First Ever Global Atlas Identifies Unmet Need for Palliative Care

Only 1 in 10 people who need palliative care - that is medical care to relieve the pain, symptoms and stress of serious illness - is currently receiving it. This unmet need is mapped for the first time in the Global Atlas of Palliative Care at the End of Life, published jointly by the World Health Organization (WHO) and the Worldwide Palliative Care Alliance (WPCA).

 

Palliative care is more than just pain relief. It includes addressing the physical, psychosocial and emotional suffering of patients with serious advanced illnesses and supporting family members providing care to a loved one.

 

About one third of those needing palliative care suffer from cancer. Others have progressive illnesses affecting their heart, lung, liver, kidney, brain, or chronic, life-threatening diseases including HIV and drug-resistant tuberculosis.

 

It is estimated that every year more than 20 million patients need palliative care at the end of life. Some 6% of these are children. The number of people requiring this care rises to at least 40 million if all those that could benefit from palliative care at an earlier stage of their illness are included. Hospice and palliative care often encompasses some support to family members, which would more than double care needs.

 

In 2011, approximately 3 million patients received palliative care, the vast majority at the end of their life. Although most palliative care is provided in high-income countries, almost 80% of the global need for palliative care is in low- and middle-income countries. Only 20 countries worldwide have palliative care well integrated into their healthcare systems[1].

 

“The Atlas shows that the great majority of the global need of end-of-life care is associated with noncommunicable diseases such as cancer, heart disease, stroke and lung diseases,” says Dr Oleg Chestnov, WHO Assistant Director-General for Noncommunicable Diseases and Mental Health. “While we strengthen efforts to reduce the burden of the biggest killers in the world today, we must also alleviate the suffering of those with progressive illness who do not respond to curative treatment.”

 

The Atlas calls on all countries to include palliative care as an essential component to every modern healthcare system in their moves towards universal health coverage. This means addressing barriers such as:

1) lack of policies recognizing palliative care and the need for care both at the end of life and during progressive illnesses;

2) lack of resources to implement services, including access to essential medicines, especially pain relievers;

3) lack of knowledge of health care professionals, community volunteers and members of the public about the benefits of palliative care.

“Our efforts to expand palliative care need to focus on bringing relief of suffering and the benefits of palliative care to those with the least resources,” adds David Praill, Co-Chair of the WPCA. “This will take courage and creativity as we learn from each other how to integrate palliative care into existing but very limited healthcare systems.”

Last week, the Executive Board of WHO called on countries to strengthen palliative care and to integrate it into their healthcare systems. It is expected that the 67th World Health Assembly will discuss the subject in May 2014.

The importance of palliative care is being emphasized by the WHO Global Action Plan for the Prevention and Control of Noncommunicable Diseases 2013–2020 and the most recent WHO essential medicines list that includes a specific section on medicines for palliative care.

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Download the Global Atlas for Palliative Care at the End of Life (PDF); or visit the WPCA website at http://www.thewpca.org/resources

Global Action Plan for the Prevention and Control of NCDs 2013-2020: http://www.who.int/nmh/events/ncd_action_plan/en/

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[1] Australia, Austria, Belgium, Canada, France, Germany, Hong Kong Special Administrative Region, Iceland, Ireland, Italy, Japan, Norway, Poland, Romania, Singapore, Sweden, Switzerland, Uganda, United Kingdom, United States of America

 

 

Congress Supports Hospice Community Regarding Part D issues.

Yesterday (12/16/13), Congressmen Tom Reed and Mike Thompson sent a letter to Marilyn Tavenner, the Director of the Centers for Medicare and Medicaid Services (CMS). The letter urged CMS to slow down on their recent initiatives regarding Part D and hospice (read this letter online).

This is a direct result of the Hospice Advocacy from the our provider community. The letter contained signatures from 42 Members of Congress from the House of Representatives. Of those 42, two were physicians, and most notably 14 were on the House Ways & Means Committee.

Why does this matter? The Ways & Means Committee has jurisdiction over Medicare issues, including hospice. Ways & Means members can be reluctant to sign on to letters of this nature, but your grassroots relationships coupled with the seriousness of the issues surrounding hospice and Part D were enough to overcome that/ Congratulations are in order for the entire hospice community.

What happens next? The hospice community has now very publicly weighed in on this issue, and (with your help) so has Congress. CMS is currently accepting comments on their draft memorandum through January 6, 2014. NHPCO is collecting case studies of how this guidance would affect hospices. If you are an NHPCO member, please submit comments to regulatory@nhpco.org.

NHPCO and its affiliate organization, the Hospice Action Network, is monitoring several year-end issues here in DC including the ‘SGR’ packages, the budget agreement, and this Part D issue, among others.

Our  work as the voice of hospice on Capitol Hill will continue, and we - along with Hospice Advocates and our supporters - will keep fighting for increased access to hospice care in the United States.

2014 Innovation Forum: Discuss challenges and solutions with EOL peers!

NHPCO's 2014 Innovation Forum is a special event being held in Miami on January 21-23, 2014 that will allow participants to discuss challenges in the field, look at issues of relevance and explore possible solutions and practical models.  The intimage nature of the forum will allow a lot of discussion and networking with other participants.

Also, it's an ideal time to escape the winter weather and enjoy the Florida sun while networking with professional colleagues and discussing end of life care.

You now have until December 15 to register for the Innovation Forum at the early-bird registration rate.

