When is it Time for Hospice?

Hospice brings compassion, dignity and hope to people nearing life’s end

(Alexandria, Va) – There is a point when cure is no longer possible for someone with a life-limiting illness, but that does not mean a patient and family must abandon all hope. Through hospice care, there is still hope for a peaceful death; hope to spend final months, weeks or days free of pain; and hope for quality time with loved ones in the familiar surroundings of home.

“While there isn’t one specific point in an illness when a person should ask about hospice care, many hospice professionals would suggest that a person think about hospice long before he or she is in a medical crisis,” advises J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “In fact, learning about palliative care and hospice as options is something that should happen early in the course of a serious illness and not just in the final days.”

Hospices utilize a team of professionals and trained volunteers to provide expert medical care, pain-and-symptom management, and emotional and spiritual support to patients and family caregivers. All care is tailored to the patient’s needs and wishes.

Hospice helps patients and families focus on living as fully as possible.

“Hospice professionals can be important resources for patients and families, they can help a person figure out what goals are important and help them get their arms around the fact that their life may be coming to a close,” noted Schumacher.

Considered to be the model for high-quality, compassionate care for people nearing the end of life, hospice offers the services and support that Americans want when coping with life-limiting illness.

Last year, hospice cared for more than 1.56 million patients in the US. NHPCO estimates that 41.6 percent of all deaths in the US were under the care of a hospice program last year.

Facts about hospice:

• Most hospice care is provided in the home. Care is also provided in nursing homes, assisted living facilities, and hospice centers
• Hospice care is fully covered by Medicare, private insurance, and by Medicaid in most states.
• Hospice care is not just for people with cancer. Hospices serve those with advanced Alzheimer’s disease, heart disease, lung disease, HIV/AIDS – anyone who is facing a life-limiting illness.
• The hospice benefit pays for medications and medical equipment related to the illness.
• Hospice care is available as long as a doctor believes the patient is eligible.
• Hospice care can include complementary therapies, such as music and art, to bring additional comfort.
• Hospice’s offer grief support to the family following the death of a loved one.

“Ideally, a patient would receive hospice care for the final months of life – not just the final days,” stated Schumacher. “One of the most common sentiments from families who have been helped by hospice care is that they wish they had known about hospice sooner.”

A recent report from the Dartmouth Atlas Project looking at care for patients with advanced cancer at the end of life identified gaps between patient wishes and care received. This highlights the need for people to learn about all options available for care.

Additional research published in the Journal of Pain and Symptom Management found that Medicare beneficiaries who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.

For more information, contact your local hospice, visit NHPCO’s Caring Connections website at caringinfo.org, or call the HelpLine at 1-800-658-8898.

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

Dartmouth Atlas Report Identifies Gap between Patient Wishes and Care Received

NHPCO Commends Dartmouth Atlas Project and Calls on Hospitals to Increase Access to Hospice Care

(Alexandria, Va) – A new report released today from the Dartmouth Atlas Project showing that individuals in some areas of the country are far less likely to receive comfort care in accordance with their wishes and has drawn the attention of the nation’s hospice and palliative care community.

This first-ever report from the Dartmouth Atlas Project on cancer care at the end of life, found that across the US, about 29 percent of patients with advanced cancer died in a hospital between 2003 and 2007. And in 50 academic medical centers, fewer than half of these patients received hospice care.

Furthermore, the study authors state that many patients are aggressively treated with curative therapies they may not want, and, “for frail elderly patients, and any patient with advanced cancer, these treatments have limited or no benefit.”

“The Dartmouth Atlas Project is to be commended for undertaking this thorough examination of end-of-life care for Medicare beneficiaries with advance cancer,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “While the findings of variation in care are not necessarily a surprise, one of the key messages that I take away from this report is the critical need for hospitals and all healthcare professionals to ensure that all patients are informed earlier about the course of an illness and the range of options available – options that include hospice and palliative care.”

The likelihood that a Medicare patient with advanced cancer will die with the support of hospice care, or in the hospital without hospice, varies markedly depending on where he or she lives and receives care. The percent of cancer patients dying in a hospital varied threefold among patients receiving most of their care at academic medical centers.

“It’s important to recognize that this report is not a negative comment on care in our nation’s hospitals or among academic medical centers, rather, it’s a much needed reminder that healthcare professionals must work to help patients and families understand where the course of their illness may take them. And, when cure is not possible, it is our duty to offer the robust benefits that the hospice team can provide,” added Schumacher.

