Hospice Care and Cultural Diversity

Donna Infeld, Audrey K Gordon, Bernice C Harper

• Publisher: Routledge
• Year: 2014
• eBook ISBN: 9781317764359
• Topic: Medicina
• Subtopic: Teoría, práctica y referencia médicas

Hospice Care and Cultural Diversity captures the richness and differences that make up the United States and its culture. This book shows you the complex issues arising from work with patients of a different culture and encourages research in hospices which support culturally innovative programs. Many people are individually knowledgeable and culturally sensitive, but few hospices have systematically planned for service to culturally diverse groups. This volume identifies who is implementing organizational programs of cultural sensitivity and acknowledges the efforts of those individuals working to make hospice accessible to everyone.Hospice Care and Cultural Diversity contains original research, personal insights, and overviews to help you understand what is being done in the field. Specifically, chapters discuss:

• National Hospice Organization activities, goals, and recommended actions
• death and dying from a Native American perspective
• breaking barriers to hospice for African Americans
• a case study of the development of a culturally sensitive treatment plan in pre-hospice south Texas
• caregiving norms surrounding dying and use of hospice services among Hispanic American elderly
• cultural considerations surrounding childhood bereavement among Cambodians in the U.S.
• one hospice's experience in identifying and meeting the needs of ethnic minority patientsPeople from many different cultures are eager to share their customs, practices, and beliefs. They want hospice providers to understand their culture, and they want their community served by hospice. The only book of its kind, Hospice Care and Cultural Diversity is a valuable reference and source of ideas for anyone interested in the delivery of hospice services. From students to experts, you will find much information to help make hospice care accessible and comfortable for all groups of people.

Research Reports

Maria: Developing a Culturally-Sensitive Treatment Plan in Pre-Hospice South Texas

Michael H. Beechem

SUMMARY. This is a case study of a young Mexican-American woman who suffered from end-stage renal disease and severe depression in Texas, before the availability of hospice care. The patient, while struggling to retain her cultural identity in a renal care unit which stressed efficiency, was labeled noncompliant by the medical team. Through knowledge gained from staff discussions, the medical team was able to integrate cultural sensitivity and hospice principles into the treatment plan. With an increased focus on her psychosocial needs, the patient was able to die with a sense of dignity and cultural integrity. [Single or multiple copies of this article are available from The Haworth Document Delivery Service: 1-800-342-9678,9:00 am, - 5:00 p.m. (EST).]

Background

In 1976, as a recently graduated masters-level social worker from the upper midwest, I accepted a position in a South Texas hospital to provide social services to end-stage renal disease patients. While inexperienced in working with dying patients, through my studies I had come to appreciate the value of humane care for dying persons as well as their right to autonomy in decision-making about medical care.

The following account is a case study that required cultural sensitivity and contained elements of hospice philosophy and practice at a time when formalized hospice services were virtually unknown in South Texas. Hospice philosophy and practice in this case study included: caring as opposed to curing; controlling pain; providing emotional support for patients; treating family members and the patient as a unit; involving the patient and family members in care planning; relaxing visitation policies; applying an interdisciplinary team approach; and, above all, regarding the dying person as unique with special needs.

I met Maria Garcia when she began hospital-based dialysis. Unlike many of the patients who blindly resigned themselves to a rigid medical regimen, Maria questioned all facets of the treatment, I was fascinated with her independence and spunk and decided to maintain extensive case notes to better understand this refreshingly free-spirited person; therefore, notes and an unpublished videotaped interview provide much of the material for this case study.

Maria, a twenty-one year old Mexican-American woman, was diagnosed with end-stage renal disease during a routine office visit for acute chest pains. Had Maria lived at home in her small South Texas town, she would have sought a remedy through a cuarandero, a practitioner of rural folk medicine. However, the excruciating pain in her chest was unbearable and she did not know of a local cuarandero. It is not known how long Maria suffered from these chest pains, but, according to Clark (1970), Mexican-Americans will "try to 'be strong' and often refuse to accept the fact they are sick until they become acutely ill" (p. 198). De La Rosa (1989) writes that:

Age-adjusted data on use of physician visits indicate that Mexican-Americans averaged fewer visits to a physician (3.7) than white and black non-Hispanic Americans (4.8 and 4.7 visits, respectively) and that Puerto Ricans and Cuban Americans averaged more visits (6.0 and 6.2 visits, respectively).

