Download Cultural Considerations in End of Life Care

Module 5: Cultural and Spiritual Considerations in End-of-Life Care
Case Studies
Please Note:
All case studies are intended to be generic so that substitutions can be made, according
to your own clinical roles. For example, if a case study mentions a patient with a medical condition, you
can substitute the disease cancer, so that it would be appropriate for oncology nurses, or visa-versa. You
may also insert APRN for nurse practitioners, clinical nurse specialists, etc. In addition,
hospice/palliative care nurses can review each case study, as though they were consulting on each of
these case studies. Feel free to adjust the case studies so they are relevant to your participant’s clinical
needs.
Module 5
Case Study #1
Mr. Li: Cultural Divide between Family & Interdisciplinary Team
Case:
Mr. Li is a 65-year-old Chinese-American man, diagnosed one year ago with lung cancer. The
patient has been told by his family that he has a “lung disease.” Despite the fact that his disease
is clearly advancing, the family insists that he not be told of his diagnosis or prognosis. Mr. Li is
losing weight (20 lbs in the previous two months) and is having increasing back pain and
difficulty swallowing. He lives with his wife in a second floor apartment. His two sons are both
married and live in the area. He denies any religious affiliation. The health care team is
increasingly frustrated with the fact that Mr. Li is not able to fully participate in decisions about
his care and is considering an ethics consultation.
Discussion Questions:
1. What are your impressions regarding this scenario? Is it acceptable, from both legal and
ethical perspectives, to not inform the patient of his diagnosis?
2. How might the team approach Mr. Li regarding issues of diagnosis and prognosis?
3. Describe ways in which issues related to patient self-determination and informed consent can
be approached that respect patient and family values.
Case continued:
While performing a thorough physical assessment during a recent clinic visit, the nurse observes
round bruises over several areas of the patient’s back. As Mr. Li’s disease progresses, he says he
has become more weak and unable to move from bed. When asked how he is feeling, he always
whispers “fine” and denies any symptoms. His wife, Mrs. Li, is tearful that her husband’s
appetite is diminished. She believes he will be cured if only he will eat and that he must try
harder. The nurse observes the patient having difficulty swallowing, potentially aspirating, when
given soft food, and explains this to Mrs. Li, who appears unable to understand.
During a home visit by the home care nurse and social worker, the sons also are present. Mr. Li
is minimally conscious, febrile, tachycardic, and diaphoretic. The oldest son tries to encourage
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Module 5: Cultural and Spiritual Considerations
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Case Studies
Revised: March 2013
Mr. Li to eat. He refuses to listen to the hospice nurse about the possible outcome of feeding his
father and the gravity of his father’s condition. He angrily states that his father is going to get
better and requests antibiotics for the fever. The youngest son, speaking privately to the nurse,
understands that his father is dying. When the nurse speaks about preparations for Mr. Li’s death,
the wife and oldest son are unable to participate in the conversation. The next day, the family
admits Mr. Li to the hospital, where he dies within 24 hours.
Discussion Questions:
4. What are essential components of cultural assessment that could have impacted care for this
family?
5. What aspects of Chinese-American culture are displayed in this scenario?
6. How should the nurse respond to the patient’s use of moxibustion?
(Note: Moxibustion is a form of traditional Chinese medicine technique that involves the
burning of mugwort, a small, spongy herb, to facilitate healing. This often produces a round
burn-like bruise. It is believed to relieve toxins to strengthen the blood and maintain general
health. It is occasionally misunderstood by healthcare professionals as a sign of physical abuse.
These may also be Mongolian spots, which are discolorations of the skin that look like bruises.)
7. What could an interdisciplinary team have done to improve care at the end of life for this
family?