Hospice care provides coordinated care delivered by a team of interdisciplinary professionals that are trained to address the special needs a person has at the end of life. The hospice team provides pain and symptom relief as well as emotional and spiritual support for the patient and the family.

More than 1.56 million Americans received care from the nation’s hospices last year. However, 34 percent of patients died or were discharged in seven days or less – too short a time to take full advantage of all of the services available under hospice, including support for family caregivers.

“In more than 30 years of running hospice programs, the most frequent comment I would hear from patients and families was why they didn’t learn about hospice care earlier,” Schumacher noted.

For several years, NHPCO’s Caring Connections has been providing healthcare professionals and consumers with information about care options and caregiving when facing serious or life-limiting illness. Information to help patients and family caregivers understand the benefits of hospice care, speak with physicians about care, or learn about advance care planning is available free of charge from NHPCO’s Caring Connections at www.CaringInfo.org or by calling the HelpLine at 1-800-658-8898.

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The Dartmouth Atlas Project is run by the Dartmouth Institute for Health Policy and Clinical Practice and principally funded by the Robert Wood Johnson Foundation. A link to the full study can be found at www.dartmouthatlas.org.

NHPCO is the oldest and largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. NHPCO’s mission is to lead and mobilize social change for improved care at the end of life, www.nhpco.org.

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

November 2010 Palliative Care Grand Rounds

The 2010 November Palliative Care Grand Rounds (PCGR), highlighting blog post focusing on hospice, palliative care and grief matters, is being hosted this month by Compassion & Choices Blog. Check it out today!

The views expressed in the Palliative Care Grand Rounds are the sole responsibility of the authors of each blog highlighted and does not necessarily reflect the views of NHPCO, this blog or its editors.

It's never too late to say 'thank you' to our nation's Veterans: even at the end of life

A Message from J. Donald Schumacher, PsyD
President/CEO
National Hospice and Palliative Care Organization

Americans across the country celebrate Veterans Day on November 11, a special day to salute the men and women who have bravely served our country in the military.

These fellow Americans have made profound sacrifices in defense of freedom and they deserve our heartfelt thanks and appreciation. Honoring our nation’s Veterans includes supporting them throughout their entire lives, especially at the end.

As our nation marks Veterans Day 2010, the National Hospice and Palliative Care Organization deepens its commitment to increase Veterans’ access to the compassionate, high quality care available from the nation’s hospice and palliative care providers.

NHPCO has been a long-time supporter of the valuable work being done by the Department of Veterans Affairs to bring palliative care services to VA Medical Centers and the communities they serve.

This past month, NHPCO in collaboration with the VA, took a great step forward to help healthcare providers better serve Veterans at life’s end by launching the website www.WeHonorVeterans.org, the centerpiece of the new We Honor Veterans campaign. This campaign will help those who provide care at the end of life, better understand the unique needs of our nation’s Veterans.

But there is something that every American can do to honor and serve our Veterans – and that is to say, “thank you.” Not just on November 11 but all year long.

Ask your friends, neighbors, coworkers and others in your community whether they have served in the military (you may be surprised how many have)—and thank those who have served for their sacrifice.

A generation of World War II and Korean War Veterans are facing end-of-life care decisions now, and they are quickly being followed by younger Vietnam War Veterans, many of whom are confronting serious illnesses at an even earlier age.

It surprises many Americans to learn that every day, 1,800 Veterans die. That’s more than 680,000 Veterans every year – or 25 percent of all the people who die in this country annually.

The liberty that we, as US citizens, enjoy comes at a price paid by these valiant men and women. Let each of us make sure we do our part to recognize and support them throughout their lives.

If you know a Veteran who is in need of the special care hospice and palliative care brings to people facing serious and life-limiting illness, please reach out and help them learn more about care options. Information is available from NHPCO’s Caring Connections at www.caringinfo.org or by calling the HelpLine at 1-800-658-8898.

To all our nation’s Veterans, thank you.

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Don's 2010 November Video Update

For more information visit, http://www.nhpco.org

We Honor Veterans Campaign will Help Providers Care for Veterans at the End of Life

(NHPCO, Alexandria, VA) – It surprises many Americans to learn that 25 percent of all deaths in the US are Veterans. That’s 1,800 people a day; more than 680,000 Veterans every year. These heroic Americans deserve recognition for their military service – particularly at the end of life’s journey. A new resource will help healthcare professionals honor our Veterans.

National Hospice and Palliative Care Organization in collaboration with the Department of Veterans Affairs (VA), is launching We Honor Veterans, a pioneering campaign to help improve the care Veterans receive from hospice and palliative care providers.

