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HOSPICE NEWS NETWORK
What the Media Said about End-of-Life Care This Week
Volume 13, Number 17 April 28, 2009
A Service of State Hospice Organizations
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NHPCO RELEASES NEW PEDIATRIC STANDARDS OF CARE
At the opening plenary session of NHPCO’s Management and Leadership Conference, the organization released its first set of pediatric palliative care and hospice care practice standards. The Standards of Practice for Pediatric Palliative Care and Hospice was jointly developed by NHPCO and the Children’s Project for Palliative/Hospice Services. The goal of the standards is to help “hospice and palliative care providers develop safe, effective, and high-quality programming for children and their families facing serious and life-limiting illness.”
The pediatric standards differentiate care for children and adults by pointing out several differences between them: 1) Children’s developmental stages present challenges to those not trained specifically to work with them; 2) It is difficult to predict the future of children with rare medical conditions; 3) Children with serious illnesses often must travel long distances for treatment, resulting in fragmented care, distance from normal sources of support, and additional strains on the family; 4) Adults can legally speak for themselves, but children cannot; 5) “Broader social, economic and cultural problems” often surround many “shortcomings in end-of-life care”; 6) The death of a child has “devastating, long-term implications for the entire family and extended community.”
Several diagnostic categories are listed to help identify children for whom palliative care and hospice may be an option:
* “Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be beneficial alongside attempts at life prolonging treatment and/or if treatment fails,” such as cancer with a poor prognosis, severe heart disease, or trauma.
* Life-limiting conditions “where early death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life, allowing participation in normal activities, and maintaining quality of life,” such as cystic fibrosis, HIV infection, kidney failure where no transplant is possible, or immunodeficiencies.
* “Progressive conditions without curative treatment options, where treatment is exclusively palliative after diagnosis and may extend over many years,” such as Tay-Sachs disease, Batten disease, or some types of osteogenesis imperfecta.
“Irreversible but non-progressive conditions with complex healthcare needs leading to complications and likelihood of premature death,” like severe cerebral palsy, severe pulmonary disability, disabilities following damage to the brain, or brain malformations.
The standards are organized around the ten components of the Quality Partners (See www.nhpco.org/quality for more information). For each of the components, a principle is listed, then one or more standards, most with one or more items under each. Each component ends with practice examples. The components are as follows:
* Patient and Family Centered Care,
* Ethical Behavior and Consumer Rights,
* Clinical Excellence and Safety,
* Inclusion and Access,
* Organizational Excellence,
* Workforce Excellence,
* Standards,
* Compliance with Laws and Regulations,
* Stewardship and Accountability, and
* Performance Measurement.
HNN space does not permit even a summary of each of the components, but here is an example from the Pediatric Palliative Care Patient and Family Centered Care (PPC-PFC) component:
* Principle: “The palliative care and/or hospice interdisciplinary team provides family centered care that includes the child and family as one unit of care, respecting individual preferences, values, and cultural beliefs, with the child and family active in decision making regarding goals and plan of care.”
* PPC-PFC 1 (There are two standards): “The goals of the child and family are foremost at the center of all services provided.”
* PPC-PFC 1.1 (There are six items under the first standard): “Services should be available to all children and families who are referred, regardless of their financial or health insurance status.”
* Practice Example (There are four examples): “A 5 year-old child is diagnosed with stage IV neuroblastoma. Although the child will be undergoing surgery and starting chemotherapy, the palliative care team is called and is introduced to the family by the oncologist as a resource for support when the child will be ready to go home. The social worker from the palliative care team collaborates with the oncology team, and frequently makes visits while the child is in the hospital to build relationships prior to discharge home.”
The Standards booklet emphasizes that it is not a standalone publication, but is “a pediatric-specific appendix to the existing NHPCO Standards of Practice for Hospice Programs.” Readers are referred to www.nhpco.org/quality for more information on the Standards of Practice. NHPCO members may download the Standards booklet from www.nhpco.org/pediatrics. Others may purchase them from the NHPCO Marketplace at www.nhpco.org, or call 800-646-6460.
Complementing the release of the standards, NHPCO also announced the release of NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. The aim of Facts and Figures is to “describe the current state of pediatric palliative and/or hospice care in the United States; to identify children who may be in need of pediatric palliative and hospice care support in order to help programs determine which children might benefit most from available services and guide program outreach and design; and to identify gaps in service provision in order to help guide interventions to address those gaps.”
The Facts and Figures booklet repeats some of the information from the Standards booklet, but goes into more detail on several points. The authors note that assembling exact statistics on pediatric palliative and hospice care is difficult. Age ranges differ for differing kinds of epidemiological data, and most epidemiological data is focused on children who die, or have complex chronic conditions, or special healthcare needs. Palliative and hospice care programs describe diseases as life-limiting or life-threatening, and the overlap between those categories is not well-defined.
Facts and Figures, which is available to all for download from nhpco.org/pediatrics, has statistics on number of deaths, causes and locations of death, and information on pediatric palliative care and hospice programs.
* In 2005, children aged 0-19 years accounted for 2.2% of all deaths. In 1900, 30% of all deaths occurred in children under five years of age. Just over half of all childhood deaths occur in infancy.
* The leading causes of infant death include congenital malformations (19.5%), and complications of short gestation and low birth weight (16.5%). Other causes include SIDS (7.4%), maternal complications (6.3%), complications of the placenta, membranes or cords (4%), and accidents or unintended injury (4%).
* The causes of death of all children aged 1-19 include, in order, accidents, assault, malignancy, suicide, congenital abnormalities, chromosomal abnormalities, heart disease, and cerebrovascular diseases.
