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Bringing Hospice to the Latino community

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1 Bringing Hospice to the Latino community
In the united states Customs, beliefs, values, are all important to how a family makes decisions about end of life care. Hispanics living in the United States have historically utilized less hospice services and utilized more aggressive treatment at the end of life. This is a bit paradoxical as the values that they adhere to, focus on holistic care, support for the family to provide care and the importance of spirituality are all a significant part of the services that Hospice provides

2 Objectives PROVIDE An OVERVIEW OF Hospice care and the history of dying in the united States Explore Latino culture related to End of life care Identify barriers preventing Latino’s access to hospice care Suggest strategies to increase access to hospice services to improve quality of life I will explore the assimilation of Latino’s into the American culture of health care at the end of life and identifying barriers to care and application to overcome them to bring quality end of life support to them and their families.

3 Hospice Care Compassionate care by a team of professionals
To individuals with a terminal diagnosis and support to families Provided in the patients home To Support the primary care giver with information on symptom management and caregiving Patients determined goals and treatment Includes spiritual, emotional and psychosocial support Hospice care entered the American health care system in the mid- 20th Century and has become a major model for end of life care (Kreling, Selsky, Perret-Gentil, Huerta, & Mandelblatt, 2010) and a subgroup of the American health care system. A patient can receive the support of Hospice services when the goal of care is managing symptoms and providing comfort along with the physician’s prognosis that the person’s life is limited to 6 months or less. Hospice care is provided by a team of individuals, to support the patient, family and primary care giver as they care for the person who is dying. It is not meant to take the place of the primary care giver. Care is given in the patient’s home, wherever that may be. It can include a residential care facility, assisted living or nursing facility or to a homeless person possibly “under a bridge”. The patients attending physician along with the hospice team work to support the patient and family in meeting their goals. The team provides education and support to manage undesirable physical symptoms, provides spiritual and emotional care including bereavement services for the family after the death. It is paid for through most private insurance’s, Medicare and Medicaid. Financial assistance may be available from non-profit hospices for those who have need for financial assistance for hospice services.

4 History of Dying in America
Life expectancy 100 years ago was 48 years and today it is 78 years. We will most likely die from an extended chronic illness Meet Marilyn. She is 82 years old and has experienced a significant decline in her health for the past 17 years of her life. In 1996, she experienced a cerebral hemorrhage. She was hospitalized for 3 months in an acute hospital setting and then spent 6 months in rehab. Even though her therapists enabled her to go from being bed bound to walking with a walker she never regained her independence and has lived most of her years since in some type of care facility. Her decline since that time has been a very slow decline. Today she slowly propels herself around the care center in her wheelchair, and needs assistance for all of her personal care. She is pleasant and responds to those around her with a smile or turned up nose, but has great difficulty expressing herself, or recalling anything that has happened in the past 20 years. It is my understanding that if Marilyn’s hemorrhage would have happened years earlier, she would not be alive today. Marilyn is my mother.

5 The paradox People indicate that they prefer to die at home surrounded by family 70% of Americans die in some type of facility Advances in medical technology has changed the way we live the last days of our lives years ago the average life expectancy was 48 years. People died quickly of sudden illness and disease. Most people died in their homes. The extended family was present and it was a normal part of life (Kaldhusdal, 2011). The trajectory of illness and death since that time has changed dramatically. Only a few people today will die from a sudden illness. Because of advances in technology, most people will experience chronic disease with a slow decline in function leading to death (Scott Murray, Marilyn Kendall, Kristy Boyd, Aziz Sheikh, 2005). The life expectancy is now 78 years. Today, most Americans report that they prefer to die at home being cared for by family members however, nearly 70% of deaths in America today happen in some type of facility, hospital or long term care facility (Center for Disease Control, 2005).

6 Death denying cultures
“In our culture we do not view death as a continuum of life but rather as an enemy that must be defeated.” -Flaskerud, 2011 Cultural beliefs play a significant role in our attitudes about death. Talking openly about terminal illness is often not accepted. A characteristic of both American and Hispanic culture avoiding conversations about death is even more prevalent in the Hispanic culture. The death experience, an inevitable part of life, is often fought against at all cost. In Western Culture advancements in technology have given us more options to prolong life and obscure the reality that death is inevitable (Flaskerud, 2011) (Kaldhusdal, 2011). “In our culture we do not view death as a continuum of life but rather as an enemy that must be defeated (Flaskerud, 2011).

