They force us to contemplate a future without our loved ones.
- Discussions about end-of-life issues may trigger unwelcome feelings of personal death awareness.
- Many people feel guilty initiating or participating in these conversations with our parents and or other loved ones. Assuming the role of the surrogate decision maker can be quite stressful. We do not want “play God” and make difficult decisions that may potentially shorten the lifespan of our loved ones.
- Despite the fact that death is a certainty for all of us, the eternal optimist in each of us prefers to think that we have lots of time before we get to that point (both for us and for all our loved ones).
An outpatient palliative care project sponsored by the Palo Alto Medical Reimbursement discusses how palliative care helps people from both a quality of life and financial perspective. The Foundation reports that this program gave patients a better quality of life living at home while reducing average hospital stays from 162 to 85 days and hospital costs from $486,000 to $255,000. This article and accompanying video highlights the stories of several patients who felt that they were “too sick to live but not yet ready to die.” These patients were reluctant to accept hospice but were comfortable receiving outpatient palliative care at home to coordinate their care and manage the symptoms of their illness(s) or disease(s) as well as their spiritual, social and psychological issues.
Although palliative care remains one of the least understood concepts of care, palliative care programs and services are growing and adopting multidisciplinary approaches to patients in hospitals and the community.
This article, from HealthLeaders magazine, recounts the story of an 80-year-old cancer patient who wanted to return to his Florida home to die. While the patients’ oncologist continued to suggest additional therapies, the family eventually intervened to honor the wishes of their loved one. The hospital’s palliative care team, which focuses on comfort, pain management, and spiritual assistance for the very sick, helped the patient make the transition to the comfort of home, where he wanted to spend his remaining days.
HPCANYS and the NYS Department of Health originally presented The Palliative Care webcast, “Palliative Care: Essential for the Patient, the Family and Public Health” broadcast on March 4, 2010. This one-hour segment addresses how chronic conditions affect the quality of life for many people and their families and how palliative care provides patient and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering at any time from diagnosis through the end of life. The program also emphasizes that the use of palliative care as an integral part of patient care has a beneficial impact on both a patient’s quality of life and attendant health care costs.
Topping the list of most-read Health Affairs Blog posts for May, 2012 is Diane Meier’s discussion of the barriers to palliative care and how we might overcome those barriers. As an example of how the system should work, but too often doesn’t, Meier cites the case of Amy Berman, who chronicled her experiences after being diagnosed with terminal breast cancer in the April Health Affairs Narrative Matters essay.
Currently, 18 months after her diagnosis, Amy is still living life on her terms with a good quality of life. She states that, “however my story evolves – then ends – I’m at peace. And I’m living just the way I want to.”
Amy Berman is a registered nurse and senior program officer at the John A. Hartford Foundation in New York City. She was diagnosed with an aggressive form of breast cancer in November 2010 that had spread to her spine and yet she chose not to pursue a course of aggressive treatment for the disease. Amy has been outspoken about her choices and about the option of patient-centered and palliative care. This article is an in-depth look at her diagnosis, the choices she faced and her decisions along the way.
In the article, Amy states, “I want every patient facing end-of-life decisions – which, when you think about it, eventually will be all of us – to have access to the kind of open communication I’m receiving. Each patient deserves to understand the diagnosis, the probable course of the disease and the likely timetable. Each deserves to be asked about personal goals, and each deserves help with making treatment decisions. We also need a process that helps doctors learn that the length of patients’ lives isn’t the sole consideration.”
New York Times Op-Ed contributor Susan Jacoby tells the story of her mother who at age 89 was suffering with multiple degenerative diseases and a choice between hospital visits and “invasive, expensive medical procedures” or going home to live with the help of palliative care to relieve her pain and manage her symptoms. She chose the later.
The article also provides some interesting statistics from the Pew Research Center about Americans beliefs about advanced directives and the actual use of them. Jacoby states that, “There is a clear contradiction between the value that American society places on personal choice and Americans’ reluctance to make their own decisions, insofar as possible, about the care they will receive as death nears.”
The Center to Advance Palliative Care (CAPC) commissioned this research with the objectives of exploring the levels of awareness and understanding regarding what palliative care is among key audiences as well as ‘testing language, terminology, definitions and messaging’ that would be most useful when defining and/or discussing the benefits of palliative care with consumer and provider audiences. The findings published in this report present a roadmap for all palliative care providers, advocates and stakeholders for the development of communication and education strategies that will lead to a demand for access to quality palliative care from an educated consumer base.
In an article written for the Robert Wood Johnson Foundation’s Human Capital Blog, Chris Feudtner, MD, PhD, MPH, shares his observations on the importance of the growing field of pediatric palliative care, and how this important specialty can become increasingly robust and relevant to children, parents, and families. He notes the growing prevalence of pediatric palliative care teams, and the ways that interdisciplinary teams can provide increasingly high-quality care to those who need it.
The purpose of these teams is to pursue three core tasks. The first is to help manage pain and symptoms, “using both pharmacologic and complementary methods.” A second core task is to support patients and parents as they receive medical information and make critical decisions for care. In the many-times overwhelming environment of caring for a critically ill child,these teams can provide indispensable backup for families. Finally, these interdisciplinary palliative care teams “help coordinate care both across specialty disciplines within the health system, and across different sites of care… often in partnership with hospice or home nursing.” All three of these tasks are carried out in coordination with the patient’s primary medical team; palliative care adds and never subtracts.
This Washington Post article demystifies palliative care and discusses the fast pace with which hospital based palliative care programs are growing and why. Author Michele Andrews states that one reason for the growth is that “as hospice care became more established, policymakers and clinicians realized that seriously ill patients, even when not facing death, could benefit from better pain and symptom management and other palliative-care services.” What respondents were sure about (a full 81 percent of them) is that they want Medicare to pay for palliative care services, something it rarely does now. And 71 percent believe that services like palliative care, to improve quality of life for acutely ill patients, should be encouraged over efforts to simply extend their life via medical treatments and interventions.
This recent Washington Post article, discusses the benefits of providing hospital-based palliative care from the perspective of the patient and the clinical staff. The author writes that,”in the controlled chaos of an hospital emergency department, ensuring that patients are pain-free and can make informed choices about their care often takes a back seat to assessing and stabilizing them and moving them through the system as fast as possible. But now some experts say that providing palliative care — which focuses on patients‘ quality-of-life issues — can and should be a priority in emergency departments, and they‘re putting together a program to help hospitals better address those issues.”
A New York Times article entitled, “Palliative Care Extends Life, Study Finds” relates the results of an interesting new study published in the New England Journal of Medicine that shows the effect of palliative care when it is provided throughout the continuum of care for advanced lung cancer. Early integration of palliative care with standard care in patients with metastatic non–small-cell lung cancer resulted in survival time that was prolonged by approximately 3 months as well as meaningful improvements in quality of life and mood. Dr. Jennifer S. Temel, an oncologist and author of the paper, states that there is sometimes tension between medical specialties, since surgeons and oncologists often view cancer as a battle, while palliative care specialists are seen as “giving up.” Doctors and patients “traditionally see palliative care as something extended to a hospitalized patient in the last week of life,” We thought it made sense to start them at the time of diagnosis. And we were thrilled to see such a huge impact. It shows that palliative care and cancer care aren’t mutually exclusive.”ospital