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    About Palliative Care Blog ACPD advance care planning advance care planning day advance directive advance directives Akron's Children's Hospital Altru Health Systems Americans for Better Care of the Dying Angela Morrow birth blog Boston Globe Canadian Hospice Palliative Care Association CAPC CECC Central Minnesota Council on Aging CMS community Congressman Earl Blumenauer Dartmouth Center for Health Care Delivery Science Dayton Business Journal DDPC Office of Guardianship death and dying Diane Meier donate donors Dr. Albert Mulley Dr. Joanne Lynn effectiveness end-of-life care events facebook facts five wishes Frank Fajardo general global advance care planning government Governor Susana Martinez grassroots Haslinger Pediatric Palliative Care Center healthcare proxy HHS hospice Hospice at Home Huffington Post Jacqueline Janssen Janice Lynch Schuster Jr. Kevin Pho Larry Beresford lawyer Leavelight Lisa Long Malene Davis map Margaret Mead Marilyn Geary MD; advance care planning medical decision making Medicare My Story NAELA Nancy Joyner Nathan Kottkamp national healthcare decisions day national healthcare decisions day blog national hospice and palliative care organization national journal New Jersey Hospice and Palliative Care Organization New Mexico news news media NHDD NHDD 2011 NHDD Pledge palliative care Partnership for Patients Patient Safety Blog; Patient Empowerment; Ken Farbstein Personalize Your Care Act of 2011 photo POLST President Obama regret Respecting Choices SAGE scribd Shalama Jackson share your story; advance care planning; National Healthcare Decisions Day slideshare social media TEDxDartmouth twitter USA Today Wall Street Journal youtube
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    Monday
    Apr112011

    NHDD Blog Rally 2011...

    Rallying to Encourage and Empower Us All to Make Our Healthcare Decisions Now for the Unknown Later… 


    College education. Career path. Relationships. Starting a family.

    Buying or selling a house. Vacations. Retirement. From the age that we’re old enough to understand, most of us are taught and accept that these are the markers in life that we plan for. However, there’s one key marker that’s all-too-often missing from this list: healthcare decision-making. Like planning for these other life events, planning for the time (or times) that we are unable to express our healthcare wishes is of the utmost importance. It is something that should be well thought out, documented and revisited at different points in life to reflect any change in our desires or family situation or the person we wish to advocate for us. Unfortunately, it is a planning point that that majority of us have missed. As a consequence patients’ families suffer the added burden of having to guess when a health crisis happens. That’s why Nathan Kottkamp founded National Healthcare Decisions Day (NHDD) back in 2008 and why this nationwide advance care planning awareness initiative is as important as ever. So this year, I’ve joined my fellow bloggers throughout the country to spread the word about the importance of advance care planning with this special NHDD edition blog.

     

    Click to read more ...

    Monday
    Apr042011

    Just 12 Days 'til NHDD 2011: Won't You Share Your Story?

    So here’s my story:

    I clicked the link to fill out my very own advanced care directive. What an odd feeling to be the ‘patient’ filling out this form. It’s a subject I’d broached with my family time and time again (and, they were having no part of it), something that I’ve publicly advocated for over a year and that I’d publicly and privately chastised others for either not doing or not being interested in doing. And now, here I was, finally making an honest advocate of myself. As I read the instructions, all I could think to myself was ‘who can I possibly trust to respect and voice my wishes? ’ I’m closest to my twin sister and my mom, but not only do they not even trust me to pick out my own wardrobe, I can’t even bait them into a conversation about advanced care directives. Oye Vay! So I read it again! After more careful thought, I decided that my mom might let emotion cloud her judgment and my advanced care directive may turn up missing. But Melissa – my twin sister – on the other hand, she’s a straight shooter. She might not like or agree with my choices, but she’d speak up because it’s the right thing to do.