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Module 5: Cultural and Spiritual Considerations
Page M5-36
© COH & AACN, 2007
Case Studies
Revised: March 2013
Module 5
Case Study #2
Mrs. Mendez: Conflicts Among Her Children
Mrs. Mendez is a 72-year-old Hispanic patient with advanced left breast cancer with metastasis
to the lungs and bones. She is referred to your home care agency for wound care services. She
has seven children: five daughters and two sons (all living in California). Her five daughters live
within the Los Angeles area. Her eldest son lives in San Diego and the younger son has been
distant from the family and has not had contact with the family for the last 18 months. Mrs.
Mendez's husband died seven years ago of lung cancer. Since that time she has lived with her
youngest daughter, Maria.
Initially, Mrs. Mendez discovered the breast lump herself but did not seek medical care for over
a year. When Mrs. Mendez was diagnosed, her disease was considered advanced. She refused
to have a mastectomy based in part by her cultural belief that the soul resides in the breast and
should not be removed. At the urging of her children, she did undergo chemotherapy but
recently has experienced increased bone pain and decided to discontinue the treatment regimen.
The tumor in the left breast is now approximately the size of an orange with malodorous,
purulent drainage. Home care was initiated for wound care and other symptom management
services. Under the terms of her managed care/Medicare insurance plan, her care is referred
back to her family care practitioner in her local community rather than her oncologist since she is
no longer receiving cancer treatment.
Mrs. Mendez's condition continues to decline and her physician encourages her to seek hospice
care. Mrs. Mendez has become very close to the home care nurses who provided the wound care
and requests that her care continue with the home care agency rather than a referral to hospice.
At this time, changes in her living arrangements are also made. Living with Maria over the last
seven years has been very positive, but Maria has three young children and the intensive care of
her mother at this stage of the illness is becoming a problem. The family emphasizes that Mrs.
Mendez should move in with her eldest daughter, Gloria, who no longer has children living at
home. Although her daughters have always been close to their mother and more involved in her
care, the eldest son of the family, José, who resides in San Diego, is consulted for all decisions
and has been the father figure of the family since Mr. Mendez's death. Mrs. Mendez's managed
care plan allows for only two RN visits per week and must be reevaluated every three weeks by
the case manager. In addition to the symptom management provided by the home care agency,
Mrs. Mendez and her daughters use many alternative therapies which includes "cat's claw,"
herbs, and visits by a healer. Mrs. Mendez is religious and uses prayer to help cope with her
illness. Her middle daughter, Christina, is devout in her religion and is in absolute denial that her
mother will die. Christina comes nightly and holds a prayer vigil with her mother and also
brings herbs and remedies that "will cure the disease." Mrs. Mendez becomes increasingly
withdrawn as conflicts arise among her children. Gloria and Christina are at odds because Gloria
is most accepting of her mother's impending death. Gloria was also the primary caregiver during
her father's illness with lung cancer.
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© COH & AACN, 2007
Case Studies
Revised: March 2013
After three weeks of care by the home care agency (HCA), Gloria calls requesting that a nurse
come as soon as possible because her mother’s pain is worse. On physical assessment, the nurse
notes that the breast tumor remains dry, however the tumor mass has increased and the breast is
inflamed. The pain is described by Mrs. Mendez as an intense pressure pain at the site of the
tumor in the base of the breast. She also describes a sharp stabbing pain in the left upper
quadrant of the breast. In addition, Mrs. Mendez complains of intense pain in her mid-back
which has made it very difficult to lay in bed and she has been unable to sleep for the last week.
She has been taking one to two Vicodin® every four hours PRN although yesterday Gloria
reports that out of desperation the Vicodin® was given approximately every two hours until Mrs.
Mendez became extremely nauseated. The nurse recalls that morphine was ordered for the
patient a few weeks ago in anticipation of increased pain not controlled with the Vicodin®. Upon
questioning, the daughter states that they have not used the morphine as they were "saving it for
the end." Gloria also reports that the family is trying to minimize the use of the medicine since
their mother is extremely constipated. Gloria continues to relate that the reason her mother is
constipated is because Mrs. Mendez has not been able to continue her herbal remedies due to
nausea. Mrs. Mendez appears very stoic with minimal expression of pain. Her only complaint is
that she no longer is able to have her grandchildren over to visit due to her declining condition.