By recognizing the unique needs of our nation’s Veterans who are facing a life-limiting illness, hospice and palliative care providers will be able to accompany and guide America’s Veterans and their families toward a more peaceful ending. And in cases where there might be some specific needs, related to the Veteran’s military service, combat experience or other traumatic events, providers will find tools to help support those they are caring for.

The resources of We Honor Veterans focus on respectful inquiry, compassionate listening, and grateful acknowledgment, coupled with Veteran-centric education of staff caring for Veterans.

“All hospices are serving Veterans but often aren’t aware of that person’s service in the armed forces,” said J. Donald Schumacher, NHPCO president and CEO. “Through We Honor Veterans we are taking a giant step forward in helping hospice and palliative care providers understand and serve Veterans at the end of life and work more effectively with VA medical facilities in their communities.”

Remarked Thomas Edes, VA Director of Home and Community Based Care “The VA shares a common goal with our nation’s hospices, and that is to provide the best possible care specifically tailored for Veterans, meeting their goals of care in their preferred setting. As we focus on working together and unite our services and skills, We Honor Veterans will channel our combined strengths directly to Veterans - wherever they are receiving care.”

“America’s Veterans have done everything asked of them in their mission to serve our country and we believe it is never too late to give them a hero’s welcome home. Now it is time that we step up, acquire the necessary skills and fulfill our mission to serve these men and women with the dignity they deserve,” added Schumacher.

A newly launched website, wehonorveterans.org, provides hospice and palliative care providers, state hospice organizations, and Hospice Veteran Partnerships with tools and resources that will encourage them to:

• Learn more about caring for Veterans;
• Declare a commitment to honoring Veterans at the end of life;
• Partner with VA at the local, regional and national level;
• Assess their current ability to serve Veterans;
• Provide education for hospice staff and volunteers;
• Measure quality and outcomes for continued improvement.

The We Honor Veterans campaign will provide tiered recognition to organizations that demonstrate a systematic commitment to improving care for Veterans. These “Partners” will assess their ability to serve Veterans and, using resources provided as part of the campaign, integrate best practices for providing end-of-life care to Veterans into their organization.

As Americans prepare to honor our nation’s heroes on Veterans Day, November 11, and pay tribute to the men and women who have served our country, NHPCO and the VA are proud to make this new resource available.

To learn more about We Honor Veterans or to support this important work, please visit wehonorveterans.org.

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Media Contacts:
Jon Radulovic, 703-837-3139 or jradulovic@nhpco.org
or
Andy Duncan, 703-837-3145 or aduncan@nhpco.org

October 2010 Palliative Care Grand Rounds

The 2010 October Palliative Care Grand Rounds (PCGR), a "monthly blog carnival" highlighting blog post focusing on hospice, palliative care and grief matters, is being hosted this month by Palliatve- SW by SWHPN Blog. Check it out today!

The views expressed in the Palliative Care Grand Rounds are the sole responsibility of the authors of each blog highlighted and does not necessarily reflect the views of NHPCO, this blog or its editors.

Schumacher Quoted in Oncology Times

NHPCO's Don Schumacher is quoted in an article in Oncology Times, "Helping Prevent Suicide in Cancer Patients," (September 25, 2010 issue). The article by Robert Carlson begins:

"Oncologists who say they've never had a patient commit suicide simply might not know. The patient who doesn't return for treatment or reportedly died of an accidental drug overdose could have decided, in their suffering, that life was not worth living."

Dr. Schumacher offers some insight from his 30 years of running a hospice program. This is an informative article for oncologists and other healthcare providers.

Read the article online! What are you thoughts?

Researchers Find that Cancer Patients who Disenroll from Hospice have Increased Hospitalizations and are less likely to Die at Home

Disenrollment can have a Physical and Financial Toll

(Alexandria, Va) – According to a new study, patients with terminal cancer that disenrolled from hospice care had significantly higher rates of hospitalizations – including admission to the emergency department and intensive care unit – than patients who remained under the care of hospice. Furthermore, patients who disenrolled from hospice were more likely to die in the hospital than patients who remained with hospice until their deaths.

National Hospice and Palliative Care Organization hopes that healthcare professionals and policy makers will take time to look at this and other recent studies that help provide a better understanding of both the cost and quality-of-life benefits associated with the hospice experience, including honoring a patient’s wish to be able to die at home.