7 Cultural orientation American Latino Individualism
Decisions are made by the Individualism We control our destiny A healthy life style gives us control over death Decisions are made by the family The core of life is the family Individuals defer decisions to the entire group A more significant difference in American culture and Hispanic culture is the emphasis in American culture on the individual and on self. (Jandt, 2010, p. 164). This individualistic characteristic plays a part in the American beliefs related to health and prolonging or denying our own death experience. “We have a distorted belief” system that if we live a healthy life style, make good decision, we will have control over illness and death (Flaskerud, 2011). Hispanic culture places importance on the entire group. Decisions are made by the group and not the individual. This characteristic is labeled as collectivism (Jandt, 2010). Individuals are loyal to and closely tied to the interests of the entire group. Relationships with in the family are very important and decisions are made by the entire family, not the individual (Kreling, Selsky, Perret-Gentil, Huerta, & Mandelblatt, 2010) (Marya Cohen, Jessica McCannon, Susan Edgman-Levitan, William Kormos, 2010). The core of Latino life is the family (Austerlic, 2009). This orientation to life may cause conflict with the American medical’s system of getting direction and informed consent from the individual patient. The Latino patient may defer decisions to family members even when they are capable of making their own decisions.

8 Latino’s secrecy Speaking about death will bring harm to the patient
Group decision making is complicated by Latino’s desire to avoid speak directly to the patient about prognosis and issues related to death. They feel that talking about the death will be “harmful to the patient and cruel to the family (Kreling, Latino Families and Hospice, 2010). Latino caregivers preferred less information about the prognosis and seemed to report more denial than white non-Latino caregivers (Kreling, Selsky, Perret-Gentil, Huerta, & Mandelblatt, 2010, p. 430) As a result of not having discussions about prognosis and death, when a person’s health declines rapidly, they often are taken to the emergency room and seek aggressive treatment (Austerlic, 2009). Speaking about death will bring harm to the patient Desire little information about prognosis Often seek aggressive treatment at end of life

9 Latino’s Identify common goals for end of life care
Participation of family in the care of the family member Support to reduce the burden on the primary Caregiver Spirituality Holistic, compassionate care of the patient and the family A study completed in 2004 indicated that what Latino’s want for care at the end of life is consistent with the philosophy of Hospice care. The research utilized discussions about end-of-life care in small focus groups made up of African Americans and Latino’s. Researchers reviewed the transcript of the discussions and came up with 4 prevailing themes that were important to both groups at the end-of-life (Wendi Born, Allen Greiner, Eldonna Sylvia, James Butler, Jasjit Ahluwalia, 2004, p. 249). Participation of the family is central to the care of the terminal patient. Visitation of family members should never be limited and they are seen as bringing comfort to the dying. They repeatedly talked about family coming first and it was common for them to sacrifice other things like a career in order to be present with the family member who was dying. Family decision making and a desire for the family’s wishes to be respected was noted. There was also consensus that the entire family unit needed services from the hospice team, not just the patient (Wendi Born, Allen Greiner, Eldonna Sylvia, James Butler, Jasjit Ahluwalia, 2004, pp ). The second overall theme in this study was the desire for supportive services to reduce caregiver burden. This included assistance with pain and symptom management, assistance with personal care, respite care, emotional and spiritual support. This was only to reduce caregiver burden and not replace the caregiver (Wendi Born, Allen Greiner, Eldonna Sylvia, James Butler, Jasjit Ahluwalia, 2004, p. 250).

10 Spiritual life is a source of comfort
Belief in God Prayer Life after death Thankfulness for “the gift of Life” Spirituality was indicated as being important for multiple reasons by all groups’ members. Prayer was seen as comforting, a way to cope and it was important to verbalize thankfulness for “the gift of life”. Belief in God and having faith that God mediates at the time of death, that there is life after death was a source of great comfort as patients and family members experience this process (Wendi Born, Allen Greiner, Eldonna Sylvia, James Butler, Jasjit Ahluwalia, 2004, p. 251). .

11 Compassion The last general theme noted in this study is a desire for patients and families to receive “holistic” care. They identified this as showing genuine concern for the patient and family (Wendi Born, Allen Greiner, Eldonna Sylvia, James Butler, Jasjit Ahluwalia, 2004, p. 261). I call this compassionate care. Listening and responding to all of their needs, and not just the physical needs of the patient. This included emotional psychosocial, and spiritual needs “Compassion, the capacity to empathize with other people’s suffering, is universal and can be felt even in the face of language barriers…Compassion is not about fixing a problem but rather witnessing and “being there” for the one who is suffering (Austerlic, 2009).”