    Then, I got down to business, filling out the form! Luckily, this part was easy…what I had done for the past 16 months, is deliberate and clearly determine what I would or would not want done in terms of life sustaining treatments in various scenarios of terminal illness. Do attempt curative care in the initial stages of illness (if you haven’t already tried and failed) if physicians are hopeful of recovery or the odds seem like they are in my favor. DO NOT seek life sustaining care if it’s apparent that I’m dying and nothing is going to stop that process; let me live comfortably in my home surrounded by my stuff with hospice taking on the burden of care and giving aid to family caretakers. The details of which I clearly stated in the five lines allotted. And, it was a good feeling. In fact, ‘good’ may be an understatement, a wave of relief washed over me! My next thought was my next step: convince my family to have the same piece of mind I experienced when my advance directive was complete. So I guess my story is to be continued...

     

    You may –or may not—have been able to relate to my advance care directive story. However, many of the people I’ve shared it with in hopes of sparking ‘the conversation,’ have. We want the NHDD initiative to inspire people from all walks of life to be moved to plan their healthcare decisions and so we need people from all walks of life to share their stories.

     

    So, now I ask: after reading mine, won’t you share your story?

    Tuesday
    Mar292011

    NHDD Makes Headlines in the Midwest

    That’s right; National Healthcare Decisions Day (NHDD) participating organizations must be working over time to get the word out because their efforts are paying off tremendously.

    For today’s NHDD and Advance Care Planning News Round Up, we found an NHDD mention in the blogosphere...

    In a recent post titled ‘Gearing Up for National Healthcare Decisions Day,’ Angela Morrow, RN—and author of About Palliative Care Blog—exalts the importance of advance care planning, and tells a little bit about her personal advance directive experiences.

    Plus, as we scanned our news aggregators, we stumbled across not one, not two, but five news stories about NHDD in publications all over the Midwestern United States. So we've devoted this round up of NHDD mentions to that particular region...

    In the Northwestern most part of the Midwest…

    “Experts encourage sharing health care wishes,” a SCTimes.com story, highlights the efforts of The Central Minnesota Council on Aging (CMCA) to promote awareness of the need for advance care planning during NHDD 2011.

    In the ‘mid-Midwest’…

    The Northwest Herald reported that there is a “National Healthcare Decisions Day event planned at MCC.” According to the article, McHenry County, the Chicago End-of-Life Care Coalition (CECC) Northwest Branch will sponsor a free screening of a film in support of the NHDD initiative.

    Click to read more ...

    Friday
    Mar252011

    Advance Care Planning: Confessions (Cont'd)

    Today, we'd like you to glean some inspiration from the continuation of Janice Lynch Schuster's telling advance care planning journey. Part one of 'Advance Care Planning: Confessions' was this week's Wednesday evening post.

    Part 2 of 2 by Janice Lynch Schuster

    (To the left Schuster is pictured with her four children; Meredith, mentioned in this piece, is the young lady on the far right)



    Writing: 1997

    In the late 1990s, I got involved in working with Dr. Joanne Lynn and Americans for Better Care of the Dying. Through that work, I came to understand and appreciate the importance of completing an advance directive, of naming a health care spokesperson, of making sure that one’s wishes and preferences are known. I wrote about admirable and successful programs, from Respecting Choices in LaCrosse, Wisconsin, to The Five Wishes document available online. I read about values questionnaires and life reviews. I wrote about how important it is for families to have the conversations, to record their wishes, to make sure that their wishes are known to one another and to their health care providers. I helped to write several books on improving care for the end of life, and in each one extolled the importance of creating an advance directive, describing it as a gift to families, a way to help them avoid heartbreaking and divisive decisions that can occur when no such plans exist.

    And yet I was a hypocrite—for all my talk, I had not completed my own advance directive. I thought about it, talked about it, described my wishes to my husband, but never went so far as to put anything on paper. Then, in 2001, when my fourth child was born, I decided to complete an advance directive form as part of my labor and delivery. When I asked the nurse for the hospital’s standard form, she laughed. I was there to give birth, she said, not to die. Even so, I was by then an older mother, aware of the many complications that could arise during the most routine births. I insisted that I be given the form, which I dutifully completed, noting that if it came to it, sparing my life would be more important than sparing the baby’s. It was a selfish but essential thing to do; several other children then depended on me as their mother.

