Why a National Center for Care at the End of Life?

Last April, at NHPCO’s Management and Leadership Conference, we rolled out the public phase of the National Hospice Foundation’s Capital Campaign for the National Center for Care at the End of Life. Some of you may already be aware of this important investment for the future of end-of-life care in this county. In fact, we’ve already raised $2.4 million of our $10 million goal, so things are off to a great start.

You may ask, “Why do we need a national center for end-of-life care?” Well, it has never been more important that we, as the nation’s hospice and palliative care community, have a permanent presence advancing our shared vision for care at the end of life. It is estimated that 70 million Americans will need hospice and palliative care services in the next 20 years, so what we do matters. As our nation grapples with challenges of healthcare delivery and costs, the need for us to strategically advocate for the dying has never been greater.

This Campaign will help ensure that we have a permanent home where skilled professionals can come together to accomplish the transformational work of care and compassion at the bedside.

The Cornerstone for Advancing Care and Compassion

The Washington-metropolitan area is a city of buildings that serve as “go to” destinations representing many organizations and causes. The National Center for Care at the End of Life will be the “go to” place dedicated to advancing and ensuring that high-quality care is available to everyone in need at life’s end.

I was moved by the enthusiasm that MLC attendees showed toward our Campaign. We have already finalized several naming opportunities for individuals and organizations that want to be a part of the National Center. If you or your colleagues need more information on how to be a part of the Campaign, visit the National Hospice Foundation website or contact the NHF team at 703-516-4928.

Providers, volunteers and supporters are all an important part of the hospice and palliative care community, and for that I am thankful.

I hope you’ll consider how you can become involved in supporting the National Center for Care at the End of Life.

Position Statement on Ethical Marketing Practices Released by National Hospice and Palliative Care Organization

(Alexandria, Va) – A position statement and commentary, Hospice and Palliative Care: Ethical Marketing Practices, has been released by the National Hospice and Palliative Care Organization. Approved by the NHPCO board of directors, this document reinforces the need for hospice and palliative care providers to utilize ethical marketing practices, which in turn, will ensure trust and support among those being served.

Ethical behavior exemplifies the foundational hospice values of service, respect, excellence, collaboration and stewardship. These values can both inspire and challenge end-of-life professionals as they promote services available in the community.

“Hospice and palliative care providers are caring for individuals and families who may be particularly vulnerable as they cope with serious and life-limiting illness. The highest ethical practices and standards are necessary from every single provider in the industry – with no exceptions,” said J. Donald Schumacher, NHPCO president and CEO.

“This position statement will help providers to establish accountability for sound ethical practices as they engage in marketing efforts and business development,” he added.

NHPCO’s position statement focuses on six key components:
1. Access to Care
2. Competition
3. Customer Service Excellence and Boundaries
4. Hospice and Palliative Care Organizations as Referral Sources
5. New Trends in Marketing and Communication
6. Traditional Media Marketing

NHPCO strongly believes that sound ethical practices are an essential component of quality.
The statement stresses that responsive admissions systems and personnel that meet patients’ and referral sources’ needs are hallmarks of service excellence. NHPCO further states that marketing practices should be evaluated and monitored frequently to avoid unethical decisions and behaviors.

NHPCO hopes the document serves as a catalyst for dialogue within and among organizations that provide hospice and palliative care—a dialogue that will support and reinforce ethical standards of practice.

Developed by the NHPCO Ethics Committee, Hospice and Palliative Care: Ethical Marketing Practices (PDF) is available on the NHPCO website.

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

NHPCO's other position statements are available on the NHPCO website.

A Member of NHPCO’s Leadership Team Shares Thoughts on Death(ly) Panels

I spent Memorial Day Weekend with a group of Cub Scouts ranging in age from six to 11. My son, who is eleven, was excited to be “crossing the bridge” from Cub Scouts to Boy Scouts. The formal ritual, which involved his Den leader saying some nice words about his growth and older Boy Scouts welcoming him to their midst, was an important milestone in my son’s life. He isn’t a little kid any more, he’s a teenager. I have no idea when that happened.

Nor do I know the specific moment when I became the adult caregiver of my mother, who turns 80 this year and has been in good physical and mental shape for years. Yet it hasn’t been easy. The death of her two sisters within six months of one another and two knee replacements surgeries of her own during those difficult months left her exhausted as well as emotionally and physically frail. I flew to Florida to visit her in the facility where she is receiving rehab, arranged for non-medical aides to help her when she moved back home and spent a few days with her so she wouldn’t be alone. This was an important milestone for me as an adult daughter. My responsibility level has increased and there really isn’t any going back.

As adults we experience multiple milestones – planned and unplanned – that mark our progression through life. One day we are happily single and the next we’re in a committed relationship. We’re childless and then become parents in a few short months. We are healthy and the next day we’re told we have a potentially life-limiting illness. It all happens so fast and there’s little we can do to slow down this inevitable march onward, through life’s stages.

We can’t stop it, even though many people try to slow down the aging process through surgery, exercise, nutrition or just plain denial. We can save money for our kids’ education. We can put money away for retirement. But eventually we’re all going to face the fact that we’re all mortal. Even as aware as we all are that we will die some day, we do little to plan for it.

When there is a healthcare crisis, which happens to so many people, we are unprepared, as are our families. We haven’t thought about the type of care we want or don’t want. We haven’t selected someone to speak for us if we can’t talk to the doctors ourselves. We haven’t told anyone whether we would or would not want to be kept alive through medical interventions if the chance of recovery was slim. We haven’t planned properly to make sure we are in control during what might be the last phase of our life.

My son is now memorizing all the Boy Scout pledges, laws and mottos in preparation for his first meeting. To me the most important one, besides “do a good turn every day,” is the one that is best known and yet universally most ignored – “be prepared.”

