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 Portland Maine Hospice Council and Center for End-of-Life Care

Let’s celebrate diversity

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

“There is no greater sorrow on earth than the loss of one’s native land” --Euripides, 431 B.C.

Working with individuals from diverse cultures and with perspectives different from our own Cultural 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 Workplan Explore 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 forums Convey 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 representatives MHC/AG Office Community Conversation Town Hall forum MHC Annual Educational conference.

Focus Group common themes Family/Religion/Beliefs come first in decision making Specific cultural/religious ritual practices needed to be performed at the end-of-life System constraints to observing cultural end- of life passage Linguistic and financial barriers Grieving is a natural part of life process. Various community recommendations

Barriers to Service Access Structural Barriers : Lack of health care insurance High out-of-pocket expenses Lack of transportation Language difficulties Immigration (visa requirements) Mistrust of health care systems- both institutions and providers

Barriers to Service Access Cultural Barriers : Characteristics of minority groups, such as styles of interaction and expectations. Multiple understandings regarding the basis of illness or disease Reliance and integration of traditional health care practices Delaying access to care Linguistic barriers

End-of-Life Care: The Latino Culture Patterns of Kinship and decision-making when caring for your terminally ill Latino patient Family involvement is very important Relatives participate in spiritual & physical care of their ill family member Family may prefer to hear about medical news before patient is informed to deliver news gradually Patient & family may prefer to be at home 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: Somali Culture Patterns of Kinship and decision-making when caring for your terminally ill Somali patient Religion is first. Believe strongly in Islamic faith. Family/community involvement is very important Spiritual & 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 Culture Patterns of Kinship and decision-making when caring for your terminally ill Russian patient Family involvement is very important The doctor, not the nurse should transmit medical news to family/patient. Pt problems are family problem Pt/family member are expressive to get the best from the H/C system Gifts may be offered to members of H/C team Rituals…

End-of Life Care: Sudanese Culture Patterns of Kinship and decision-making when caring for your terminally ill Sudanese patient Family/community involvement is very important. Pt problems are family problem Breaking of bad news to brother of dying person or head of family and not the wife Need community center to showcase cultural heritage. Interment and no cremation. Looks forward to afterlife Rituals…

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

Common Request / Recommendation Themes 2 Needs land to bury the dead Funeral directors should respect the cultural preferences/practices of people Provide medical interpreter services Please, listen to the wishes of the dying person and do not let policies get in the way of cultural preferences Others…

What’s Next…... Focus session with Native Americans Stakeholders’ forum Educational sessions Other….

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 care 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 Latino patient Be aware of variety of Latino cultures. Ask patient / family member of their preferences / rituals Learn more about patient through informal conversations with extended family members Respeto (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. Patient’s family may not seek assistance with grief process

Rituals Prayers and ritual: special amulets and rosaries Burning candles for worship Display of saints Cleansing of the body Prefer person die at home than hospital Observing the last rites eg. Catholic Wailing 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, “Sheikh” Ensure 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 patient Be 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 modesty Common greeting is shake hands and say, “Salama- aleykum”, meaning “May peace be with you” Men shakes hands only with men Grieving is a natural part of life process. Patient’s family may not seek assistance with grief process

Rituals Prayers and ritual: special prayers reading chapters from Quran Special 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.

Conclusion The 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, MS Minority Health Program Coordinator /Access Project Director Public Health Division, HHS Dept. City of Portland 389 Congress St. Portland, ME Tel , Fax Web site: minority.asp minority.asp Kandyce Powell, MSN, RN Executive Director Maine Hospice Council, Inc. 693 Western Ave., Manchester, ME Toll Free: (800) Local: (207) org org Web site: cil.org cil.org