Homeless and Dying: Cultural Issues in End-of-Life Care

Betty Ferrell, PhD, RN

Disclosures

June 14, 2012

The Culture of the Poor

Cassandra and her 14-year-old daughter Kendra have been residing in a homeless shelter in Los Angeles. Cassandra is 30 years old; is an alcoholic and a drug user; and has moved from one city to another for the past 8 years, always homeless and unemployed. She moves so that she can retain custody of her Kendra by avoiding Child Protective Services.

Cassandra and Kendra are extremely close, and Kendra sees her mother as her hero, always protecting and guiding her. They have had no contact with Kendra's biological father for years, and Cassandra states, "He's probably dead by now, but if not, I don't want him found."

One week ago, Cassandra was taken to the emergency department of the local hospital by staff of the homeless shelter after she developed extreme nausea, vomiting, fever, and dehydration. She was found to be in end-stage liver and renal failure, and she also is HIV-positive. The hospital arranged for her placement in the public hospital's inpatient palliative care unit, where it is estimated that she will live only a few weeks.

To honor Kendra's desperate plea to be able to care for the mother, whom she says "has never left me alone for a day of my life," the homeless shelter is attempting to work with social services staff to allow Kendra to stay with her mother at the hospital and return at night to the shelter. Given the short period that Cassandra is expected to live, representatives of social services, child protective services, the palliative care unit, and the homeless shelter are attempting to delay Kendra's foster home placement until after Cassandra's death.

Taking Care of Mom

Cassandra and Kendra spend every possible hour together. Kendra cares for her mother and especially enjoys the clean room where she is able to bathe her mother, clean her hair, and apply lotion to her skin. A hospice volunteer has provided clothes and shoes for Kendra so that she is comfortable being at the hospital and has also coached her in how to give her mother massages and safely move her to the bedside commode. Kendra becomes very anxious and even angry if the nurses try to bathe or provide personal care to her mother.

Cassandra and Kendra express a desire to be left alone. They speak of Cassandra's death but also pray intently for a miracle. Both become very anxious by any encounter with the hospital staff and are confused by any discussion of Cassandra's medical status or medications. The staff think that both are illiterate and believe that they have had many negative encounters with the healthcare system. The staff sense that Cassandra is having severe pain, but she will take pain medication only after Kendra leaves for the night.

Resisting Help

The palliative care team is anxious about Cassandra's care, and they realize from her limited intake, greatly declining urine output, jaundice, and increased somnolence that she is rapidly declining, and she will probably die within days. Cassandra and Kendra have declined involvement by the social worker and have told the volunteer that they are fearful that Kendra will be taken away. They have avoided the chaplain, but today Cassandra said maybe it would be good if he could visit her. Cassandra likes to give her daughter advice on life, and she speaks of her hopes for her daughter's future. Both are tearful most of the time but seem at peace with the idea of Cassandra's death.

The plan, agreed upon by all, is that after Cassandra's death, Kendra will go to a group foster home, a placement that has already been arranged. Some of the palliative care staff are concerned that Kendra will disappear as soon as her mother dies and return to the streets. Today, Kendra told the nurses that she wants to be alone with her mother when she dies, because "it has been just the two of us since I came into the world and should be just the two of us when she leaves."

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