The study, which was led by researchers at the Mount Sinai School of Medicine, found that:

• 33.9 percent of the patients who disenrolled from hospice care were admitted to an emergency department, in contrast with only 3.1 percent of hospice patients.
• 39.8 percent of disenrolled patients were admitted to the hospital as an inpatient, in contrast with only 1.6 percent of hospice patients.
• Disenrolled patients spent an average of 19.3 days in the hospital, whereas hospice patients spent an average of 6.7 days.
• 9.6 percent of disenrolled patients died in the hospital, compared to only 0.2 percent of hospice patients.
• Costs of care for patients with cancer who disenrolled from hospice were nearly five times higher than for patients who remained with hospice.

“Impact of Hospice Disenrollment on Healthcare Use and Medical Expenditures for Patients with Cancer” is published in the October 1, 2010 issue of Journal of Clinical Oncology.

“This study illustrates the tangible value of hospice care to patients who want to die at home, with the support of the hospice interdisciplinary team, surrounded by family rather than in a hospital connected to machines. There are significant emotional and financial benefits to the patient, family and healthcare system when hospices are caring for people,” said J. Donald Schumacher, NHPCO president and CEO. “In my 30 years running a hospice, I heard time and time again from families that wanted to keep their dying loved one at home.”

“There are numerous reasons why a patient may disenroll from hospice, and while those factors were not part of this study, we are reminded of the importance of advising patients and families as to the potential toll that might accompany leaving hospice care prematurely. A toll that may be physical, emotional, and financial,” added Schumacher.

Wrote the study authors, “Policy makers have called for tightening eligibility restrictions for the MHB (Medicare Hospice Benefit) as part of a wider effort to reduce high Medicare expenditures; our results suggest that addressing hospice disenrollment may be an effective means of reducing Medicare expenditures for hospice users without restriction access to the MHB.”

Further recommendations suggest that oncologists explore outpatient palliative care services that offer multidisciplinary care, symptom control, and end-of-life planning expertise in a context that enables a patient and family to maintain contact with the oncology clinic.

In his plenary address at NHPCO’s “Developing the Continuum of Care” conference held in Boston on August 5, Dr. Schumacher encouraged all hospice providers to explore ways that they can offer “pre-hospice” palliative care services in their communities and work with other providers to ensure patients and families have the right care at the right time from diagnosis on through bereavement for family.

More than 1.5 million patients with life-limiting illness receive care every year from the nation’s hospices.

Information about hospice and advance care planning is available from NHPCO’s Caring Connections. Visit caringinfo.org or call the HelpLine at 1-800-658-8898.

NHPCO's 11th CTC is the best value!

It's not too late to attend! Make a sound investment in your professional education!

With over 120 concurrent sessions, innovative content from leading experts and best practices that you can take back to your program and advance your level of care, NHPCO’s 11th CTC offers the best value for hospice and palliative professionals from all disciplines.

Advanced Registration Rates are extended! While online registration has closed, you can still register onsite and receive the advance registration rate!

Experience all NHPCO’s 11th CTC has to offer:

• Four powerhouse plenary sessions
• Over 120 educational sessions
• Regulatory and Pediatric Tracks
• Discipline-Specific Networking Meetings
• NHPCO's Job Fair and over 70 Exhibitors with new products and services
• Discounted Marketplace items with opportunity for FREE SHIPPING
• FREE Full-Day Preconference Seminar – We Honor Veterans
• FREE Preconference Event - Hearing the Voices of "The Soon Departed
• Poster Presentations
• Discounted FHSSA IMPACT Fund Event ticket prices

Plus – Your conference registration includes a daily continental breakfast, 2 lunches and a reception featuring heavy hors d’oeuvres.

Additional Educational Opportunities:

• Hospice Manager Development Program- Foundational Course
• Seven Preconference Seminars

Attend this year’s Clinical Team Conference and Pediatric Intensive, September 13-15. Visit the CTC webpage for more information.

August 2010 ChiPPS Newsletter Released

NHPCO’s Children’s Project on Palliative/Hospice Services has just released the new issue of its newsletter. This issue of the ChiPPS newsletter offers a PDF collection of articles that illustrate the importance of memory making and legacy building in pediatric palliative and hospice care. A message from NHPCO President and CEO J. Donald Schumacher was included – and is shared below.

(Download the PDF collection of articles)

A Message from Don Schumacher

On August 2, I opened NHPCO’s conference, Developing the Care Continuum, with a discussion about the importance of hospice and palliative care in the continuum of care. I wanted to share just a few thoughts with the readers of the ChiPPS newsletter.

I think many people would agree that the US healthcare system is quite fragmented – hence the importance of creating a continuum that includes hospice and palliative care. This must include pediatric palliative care.

