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