National Healthcare Decisions Day - April 16

In honor of National Healthcare Decisions Day (NHDD), April 16, I’m sharing a guest post, by Nathan Kottkamp, Founder and Chair of NHDD. I hope it will inspire you to think about the conversations we should all be having with our own loved ones about an uncomfortable but important topic – planning for when we die.

Are you one of the 80% of Americans who haven’t completed an Advanced Directive yet? We’ve all struggled with how to get started on this topic – and there are plenty of reasons why we resist:

• Fear
• Uncertainty
• Not sure how to start
• Don’t know what’s legally binding
• Worried I’ll hurt someone’s feelings
• Just haven’t had the time to do it

That’s why we recognize April 16 as National Healthcare Decisions Day (NHDD) – a movement designed to inspire, educate, and empower the public and providers about the importance of advance care planning. Put another way, NHDD is a day for all adults to mark their calendars, have the talk, and document the talk with an advance directive.

Regardless of your own reasons not acting already, you might find your way to start the conversation by watching this awesome three and a half minute video at www.nhdd.org. It’s proof that it takes only a few minutes to start a conversation with your loved ones about advance care planning—a conversation that affects people for a lifetime.

After the goosebumps settle down from watching the video, here are some specific things you can do for NHDD:

• Lead by example. Schedule time with your loved ones (on or before April 16) to “Have the Talk” and complete your own advance directive. There are many tools, including free forms, you can use to walk you through the process and make your wishes known; access them through the NHDD Public Resources page.
• Encourage your loved ones and friends to learn more about advance directives and to complete their advance directives. You can forward this link: www.nhdd.org.
• Share your advance directive with your healthcare providers and make sure it is on file in the event it is needed.
• Like the NHDD Facebook fan page and share it with your Facebook friends
• On Twitter? Follow @NHDD and share the information with your followers, such as: Just 5 days to #NHDD, when will you have the talk? @NHDD can help: www.nhdd.org

Please use and share the resources available through the NHDD website and encourage and empower us all to make our healthcare decisions now for whenever they will need to be known.

Nathan Kottkamp
Founder and Chair
National Healthcare Decisions Day

Things we are grateful for this year

For three years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace [www.engagewithgrace.org] – a movement

aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post. They’re not easy questions, but they are important – and believe it or not, most people find they actually enjoy discussing their answers with loved ones. The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition. We’ve supported each other’s efforts. And we’ve helped make this a topic of national importance.

So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go” [http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande]– it is a work of art, and a must read.

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process, shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED [http://www.thehealthcareblog.com/the_health_care_blog/2010/10/engage-with-grace.html] for letting us share our story and our vision.

And of course, thank you to everyone who has taken this topic so seriously, and to all who have done so much to spread the word, including sharing The One Slide.

Don't Wait to Talk About Hospice

With Release of PBS FrontlineSeries and Dartmouth Atlas Report, NHPCO Reminds People of the Importance of Advance Care Planning

(Alexandria, Va) – An intimate journey into the edge of life is how this evening’s episode of the PBS series Frontline has been described. Frontline’s "Facing Death" will air this evening (11/23/10) at 9:00pm on most PBS stations.

In this groundbreaking film, doctors, patients and families at one of New York’s biggest hospitals speak with remarkable candor about the increasingly difficult choices people are making at the end of life: when to remove a breathing tube in the ICU; when to continue treatment for patients with aggressive blood cancers; when to perform a surgery; and when to call for hospice.

This follows the release of a report from the Dartmouth Atlas Project looking at care for patients with advanced cancer at the end of life that identified gaps between patient wishes and care received.

The National Hospice and Palliative Care Organization urges members of the public to learn about advance care planning and discuss wishes with family members.

“It’s an all too common situation. A family is at the bedside of a loved one who is seriously ill and nearing the end of life,” remarked J. Donald Schumacher, NHPCO president and CEO. “Each member of the family has a different idea of what should be done and what the patient would have wanted.”

Far too many people wait until they are in the midst of a health care crisis before thinking about what options are available or what care they or their loved ones would have wanted. Hospice professionals deal with these challenging situations every day – that’s what they are trained to do.

When a family is coping with a serious illness and a cure is no longer possible, hospice provides the type of care most people say they want at the end of life: comfort and dignity. Considered to be the model for high-quality, compassionate care for people with a life-limiting illness, hospice care includes expert medical care, pain management, and emotional and spiritual support. Care is provided by an inter-disciplinary team of professionals and trained volunteers. The wishes of the patient and family are always at the center of care.

Most hospice care is provided in the home – where the majority of Americans have said they would want to be at this time. Care is also provided in nursing homes, assisted living facilities, and hospice centers.

Care is paid for by Medicare, Medicaid, and most private insurance plans and HMOs.