Mrs. Mendez is initiated on a regimen of long-acting morphine, 60 mg at bedtime with 15 mg
morphine immediate release (MSIR) for rescue dose. Over the next week, the long-acting
morphine is increased to 120 mg BID supplemented with Imipramine 50 mg BID and Ibuprofen
800 mg TID. Christina has now moved into Gloria's home and continues her evening prayer
vigils. José calls several times a day to dictate his wishes regarding his mother's care but has not
been able to visit often from San Diego, as it is over a two hour drive one-way, and is in risk of
losing his job. Gloria seems increasingly burdened with her mother's care and her siblings'
involvement. Gloria follows the home care nurse to the car weeping because of the stress.
Approximately one week later, the nurse receives a call from Gloria reporting that her mother
has seemed to decline rapidly over the weekend. Mrs. Mendez awoke during the night with
difficulty breathing and has been terrified of the possibility of suffocation. On exam, the nurse
notes that Mrs. Mendez has developed extreme shortness of breath. She is also increasingly
fatigued and the combination of exhaustion, dyspnea, and general decline has resulted in
minimal intake of foods or fluids. José called this morning with strict orders that his sisters
continue to feed their mother at all costs. He hopes to be able to come up from San Diego the
following weekend to visit. Mrs. Mendez relates to the nurse that she knows she is dying and
does not want to continue being a burden to her family.
Mrs. Mendez's physical condition has greatly improved due to aggressive symptom management
by the HCA. The morphine dose has increased to 240 mg BID supplemented with 40 mg of
MSIR approximately every two hours for dyspnea. With her breathing improved, she has been
able to take sips of water and occasional amounts of other liquids. Mrs. Mendez's condition,
however, continues to decline and the home care nurse anticipates that she will die within the
next two weeks. The HCA schedules a meeting with the primary nurse and social worker to
discuss the growing tension in the family. Four of the daughters are now present in the home
taking shifts to be at Mrs. Mendez's bedside at all times. To make the family situation more
difficult, Jose has learned that the young brother Pablo is living in Los Angeles and asks Pablo
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Module 5: Cultural and Spiritual Considerations
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© COH & AACN, 2007
Case Studies
Revised: March 2013
that he please visit his mother before she dies. Christina continues her prayer vigils and has
asked members of her church to visit daily to hold prayer meetings with her mother. Mrs.
Mendez tells the nurse that she cannot discuss her impending death with her family because they
do not want to talk about it or hear that she is dying. At this point, Mrs. Mendez is very
withdrawn and has little interaction with her family. Mrs. Mendez has now developed a pressure
ulcer on her buttocks and requires a Foley catheter due to incontinence, which has intensified the
physical care demands of her care.
The HCA receives a call on Saturday evening requesting assistance with Mrs. Mendez as her
condition is declining rapidly. The younger son, Pablo, arrived two days ago and has had a very
tearful reunion with his mother and his sister, Gloria. The social worker and the nurse were very
successful in the family meeting with facilitating communication among the children and
establishing common goals for Mrs. Mendez's comfort. All of the children with the exception of
Christina, seem accepting of the impending death. Gloria's husband, Michael, has been quite
supportive of his mother-in-law's care throughout her illness, but has strong feelings against
death occurring within his home.
The priest is called to give Mrs. Mendez communion and the Anointing of the Sick. The
extended family is at Mrs. Mendez's bedside, except for Christina who is in the kitchen crying.
Source:
HOPE: Home care Outreach for Palliative care Education Project. (1998). Funded by the National Cancer
Institute. B. R. Ferrell, PhD, FAAN, Principal Investigator. Reprinted with permission.
Discussion Questions:
1. Use a cultural assessment tool to identify factors that influence care in this case [refer to
Tables 3 & 6 in Module 5 Supplemental Teaching Materials section].
2. How did culture influence communication with patients and family caregivers in this case?
3. Describe the roles of various professional disciplines in this case. How best could these
professionals coordinate their care?
