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Service Delivery Innovation Profile

Culturally Competent Palliative Care Supports African-American Patients and FamiliesĀ in Dealing With End-of-Life Issues


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Snapshot

Summary

Providence Hospital's palliative care service provides culturally sensitive end-of-life education and care to patients and their families (including appropriate pain and medical management, emotional support to families and caregivers before and after death, and accurate information about palliative care) and educates medical residents on how to provide such care to dying patients. This care takes into account the cultural concerns and preferences of Providence Hospital's largely African-American patient population. Although the impact of the program has not been formally measured, qualitative surveys and anecdotal reports suggest that both physicians and families are highly satisfied.

Evidence Rating (What is this?)

Suggestive: No formal studies of the program's impact have been conducted; evidence consists of qualitative, post-implementation survey data and anecdotal reports.
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Developing Organizations

Providence Hospital
Washington, DCend do

Date First Implemented

1987
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Patient Population

Race and Ethnicity > Black or african american; Vulnerable Populations > Racial minorities; Terminally illend pp

Problem Addressed

African Americans often do not seek or receive end-of-life care, even though palliative and hospice care can improve dying patients' quality of life. Many African Americans have misperceptions related to palliative and hospice care, or have cultural and religious values that are not addressed by most end-of-life care programs.
  • African Americans unlikely to receive end-of-life care: Statistics from the National Hospice and Palliative Care Organization indicate that in 2007, African Americans represented 9 percent of patients receiving hospice care, compared to 81.3 percent of Whites.1
  • Due in part to lack of information and cultural sensitivity: A 2006 study found that African Americans have misconceptions about hospice care, including that such care is inadequate; that hospice patients die lonely, painful deaths; and that hospice care is very costly.2 In addition, most existing hospice and palliative care services represent the cultural and religious values of the White middle-class population, which emphasizes accepting and planning for death. By contrast, African-American culture emphasizes living and prolonging life by using aggressive life-sustaining treatments, even in cases of severe disability.2 In fact, a study conducted at Duke University found that African-American hospice patients were 70 percent more likely to leave hospice care to pursue life-prolonging therapies than were White patients.3 Programs that can provide culturally sensitive education are more likely to help African-American patients and families make end-of-life care decisions.

What They Did

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Description of the Innovative Activity

Providence Hospital's palliative care service provides culturally sensitive end-of-life education and care to patients and their families and educates medical residents on how to provide such care to dying patients. Key elements of the program, all of which incorporate culturally sensitive messages and message delivery, include the following:
  • Multiple sources to order palliative care: Although a physician's order is required before palliative care staff can work with a patient/family, various individuals—including pastoral care staff, social workers, home hospice workers, and family members—can request or suggest a palliative care order. Individuals may also directly contact the palliative care team, who, in turn, contact the physician to request an order.
  • Incorporation of end-of-life care into care plans: Palliative care staff provide education directly to patients and families, explore end-of-life wishes (e.g., desired medical interventions, desire to remain at home, spiritual needs), and incorporate these wishes into the patient's care plan. For example, in 2010, the program began offering CD players and spiritual or relaxing CDs to patients for music therapy. The palliative care team works with patients who have a relatively long (1 to 2 years) life expectancy as well as those who are expected to die shortly.
  • Education for medical residents: The palliative care program sponsors several initiatives to educate medical residents about how to discuss death and dying in a culturally sensitive way with patients and families, and how to provide culturally appropriate end-of-life care. Initiatives include:
    • Palliative care grand rounds: In 1998, the palliative care service began holding a quarterly grand rounds presentation. Each quarter, the palliative care service identifies a patient for whom end-of-life care is being provided; palliative care staff work closely with the resident caring for that patient, helping to create a case report to be presented to other residents and attending physicians. Topics covered include cultural sensitivity, the psychosocial needs of the patient and family at the end of life, and appropriate medical management.
    • "Breaking Bad News" educational series: This educational series, developed in 2004, consists of four weekly 1-hour sessions provided to internal medicine residents each September. Palliative care staff and hospice physicians educate residents about the patient/family perspective in receiving bad news, and teach residents "soft skills" (e.g., attending to the patient's spirituality, culture, and psychosocial needs) that can be used to discuss appropriate medical care. Residents role play different communication scenarios, with these scenarios being videotaped so they can be viewed later and residents offered feedback and suggestions for improvement.
  • Caregiver support group: The director of palliative care services conducts a support group for caregivers at two different senior centers in the Providence Hospital community; five 1-hour sessions are held every other month over a 10-month period. The goal is to provide information about end-of-life topics, promote discussion among family members in advance of a health care crisis, and foster acceptance of death and dying via counseling and support. In addition, providing caregiver support helps keep end-of-life patients in the home, which is a culturally appropriate solution in the African-American community. Although topics are geared toward caregiving, they also prompt the caregiver to think about his or her own end-of-life wishes. The five sessions cover the following topics:
    • Basic caregiving: Participants are taught basic caregiving skills needed by a patient in the home, including turning a patient in bed and safe strategies for moving the patient from a bed to a chair.
    • Advance health care planning: Session leaders explain to participants in laymen's terms the purpose and legal ramifications of advance directives, including possible end-of-life interventions. Participants receive advance directive forms and are encouraged to consider their own spirituality and value systems in identifying their wishes for end-of-life care.
    • Communication strategies: Session leaders instruct participants in how to communicate their end-of-life wishes to children or other family members. For example, participants are encouraged to express their preferences by discussing scenarios presented in television shows or movies, or in the context of end-of-life issues faced by family members or friends. Session leaders also teach participants about strategies for communicating desires to physicians, and give participants the opportunity to share their own communication strategies with the group.
    • Resources: Participants receive information about different service options (e.g., palliative care, in-home and inpatient hospice care, home health care, assisted living, nursing home placement) and insurance coverage for these services. Community resources such as Meals on Wheels, transportation services, and housekeeping services are also discussed.
    • Care for the caregiver: Topics include identifying the signs of stress, how to cope appropriately, and how to reduce stress.
  • Grief recovery program: This free bereavement program, instituted in 1987 and open to any community member, provides education and support following the death of a loved one. Led by palliative care services staff, the program consists of five weekly 2-hour sessions; session topics include understanding grief, remembering the loved one, spirituality and healing, recovering from grief and getting back into life, incorporating stories about the loved one into daily life, and coping with anniversaries and other difficult days during the first year after the death of a loved one.