Pediatric care has always been near to my heart and as quality-driven providers, we should be able to support the needs and/or assist in care coordination of all those coping serious and life-limiting illness – this includes children, adolescents, and their family members.

I recognize that pediatric palliative care is something many providers feel uncomfortable offering, but it is something we should understand more fully. We must expand our skill set and explore what resources are available to families in the communities we serve. I commend the work of the Children’s Project for Palliative/Hospice Services in developing new tools and resources to move the field forward.

Pediatric palliative care was specifically addressed in the health care reform legislation passed this year. This was a provision that NHPCO strongly lobbied for. The law allows children who are enrolled in either Medicaid or CHIP to receive hospice services without foregoing curative treatment related to a life-limiting illness. This should provide for a more seamless continuum.

When there is a seamless care continuum, providers work together to develop a coordinated plan that addresses all the needs of the patient and family caregivers. Those of you involved in pediatric palliative care know all too well that the needs of these seriously ill young people and families encompass physical, emotional, social, spiritual, nutritional and financial as well as practical and logistical needs. Care and services should be coordinated by professionals who understand the range of options available and appropriate in each situation.

I also want to stress that the concept of the care continuum is not – indeed, cannot be – solely geared to hospice providers. I know there are many hospice professionals working with ChiPPS but there are many others representing a range of provider types and disciplines, and we all must be involved with the development of the care continuum. Working together towards the creation of a seamless continuum will require us to collaborate and partner in a more expansive way than we’ve ever seen in the hospice community.

I believe that every single hospice provider needs to offer non-hospice palliative care. If you do not, somebody else will. Hospices are the experts in serious and life-limiting illness in their communities and they must be leaders in developing a seamless continuum of care.

So what I’m hoping is that hospices in the United States, in addition to the wonderful things they already do providing care in the last months of life, will become more visible and available as providers of or experts in pediatric palliative care.

Thank you for all you do to advance care for young people and their families.

J. Donald Schumacher, PsyD
NHPCO President and CEO

Research Shows Patients May Live Longer with Hospice and Palliative Care

NHPCO Reminds People They Can Ask Physicians for Palliative Care

(Alexandria, Va) – A new study released by the New England Journal of Medicine found that among patients with non-small-cell lung cancer, those who received palliative care lived, on average, almost two months longer than those who received standard care. Researchers also found that the patients receiving palliative care reported a higher quality of life through the final course of their illness.

The goals of palliative care are to improve the quality of a seriously ill person’s life and to support that person and their family during and after treatment. Sharing the same philosophy of hospice care which is usually provided in the final months of life, palliative care may be provided at any stage during a serious or life-limiting illness.

Researchers also found that when patients received palliative care services, they were also more likely to elect hospice services.

"With earlier referral to a hospice program, patients may receive care that results in better management of symptoms, leading to stabilization of their condition and prolonged survival," wrote the authors of the study released Wednesday in the New England Journal of Medicine.

This new study adds to the body of evidence showing that many patients live longer with hospice and palliative care.

A 2007 study that looked at Medicare beneficiaries with some of the most common diagnoses leading to death, found that patients who received hospice services lived on average, 29 days longer than those who did not receive hospice care. This study, published in the Journal of Pain and Symptom Management (March 2007) looked at 4,493 terminally ill patients with either congestive heart failure or cancer of the breast, colon, lung, pancreas, or prostate.

In an earlier study looking at patients with 16 of the most common terminal diagnoses, researchers found that hospice patients lived longer. On average, this ranged from 20 days for those with a diagnosis of gallbladder cancer to 69 days for the cohort of breast cancer patients (JPSM, September 2004).

“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “Those of us who have worked in the field have seen firsthand how hospice and palliative care can improve the quality of and indeed prolong the lives of people receiving care.”

NHPCO encourages all families who are diagnosed with a serious illness to ask their healthcare providers about hospice and palliative care services.

“The time to learn about these services is before a person is in a medical crisis. Patients and families must learn about these options of care as soon as possible,” Schumacher added.

Both hospice and palliative care focus on helping a person with a serious or life-limiting illness by addressing issues causing physical or emotional pain, or suffering. Hospice and other palliative care providers have teams of people working together to provide care.

More information about hospice and palliative care is available online at caringinfo.org or by calling the HelpLine at 800-658-8898.

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

Promising Steps

I am heading to our conference on “Developing the Care Continuum” next week and I’m looking forward to what I know will be some thoughtful, forward-thinking discussions. Devoting an entire event to exploring the various ways we can become more visible, more available, and more valuable to the people in our communities is, in itself, a forward-thinking strategy—and also very timely.