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Module 5: Cultural and Spiritual Considerations
Page M5-39
© COH & AACN, 2007
Case Studies
Revised: March 2013
Module 5
Case Study #3
F. L., a Near-Drowning Victim
F. L., a 20-year-old Pakistani boy suffered a near-drowning episode that compromised his central
respiratory drive mechanism and left him neurologically devastated. His family was informed
that life-sustaining medical interventions were futile. They agreed to move him to the Butterfly
Room (a specialized palliative care room) to achieve a family-centered death. Orders not to
resuscitate were written in a clear and detailed manner. All laboratory analyses were
discontinued, and all monitors were removed. Medications were reviewed and all were
discontinued. Morphine and lorazepam were added for the management of dyspnea, I.V. fluids
were discontinued, and scopolamine was administered for terminal secretions. One intravenous
catheter was left intact, but all other invasive monitors, such as nasogastric tubes, urinary and
arterial catheters, etc., were removed. During his transfer from the ICU to the Butterfly Room,
he remained mechanically ventilated.
Although F. L. has a small family, he belonged to a close-knit community. Thirty people of all
ages came to be with him on his final day of life. They encircled the boy's bed, chanting but not
touching him. After approximately 30 minutes, they approached the team and announced their
readiness for the discontinuation of mechanical ventilation. One caregiver stated that she was
unfamiliar with Pakistani traditions and customs, but had not observed anyone touching F. L.
She suggested that if touching was allowable and desirable for them, they were welcome to do
so. The whole spirit of the group changed, with the circle drawing nearer the bed and men
openly grieving and weeping, holding the young man and their wives, as well as each other.
People stroked F. L.'s face and body. After an hour, they again informed the team that they were
now ready to have the mechanical ventilation discontinued.
F. L. was suctioned and extubated and needed little pharmacologic intervention. His loved ones
chanted from the moment the endotracheal tube was removed. Each visitor, in turn, put small
amounts of holy water in his mouth. Although the water bubbled out of his nose, a caregiver
wiped it away, giving "permission" for the next person to engage in the ritual. After 27 minutes
of non-stop chanting, F. L. died. A peaceful hush fell over the room, and all eyes turned to the
same window, leading to the outside.
Source:
Levetown, M., Hellsten, M.B. & Jones, B. (2010). Pediatric care: Transitioning the goals of care in the emergency
department, intensive care unit and in between. In B. R. Ferrell & N. Coyle. (Eds.), Textbook of palliative
nursing (3rd edition) (pp. 1040-1041) New York, NY: Oxford University Press. Reprinted with permission.
Discussion Questions:
1. What culturally based beliefs and practices are evident in this case?
2. What are the strengths and weaknesses of the care reported in this case?
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Module 5: Cultural and Spiritual Considerations
Page M5-40
© COH & AACN, 2007
Case Studies
Revised: March 2013
Module 5
Case #4
Ms. Richards: Lonely & Isolated
Ms. Richards is a 52-year-old African-American woman diagnosed with a metastatic ovarian
cancer. Prior to being diagnosed, Ms. Richards was employed full time as a nurse in a local
nursing home. Though she is reluctant to impose, as a single woman, she needs to rely on family
members for transportation to the clinic for treatments and multiple office visits for blood work
and follow-up appointments. The treatment regimen leaves her exhausted and unable to work.
She takes an extended leave of absence, but soon she faces the reality that she cannot return to
work in the near future and resigns her position. She begins paying for her insurance through
COBRA, but wonders how long she can afford to pay, as she does not have any income and her
savings are dwindling. She is having difficulty eating because of severe mucositis. While she got
a prescription for a mouthwash to help with swallowing, she decides not to fill it, since her
insurance does not cover the costs, and it is expensive. Many of her medication prescriptions go
unfilled for the same reason. Ms. Richards declines invitations from friends and family members
to get out, stating she is very busy, but will try to see them soon. In the meantime, she spends her
days alone, wondering whether or not to fight anymore.