12 End of Life practice Most older Latino’s prefer non-aggressive care focused on symptom management and comfort A large majority have not done end of Life planning which puts them at risk for aggressive care They are less likely to receive hospice care services Latino’s die more often in a hospital setting than others Another study was completed to understand the preferences of Latino’s over the age of 60 years old and the completion of advance medical directives or advanced care planning. 178 participants were randomly selected from 22 senior centers in greater Los Angeles. They were interviewed privately utilizing a 40 question, “Opiniones” that measured preferences at end of life and their advanced care planning. They concluded that the majority of older Latino’s prefer non-aggressive care focused on symptom management and comfort however expressed concern that many had not done advanced care planning which might put them at risk for aggressive care at the end of their life (Amy Kelley, Neil Wenger, Catherine Sarkisian, 2010). This is similar to the paradox referred to in “Consider the Conversation” where American’s indicate that they want to die at home, but the actual death experience is happens in other places (Kaldhusdal, 2011). Despite this knowledge that Hispanics in general want non-aggressive, compassionate, holistic end of life care, provided by their families, studies show that they are less likely to receive this type of care. They are less likely to utilize hospice services and they die more often in a hospital setting than non-Hispanic whites (Amy Kelley, Neil Wenger, Catherine Sarkisian, 2010, p. 1109) (Kreling, Selsky, Perret-Gentil, Huerta, & Mandelblatt, 2010). This indicates the need for reflection on this discrepancy and evaluation of access to Hospice care.

13 Barriers to access Lack of general information about hospice care
Concern with cost and payment for care Language barriers Mistrust of the American health care system Born and colleagues identified four barriers to receiving hospice services: lack of information about hospice care; cost; language barriers; and mistrust of the American health care system (Wendi Born, Allen Greiner, Eldonna Sylvia, James Butler, Jasjit Ahluwalia, 2004, pp ). Kreling proposes that Latino cultural values of collective decision making, and indirect communication wishes may affect utilization of hospice services. They also found that Latino caregivers had little prior knowledge of hospice services compared to white non-Latino hospice caregivers (Kreling, Selsky, Perret-Gentil, Huerta, & Mandelblatt, 2010, pp ). For those who don’t have legal documents to be in the United States, fear and mistrust is understandable.

14 Comprehensive approach
Community Liaison Community Advisory Board Collaboration with organizations Trusted Bilingual Bicultural Community oriented Respected leaders Offer suggestions Provide feedback Support the services Human service organizations Churches Community centers Health care providers The National Hospice and Palliative Care Organization has established a guide for communities to utilize in reaching out to the Latino community. The guide highlights a project utilized in Scotts County California. They suggest a comprehensive approach that emphasizes building relationships and collaborating with established agencies. They suggest recruiting a credible community liaison who is bilingual and bicultural. The establishment of an advisory board made up of respected community leaders who can give community feedback and provide opportunity for “reciprocal learning” is key to gaining trust with in the community (Latino Outreach Guide , ).

15 Build Relationships Trust Bilingual/Bicultural
Education prior to Crisis Review of the literature indicates there are some common suggestions for building relationships with the Latino population and increasing opportunity for access to hospice services. These include: Building trust by utilizing a community liaison who is bilingual is a priority. Individuals who are in the United States without legal documents are going to be very careful as to the services and the organizations in which they connect with. Personal connections are very important (Austerlic, 2009) (Latino Outreach Guide , ) (Kreling, Latino Families and Hospice, 2010). Providing information and education about hospice services in settings that they are comfortable in. The timing of this education is best when the individual and family are not faced with a medical crisis. Education needs to be provided related to the payment for hospice care services. Medicare, Medicaid and most private insurance companies cover hospice services. Most non-profit hospice organizations also have funds for those without insurance and no ability to pay.

16 Language awareness “Caregiving” “Hospice” “Terminal care”
Refers to professionals only Family members don’t call themselves caregivers Refers to an institutional setting Has negative connotations Suggest using “Compassionate care” Suggest using “future care” Awareness of language and the meaning of common words and potential for misunderstanding is important. The concept of “caregiving” in the Latino community often refers to the professional. Family members providing care don’t consider themselves caregivers. The word “hospice” may mean an institutional setting and have negative connotations. It is suggested to use “compassionate care” instead of the word “hospice”. Instead of using the word “terminal care” consider using “future care” (Latino Outreach Guide , ).

17 The conversation Provide time and setting for a family meeting
Be sensitive to their wishes for communicating prognosis and talk of death Utilize a bilingual person or an interpreter other than a family member Ask open ended questions to evaluate what they know and what they are open to talk about Listen for the language that they use to talk about the illness Listen to their story and repeat it back to them Ask for permission to share what you know Be ready to stop when they indicate discomfort with the discussion Provide time and a quiet setting for the family as a whole to be involved with the decisions related to end of life care. Be sensitive to their belief that talking about a terminal prognosis or end of life may not helpful to the patient. When having these difficult conversations, utilize someone who is bilingual in language and culture if possible. If not, utilize a skilled interpreter.