Greater attention will be placed on improving care coordination and eliminating duplicative services as the health reform law is implemented over the next several years. All hospices, not just a select few, need to begin thinking, planning, and taking steps toward greater collaboration or the diversification of their services if they want to grow their census. Palliative care is certainly one option that is already on the rise in hospitals. However, other services are also helping hospices to establish relationships with patients and other providers earlier in the life cycle. In the coming weeks, NHPCO will make available both webcasts and session tapes from the conference to help members who were unable to attend.

Be mindful, too, of the positive steps that are also being taken here in Washington (yes, Washington!):

• From our conversations with Senator Ron Wyden, we know the Concurrent Care Demonstration Project is now taking shape. This three-year project, which will be conducted by CMS, will monitor patients at 15 different hospice programs who will be permitted to receive other Medicare-covered services as well as hospice care. The goal is to evaluate the impact of concurrent care on the patient and family’s quality of life as well as the cost of care. It has the potential to strengthen the bridge between hospice and palliative care—and may be another good reason to consider a partnership or expansion into palliative care.
• Undaunted by the ‘death panel’ debacle of last summer, Representative Earl Blumenauer has also re-introduced legislation calling for Medicare and Medicaid to cover voluntary consultations about end-of-life care planning between patients and their physicians. NHPCO worked with the Congressman to help advance this valuable legislation, including a formal letter of support.

I know that running a hospice program today is not easy, given the regulatory and economic challenges of our times. As one colleague admitted, “it’s easy to get stuck in the weeds.” But it is far too critical a time to let that happen. This new decade holds much promise—if we are all poised and ready to be part of it.

Don

FY2011 Wage Index and Tools for NHPCO Members Now Available

CMS has posted the FY2011 hospice rates and aggregate cap. NHPCO offers members two important tools.

1) FY2011 Excel spreadsheet with the FY2011 wage index and the FY2011 rates for each county in each state.
2) FY2011 rate calculator that projects the wage index values and rates through FY2019. The calculator also allows you to project a percentage growth in your hospice's census for each year.

Links to these tools are available on the Wage Index page of NHPCO's website. Here's a link to the Regulatory Alert that went out to members on July 26, 2010.

Additionally, the PDF of CR7077 is available on the CMS website.

Don Schumacher Interviewed on Marketplace

President/CEO Don Schumacher was interviewed on public radio’s Marketplace about current issues in end-of-life care. Produced by American Public Media, Marketplace is broadcast internationally and is available online. Part one, of “End of life care: More or less of it?” was broadcast 07/20/10.

Part two of the story, “Better Training for Better End-of-Life Care,” looks at palliative care and visits San Diego Hospice and Institute for Palliative Medicine. Marketplace links to materials from NHPCO’s Caring Connections as helpful resources.

The story also features a photo slide show.

A Time to Take Pause

I have the good fortune of living in our nation’s capital, a wonderful spot to be during the July 4 festivities. While the fireworks are always spectacular and the spirit of patriotism palpable, what I also enjoy is the time we take to pay tribute to the many individuals in our own communities who, through their service and dedication, enrich our lives.

Julia Quinlan, the mother of Karen Ann Quinlan, is one of the first people that comes to my mind. June 11 marked the 25-year anniversary of her daughter’s death and, in May, she helped celebrate the 30-year anniversary of the hospice she and her late-husband, Joseph, founded in their daughter’s honor. I had the opportunity to talk with her last month about her family’s decade-long ordeal, how she came to learn about hospice, and the work she is still doing at the vibrant age of 83. Excerpts from our conversation appear in the July issue of NHPCO’s NewsLine, and I think, as you read it, you will find her accomplishments inspiring. Members can find July NewsLine at www.nhpco.org/newsline)

Mrs. Quinlan is one of the exceptional people who make hospice care what it is today, but there are others. A few weeks ago, as I was reviewing our first digital edition of Insights, I was reminded of many others. This magazine, which is a publication of NHPCO’s National Council of Hospice and Palliative Professionals, is very much a forum for our membership. Under the guidance of NCHPP’s leadership, members from around the country contribute articles about the work they are doing to improve care at the bedside. This particular issue mirrors the theme of our August conference on Developing the Care Continuum, and includes 15 articles by well-known hospice leaders as well as lesser-known clinicians who are equally committed. I’d like to offer a link to the digital issue of Insights for those who are interested in sharing the work of NHPCO members.

Last but not least, I’d like to personally thank John Thoma, the CEO of Hospice of Wake County, for writing the July NewsLine cover story about NHPCO’s new Standards and how it has benefited his program. He and his fellow members on the Quality and Standards Committee were instrumental in making this critical document a practical tool for the entire membership.

