Palliative Care
2008 AHA Circle of Life AwardsThis year’s three winners understand that palliative care takes an entire team that can respond to whatever the patient—and the family—needs
As health care organizations become more sophisticated in providing the most effective palliative and end-of-life care possible, those on the leading edge are reaching out and offering help to smaller providers and even competitors in their communities. The winners of the 2008 Circle of Life awards represent this kind of unselfish outreach in the spirit of providing access to as many people as possible. It’s happening in Philadelphia, where a children’s hospital helps hospices in five states provide 24-hour support for the care of sick and dying children and teens; in Florida, where a hospice builds relationships with underserved communities; and in Minneapolis, where a children’s hospital serves as a resource throughout the upper Midwest.
Winner
Children’s Hospitals & Clinics
Minneapolis
The palliative care program at Children’s Hospitals & Clinics recognizes that a child’s life-threatening illness is a hardship for the entire family; therefore, a permanent team of caregivers guides the child through the health system so the family doesn’t have to make major adjustments each step of the way.
A lead nurse follows a child’s care from the hospital to a rehabilitation facility to home to outpatient clinic. The nurse is there to ensure continuity, even if it’s at a clinic not related to Children’s Hospitals. Families are also assigned a social worker who can follow them over time and works with the lead nurse to coordinate care, provide supportive counseling and help identify family needs. The team also includes a child life specialist, chaplain, psychologist, specialist pediatricians and volunteers.
“A lot of times it might be easy to think, ‘I’m a palliative home care nurse and the child is in the hospital, so he’s not mine,’ ” explains Jody Chrastek, coordinator of the Pain and Palliative Care Program. “But since the child is the center of the care we provide, we are aiming to follow them wherever they are.”
Members of the team work unobtrusively both in the hospital setting and elsewhere to ensure its pain and palliative care services are accessed by every child who needs them.
The program has evolved over the years as its leaders listened carefully to what patients and their families need. Families want their child seen as a whole person, not a disease to be fixed, says Medical Director Stefan Friedrichsdorf, M.D. They also need help navigating the health care system. “They don’t have time to be Mom and Dad, and they regret this later,” he says. The lead nurse helps with logistical and financial issues.
The program offers free consultations to adult hospices throughout the region that need help treating a baby, child or teen seeking hospice care in his or her own community. Children’s will e-mail information, go over it by phone and provide 24-hour expert phone backup.
Both in the hospital and out, the team’s culture is cooperative and generous. “We come in and say, ‘How can we help?’ ” says Chrastek. “That’s what palliative care is all about.”
Winner
Haven Hospice
Gainesville, Fla.
Haven Hospice maintains the human touch even while serving a large, spread-out population in a systematic and evidence-based way.
The organization carries out the balancing act in part by being an integral part of the rural communities that make up much of its north Florida service area; it recruits local people as volunteers and hires staff who live in the communities. Each of the hospice’s five offices operates on its own, with its own chief operating officer and a fair amount of autonomy.
Haven Hospice covers 16 counties, providing care to more than 3,800 patients and families each year, averaging 650 patients each day.
Along with providing home-based hospice care, Haven maintains four freestanding hospice care centers and two designated inpatient units and has strong ties with a long-term care home. “We have consistently looked to develop programs or interventions that help folks access hospice and palliative care,” says Executive Director Tim Bowen. “Relationships in the community are absolutely necessary to do that.”
The organization, in operation since 1979, has found other innovative ways to expand access to end-of-life and palliative care, focusing in particular on underserved ethnic populations.
Haven has built relations with the Jacksonville African-American community, starting with the African-American Chamber of Commerce. It has also reached out to a growing Hispanic community through Spanish-language media. The approach is to gently introduce the idea of hospice to communities where it has not been accepted as quickly as others.
Internal quality improvement is a high priority for Haven. The organization carries out monthly audits on various aspects of care, such as infections and whether they are acquired while on hospice care. These audits cover all parts of the organization, including clinical work, patient safety and human resources. The quality- improvement committee meets monthly to work out solutions. QI staff work with patient care nurses to give them immediate feedback on audit results, making sure the process is not punitive.
The organization’s quality-improvement efforts grabbed the attention of CMS officials, who are using Haven’s outcomes measures to develop reporting standards for all hospices.
Winner
Children’s Hospital of Philadelphia
Philadelphia
With their status within a major children’s treatment and research center, Children’s Hospital of Philadelphia leaders say they have an obligation to develop innovative methods to care for sick children.
One way they’ve done that is by building one of the most comprehensive palliative care teams around—17 medical professionals work full time for the team, whose physician members include specialists such as a neonatologist, a pulmonologist and a neurologist. A complete psychosocial component includes art therapy, bereavement, psychology and child life, along with the typical chaplaincy and social work.
“These are not just people volunteering but full members of the team … who have an expertise in a particular disease,” says team medical director Tammy Kang, M.D. “That ‘from within’ approach has helped us expand our ability to do educational consults.” These specialists are also able to foresee the palliative care needs of their patients earlier in their illnesses.
The hospital’s approach to palliative care extends well beyond the child and recognizes the larger community that cares about a child’s welfare: parents, siblings, grandparents, extended family, friends, school and religious communities. The team offers emotional support, bereavement and educational opportunities, as appropriate, to that wide range of people.
The expansive approach to palliative care also extends to hospice and home health agencies in the region. The Partners in Pediatric Palliative Care program extends CHOP support to agencies in Pennsylvania, Delaware and New Jersey and has included New York and Maryland.
Meanwhile, the organization’s considerable research resources are being put toward strengthening the evidence basis for what palliative care does. “It’s really important to cast a light on everything we think we know, and what we clearly don’t know,” says Chris Feudtner, a physician and researcher at CHOP. His team is working on a variety of palliative care aspects, including a quality-measurement tool assessing care received by children and a multiple-site study of pediatric palliative care teams.
Some of his most intriguing current work explores how parents make medical care decisions for their children. The study, funded by the National Institutes of Health, involves in-depth interviews with parents and physicians in an effort to quantify the concept of support, teasing out the cognitive and emotional parts of decision-making. The question, Feudtner says, is “What does it mean to support somebody?”—Jan Greene is a freelance writer in Alameda, Calif.
Citations of Honor
Kaiser Permanente I Oakland, Calif.
One of the nation’s largest integrated provider and health plan organizations implements palliative and end-of-life programs based on its own research.
LifePath Hospice and Palliative Care I Temple Terrace, Fla.
A large, established program that emphasizes evidence-based care, innovative programs and a strong education component for its employees and the community.
Providence Hospital I Washington, D.C.
A hospital-based palliative care program that meets the social, economic and medical needs of its inner-city population.
Rice Hospice I Willmar, Minn.
This hospice, based at Rice Memorial Hospital, has set up satellite operations in seven rural communities.
Sentara Healthcare I Norfolk, Va.
This large regional organization uses sophisticated analysis to study palliative care’s effectiveness as it spreads the service throughout its system.
University of Alabama/VA Center for Palliative Care I Birmingham, Ala.
Unique collaboration between a university hospital and VA medical center to research and innovate palliative care.
About the Award
The AHA Circle of Life Award honors innovative programs in palliative and end-of-life care. The award is supported in part by the California Healthcare Foundation, based in Oakland. Major sponsors of the 2008 award are AARP, the American Association of Homes and Services for the Aging, the American Hospital Association, the Catholic Health Association, and the National Hospice and Palliative Care Organization & National Hospice Foundation. The Center for Practical Bioethics is an award co-sponsor. For more information, visit www.aha.org.
This article 1st appeared in the August 2008 issue of HHN Magazine.
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