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Tag Archive: palliative care

  1. Health on the Hill: HR 3119 The Palliative Care and Hospice Education and Training Act (PCHETA) is Heard on the Hill

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    Everyone should be in the driver’s seat when it comes to their healthcare, especially at the end of life. We all need to know how a particular treatment might impact quality of life. If I have stage 4 cancer, how will an aggressive round of chemotherapy impact me? What if I take measures to manage the symptoms and utilize comfort care?

    One critical part of the process that can help us navigate between these two options is palliative care. It helps to ease the discomfort of an advanced illness while balancing it with curative treatments. The challenge is that many people do not know about palliative care, doctors receive little training in this approach, and the medical education system is not equipped to train enough healthcare professionals to accommodate our nation’s aging population.

    On Capitol Hill the House heard HR 3119 – The Palliative Care and Hospice Education and Training Act (PCHETA) that can help more Americans access palliative care. This bipartisan bill has been sponsored by Representatives Eliot Engel (D-NY) and Tom Reed (R-NY).  Compassion & Choices has endorsed this bill. Since the hearing, PCHETA has gained 200 co-sponsors (118 Democrats, 82 Republicans), and support is growing!

    The bill helps people with advanced illness by improving access to palliative care. It increases the number of permanent faculty in palliative care, makes funding palliative care an NIH priority and develops a national awareness campaign to support palliative care.

    PCHETA is important because many Americans don’t know about palliative options. A recent survey showed that almost 70% of respondents had no knowledge of palliative care. According to Dr. Sean Morrison at Mount Sinai Hospital in New York, when people hear what palliative care does, more than 90% of the respondents stated that they would want it for themselves or their family member, and that it should be universally available.

    Improving access to palliative care and patient awareness of it can help prevent unwanted medical treatment and empower patients. The PCHETA helps bridge the gap between the care people want and what they get. The hearing and research points out that palliative care can improve quality of life, and some instances actually extend it.

  2. New Policy Brief Highlights Need for Palliative Care for People with Advanced Illnesses

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    High quality, evidence-based care that improves patient outcomes and is consistent with patient values, preferences and goals and aligns with the mission of Compassion & Choices and the American Heart Association (AHA). That’s why Compassion & Choices President Barbara Coombs Lee joined other healthcare leaders in collaborating with the AHA to produce produce a new policy brief about how palliative care is patient and family-centered care that optimizes health-related quality of life by anticipating, preventing and treating suffering in people with advanced illnesses such as cardiovascular disease and stroke.

    Through communication, shared decision-making, advance care planning, and attention to distress (physical, emotional, spiritual or psychological), palliative care can help patients and their families address treatment options, long term prognoses and other health challenges.

    The policy brief notes that palliative care is greatly underutilized:

    • In hospitals reporting palliative care teams, an average of 3.4 percent of admissions receive palliative care services even though estimates place the need for palliative care between 7.5 percent and 8.0 percent of hospital admissions.
    • For-profit, southern United States, and small and safety-net hospitals (fewer than 100 beds) are less likely to report hospital palliative care programs.

    The policy brief concludes several barriers exist to patients receiving palliative care. They include:

    • Reluctance of providers to refer patients to palliative care due to lack of knowledge about benefits or availability of services.
    • Limitations in payment systems for comprehensive palliative care services.
    • Provider discomfort in communicating with patients and families about palliative care.
    • Lack of awareness by patients and families around palliative care services who may inaccurately assume they are not eligible as these services are so often equated with hospice.

    Compassion & Choices’ Federal Policy Agenda for 2016 is a roadmap for achieving patient-centered, family-oriented end-of-life care that empowers individuals and honors their choices. Guided by the Institute of Medicine’s 2014 report Dying in America, our agenda challenges policymakers to improve end-of-life care through actions in five areas:

    • Delivery of person-oriented, family-centered care.
    • Clinician-patient communication and advance care planning.
    • Professional education and development for healthcare professionals.
    • Policies and payment systems that are value-based, not volume-based.
    • Public education and engagement on end-of-life care issues for individuals and their caregivers.

    Click here to read our full Federal Policy Agenda.

  3. We no longer fear quality end-of-life care

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    This blog originally appeared in the July 13, 2016 edition of The Hill.

    “Death Panel.” Go ahead, say it three times: “Death Panel. Death Panel. Death Panel.” Did Beetlejuice, Candyman, the Abominable Snowman or another monster appear? No? Didn’t think so.