While the long holiday is now behind us, I hope you have each set aside time to enjoy some sunshine with your friends and loved ones. While our dedication to service excellence is both necessary and laudable, it requires sufficient rest.

Don

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

A Message from Don Schumacher, June 2010

Becoming a Larger Part of the Care Continuum

My opening plenary at the Management and Leadership Conference in April touched on many issues that, as an industry, we must be keenly aware of—and address together. In the limited space I have here, I’d like to talk about one of the issues of increasing import right now. That is, finding additional ways to serve more people in our communities.

I actually raised this issue when I became NHPCO’s president/CEO in 2002. As an industry, we were far too dependent on reimbursement from the very fragile Medicare system—and we still are today. While hospice payment reform will be the ultimate catalyst for change, my hope is that all providers will begin taking steps now to assess the needs in their community and explore ways to utilize their skills to meet their broader community’s needs. This is what I mean when I speak of becoming a larger part of the ‘care continuum.’ Much of my plenary address was devoted to this issue and I truly believe it is the very crux of our future success or demise as an industry.

The diversification or expansion of our services is, of course, not a quick or easy task to undertake. It requires planning and a thoughtful business strategy. But it is doable—there are programs which are now demonstrating just how doable it is.

Some hospices are now offering adult day care and home-diversion programs, others have become PACE providers, and still others are expanding into palliative care. In some cases, these providers are partnering with other organizations and in other cases they are going it alone. So I ask that you study the work now being done; explore various reimbursement models, including community-based waiver programs; and identify and begin dialog with potential partners in your community. Our cover story this month shares the process that Pathways Hospice followed to develop its community grief center in Fort Collins, Colorado—an excellent example of how one program assessed a community need and, building on a core strength, expanded its services. Our thanks to Nancy Jakobson, director of the center, for sharing her program’s experience with us.

In the coming months, NHPCO will be providing tools and resources to help you in this process. Our specialty conference in August, “Developing the Care Continuum: Innovative Models to Meet the Unique Care Needs of Patients/Families” will also serve as a dynamic forum to help jumpstart discussions among providers.

I encourage every provide-member to find additional ways to become a larger part of the care continuum. If we don’t step up, others will—leaving our industry a very marginalized component of the nation’s new healthcare system.

Don

Note: Don’s monthly message appears in NewsLine; members can access this month’s and previous issues at www.nhpco.org/newsline.

June 2010 Palliative Care Grand Rounds

The June Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog post focusing on hospice, palliative care and grief matters, is being hosted this month by Julie Rosen at the Schwartz Center Blog. Check it out today!

The views expressed in the Palliative Care Grand Rounds are the sole responsibility of the authors of each blog highlighted and does not necessarily reflect the views of NHPCO, this blog or its editors.

NHPCO Releases Statement and Commentary on Commentary on Palliative Sedation Therapy to Promote Greater Understanding

(Alexandria, Va) – For the very limited number of imminently dying patients whose pain is intolerable and unresponsive to other palliative interventions, the National Hospice and Palliative Care Organization believes that palliative sedation can be a treatment option that should be considered by healthcare providers, patients, and families.

Palliative sedation refers to the lowing of patient consciousness using medications for the purpose of limiting patient awareness of suffering that is intractable and intolerable.
In releasing its position statement and commentary on the "Use of Palliative Sedation in Imminently Dying Terminally Ill Patients," NHPCO seeks to:

1. clarify the position of NHPCO on the use of palliative sedation for patients at the end of life,

2. recommend questions and issues to be addressed when palliative sedation is being considered, and

3. assist health care organizations in the development of policies for the use of palliative sedation.
Approved by the NHPCO board of directors in December 2009, the statement and commentary appears in the May 2010 issue of The Journal of Pain and Symptom Management, and is now publicly available.

The position statement consists of six core tenets:

Availability
For the small number of imminently dying patients whose suffering is intolerable and refractory, NHPCO supports making the option of palliative sedation, delivered by highly trained healthcare professionals acting as an interdisciplinary team, available to patients.

Proportionality
Since the goal is symptom relief (and not unconsciousness per se), sedation should be titrated to reduce consciousness to the minimum level necessary to render symptoms tolerable. For most patients this will mean less than total unconsciousness, allowing the patient to rest comfortably, but to be aroused.