* In addition to children with terminal illnesses, children with life-threatening conditions and chronic complex conditions can benefit greatly from palliative care and hospice programs.
* Most children die in hospitals, and most of those in an ICU. Black and Hispanic children are even more likely than white children to die in hospitals, as are children in the northeastern part of the US.
* Data from a 2007 NHPCO survey shows that 78% of hospices have pediatric patients, and just over a third have a formal pediatric program. Hospices which provide pediatric services usually have between 1 and 20 patients per year, while palliative care services generally see 0 to 10 patients per year. (Standards of Practice for Pediatric Palliative Care and Hospice; Pediatric Palliative and Hospice Care in America)
PUBLIC POLICY NOTES
* Last week, CMS proposed a rule that would reduce hospice payments by 1.1% in fiscal year 2010. The budget neutrality adjustment factor (BNAF), originally a temporary measure designed to “make hospice payments more accurate,” was to be reduced this year, but the American Recovery and Investment Act delayed any action until next year. Seventy-five percent of the adjustment will be eliminated next year, and the rest phased out in 2011. (McKnight’s Long-Term Care News, 4/23)
* Beginning in 2010, physicians will have to write a “short narrative” about a patient’s condition as a requirement for certification or recertification for the Medicare hospice benefit. The article cites CMS concerns over the increasing number of patients who survive longer than six months in hospice. (MedPage Today, 4/22)
* Michigan began allowing registration for medical marijuana on April 4. Seven hundred people have applied, and about 150 cards have been issued. Dr. William Morrone, director of hospice and palliative care at Hospice of Michigan, urged caution. Speaking to a group of doctors and medical residents, he said, “We have to say that sucking a burning weed into your throat isn't the optimal drug delivery system. … There is nothing in marijuana that is not available in other medications. There is a high risk for diversion and abuse. And it is smoke, which studies have shown has more dangerous chemicals than tobacco.” Morrone says he isn’t against medical marijuana, but thinks if it is going to be used, it should be by monthly prescription and under physicians’ evaluation and control. (The Saginaw News, 4/24)
PAIN AND PALLIATIVE CARE NOTES
* David R. Brushwood, professor at the University of Florida College of Pharmacy, says, “There is hardly any risk of liability for malpractice based on the failure to provide patients with adequate pain relief, despite almost universal recognition that standards of practice require the provision of adequate pain relief. … Two highly respected scholars in the field of pain management and legal liability have both concluded that the principles of liability could support malpractice by a physician who undertreats pain, but neither expert could reference a single reported precedential legal opinion in which liability under such circumstances has actually been recognized.” Brushwood says that “strong defenses” for physicians that undertreat pain include “federal and state laws that emphasize the need to avoid pain management when it is inappropriate and prevent drug diversion at all costs and which de-emphasize the need to provide pain management when it is appropriate.” (Medscape Today, 4/24)
* A study from the University of Nevada in Reno reports that many terminally ill veterans don’t understand their hospice and palliative care benefits, “or the nature of their own illness.” The team interviewed 17 patients. Five did not “know or understand their diagnosis,” and 10 didn’t realize they were terminally ill. Eleven knew what a DNR order was, but only four knew about and had an advanced directive. The lead researcher, Dr. Alice Running, said, “It is necessary that this very important aspect of care, education about palliative care, hospice, comfort care and advanced directives begin in primary care clinics, before individuals find themselves in acute care with so many unknowns. Providers need to educate patients and their families in these terms well before families will need to use them.” (Reuters Health, 4/17)
* A study of physicians at New York Presbyterian Hospital found that whether or not they referred patients to the palliative care consultation service, most “reported high levels of involvement in and comfort managing many symptoms that occur commonly in patients with advanced disease, but were less comfortable managing delirium and patients' psychosocial and existential needs.” The most frequently cited barrier to palliative care referral was “the patient and/or family's perceived unrealistic expectations regarding disease prognosis (70%).” “Nonreferring (versus referring) physicians were significantly more likely to disagree with the statement that a palliative care specialist is the best person to coordinate the palliative care of patients with advanced disease (29% versus 8%). (Hospital Business Week, 4/19)
* A study from the Medical College of Wisconsin identified the top five “triggers” for a palliative care consultation for patients in a surgical ICU: “family request; futility considered or declared by the medical team; family disagreement with the medical team, the patient's advance directive, or each other lasting >7 days; death expected during the same SICU stay; and SICU stay > month.” The article, which was published in Critical Care Medicine, has a “set of consensus guidelines derived from expert opinion that identifies critically ill surgical patients who would benefit from palliative care consultation.” (Law & Health Weekly, 4/18; Critical Care Medicine, 2009;37:946-950)
OTHER NOTES
* An editorial in Minnesota’s Hutchinson Leader urges readers to prepare end-of-life papers detailing what they want to have happen, and to talk to their families about them. The author notes that, since 1998, Minnesota has allowed residents to use one form, the health care directive, for all health care instructions. Older documents, such as living wills and durable health care powers of attorney, are still legal if they followed the law at the time they were written. The Department of Health has a website with questions and answers at www.health.state.mn.us/divs/fpc/profinfo//advdir.htm. (The Hutchinson Leader Website, 4/23)
* Final Conversations: Helping the Living and the Dying Talk to Each Other, by Maureen P. Keeley and Julie M. Yingling, is reviewed in the Journal of Palliative Care. The reviewer cites three chapters as particularly useful to hospice and palliative care practitioners: chapter five dealing with non-verbal communication, chapter six dealing with damaged relationships, and chapter nine dealing with having a final conversation. The book is “rich in stories and well organized in its messages,” but 89% of the participants are “well-educated Caucasians.” (Journal of Palliative Care, 2009;25(1):77)
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