Featured speakers include:  John R. Brandt; Nicholas A. Christakis, MD, PhD, MPH; Joe Flower; Donald Schumacher, PsyD; and William H. Thomas, MD.

Learn more about the Innovation Forum: http://www.nhpco.org/education/2014-innovation-forum

Growing Minority of Americans Say Doctors Should Do Everything Possible to Keep Patients Alive - Pew Research Reports

At a time of national debate over health care costs and insurance, a Pew Research Center survey on end-of-life decisions finds most Americans say there are some circumstances in which doctors and nurses should allow a patient to die. At the same time, however, a growing minority says that medical professionals should do everything possible to save a patient’s life in all circumstances.

The information release by PEW Research looks at a wide range of issues including Physician Assisted Suicide, patient self-determination and the impact religion can play on end-of-life choices.

Learn more: http://www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/

New Showtime Documentary "TIME OF DEATH"

TIME OF DEATH debuts on Showtime, Friday November 1 at 9:00pm ET/PT. It shares stories of real people face to face with their own mortality.

What are the final weeks, days and very moments of life really like? TIME OF DEATH offers an unflinching, intimate look at remarkable people facing their own mortality. Cameras follow these brave, terminally ill individuals as they live out the end of their lives, supported by family, friends, and dedicated healthcare and hospice workers who gently guide the process.

This groundbreaking documentary series provides a tangible, hopeful reminder of the finite nature of our time here on earth.

Learn more at http://www.sho.com/sho/time-of-death/home.

There Is Treatment: What Chronic Pain Sufferers Need To Know

An Op-ed by J. Donald Schumacher, PsyD

Today and every day, 56 million Americans try to get by in a condition of chronic pain. That's more than one of every five adults.

Yet in many cases, their suffering is undue. Those with chronic pain often do not receive medication or treatment that could safely alleviate their pain.

The simple truth is that pain can be relieved in most cases. Afflicted patients and their families should insist that their healthcare providers control and treat their pain accordingly.

The vast majority of those with chronic pain are not terminally ill. Some suffer from severe back or neck pain or from debilitating migraines. Others may have arthritis, multiple sclerosis, fibromyalgia, shingles, or nerve damage.

The afflicted are of all ages. Those most affected by chronic lower back pain, for instance, are typically between 30 and 50 years old.

And chronic pain isn't just physical. Patients also have to grapple with feelings of despair and isolation.

Despite the scope of the pain epidemic, many doctors are wary of dispensing medication because they fear that patients will become addicted. Some point to the fact that one in five Americans reports misusing a prescription drug at least once in his or her lifetime.

But their fears are overblown. Just 4.5 percent of those without a predisposition toward alcohol or drug addiction who were prescribed painkillers developed a dependency.

Doctors also tend to look at pain as a symptom of an underlying problem -- thinking that if they can find and treat that problem, the pain will go away.

But according to a recent report from the Institute of Medicine, chronic pain itself can be the problem. Such pain can cause changes in the nervous system that worsen over time -- even after the original source of the pain has gone away.

Because many doctors are not properly trained in the study of chronic pain, patients often suffer unnecessarily. One study of nursing home residents with chronic pain found that 44 percent were not getting any treatment at all.

In some cases, the need for pain treatment may not be obvious. Older patients, especially those with dementia, often struggle to communicate their needs.

Yet according to a report from the Hartford Institute of Geriatric Nursing at New York University, the burden to communicate with patients who may be in pain does not rest with the patients. Clinicians must take on that duty. They can do so by learning to identify non-verbal behaviors, such as "agitation, restlessness, aggression, and combativeness," which "are often an expression of unmet needs."

Old age must not become an excuse for the failure to pursue effective treatment for pain.

Of course, patients must assume some responsibility for treating their pain, too. Approximately 50 percent of patients do not take their medication as prescribed. Many mistakenly wait for pain to recur before administering another dose. Such on-again, off-again treatment just results in cycles of pain -- rather than preventing it altogether by maintaining adequate levels of medication in the bloodstream.

Patients should also educate themselves about available treatment options and the risks of possible drug interactions. And they must talk candidly with their doctors about their needs and the effects of the treatment they are receiving. Too often, patients settle for a little bit of pain relief when more is possible.

Patients who are not getting adequate relief should ask their doctors about palliative care or availability of pain clinics, where specialists may be able to suggest more effective treatment options. Many patients have benefited from keeping a pain diary to which they and their doctors can refer when devising a treatment regimen.

Whatever the condition causing the pain, the person best equipped to take the lead in finding the proper treatment is the sufferer. People know their own bodies, and they can judge when medications are inducing unwanted side-effects.

No one deserves to be incapacitated by chronic pain. The means to alleviate it are available. All that's required is the will to find the right treatment.

J. Donald Schumacher is President and CEO of the National Hospice and Palliative Care Organization.

Nominations Now Open for REAL Awards

The REAL Awards is a first-of-its kind awards platform that honors frontline healthcare workers who are providing life-saving care around the world.

Created by Save the Children and the Frontline Health Workers Coalition, the goal of the Awards
is to demonstrate the universal and urgent need for more trained workers since, by some estimates, the world is short more than 5 million!

While the award categories change from year to year, hospice care was a featured category in 2012
— and Carri Butcher from Hospice of the Ozarks was honored.

Nominations are now being accepted for the 2013 Awards. As a proud supporter, NHPCO encourages all members to take a closer look and consider making a nomination in the hospice category.  Please note: The deadline for submissions is coming up - it's October 25, so act fast!

Visit: http://therealawards.com/.