Interdisciplinary Evaluation
There must be a physician with expertise in palliative care leading the intervention. Patients suffering at the end of life will receive optimal benefit from the involvement of a highly-skilled interdisciplinary team. NHPCO recommends convening an interdisciplinary conference specifically about the use of palliative sedation for each patient with whom it is being considered. In all cases, care must be patient- and family-centered. If the needs of the patient and family differ, the primary focus is on the needs of the patient.

Education
Professionals involved in the process of providing palliative sedation must have training and competence in this particular intervention. Providers should be engaged in ongoing education that addresses symptom assessment and management. Further, facility with integration of the ethical considerations related to use of palliative sedation is essential.

Concerning Existential Suffering
Suffering can occur even when physical symptoms are well controlled. As with any other type of suffering, NHPCO believes that hospice and palliative care professionals have an ethical obligation to respond to existential suffering using the knowledge, tools, and expertise of the interdisciplinary team. It should be noted that the lack of concurrence by the NHPCO ethics committee on the definition and assessment of existential suffering precludes a recommendation regarding the use of palliative sedation for existential suffering. NHPCO strongly urges providers to carefully consider this question and supports further ethical discussion.

Relationship to Euthanasia and Assisted Suicide
Properly administered, palliative sedation of patients who are imminently dying is not the proximate cause of patient death, nor is death a means to achieve symptom relief in palliative sedation. As such, palliative sedation is categorically distinct from euthanasia and assisted suicide.

This statement addresses the use of palliative sedation only for patients who are terminally ill and whose death is imminent.

"This document provides valuable guidance about a complex issue that—while not frequently used—is often misunderstood," said J. Donald Schumacher, NHPCO president and CEO. "Our intention is to address the ethical issues surrounding palliative sedation and help hospice and palliative care providers create policies and guidelines to ensure they are well-prepared concerning this treatment option."

"We are not calling for an increase in the practice of palliative sedation but want to take a major step forward to redress some of the common misconceptions," added Schumacher.

Developed by the Palliative Sedation Task Force of the NHPCO Ethics Committee, members of the task force wanted to indentify and analyze the most robust evidence and arguments about palliative sedation and summarize that material in a way that would be helpful to the NHPCO membership.

Timothy W. Kirk, who led the task force commented, "We want to stress in this document that palliative sedation, like all interventions in palliative care, needs to be part of evidence-based practice. There are evidence-based clinical protocols based on a growing body of research that many clinicians are not aware of, but should be. Simply turning up current pain medications is not evidence-based sedation. We have a moral obligation to give our patients the best care possible, and this document is intended to help providers reflect on the nature of that obligation when it comes to the practice of palliative sedation."

The complete statement and commentary, as it appears in JPSM, is available at the NHPCO website (go to nhpco.org/newsroom and click on the link for NHPCO Ethical Statements and Position Statements).

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The Moran Data Project: Is your hospice participating?

The participation of all hospice providers across the country is needed for a very important project that has the potential to impact every provider in the U.S. I'm writing about the Moran Data Project.

For those not familiar with the project, last July, NHPCO retained The Moran Company (a healthcare research and consulting firm specializing in payment reform) to conduct our own data collection and assessment project on behalf of the hospice and palliative care field. This is in response to impending work on hospice reimbursement reform that is now required as a part of the new health care reform law and requires CMS to initiate hospice payment reform no earlier than 2014.

I would like to share the video message linked below:




For those unable to access the video, here is some additional information about the Moran Project.

The Moran Data Project

Through data collected and analyzed in the Moran Data Project, NHPCO will develop and present to CMS and MedPAC alternative Medicare hospice payment reform models that fairly reimburse us for the care we provide. This proactive approach allows us to exert some influence on the process rather than relying solely on government regulators and the data they can access. However, in order for our models to be sound, we must have comprehensive, patient-level data—and for that, we need the assistance of all hospice providers.

The data collection phase of this project began in February and there are now about 200 providers which are submitting data—but we need 800 more providers of all sizes, type and from all areas of the country to step up and contribute data.

By coming together to present to MedPAC and Congress comprehensive data from a unified hospice industry, we can help preserve our core values and our revenue streams. NHPCO will fight for this—but we can't do it alone. Working together to collect data, we can make our voices heard. Members can learn more online at nhpco.org/moran or contact Amanda Forys at The Moran Company at aaforys@themorancompany.com.

Thank you for your participation!

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NHPCO would like to thank the software vendors who are participating in this important data collection project:

• Allscripts
• Cerner BeyondNow
• Consolo Services Group
• Delta Health Technologies
• Homecare Homebase
• McKesson Corporation
• HPMS - Mills & Murphy Software Systems, Inc.
• mumms® Software
• Suncoast Solutions