Context of the Innovation

Providence Hospital (http://www.provhosp.org), a 408-bed community hospital in Northeast Washington, DC, is part of Ascension Health, the nation's largest Catholic and largest nonprofit health system. Approximately 95 percent of the hospital's patients are African American. Providence Hospital's palliative care service receives an average of 270 referrals annually. Since its launch in 1987, the program has adopted new culturally sensitive initiatives, largely in response to a recognition that many patients did not have a good understanding of palliative care, and that many physicians, particularly residents, were not comfortable discussing death and dying with their patients.

Did It Work?

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Results

Although the impact of the program has not been formally measured, qualitative surveys and anecdotal reports suggest that both physicians and families are highly satisfied with it.
  • High physician satisfaction: A 2003 survey of physicians who referred patients to the program found that they thought it was very beneficial to both themselves and their patients. Physicians reported that the palliative care service's education programs helped them ease family transitions and assisted them in providing culturally sensitive, appropriate end-of-life care to their patients.
  • High family satisfaction: Most families completing satisfaction surveys rate the palliative care service as a "10" on a scale of 1 to 10, often citing appreciation for the team's compassion and listening abilities. The director of palliative care services also notes that, anecdotally, patients and families who have a comfortable relationship with their doctors are less likely to insist on aggressive care and are more satisfied with end-of-life care.

Evidence Rating (What is this?)

Suggestive: No formal studies of the program's impact have been conducted; evidence consists of qualitative, post-implementation survey data and anecdotal reports.

How They Did It

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Planning and Development Process