Discussion Questions:
1. Discuss the many barriers to adequate care highlighted in this case.
2. What interventions might the nurse initiate to address some of Ms. Richards concerns?
3. In assessing Ms. Richards at each visit, name issues that should be included, but are possibly
not being addressed.
4. Which interdisciplinary team members are critical to get involved in Ms. Richards care?
5. How often should psychological, social and spiritual issues be revisited during the course of
treatment? Who should be responsible for addressing these?
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Revised: March 2013
Module 5
Case #5
Ms. Thomas: A Multitude of Family
Ms. Thomas is a 54-year-old African-American widow, mother and grandmother who lives with
her daughter and four grandchildren in a 4-story walk up apartment. She is an active member of
her church community, and friends commented that she had so much energy that she exhausted
all of them just being around her. At age 51, she was diagnosed with non-Hodgkin’s lymphoma.
Busy with raising her grandchildren, 4 months went by before she sought attention for her
symptoms and was diagnosed. Despite aggressive treatments with chemotherapy and radiation,
her disease progressed, and she was considering undergoing a bone marrow transplant (BMT).
Climbing the stairs to the apartment one afternoon, she became very short of breath and
collapsed. Her ten year-old granddaughter called 9-1-1. At the hospital, she was minimally
responsive and in severe respiratory distress. She was intubated and transferred to the ICU. A
family meeting with the oncology and ICU team was called to discuss Ms. Thomas’s advanced
condition, the fact that she would probably not survive further treatment of the lymphoma, and to
decide on goals of care. Fifteen family members arrived, including her daughter, pre-teen
granddaughter and grandson, three nieces, four nephews, several friends from her church and the
minister. On being asked that only the immediate family participate in the meeting, the family
and friends became angry, and insisted that all of them be involved in this discussion.
Discussion Questions:
1. Detail the physical, psychological/emotional, social and spiritual aspects of the case.
2. Discuss ways that a team might anticipate possible concerns that may arise during the course
of an illness. How would you go about assessment and reassessment of key areas?
3. Discuss what kind of assessments and attention to continuity of care might improve
communication in this case.
4. What are other concerns you have with this case and what do you anticipate would happen
next?
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Module 5: Cultural and Spiritual Considerations
Page M5-42
© COH & AACN, 2007
Case Studies
Revised: March 2013
Module 5
Case Study #6
Mrs. Tran: Desire for Herbs from Her Own Country
You have just arrived at the home of Mrs. Tran who is a 75-year-old Hmong woman
that you are to admit to the hospice program. She has lived in the United States for about
five years and speaks little English. She used to live in San Francisco with her son, but after
several disagreements about his failure to follow Hmong traditions and his lifestyle, she moved
to Minneapolis to live with her daughter, Susie.
Susie has been in the United States for 25 years and is a waitress at a local Vietnamese
restaurant. She has five children from her previous marriage and is currently not married. Her
spouse’s whereabouts are unknown. Mrs. Tran lives with Susie in an older house in a lower
socio-economic neighborhood with three of her children, one with two children of her own. The
two children, ages 11 and 12, are expected to watch over their great-grandmother after school
while Susie is working. There have been some truancy problems and quite a few conflicts over
the girls’ responsibility to the family.
When you arrive for the hospice visit, Susie is waiting to act as the translator but must leave in
30 minutes to get to work; she can’t be late. After the mother’s last hospital admission, the
hospital staff suggested Mrs. Tran be placed in a nursing home, but Susie believes that it is her
responsibility to take care of her mother at home until she dies. Susie states that she had a hard
time understanding “all that medical stuff.” Usually someone is always at home, but
occasionally the daughters don’t come home from school and Mrs. Tran is at home alone. The
neighbors, also Hmong, try to keep an eye out for Mrs. Tran and watch to make sure that she
doesn’t wander around outside. Susie confesses that she has a hard time getting her mother to
take her medications. Mrs. Tran believes that, at best, Western medicine doesn’t do any good
and, at worst, may be harmful. She prefers alternatives, especially herbal medicines from
Vietnam.
