New Pediatric Concurrent Care Report Emphasizes Need for Collaboration

Affordable Care Act Provision Expands Access to Pediatric Palliative Hospice Care

 Children living with life-limiting or life-threatening conditions and their families need the expertise that hospice and palliative care professionals can provide throughout the course of a serious illness.

 A pediatric-focused report, Pediatric Concurrent Care Briefing, has been released by the Mary J. Labyak Institute for Innovation, a program of the National Hospice and Palliative Care Organization based at the National Center for Care at the End of Life.

 It’s important to remember that the care provided to a child with serious illness is different from the care that we would give to an adult,” said J. Donald Schumacher, NHPCO president and CEO. NHPCO is the organization that created the Mary J. Labyak Institute for Innovation in 2012.

 Children aged 0-19 years accounted for 1.9 percent of all deaths in 2009. Slightly more than half of childhood deaths occur in infancy.

“While the numbers of children that die from each year from a serious illness in the U.S. are low, we have a responsibility to compassionately care for each of these children and their families,” Schumacher added.

 Effective management of pain and symptoms together with psychosocial and spiritual care that are sensitive to developmental, personal, cultural and religious values and practices are critically important. The need for such care begins at diagnosis and continues throughout the entire course of a child’s life and for their families beyond the child’s death.

 For many years, children facing such illnesses had few options for Medicaid coverage when children were very seriously ill. Parents in all but a few states were faced with forgoing curative treatments for their children to be eligible for hospices services – considered to be the gold standard for end-of-life care. The patient Protection and Affordable Care Act (ACA) changed that situation.

 Under the ACA all state Medicaid programs are required to pay for both curative and hospice services for children under age 21 who qualify. This is covered by a provision, Section 2302, termed the “Concurrent Care for Children” requirement.

 The Pediatric Concurrent Care Briefing shares examples from states that have implemented options to provide pediatric palliative and hospice care services and outlines eight implementation strategies that can help ensure that providers are serving the children and families in the community that may be in need of the unique services hospice and palliative care brings.

 The goal of the briefing is to foster the necessary collaboration among providers and advocates within each state to ensure that the most medically fragile children and their families have the quality care they deserve and desperately need.

 NHPCO encourages the formation of statewide pediatric palliative and hospice care advocacy coalitions to work towards improved options of care.

 This new report joins other materials created by NHPCO such as the Concurrent Care for Children Requirement: Implementation Toolkit and a series of seven online learning modules on Pediatric Palliative Hospice Care that will soon expand to a series of 10 modules. 

Download the Pediatric Concurrent Care Briefing (PDF) free of charge from the NHPCO website and learn more about available resources for pediatric palliative care at www.nhpco.org/pediatrics.

 

 

A Look Back at NewsLine Articles During 2012

NewsLine, NHPCO's digital publication for providers, features exceptional articles by hospice leaders and clinicians on a range of relevant topics—from “understanding geriatric frailty” to “crafting an effective elevator pitch.” The January issue of NewsLine includes a partial list of the features that appeared in 2012—with quick links to the actual articles.

NHPCO invites you to take a look, and download copies of any you may have missed or want to share.

35.7 Percent of Hospice Patients Die or Were Discharged within 7 Days

A record number of dying persons in the U.S. – an estimated 1.65 million patients – received care from the nation’s hospices in 2011, reports the National Hospice and Palliative Care Organization.
Approximately 44.6 percent of all deaths in the U.S. were under the care of a hospice program. This is up from 41.9 percent in 2010.

While there is an increase in the number of patients cared for, NHPCO reports that 35.7 percent died or were discharged within seven days of admission, up from 35.3 percent in 2010.

“We continue to see more dying Americans opting for hospice care at the end of their lives, yet far too many receive care for a week or less,” said J. Donald Schumacher, PsyD, NHPCO president and CEO. “We need to reach patients earlier in the course of their illness to ensure they receive the full benefits that hospice and palliative care can offer.”  

NHPCO’s annual publication, Facts and Figures: Hospice Care in America (PDF) reports on hospice trends and provides updated information on the growth, delivery, and quality of hospice care in the U.S.

Schumacher added, “In recent years regulators have been focused on long-length patients (11.4 percent received care for 180 or more days) and while it is understandable that they are interested in the long-length statistic, we should not overlook the fact that far too many people receive care for too short a time.”

Earlier access to hospice care can reduce emergency room visits and hospitalizations; additionally, quality of life for patients and family caregivers can be improved.
Research has shown that eight out of 10 Americans would prefer to be at home at the end of life, and hospice can make this happen.

NHPCO continues to stress the importance of having healthcare providers discuss hospice palliative care as an option for patients coping with a serious or life-limiting illness. Similarly, NHPCO encourages patients and family caregivers to ask their health care providers about the benefits hospice might offer.

“There’s a common misconception that hospice care is giving up,” said Schumacher. “Nothing could be farther from the truth. Hospice provides high quality medical care and services from an interdisciplinary team of professionals and trained volunteers that maximizes quality of life and makes the wishes of the patient a priority.”