The director of palliative care services at Providence identifies the following elements that should be incorporated into the planning and development process for the program:
  • Identify champions: The hospital leadership should identify administrators, nurses, and/or physicians who understand palliative care and can support and advertise palliative care services.
  • Research palliative care needs: To determine initial program offerings, the champions should review existing research on palliative care and conduct physician and nurse surveys designed to elicit information on the types of palliative care services needed and the end-of-life issues and obstacles that frequently arise during patient care.
  • Consider cultural issues in the patient population: The champions should also assess the demographics of the patient population and conduct research and focus groups among patients and direct caregivers to determine culture-specific opinions, perceptions/misperceptions, knowledge, sensitivities, and preferences regarding death, dying, and end-of-life care.
  • Develop a business case: Templates available from the Center to Advance Palliative Care (http://www.capc.org) can be used to outline the financial impact of the palliative care service.
  • Appoint staff: The hospital should appoint a director of palliative care and allocate appropriate staff to provide palliative care services. Appointing staff members who represent the same cultural communities served is ideal.
  • Advertise the service to clinicians: The palliative care staff can communicate formally and informally with other clinicians to describe the services that can be provided by palliative care, assure them that their own roles in patient care will not be usurped by the palliative care team, and ask them for suggestions regarding how palliative care staff can be of assistance (e.g., by providing patient education).
  • Educate clinicians: Hold educational sessions to ensure that clinicians understand the cultural sensitivities of their patients regarding death and dying, and offer suggestions for how to talk about end-of-life issues in this context.
  • Refine and expand program over time: By working with patients and clinicians and monitoring the research, the palliative care service can identify and develop new services that directly address the cultural and spiritual needs of the patient population. For example, Providence developed the grand rounds initiative (with the approval of the physician in charge of residents) after learning about research sponsored by the Robert Wood Johnson Foundation that found that medical schools were not providing adequate training on end-of-life issues. In addition, the service developed the "Breaking Bad News" series after an attending physician reported that residents were uncomfortable delivering bad news and discussing care goals, treatment options, and end-of-life care issues with patients and families.

Resources Used and Skills Needed

  • Staffing: The program includes three full-time registered nurses (one of whom serves as program director), one part-time social worker, and two volunteers (one who provides pastoral care and another who provides palliative care services at the hospital's nursing and rehabilitation center).
  • Costs: The annual costs for the program are approximately $200,000, consisting primarily of salary and benefits for the palliative care staff.
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Funding Sources

Providence Hospital; Lance Armstrong Foundation; Alexander and Margaret Stewart Trust
Providence Hospital and the Alexander and Margaret Stewart Trust fund the salaries of the palliative care team. The Lance Armstrong Foundation provided a grant that facilitated the development of the educational modules for caregivers.end fs

Tools and Other Resources

The Center to Advance Palliative Care (http://www.capc.org) offers tools, resources, and technical assistance for starting and sustaining a palliative care program.

Adoption Considerations

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Getting Started with This Innovation

  • Identify a champion: A physician, nurse, or administrator who understands the nature and benefits of palliative care can help educate other clinicians.
  • Conduct internal and external research: Review the literature and hold discussions with physicians and other clinicians to identify the appropriate services to offer.

Sustaining This Innovation

  • Bring education to the community: Offering palliative care education at community locations, such as senior centers and churches, can lead people to think about and communicate their end-of-life desires in advance of a health care crisis.
  • Be patient: Developing a palliative care service takes time, as clinicians must develop a level of comfort in referring patients to palliative care providers. To hasten this process, emphasize that palliative care staff can work as partners with physicians and other clinicians to enhance the quality of life for the patient.
  • Emphasize the need to be sensitive yet straightforward: Patients and families appreciate being given direct information that considers their spirituality and values, and are often grateful and relieved to find a respectful caregiver with whom to discuss end-of-life issues.

More Information

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Contact the Innovator

Karole Thomas, RN, MSN
Director, Palliative Care Services
Providence Hospital
1150 Varnum Street NE
Washington, DC 20017
(202) 269-7051
E-mail: kthomas@provhosp.org

Innovator Disclosures

Ms. Thomas reported that Providence Hospital received funding from Stewart Trust Tucker Grant, she received payment for lecture and manuscript preparation from the Genuine Caring Nursing Home in Yokohama, Japan, and that she received payment from the Lance Armstrong Foundation in support of work related to this profile. She is also a member of the Hospice & Palliative Nurses Association.

References/Related Articles

Wood DA. Innovative Honor—Providence Hospital receives award for palliative care programs in D.C. Global Action on Aging. September 8, 2008. Available at: http://www.globalaging.org/health/us/2008/honor.htm

Footnotes

1 National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America. October 2008.
2 Taxis JC. Attitudes, values, and questions of African Americans regarding participation in hospice programs. J Hosp Palliat Nurs. 2006;8(2):77-85.
3 Johnson KS, Kuchibhatla M, Tanis D, et al. Racial differences in hospice revocation to pursue aggressive care. Arch Intern Med. 2008;168(2):218-224. [PubMed]
Comment on this Innovation

Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: March 17, 2010.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: April 09, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: February 28, 2014.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.