An Isolated Patient Who Wants to Die at Home

Case:

Mary was a 58 year-old woman who was admitted to the hospital for management of a wound infection. Her past medical history included severe peripheral vascular disease, and she subsequently had bilateral, above-the-knee amputations. Her stumps were very necrotic, and did not respond well to antibiotic therapy. To further complicate her story, a routine imaging scan found suspicious lesions on both her lung and liver. This finding was highly suspicious for metastatic cancer since she also had a smoking history, significant weight loss and decreased appetite. Mary’s primary physician encouraged her to pursue a cancer workup, but she refused. She also decided that she did not want to pursue any other aggressive medical therapies that may prolong her life. Her only goal was to go back to her apartment where she could die in peace. The palliative care service was asked to become involved to help with discharge planning.

Since Mary previously lived alone, this was going to be a very difficult task. During her hospital stay, she became increasingly delirious, and it was clear that she would not be able to return home. We attempted to contact all of her relatives to recruit help. No one was able to take responsibility for her care at home, even with hospice assistance. So we attempted to make her hospital stay as pleasant as possible while these complicated issues were sorted out. We recruited a volunteer to sit with her several times per week to keep her company. Her delirium and agitation improved with the use of antipsychotics. Her pain had also improved after careful titration of her opiate and adjuvant medications. We also paid for a beautician to visit her here in the hospital. Mary was ultimately discharged to a local skilled nursing facility. To ensure continuity, our medical student on service wrote a letter to the attending physician there. We included some of the details of the care that we provided. We suggested that it would be very appropriate to provide Mary with some “luxuries” that would normally be contraindicated in her care such as milkshakes or ice cream.

Discussion:

Patients who do not have family or caregivers can create very challenging situations for hospital staff. Under usual conditions, palliative care extends the focus of care to family and friends of the dying patient. Family members are encouraged to create a home like environment in the hospital. Family photos, favorite music, or a blanket from home can make a hospital stay more pleasant. Patients that are alone often miss the comforts of home. According to Ferrell & Coyle, 2001, the discipline of palliative care provides physical, psychological, social and spiritual support to help the patient adapt to the anticipated decline, associated with advanced, progressive, incurable disease. Palliative care also alleviates isolation through a commitment to non-abandonment, ongoing communication, and sustaining relationships. The role of the volunteer and the medical student in this case was crucial. Volunteers are an integral part of the hospice and palliative care philosophy and approach. Beyond extending the available personnel, volunteers put a truly human, non-professionalized face on the provision of care.

References:

1. Ferrell, B.R., and Coyle, N. Textbook of Palliative Nursing. 2001. Oxford University Press, New York, 684.

2. Mount, B.M. Volunteer support services: A key component of palliative care. Journal of Palliative Care, 1992, 8(1):59-64. (no open access pdf)