There is only a partial medical history available, which indicates that Mrs. Tran has received care
from various clinics and urgent care settings. There is a record of her last admission to the
county hospital for pneumonia, and her outpatient chart from her county clinic admissions.
Discussion Questions:
1. What is the overarching goal in this case? Discuss the challenges of “continuity” of care.
2. What strengths and resources do the patient and family have for seeking medical care?
3. What additional information is needed?
4. Discuss goals that an interdisciplinary team (IDT) would consider in the care of Mrs. Tran.
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Module 5: Cultural and Spiritual Considerations
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Case Studies
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Module 5
Case #7
James: Seeking Assistance to Determine Future Care
James is a 32-year-old gay man who has been seen in the oncology clinic with a diagnosis of
testicular cancer diagnosed eight years ago. James delayed seeking medical treatment when
symptoms first appeared believing that his symptoms were perhaps related to AIDS. However,
his initial course of chemotherapy showed response. Unfortunately, he had a recurrence with
extensive metastasis to the pelvis and most recently metastatic disease in the liver, spine, and
lung. James’ partner, Don, has been his constant companion at each of the clinic visits and has
been very attentive to his needs as his disease had advanced. James and Don have recently
expressed concern about “what it will be like at the end,” and have explained that in the late
1980s, they both experienced the death of several friends from AIDS whose symptoms and endof-life care were poorly managed. Don is the custodial parent of his 11-year-old daughter from a
previous marriage. The daughter, Angie, came to live with Don after her mother died from a
drug overdose. Don’s parents are very close to Don, James, and Angie. However, James’
parents have been estranged from their son since he revealed that he was gay. James currently is
experiencing severe bone pain, mild to moderate dyspnea, anorexia, and nausea. James and Don
are in the clinic today for a follow-up visit, and have asked if you, the oncology nurse specialist,
might have some time to talk with them to help them with symptom management concerns, and
also to help them determine if he should continue with the clinical trial that he is currently on.
Discussion Questions:
1. What are special considerations of this family situation and the relationships that might
warrant attention by the oncology nurse?
2. What patient education is needed for Don and James regarding symptom management?
3. What assessment and support should be considered for other members of the family
including Angie and the parents?
4. How might you respond to their request for your input on the decision to continue the clinical
trial or to discontinue participation and begin hospice care?
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Module 5: Cultural and Spiritual Considerations
Page M5-44
© COH & AACN, 2007
Case Studies
Revised: March 2013
Module 5
Case #8
Sophia: Many Problems, Many Fears
Sophia is a 62-year-old Russian woman who was diagnosed with Stage IV breast cancer one year
ago. She lives in low-income housing, and her only source of income has been disability based
on her previous work experience as a cleaning woman in a local factory. She has no health
insurance and no family financial support. Over the past few months, two of her sons have
become unemployed, and both also have histories of substance abuse and over time both have
been incarcerated. Sophia is seen in the county hospital oncology clinic. She didn’t show up for
the last two scheduled chemotherapy appointments, but has come to the clinic now. She states
that she has decided to stop chemotherapy as it is just too difficult to arrange transportation due
to recent public transportation strikes and the fact that she lives too far away from the hospital.
Sophia is often depressed, but her sons say that this is no different than she has been all of their
lives and that they believe that she is just “tired” and ready to “go to her Maker.” She is hopeful
that her landlord will not evict the family from their apartment in the upcoming months and that
one of her sons might find employment soon.
Discussion Questions:
1. As the nurse in a clinic setting, what are your thoughts about her future care as she decides to
discontinue active treatment?
2. How might her beliefs about end-of-life care be influenced by her personal and family
experiences?
3. What options might be considered in terms of follow-up care for her?
4. What are cultural considerations of patients who live in poverty or low-income situations that
influence issues of symptom management, grief, and end-of-life decision-making?
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Module 5: Cultural and Spiritual Considerations
Page M5-45
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Case Studies
Revised: March 2013