    A lot has happened in our national dialogue about end-of-life care in the past few years since opponents of the Affordable Care Act used the term “death panel” to demonize a bill provision to pay physicians for engaging in conversations with patients about their preferences for end-of-life care. As a result, lawmakers struck this provision from the Affordable Care Act to ensure its passage in 2010. Five years later, the Centers for Medicare and Medicaid Services (CMS) approved a virtually identical regulation last fall. There was no political outcry about it.

    Most of the credit for the change in public opinion when it comes to discussing end-of-life care belongs to those of us who have witnessed our loved ones suffer from nightmarish treatment at the end of life. We are demanding reforms to our medical system because it has subjected our loved ones to futile or unwanted medical treatments that only prolonged an agonizing dying process, ignored their healthcare preferences, and failed to advise them about palliative care options to provide comfort and reduce suffering.
    People are beginning to think more about these kinds of various end-of-life scenarios.

    • If I undergo a round of chemotherapy with advanced cancer, what will the impact be on my quality of life and my family?
    • How will it impact what is most important to me when I have such limited time?
    • Will I be able to pass away in a setting of my choice, surrounded by loved ones, or will I be alone in a hospital intensive care unit hooked to tubing in a comatose state?

    Fortunately, Medicare is making strides to help medical professionals align their values — and their patients’ — with their paycheck. For example, the new Medicare reform law, The Medicare Access and CHIP Reauthorization Act, should provide healthcare providers with financial incentives to provide higher quality care, not necessarily a high volume of care, so patients receive the medical treatments they want, no less and no more.

    In addition, there are numerous bipartisan bills designed to improve end-of-life care now pending on Capitol Hill. The Care Planning Act would pay healthcare providers for advanced illness planning and coordination services for Medicare beneficiaries with certain advanced illnesses. The Compassionate Care Act would increase training opportunities for healthcare professionals who are providing end-of-life care. The Removing Barriers to Person-Centered Care Act waives burdensome Medicare regulations so healthcare providers can take better care of people with advanced illness.

    We need to keep the reforms and conversations going. Whether Americans live in an urban or rural environment, they need much greater access to palliative care at the local level and a suite of comprehensive options at the end of life. They also need education about their palliative treatment options throughout advanced illness to prevent unwanted medical treatment and provide assurance that medical professionals will honor their advance planning documents.

    End-of-life care should default to a model that embraces patient-centered care so people understand the full impact of treatments and procedures. And this type of care should be provided no matter what ZIP code we live in, what the color of our skin is, which faith or values we subscribe to, or how much money we have in the bank.

    Mark Dann is federal affairs director for Compassion & Choices, the nation’s largest nonprofit organization that advocates expanding options for end-of-life care with 450,000 members nationwide. Sean Crowley is media relations director for Compassion & Choices. He also is a former press secretary for U.S. Rep. Sander Levin, D-Mich., the ranking member of the House Appropriations Committee, which has jurisdiction over federal healthcare programs.

  4. 5 questions to ask about end-of-life care

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    In a new piece published in The Courier-Post, Compassion & Choices’ Chief Program Officer Kim Callinan and hospice physician Brad Stuart discuss a recent survey on end-of-life-care from the John A. Hartford Foundation, California Health Care Foundation and Cambia Foundation.

    The survey found that doctors have a difficult time time talking with their patients about end-of-life issues, and that a lack of training in talking with patients and their families about death is one barrier to better care.

    Callinan and Stuart argue that empowering patients to ask the right questions could change this dynamic. They suggest patients ask the following questions about their diagnoses:

    • My condition: Is my disease curable? Will it shorten my life? By how much? What’s likely to happen as it progresses?
    • Benefits of treatment: How will this treatment help my condition? Will I be cured or will the disease come back? What are the odds either way? Will treatment return me to normal function?
    • Burdens of treatment: Does this treatment have side effects? What will my quality of life be like during treatment? What activities will I have to give up? How much time will I spend in the hospital or going to doctors’ appointments
    • Other treatment options: What are my other treatment options? What happens if we focus on slowing the disease without going for a cure? Or focus on comfort rather than fighting the disease? Or do nothing? What about hospice
    • Doctor’s personal view: A 2014 study by physicians affiliated with the Stanford University School of Medicine, Stanford Hospital and Clinics, and Veterans Affairs Palo Alto Health Care System showed that almost 90 percent of doctors would choose to forgo aggressive treatment at the end of their own lives. Most would want to die gently with few interventions. So patients should also ask their doctors: “What would you do if you had my diagnosis and prognosis?”