Usage of hospice has doubled in the past decade due in part to providers learning to care for a wider range of patients with more complex diagnoses such as dementia, heart disease, lung disease and more. This growth reflects the expertise of hospice providers in caring for dying Americans who need quality end-of-life care, reports NHPCO.

Facts and Figures: Hospice Care in America (PDF) is available in the News Room section of NHPCO’s website, nhpco.org/newsroom.

Twelve Tips to Help a Grieving Loved One during the Holidays

The holidays are quickly approaching, and while many people look forward to yearly traditions, gatherings with family and friends and the general good feelings associated with the season, some people dread the holidays.

NHPCO offers twelve practical tips from hospice professionals:
1. Be supportive of the way the person chooses to handle the holidays. Some may wish to follow traditions; others may choose to change their rituals. Remember, there is no right way or wrong way to handle the holidays.
2. Offer to help the person with baking and/or cleaning. Both tasks can be overwhelming when someone is experiencing acute grief.
3. Offer to help him or her decorate for the holidays.
4. Offer to help with holiday shopping or give your loved one catalogs or suggest online shopping sites that may be helpful.
5. Help your loved one prepare and mail holiday cards.
6. Invite the person to attend a religious service with you and your family.
7. Invite your loved one to your home for the holidays.
8. Ask the person if he or she is interested in volunteering with you during the holiday season. Doing something for someone else, such as helping at soup kitchens or working with children, may help your loved one feel better about the holidays.
9. Donate a gift or money in memory of the person’s loved one. Remind the person that his or her special person is not forgotten.
10. Never tell someone that he or she should be “over it.”  Instead, give the person hope that, eventually, he or she will enjoy the holidays again.
11. If he or she wants to talk about the deceased loved one or feelings associated with the loss, LISTEN. Active listening from friends is an important step to helping him or her heal. Don’t worry about being conversational…. just listen.
12. Remind the person you are thinking of him or her and the loved one who died. Cards, phone calls and visits are great ways to stay in touch.
In general, the best way to help those who are grieving during the holidays is to let them know you care. They need to be remembered, and they need to know their loved ones are remembered, too.

More information about grief and loss is available from NHPCO’s Caring Connections at www.CaringInfo.org.

NHPCO Presents Awards Celebrating Hospice Palliative Care

The National Hospice and Palliative Care Organization bosted its 13th annual Clinical Team Conference and Pediatric Intensive this week in Orlando, Florida. More than 1,200 professionals gathered at the Walt Disney World Dolphin Hotel. Throughout the week, NHPCO presented a number of awards celebrating outstanding contributions to hospice and palliative care.

Distinguished Researcher Award
Holly G. Prigerson, PhD, was presented with the NHPCO Distinguished Researcher Award created to recognize an outstanding body of research that has contributed to the enhancement of hospice and palliative care.

Prigerson is internationally known for her work on bereavement and end-of-life care. She is Associate Professor of Psychiatry at Harvard Medical School and the Director of the Center for Psycho-Oncology and Palliative Care Research at the Dana-Farber Cancer Institute. Much of Prigerson’s research has been on psychosocial factors that influence the quality of life and care received by terminally ill patients, and factors influencing family caregivers both before and after the death of a loved one.  

Volunteers are the Foundation of Hospice Award
This award recognizes exemplary hospice volunteers in three categories of service: Patient/Family Support; Organizational Support; and Teen Service. The volunteers selected for this recognition best reflect the universal concept of volunteerism in its truest sense: Serving as an inspiration to others.
The 2012 award recipients and their specific areas of service:

• Chuck Mirasola, a volunteer with the Hospice and Palliative Care Unit at Florida’s Bay Pines VA for “Patient/Family Support.” He has given more than 12,500 hours of volunteer service to the Bay Pines VA, with eight years of service to patients and families on the Hospice and Palliative Care Unit.
• Richard W. Jett, Jr, CPA, a volunteer with Hospice of East Texas in Tyler for “Organizational Support.” He has been a volunteer for 30 consecutive years – without interruption of service to the hospice. This includes three terms as a board member and one term as board chair.
• Deanna Wright, a volunteer with Hospice and Palliative Care of Western Colorado in Grand Junction for “Teen Service.” She began her service with hospice at the age of 12 and has been a dedicated volunteer involved in many aspects of the organization for the past six years.

Advancing End-of-life Care Access Award
As part of its efforts to recognize the important work of caring for Veterans, NHPCO presented its inaugural Advancing End-of-life Care Access Award to VITAS Innovative Hospice Care of Dayton.

VITAS of Dayton began its Veterans initiative three and a half years ago to ensure that information about hospice is readily available to Veterans and their families that are facing serious and life-limiting illness. VITAS Innovative Hospice Care of Dayton is a Level IV Partner in the We Honor Veterans program – the highest level a hospice can attain.

