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

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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Misinformation, Health Care Reform, and the Media

A Message from J. Donald Schumacher
August 14, 2009

Misinformation, Health Care Reform, and the Media

As many people know, NHPCO has been working actively to clarify misinformation among national and regional media regarding health care reform legislation. An important part of our outreach has been to correctly explain the advance care planning provision and stress the value of this benefit for all Americans.

NHPCO leadership have spoken with reporters and producers with all the major network news outlets, ABC, NBC, CBS, and CNN, as well as the Associated Press, Wall Street Journal, NY Times, Washington Post, and many others.

Some highlights include NHPCO's Kathy Brandt interview on National Public Radio's "Morning Edition" and Jon Keyserling’s interview on CNBC. NHPCO also provided information for the new feature that debuted on ABC Evening News with Charlie Gibson, "Fact Check," where the inaugural issue on this new segment was the misinformation about the advance care planning provision.

It's difficult to hear false and misleading statements in the media but rest assured that we are responding as effectively as possible. NHPCO offers some information that may be helpful. This includes:

• Talking Points on advance care planning and health care reform.
• NHPCO’s press release from August 7.
• NHPCO’s analysis about the advance care planning provision in the House’s bill.

NHPCO’s Caring Connections has some useful information about advance care planning that helps explain what it is, including a new piece that uses metaphor to explain the concepts:

• What is Advance Care Planning
• Healthcare Agents: Choosing One and Being One
• Preparing Your Advance Directives
• NEW - Are You Traveling without a Map? A layperson's guide to advance care planning (PDF)

There have been any number of excellent news reports, articles and op-eds that clarify the misinformation but those are often overshadowed by the conflict. Here are some links of interest that people may be interested in looking over:

• "Honest Talk About the End," Newsweek, by Eleanor Clift, 07/31/09.
• "Elderly Americans should read the health care bill: It won't kill them," Cleveland Plain Dealer, by Connie Schultz, 08/02/09.
• "Getting health care healthy: Accepting death outside the hospital," * Chicago Tribune, by Anne Moore, 08/05/09.
• "Health Care Reform: The Assault on Truth," AARP Bulletin Today, 08/14/09.
• “Here’s the truth, Granny,” Obit Magazine, by Judy Bachrach, 08/11/09.
• "Health Care: Will Section 1233 Hasten Patient Deaths?" American Center for Law & Justice (from Christianity Today), 08/11/09.
• "Three Myths about the Ethics of Health Care Reform," Association of Bioethics Program Directors.
• "Advance-directives section fueling concern and, hospice officials say, misunderstanding," Winston-Salem Journal, 08/13/09.
• “While others rant, hospice keeps helping,” Orlando Sentinel, 08/14/09.
• “Doctors Providing End-Of-Life Counseling See Benefit In Current Controversy,” Kaiser Health News, 08/14/09.


At NHPCO, we will continue to do our best to provide accurate information that we hope will help Americans understand the value of advance care planning.

The importance of patient wishes have always been integral to the hospice philosophy of care and we understand why the provision in the House bill would only serve to benefit Americans. We also understand how complicated and challenging issues surrounding death and dying are for many people. And when faced with what seems like sweeping change in health care reform discussions, it is understandable that many people are passionate—and frightened. Yet, I have faith that in the days ahead, the truth about caring for people at the end of life and the importance of advance care planning will begin to spread where there has been misinformation and false accusation.

To cite our outreach materials, hospice and palliative care are about how you live. Making one’s wishes know is an important part of life’s journey.

I encourage all hospice and palliative care providers to continue with the important work they do to help patients and families and their broad communities. I am proud to be working with such a dedicated community—all those providing hospice and palliative care.

Thank you.

J. Donald Schumacher
President and CEO


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