END OF LIFE NEEDS: TELESCOPING THROUGH CULTURAL EYES

Joint Presentation by

Kandyce Powell MSN, RN & Kolawole A. Bankole, M.D., M.S. Minority Health Program HHS Dept., Public Health Div. City of PortlandMaine Hospice Council andCenter for End-of-Life Care

Lets celebrate diversity

AimTo create awareness, understanding and elimination of Maine ethnic minority end-of-life disparities.

There is no greater sorrow on earth than the loss of ones native land --Euripides, 431 B.C.

Working with individuals from diverse cultures and with perspectives different from our ownCultural competence can help to better meet the needs of diverse populations. Challenges

Why Consider Culture? Helps us to understand the values, attitudes and behaviors of others

Helps us to avoid stereotypes and biases that can undermine our efforts

Plays a critical role in the development and delivery of services that are responsive to the needs of the recipient

Project WorkplanExplore community perspectives/perceptions on end-of-life issues; barriers & solutions to accessing hospice care; mode of communication, etc.Educate service providers on culture matters as related to end-of-life, eg. MHC annual educational conference, Maine Pain Initiative & MHC/AG community conversation town hall forumsConvey stakeholders forum to implement community recommendations

Journey so far.6 focus groups conveyed with Latino, Somali, Sudanese, Russian, Serbian & French communities. Planning Native American group session.Maine Pain Initiative forum with 8 ethnic group representativesMHC/AG Office Community Conversation Town Hall forumMHC Annual Educational conference.

Focus Group common themesFamily/Religion/Beliefs come first in decision makingSpecific cultural/religious ritual practices needed to be performed at the end-of-lifeSystem constraints to observing cultural end-of life passageLinguistic and financial barriersGrieving is a natural part of life process.Various community recommendations

Barriers to Service AccessStructural Barriers: Lack of health care insuranceHigh out-of-pocket expensesLack of transportationLanguage difficultiesImmigration (visa requirements)Mistrust of health care systems- both institutions and providers

Barriers to Service AccessCultural Barriers: Characteristics of minority groups, such as styles of interaction and expectations.Multiple understandings regarding the basis of illness or diseaseReliance and integration of traditional health care practicesDelaying access to careLinguistic barriers

End-of-Life Care: The Latino CulturePatterns of Kinship and decision-making when caring for your terminally ill Latino patientFamily involvement is very importantRelatives participate in spiritual & physical care of their ill family memberFamily may prefer to hear about medical news before patient is informed to deliver news graduallyPatient & family may prefer to be at home at the end of lifePatient & family believe God determines outcome of illness/death is a natural part of life processRituals

End-of Life Care: Somali CulturePatterns of Kinship and decision-making when caring for your terminally ill Somali patientReligion is first. Believe strongly in Islamic faith. Family/community involvement is very importantSpiritual & physical care done with chapters read from Quran (Islamic Holy book).No preference for a place at the end of life.Patient & family believe God determines outcome of illness/ death is a natural part of life process.Rituals

End-of Life Care: Russian CulturePatterns of Kinship and decision-making when caring for your terminally ill Russian patientFamily involvement is very importantThe doctor, not the nurse should transmit medical news to family/patient. Pt problems are family problemPt/family member are expressive to get the best from the H/C systemGifts may be offered to members of H/C teamRituals

End-of Life Care: Sudanese CulturePatterns of Kinship and decision-making when caring for your terminally ill Sudanese patientFamily/community involvement is very important. Pt problems are family problemBreaking of bad news to brother of dying person or head of family and not the wifeNeed community center to showcase cultural heritage.Interment and no cremation.Looks forward to afterlifeRituals

Common Request /Recommendation Themes 1Health care system to be more responsive to community needs, e.g. remove systemic barriers to accessing care; respect cultural rituals; healthcare insurance coverage, etcResource information/guide on End-of-Life services in several languagesTrain community hospice volunteersFaith-based/holistic/cultural approaches to hospice care

Common Request / Recommendation Themes 2Needs land to bury the deadFuneral directors should respect the cultural preferences/practices of peopleProvide medical interpreter servicesPlease, listen to the wishes of the dying person and do not let policies get in the way of cultural preferencesOthers

Whats Next...Focus session with Native AmericansStakeholders forumEducational sessionsOther.

Communicating with your terminally ill Latino Patient & relatives

Do not use euphemisms. Difficult to translate well for communication. Use clear & Specific language~ better understand prognosis and decisions about palliative careInitiate a dialogue on issues & problems. Patient/family members may not be assertive in communicating with doctor/staff to avoid direct disagreement

Useful tips to increase trust with terminally ill Latino patient

Be aware of variety of Latino cultures. Ask patient / family member of their preferences / ritualsLearn more about patient through informal conversations with extended family membersRespeto (Respect): an important concept in Latino culture. E.g. older patient prefer to be called Senor (Mr.) or Senora (Mrs.). Ask your patients what they prefer.Grieving is a natural part of life process. Patients family may not seek assistance with grief process

RitualsPrayers and ritual: special amulets and rosariesBurning candles for worshipDisplay of saintsCleansing of the bodyPrefer person die at home than hospitalObserving the last rites eg. CatholicWailing and strong emotions are signs of respect

Communicating with your terminally ill Somali Patient & relatives

Introduce yourself to patient by name and clinical role. Tell of experience in caring for similar patients.Ask patients about believe for reason for illness.Ask if they need a visit from a holy person, SheikhEnsure interpreter presence, female preferred for female patients.Initiate a dialogue on issues & problems. Patient/ family members may not be assertive in communicating with doctor/staff to avoid direct disagreement

Useful tips to increase trust with terminally ill Somali patientBe aware that norms in social situations, modesty and touch are based on Islamic traditions.Modesty: Women and girl gender preference during examinations.Avoid direct eye contact b/cos of modestyCommon greeting is shake hands and say, Salama-aleykum, meaning May peace be with youMen shakes hands only with menGrieving is a natural part of life process. Patients family may not seek assistance with grief process

RitualsPrayers and ritual: special prayers reading chapters from QuranSpecial diet: no pork, alcohol, proper preparation.Prayers and herbal remedies, such as habadsoda, a general healing herb.Cleansing of the deceased body before interment. Interment done ASAP. Grave measured according to Islamic rule.

ConclusionThe challenge of eliminating disparities among the minority communities requires concerted efforts of health professionals and policy makers to address inequities in health as well as to amend the practice of providing culturally & linguistically appropriate services.

Contact Information:Kolawole Bankole, MD, MSMinority Health Program Coordinator /Access Project DirectorPublic Health Division, HHS Dept.City of Portland389 Congress St.Portland, ME 04101Tel 207-874-8773, Fax 207.874.8913Email: bak@portlandmaine.govWeb site: http://www.portlandmaine.gov/hhs/phminority.aspKandyce Powell, MSN, RNExecutive DirectorMaine Hospice Council, Inc.693 Western Ave., Manchester, ME 04351Toll Free: (800) 438-5963Local:(207) 626-0651Email: kpowell@mainehospicecouncil.orgWeb site: http://www.mainehospicecouncil.org

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