18 Ask Open Ended Questions
Listen to their Story Repeat it back to them for Clarification Ask for Permission to Share what you Know Clarify that they Understand Start by asking open ended questions and listen to what they know and the language that they are comfortable using. Assess their understanding (Austerlic, 2009) Let them lead the conversation. After hearing their story, their concerns and hopes for the future, repeat it back to them. Then ask for permission to share what you know utilizing their language. Always be sensitive to their receptiveness and open to stopping the conversation if they are not comfortable with it. Ask them to repeat back their understanding of what you have shared. The cycle continues. This process can be very difficult in a group as individuals in the group can be at very different places in their understanding of and emotions related to the situation

19 Our team of caring hospice providers
I would like to suggest utilizing a concept of professional caring called cultural humility. It is a term used to describe a professional’s two-way therapeutic relationship between the client and the provider. It removes the power imbalance that is often seen in relationships and places clients and the professional on equal ground. Both participants have things to contribute. The professional becomes the student and gives up the role of being the expert to the client. The professional continually engages in self-reflection and assesses the cultural experience of each new client. This model brings quality care to the patient meeting their individual needs (Austerlic, 2009). Cultural Humility Our team of caring hospice providers

20 In Mexico, a Hispanic tradition, Dia de los Muertos also known as All Saints Day, November 1st and 2nd, people gather in homes and around the graves of loved ones who have died. They decorate them with food, flowers and items of importance to them. The participants talk amongst themselves remembering those who have passed and recognizing that their spirits continue to be a part of them. The holiday has changed as the commercialization of Halloween has influenced traditions, however, some Hispanic communities are bringing it back (Hamburg, 2002). Recognizing this as part of the grieving process for Hispanics, respecting this belief, learning from it, and participating in it could be a form of cultural humility.

21 Important comes in two sizes – yours and mine - Ken Alstad
End of life is a time period when attention is given to relationships, to remembering, and to saying good-bye. It is a time of transition that can have profound meaning. To miss this because someone is in physical, emotional or spiritual pain, or to be in an unfamiliar place fighting against all odds is a tragedy. Hospice care is an option and it is available for all. Bringing this option to the Latino community through excellent intercultural communication, utilizing cultural humility in our interactions, will provide support and alleviate unintentional suffering during the last days of life.

22 References: All Saints Day Around the World in Pictures. (2011, November 2). Retrieved from The Guardian: Amy Kelley, Neil Wenger, Catherine Sarkisian. (2010). Opiniones: End-of-Life Care Preferences and Planning of Older Latinos. The American Geriatric Society, Austerlic, S. (2009, February). Cultural Humility and Compassionate Presence at the End of Life. Retrieved from Markkula Center for applied Ethics: competent-care/chronic-to-critical-austerlic.html Control, C. f. (2005). Facing Death. Retrieved from Frontline: death/facts-and-figures/ Flaskerud, J. (2011). End-of-Life Preparation: Advance Care Planning. Journal of Mental Health Nursing, pp Hamburg, E. (2002). Evoking the Spirits: Mexico's Annual Mockery of Death. Retrieved from American Hospice Organization. Jandt, F. E. (2010). An Introduction to Intercultural Communication - Identities in a Global Community. Thousand Oaks: Sage Publications. Kaldhusdal, M. B. (Director). (2011). Consider the Conversation [Motion Picture]. Kreling, B. (2010). Latino Families and Hospice. Retrieved from American Hospice Foundation: https://www.americanhospice.org/articles-mainmenu-8/about-hospice-mainmenu-7/519-latino-families-and-hospice

23 References continued Kreling, B. (2012). Latino Families and Hospice. Retrieved from American Hospice Foundation: Kreling, B., Selsky, C., Perret-Gentil, M., Huerta, E., & Mandelblatt, J. (2010, April 24). 'The worst thing about hospice is that they talk about death': Contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers. Palliative Medicine, pp Latino Outreach Guide . ( ). Retrieved from National Hospice and Palliative Care Organization - Caring Connections. Marya Cohen, Jessica McCannon, Susan Edgman-Levitan, William Kormos. (2010). Exploring Attitudes toward Advance Care Directives in Two Diverse Settings. Journal of Palliative Medicine, Scott Murray, Marilyn Kendall, Kristy Boyd, Aziz Sheikh. (2005, April 30). Illness trajectory and Palliative Care. Retrieved from BMJ: Wendi Born, Allen Greiner, Eldonna Sylvia, James Butler, Jasjit Ahluwalia. (2004). Knowledge, Attitudes, and Beliefs about End-of-life Care among Inner-City African Americans and Latinos. Journal of Palliative Medicine,


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