    Click here to read the full article in the Courier-Post.

  5. Callinan and Crowley: The Care Planning Act Could Help Cancer Patients

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    Compassion & Choices Chief Program Officer Kim Callinan and Media Relations Director Sean Crowley wrote a piece published in The Augusta Chronicle about the communications problems between doctors and patients who have been diagnosed with cancer. The piece references the 2016 CancerCare Patient Access and Engagement Report, which identified several communication issues:

    • Less than half of respondents said their care team knew their end-of-life wishes.
    • About a third or less of the respondents said they felt adequately informed about other treatment options their care team considered; the responsibilities of their caregivers; and clinical trial opportunities.
    • Between 22 and 37 percent of respondents said that additional information about palliative care, living wills or hospice care would have been helpful to them.

    Compassion & Choices supports the Care Planning Act, a bipartisan bill that would provide patients with terminal, chronic, or progressive illnesses with information and resources to better understand and plan their treatment plans. The bill would, among other things, provide:

    • education about the likely course of their disease and foreseeable care decisions that may be needed in the future when the patient is likely to be unable to make decisions;
    • assistance in describing their goals of care, values and preferences;
    • discussion about treatment options, including curative, palliative and hospice care, and their comparative benefits and burdens;
    • assistance in evaluating treatment options to identify those that most closely align with the patient’s goals of care, values and preferences, and creating a “concrete and actionable” plan of care based on those goals, values and preferences.

    Click here to read the full article in The Augusta Chronicle, and click here to send a letter to your senators supporting the Care Planning Act.

  6. Landmark Cancer Study Reveals Problems with Health Care System

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    A landmark report illustrating the many physical, emotional, financial, practical and informational needs cancer patients experience during and after clinical treatment was released Wednesday by CancerCare, a national nonprofit organization that provides free psychosocial support, education and financial assistance to anyone affected by cancer.

    The 2016 Patient Access and Engagement Report reflects the perspectives of more than 3,000 patients diverse in ethnicity, income, education, geography, age, insurance, cancer type and treatment stage regarding their understanding of their diagnosis and access to care, participation in treatment planning, communication and engagement with providers, insurance and financial issues, the impact of cancer on quality of life, and issues related to survivorship.

    The report’s findings include:

    • About one-third of respondents reported having inadequate information about the benefits, potential side effects and the goals of their treatment plan.
    • Receiving a cancer diagnosis prompted significant numbers of respondents under age 45 to have end-of-life discussions with family members. However, a significant proportion of respondents ages 45 and older had not communicated their wishes on these topics to family members or friends.
    • Respondents from all age groups had widespread misconceptions about palliative and hospice care.

    Full survey results are available at www.cancercare.org/accessengagementreport.

     

  7. Join us for a discussion in Atlanta

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    We sent the following message about an informative presentation featuring one of the country’s leading oncologists to our supporters in Georgia. If you’d like to attend this event, sign up here:

    Friend,

    Receiving a cancer diagnosis can be terrifying for both the person who is diagnosed and their family, but having the proper information at your disposal can make navigating the medical system much less intimidating. That’s why we’re hosting a presentation that will give you the tools to advocate for the care you or your loved one desires.

    Compassion & Choices will host an informational presentation by Dr. John Laszlo, MD, former director of clinical programs at Duke Cancer Center and national VP for research of the American Cancer Society.

    WHAT: The Person with Cancer and the Family: Questions, Options, Resources, and Care
    WHERE: Unitarian Universalist Congregation of Atlanta, 1911 Cliff Valley Way, Atlanta
    WEHEN: Sunday, May 15, 2016 3:00-4:00 p.m.

    Click here to RSVP for this event.

    Dr. Laszlo’s presentation is titled The Person with Cancer and the Family: Questions, Options, Resources, and Care. While at Duke, Dr. Laszlo authored Understanding Cancer, an important piece of medical literature describing what cancer is, how to seek treatment, and how to best talk about cancer with your doctors.

    Feel free to bring a friend to this discussion with one of the country’s leading oncologists.

    For questions or further information contact Perry Mitchell at 404-373-0842 or perwriter@comcast.net.

    Click the link below to RSVP:

    https://www.compassionandchoices.org/dr-laszlo-presentation

    Thanks for all you do,

    Roland

    Roland Halpern
    Cultivation Manager