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

May 2010 Palliative Care Grand Rounds

The May edition of Palliative Care Grand Rounds for 2010, a "monthly blog carnival" highlighting blog post related to hospice and palliative care, is up at the Medical Futility blog ran by Thaddeus Pope. Check it out today!

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

Don's 2010 May Update

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