The National Hospice and Palliative Care Organization reports that more than 1.56 million people received care from our nation’s hospices last year.

Hospice providers can help with information about care options and choices and ensure you live as fully as possible throughout your entire life. They will make sure your loved ones receive support as well.

One of the best ways to make sure you and your loved ones benefit fully from hospice, should you ever need this care, is to talk about it before it becomes an issue.

For more information on advance care planning and hospice, visit NHPCO’s Caring Connections at caringinfo.org or call the HelpLine at 1-800-658-8898.

Caring Connections is one of the recommended resources included with the education tools PBS has made available online for “Facing Death.”

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Contact:
Jon Radulovic
NHPCO, Vice President of Communications
Ph: 703-837-3139
jradulovic@nhpco.org

Attention on Medical Overtreatment Raises Awareness on Advance Care Planning, Hospice and Palliative Care

NHPCO's Caring Connections Encourages People to Learn More

(Alexandria, Va) – Recent media coverage (Associated Press 06/29/10) on the challenges patients and families face with overtreatment of a life-limiting illness brings the issues of hospice and palliative care and advance care planning to public attention.

“It’s important to remember that quality of life and a patient’s personal wishes, beliefs and values must be a factor when making care decisions brought about by a serious or terminal illness,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

“Discussions helping patients and families understand the many benefits of hospice and palliative care must be more common and held long before a family faces a medical crisis,” Schumacher added.

Advance Care Planning

Advance care planning—which includes completing a living will and appointing a healthcare proxy—is somewhat like planning a road trip to an unfamiliar destination. Very few people would expect to get to a destination safely and comfortably without having a well-thought-out map in hand. Yet, it’s estimated that 70 percent of Americans have not completed a living will.

• A living will charts the course for your healthcare, letting your family and health care providers know what procedures and treatments you would want provided to you—and under what conditions.
• A healthcare proxy or healthcare power of attorney form, allows you to choose someone you trust to take charge of your healthcare decisions in case you are unable to make those decisions yourself.
• Advance directives can be changed as an individual’s situation or wishes change.

Hospice and Palliative Care

Many people mistakenly think that hospice is simply a place you go when nothing more can be done to address an illness. That misunderstanding can keep people from accessing the expert care that hospice and palliative care offers.

NHPCO reports that more than a third of hospice patients received care for seven days or less—not enough time to take full advantage of the range of available services.

Hospice and palliative care provide symptom management, pain control, and support to address emotional, psychological, and spiritual needs.

“Hospice brings patients and families compassionate care when a cure isn’t possible. Palliative care provides comfort and support earlier in the course of a serious illness and is not dependent upon prognosis,” explained Schumacher. “Together, hospice and palliative care provide solutions beyond traditional medical care. Most importantly, hospice and palliative care provide dignity at a time when it’s needed most.”

Important Facts

• Over 80 percent of hospice care takes place in the home.
• Over 1,300 hospitals have palliative care programs; many of the nation’s 4,800 hospice providers offer palliative care services as well.
• Hospice care is covered under Medicare, Medicaid, and most private insurance plans.
• Bereavement services are available to family for a year following the death of a loved one.
• Research has shown that hospice patients lived an average of 29 days longer than similar patients who did not opt for hospice care.

Learn more about advanced care planning, hospice care, and palliative care from NHPCO's Caring Connections at www.CaringInfo.org or call the HelpLine at 1-800-658-8898.

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Contact:
Jon Radulovic
NHPCO, Vice President of Communications
Ph: 703-837-3139
jradulovic@nhpco.org

Engage with Grace at www.engagewithgrace.org. Join the Blog Rally. Pass it on. #EWG

Some Conversations are Easier than Others
Take Time this Holiday Season to Ask Your Loved Ones about Their End-of-Life Wishes

Last Thanksgiving weekend, many of bloggers across the Internet participated in the first documented “blog rally” to promote Engage With Grace – a movement to get more and more people talking about their end of life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with Thanksgiving weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation started. National Hospice and Palliative Care Organization wants to share these questions with you. They’re not easy questions, but they are important. Think about them, document them, share them.

Over the past year there’s been a lot of discussion around end of life. Throughout the year, the Engage With Grace team has been fortunate to hear many uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide, seen below, now stands sentry on their fridge.

National Hospice and Palliative Care Organization’s Caring Connections provides a wide range of materials to help families talk about the care they would want and take steps to make their wishes know. This includes state-specific advance directive forms that can be downloaded free-of-charge. Visit Caring Connections at www.caringinfo.org or call 1-800-658-8898.

Learn more about Engage With Grace at http://www.engagewithgrace.org/.

To download The One Slide or for suggestions on using it, go to http://engagewithgrace.org/Download.aspx.