(Trevino, 1984, p. 109)

After undergoing dialysis treatment for two months at a Houston clinic, Maria decided to return to her parents, seven sisters, and three brothers in South Texas. She reasoned that she could receive dialysis in Corpus Christi and benefit from the emotional support of her family who lived 50 miles to the south. Her family had opposed her move to Houston two and a half years before because they felt she should stay with the family in rural Texas, near the Mexican border. Her mother had forewarned her that misfortune could come to her in a big city away from the family.

In a later hospitalization, Maria expressed the concern that she had been punished for leaving her home. As a third generation Mexican-American, her cultural heritage remained very much a part of her. Clark (1970) relates a case study of a Mexican woman who suffered from gastrointestinal upsets after moving to the United States as punishment for leaving her home for am "artificial environment." Clark writes that illness:

... is a means of dramatizing to others the evil consequences of cultural change and of defending the 'old ways'-Mexican customs and traditions which are under constant attack in the United States, This is done by attributing disease to the demands of Anglo society or to ways of American life which are uncongenial to the patient.

(p. 201)

Rosen (1990) writes that "ethnic characteristics are transmitted through the generations and are part of the historical makeup (vertical influence) of the family in the present" (p. 148). Sotomayor (1989) offers a logical explanation of how the cultural heritage is retained by even a third generation Mexican-American when she explains the "Culture of Migration... gets renewed and revitalized on an almost daily basis on this side of the border, reaffirming its symbols, values, beliefs and customs to pass on to the next generation" (p. 58).

Case Assessment

I was asked to work closely with Maria because the nephrologist reported that "she is a very unmanageable patient and we can ill afford any disruptions. I'm also concerned that she refuses to follow her medications." Strauss and Glaser (1975) suggest that noncompliance of the medical regimen may relate to denial of the disease. They report that "if the patient simply denies that he has the disease, he may refuse to submit to a regimen or may only minimally carry it out" (p. 25). Hyland (1978) suggests that it is common for patients to react to scolding from the medical staff by deliberate noncompliance with medications.

In our first meeting it was apparent that Maria was deeply distressed. She bitterly criticized virtually every facet of the hospital's operations, from the nurses to the food. "The food, if you want to call it that, is sickening," she stressed. "If I could just have some of Mamma's came guisada or maybe some chicken mole. Oh God, if I could just return to the good old days, even if just for a few moments," she bemoaned. Parkes (cited in Schneider, 1984) reports a yearning to return to the "good old days" before the loss occurred (p. 132). For Maria, the "good old days" signified a family "fiesta" embellished with Mexican food and music, attended by her parents, brothers and sisters, grandparents, aunts and uncles, and cousins. "How much must one give up to get well? My whole culture?" Maria felt a keen sense of cultural loss from hospital policy preventing Mexican food and music, and her family's cohesiveness was threatened by a rule disallowing visitation by her sister based on age. She also angrily criticized the dialysis nurses whom she described as "uncaring, efficient witches dressed up as nurses. Why they even threatened to make me take dialysis alone in that room, separate from the unit, if I didn't keep quiet."

Maria related a situation that occurred immediately before she dialyzed for the first time. A dialysis nurse asked her how she was doing and Maria began what no doubt developed into a bitterly critical dissertation on the hospital's state of affairs when suddenly a nurse "cut me off and said I'd feel a lot better and get well faster if I'd stop complaining so much. Oh, yes. She also said 'don't worry about a thing, honey. Just sit back and we'll take care of everything,' Can you imagine? My first day of dialysis in this stupid hospital and I'm hooked up to this monster that looks like an umbilical cord!" Rosen (1990) identifies a "Preparatory Phase" (Phase I of anticipatory grieving) in which "the blame is often placed on 'stupid doctors' who have given bad advice or on 'insensitive nurses'" (p. 73). On the other hand, Maria may have been realistic about the nurses' treatment of her.