You can’t avoid the last milestone in life. Hopefully you won’t face it for many years to come. But it will happen, in some shape or form, to all of us. Take a lesson from my son, be prepared. Download a free advance directive, read it through and talk about with your doctor and family members, sign it and give copies to folks who will need it during a crisis. Take control of the phase of your life before that milestone creeps up on you and catches you unprepared.

GUEST BLOGGER: Kathy Brandt, MS, the Senior Vice President, Office of Education and Engagement at the National Hospice and Palliative Care Organization, is a passionate believer in the need to plan for, talk about, and document end-of-life care wishes, and the proud mother of an amazing eleven year Boy Scout.

Five Tips to Support Those Who’ve Lost a Loved One in Service to our Country

There is greater significance to Memorial Day (May 30) than the start of the summer season. Memorial Day is a time to publicly show our respect for those who have lost their lives in defense of our country and to offer support to grieving loved ones.

As we mark Memorial Day this year, we are a country involved in conflicts abroad. The ongoing fighting in Iraq and Afghanistan continues to take a toll on our nation. Serious injuries and the untimely deaths of our brave service men and women remind us that life is precious.

Hospice and palliative care professionals – who help families cope with loss on a daily basis – share ideas on how to honor this sacrifice on Memorial Day and every day:

1. Acknowledge the day with a phone call or card to the family; tell a story you remember about the service member who has died and/or ask the family to share a story. Keeping their loved one’s memory alive is an important part of healthy grief and coping.

2. Offer to accompany or take the grieving person to the cemetery or other place of remembrance; people are sometimes reluctant to take advantage of such opportunities alone and will appreciate your thoughtfulness.

3. Make a donation in memory of the person who has died to a charity that was important to the service member or the family; this can be a powerful reminder to them that you remember and that you care.

4. Listen. Sometimes the greatest gift we can give is to listen to what others think and feel. Supporting those who are grieving can be as simple as lending an ear or holding a hand.

5. Acknowledge your own feelings; share the range of thoughts and emotions you experience with someone you trust, but not necessarily with the grieving family. Whether it is pride or shame, grief or hope, sharing these feelings is important.

Memorial Day can be a time to reach out to each other and share in our communal experience of grief and loss.

Your community hospice can be a source of information on grief and bereavement.Caring Connections, a program of the National Hospice and Palliative Care Organization, also offers information on grief at caringinfo.org or by calling the HelpLine at 1-800-658-8898.

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Hospice and palliative care providers interested in learning how to address the unique needs of Veterans at the end of life, should learn more about We Honor Veterans, an pioneering program of NHPCO, in collaboration with the Department of Veterans Affairs (VA),that focuses on respectful inquiry, compassionate listening and grateful acknowledgment.

Say Cheese!

26th MLC, a set on Flickr.

Conference attendees were all smiles at our 26th Management and Leadership Conference last month. Check out the pictures from the conference!

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 National Healthcare Decisions Day (NHDD) was created 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. NHDD, which happens every April 16, is a collaborative effort of national, state and community organizations as well as dedicated individual advocates committed to ensuring that adult Americans – like you and me —have the information and opportunity to communicate and document their healthcare decisions. April 16 is rapidly approaching, so it’s time to kick the engagement effort into high gear. Here are some things you can do for yourself and your loved ones to prepare for NHDD 2011:

• 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: http://www.nhdd.org/p/resources.html to them. Or, encourage them to find a nearby participant and attend a local NHDD event.


• Share your advance directive with your healthcare providers and make sure it is on file in the event it is needed.

Already had the conversation with your loved ones, but want to do more? Here a few suggestions to rally support for NHDD and encourage even more action:

• Like the NHDD Facebook fan page and share it with your Facebook friends


• On Twitter? Follow @NHDD and share the information with your followers, i.e. ‘Just 5 days to #NHDD, when will you #havethetalk? @NHDD can help: http://bit.ly/glff1V’


• Send an email to your friends, staff, colleagues, lodge/social club members, and/or house of worship, telling them that you are participating in NHDD and encouraging them to do the same. Share the information above with them and/or use this template email:
  
  April 16 is National Healthcare Decisions Day, and I hope that you will join me in taking this time to discuss and document your healthcare wishes. We all need to be prepared in the event of a health crisis, and having the talk is easier than most people think, but many of us need a little inspiration or a reminder to do it. I hope that this message and National Healthcare Decisions Day are all you need. Please mark your calendar for April 16 to have the talk with your loved ones. There are all sorts of free resources, including free advance directive forms for each of the 50 states, on the NHDD website: www.nhdd.org. Additionally, please help me spread the word with Twitter, Facebook, and LinkedIn. Advance care planning is something we ALL should do and encourage others to do, regardless of age or current health. Discussing your wishes can be one of the most important gifts you ever give your loved ones.
  

Please use and share the resources available through the NHDD website and encourage and empower us all to make our healthcare decisions now for the unknown later.

Dartmouth Atlas Report

US End-of-Life Care Changing: While Medicare Patients are Spending Less Time in Hospital, Those Admitted Receive More Intensive Care

Chronically ill Medicare patients spent fewer days in the hospital and received more hospice care in 2007 than they did in 2003, but at the same time there was an increase in the intensity of care for patients who were hospitalized, according to the Dartmouth Atlas Project report "Trends and Variation in End-of-Life Care for Medicare Beneficiaries with Severe Chronic Illness."

"It may be possible to reduce spending, while also improving the quality of care, by ensuring that patient preferences are more closely followed," said David C. Goodman, M.D., M.S., lead author and co-principal investigator.

Download the full report in PDF from Dartmouth Atlas website.