    When I’m Gone

    I saw a book advertised that I thought would help me through the process; if nothing else, it would give me a place to write down the scores of passwords and usernames I have developed in my prolific online life. I looked forward to the book, which is a nice spiral bound compendium of some 144 pages. I opened it, was promptly overwhelmed by it, and closed it. It sits on a bottom shelf, gathering dusk and triggering my guilt.

    I don’t want to be morbid

    My 18-year old daughter recently sent me an email message with the subject line, “I don’t want to be morbid.” For some reason, her abnormal psychology class was discussing the importance of creating advance care directives, and Meredith felt that she and I should sit down and craft hers. She didn’t want to think about dying, she said, but she did want to think about what she would want done if she were in a car crash and unable to live, breathe, eat, or think on her own. She asked if I could help her with this, and I promptly referred her to The Five Wishes website, which seems the easiest and most straightforward form to complete.

    In hindsight, I realize that I need to sit down with her and complete this form together. We need to have a conversation, each of us, about what we want and don’t want, about what we fear and what we hope for. We think we know—but until we begin the dialogue, we are only guessing at beliefs, based on our own experiences. Today happens to be Meredith’s 19th birthday. As a present to her, I am making a promise to myself—and to her—to sit down together and go through this process.

    Janice Lynch Schuster has written extensively about improving care at the end of life. With Joanne Lynn, she coauthored two books on quality improvement for end of life care: Improving Care for the End of Life: A Sourcebook for Healthcare Managers; and Clinicians and A Common Sense Guide to Improving End of Life Care (both from Oxford). Currently a senior writer with Altarum Institute, Schuster’s past work includes serving as director of communications for Americans for Better Care of the Dying. Her work has been widely published and is often featured in The Washington Post. She has received several blue pencil awards for her work with the National Institute on Aging.*

    Thursday
    Mar242011

    Hot Off the Presses (ACP News Round Up): From NHDD Events to Social Media and Patient Health Care

    ...that’s just to mention a few. Advance care planning has been ripe for media attention for a while and the press is finally taking notice. So here's what they're reporting on:

    As you know, the NHDD 2011 team has taken steps to broaden the reach of the initiative and engage more people through social media with @NHDD on twitter and the NHDD Facebook page. Well, recent Dayton Business Journal article “Patients flock to Facebook for health” says we’re doing it the right way! If patients are turning to social media more and more to make their medical decisions, they are certainly running across NHDD!


    However, we’re not the only ones embracing non-traditional means of spreading the word about NHDD. In “A drama of dying wishes,” the Charlotte Observer reports that Mecklenburg End-of-Life Coalition and Hospice & Palliative Care Charlotte Region, is hosting three, free productions of during this and next month of “Vesta,” a play written about starting the advance care planning dialogue. The production has been deliberately timed to coincide with NHDD in an effort to help people “have the talk.”


    Turning our attention away from the stage and back to the presses and the blogosphere, here are a few more noteworthy articles:

    • Also in the Huffington Post, Clinical Psychologist Joseph Nowinski’s post What to expect when a loved one receives a terminal diagnosis” is a great way to spark the advance care planning conversation with loved ones. After reading all that your family unit will have to endure and overcome upon receipt of a terminal diagnosis, I'd be thinking : 'why wait and add more stress by not planning in advance?'

    To round out our news tidbits, our trusted resource @HospiceAction just informed us that long time advance care planning champion on Capitol Hill Rep. earl Blumenauer will be the keynote speaker at their up and coming Hill Day 2011. We'll keep our ears to the ground to find out what he's got to say about the importance of advance care planning, advance directives and NHDD.


    Check back on Tuesday for more on the latest advance care planning news stories.