Maria's autonomy was assaulted by the many hospital rules, the dialysis machine, the emphasis on efficiency and seemingly everything being done for her. She felt emotionally suffocated, helpless, and without control. "Learned helplessness" is often experienced by chronically-ill patients who experience a deep loss of control over their medical decisions. Seligman (1975) warns that depression develops from a sense that one's situation will not change, no matter what action is taken. Kalish (1985) describes the term "learned helplessness" is used to refer to an emotion and related behaviors that occur when people believe there is nothing they can do to avoid punishment or to obtain satisfaction.

Strauss and Glaser (1975) caution that there is an extreme vanation between the amount of responsibility the patient assumes at home and that allowed at a hospital. Frequently, the patient assumes "almost total responsibility when... at home, and the medical staff will assume most of the responsibility when the patient is hospitalized" (p. 144), Strauss and Glaser (1975) write that staff members can "thereby not only save themselves much trouble with so-called difficult patients but greatly contribute to the betterment of the care" (p. 144) by considering the patients' views in treatment planning.

Clearly, if Maria were to benefit from her care, she would need to participate in the treatment plan, gain some control over decision making, and become empowered regarding choices. These are key issues in the hospice philosophy of care which were not well-known in hospitals at that time. Issues with the nursing staff required attention as well. The nurse had misunderstood Maria's anger, she interpreted Maria's attack as personal, and her recourse was the punitive threat of isolation. Maria had said, "I am depending on the staff for everything and I hate them for this. I sometimes feel that I can't do anything for myself, and I've always been such an independent person." Maria further described the feeling as being "stripped of everything. My personality, my whole self is being stripped. The doctor does this and the technicians and nurses do that for me. My food is delivered to me and I have no choice in selecting it. It's got to the point where I often wonder if I am capable of doing anything for myself." I wasn't clear how she could address these problems since the hospital's authority seemed difficult to challenge or change.

Whenever Maria suffered a relapse and required additional dialysis and medical care, the medical staff provided increased attention; then, when personal interactions with her diminished, she would return to a deeply depressed state. The staff also made an effort to exert greater control over Maria's life, as was evident by limiting visitations by family and friends. In an almost punitive, nagging manner, Maria would be reminded of what would happen should she not follow her strict diet and medications, and that meant absolutely no Mexican food from her mother and sisters. The staff's attitude toward Maria was paternalistic and condescending.

The nephrologist advised Mana about what he would do for her rather than involving her in the planning and decision-making processes. Although Maria would never fully regain the life she had before beginning dialysis, one of my goals was for her to regain some semblance of the autonomy and independence she had before the imposition of a highly stringent, regimented medical plan of care. She desperately needed to exercise some autonomy and control over her life.

Besides hypertension and end-stage renal disease, Maria learned that she was diabetic and that her heart was malfunctioning. The nephrologist informed her that she would need heart surgery if she ever expected to live a normal life. Maria countered with "I am sick and tired of having my body abused. You people stick me every time I'm hooked up to that horrible machine. Three times I've had surgery and it hasn't helped. You refuse to treat me as a whole person with feelings. Now this! No, I will not allow you or anyone else to butcher me anymore. If I die because I refuse another operation, then so be it!" Cassell (1974) reports that in our technologically-oriented society terminally-ill patients are frequently treated as objects and not as people with feelings.

The Cuarandero’s Role

On several occasions, Maria had sought the services of a cuarandera, whom she was convinced provided more effective treatment than did the physicians. In Mexican folk medicine a cuarandero is a spiritual leader with healing powers. It is common even in the U.S. for Mexican-Americans to seek out cuaranderos rather than physicians. According to Falicov (cited in McGoldrick, Pearce, & Giordano, 1982),

The use of folk medicine occasionally surfaces when treating families of Mexican descent who maintain two systems of beliefs and practices regarding illness and health, The most prevalent [sic practice] is modem Western medicine, but some families still practice curanderismo [sic] (rural folk medicine) either before, after or simultaneously with modern remedies.

(p. 146-147)

Because treatment is holistic and involves a deep concern for spiritual needs, it is not surprising that cuaranderos can claim a relatively high success rate in the treatment of psychosomatic illnesses. Cuaranderismo, unlike modern Western medicine, stresses the significance of interpersonal relationships.

The cuarandera is perceived by patients as more than a practitioner. Accord...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Preface
• Report from the National Task Force on Access to Hospice Care by Minority Groups
• EDITORIAL ESSAYS
• RESEARCH REPORTS
• Index