“One of the most important things we can do is shine a light on individuals and organizations in the hospice palliative care community who are advancing the field of  hospice and palliative care,” said NHPCO President and CEO J. Donald Schumacher.

National Hospice Month Proclamation 2012

Hospice Palliative Care Offers: Comfort. Love. Respect.

As the nation’s oldest and largest leadership association representing hospice and palliative care providers and professionals, the National Hospice and Palliative Care Organization issues the following proclamation declaring November 2012 as National Hospice and Palliative Care Month.

WHEREAS, every year more than 1.58 million Americans living with life-limiting illness, and their families, receive care from the nation’s hospice programs in communities throughout the United States;

WHEREAS, hospice and palliative care offer the highest quality of care to patients and families and bring comfort, love and respect to all those they serve;

WHEREAS, hospice allows people to spend their final months surrounded by family and loved ones at home – wherever home may be;

WHEREAS,  hospice and palliative care professionals—including physicians, nurses, social workers, therapists, counselors, health aides, and clergy—providing comprehensive and compassionate care that make the wishes of each patient and family a priority;

WHEREAS, more than 468,000 trained volunteers contribute 21 million hours of service to hospice program annually;

WHEREAS, through pain management and symptom control, caregiver training and assistance, and emotional and spiritual support, patients are able to live as fully as possible through the journey at life’s end;

WHEREAS, the commitment of more than 1,600 hospice providers, NHPCO and the Department of Veterans Affairs have allowed the innovative program, We Honor Veterans, to thrive and ensure that Veterans find the compassion, care and dignity they deserve at the end of life;

WHEREAS, the provision of quality hospice and palliative care reaffirms our belief in the essential dignity of every person, regardless of age, health, or social status, and that every stage of human life deserves to be treated with the utmost respect and care;

NOW, THEREFORE, be it resolved that the leadership of the National Hospice and Palliative Care Organization do hereby proclaim November 2012 as National Hospice and Palliative Care Month and encourage all people to learn more about options of care and to share their wishes with family, loved ones, and their healthcare professionals.

 

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More information about hospice month is available at www.CaringInfo.org/hospicemonth.

 

NHPCO Members will find outreach materials online at www.nhpco.org/outreach.

 

Comfort, Love and Respect that Hospice Offers is Focus of November’s National Hospice and Palliative Care Month

“Comfort. Love. Respect.” 2012 Theme Inspired by Actress and Hospice Advocate Torrey DeVitto

 

Every year, more than 1.58 million people living with a life-limiting illness receive care from hospice palliative care providers in the U.S., reports the National Hospice and Palliative Care Organization. During National Hospice and Palliative Care Month this November, providers across the country are raising awareness of the many benefits of hospice palliative care.

More than traditional medical care

Hospice palliative care provides expert pain management, symptom control, emotional support, and spiritual care to patients and family caregivers when a cure is not possible. Care is provided by a highly trained team of professionals and volunteers.

Most hospice care in the U.S. is provided in the home – allowing people to be with their families and loved ones in comfortable surroundings at the end of life.

Research by NHPCO has found that 94 percent of families who had a loved one cared for by hospice rated the care as very good to excellent.

 Hospice makes sure that people receive comfort, love and respect during one of life’s most significant experiences – the journey at life’s end,” said J. Donald Schumacher,PsyD, president and CEO of NHPCO. “The compassionate way that hospice helps maximize the quality of life is at the center of this year’s hospice month theme.”

DeVitto creates theme

The 2012 outreach theme for National Hospice and Palliative Care Month, “Comfort. Love. Respect.” is based on the firsthand experience of actress and NHPCO Hospice Ambassador Torrey DeVitto who created the phrase for a t-shirt she designed for NHPCO and the National Hospice Foundation earlier this year.
 
DeVitto, widely recognized for her roles on the hit television series “The Vampire Diaries” and “Pretty Little Liars” has been a hospice volunteer for five years and became NHPCO’s ambassador in 2011.

“As a hospice volunteer myself, I’ve seen firsthand how dedicated individuals provide companionship, support, and a shoulder to lean on at a time when it’s needed most,” remarked DeVitto. “I’m working to help younger people understand the value of hospice and hopefully to get involved as volunteers with their local hospices.”

Information about hospice, palliative care, and advance care planning is available from NHPCO’s Caring Connections at www.caringinfo.org or by calling the HelpLine at 800-658-8898.

 

Resources for outreach

• NHPCO members will find materials for hospice and palliative care month at nhpco.org/outreach.
• Non-member organizations will find some hospice and palliative care month materials at CaringInfo.org/hospicemonth.

The “Comfort. Love. Respect.” t-shirt designed by Torrey DeVitto is available for purchase from the NHPCO Marketplace www.nhpco.org/Marketplace  or by calling 1-800-646-6460.  All proceeds from the t-shirt sales benefit national hospice outreach efforts.

 

Hospice Ambassador Torrey DeVitto.