Home
Kimberly Indovina, MD Feb 14, 2023
In palliative care, we routinely ask patients where they prefer to spend their last days. Statistically, most prefer to die at home, and in my practice, “home” is certainly the most common answer I hear. What happens, though, when “home” isn’t across town, but rather across the world? In my urban safety net hospital setting, we care for an increasingly diverse patient population, including many patients who have immigrated to the United States. These patients, when faced with a terminal prognosis, sometimes express a goal of returning to their country of origin to die and be buried there. Of course, international travel poses numerous logistic challenges for someone with an end-stage serious illness and related symptoms or other care needs. Further, unlike the relatively robust and accessible hospice system in the US, resources for end-of-life care vary greatly in other countries. Depending on a patient’s destination, it may be prohibitively difficult to access – or to afford – provider visits, symptom-focused medications, and/or home services at the end of life.
Recognizing the increasing frequency of these requests to facilitate travel to one’s home country, my palliative medicine team is drawing upon our collective experience and knowledge to standardize our approach to these patients to maximize the chance of a successful transition of care. This includes compiling comfort medication packs similar to what might be used in hospice care, creating clear written directives and other documentation a patient might need during travel, educating the patient and family carefully on safe medication administration and other common needs that may arise during travel, and determining what resources might be available at the patient’s destination.
The unfortunate reality, though, is that many patients who wish to their country of origin don’t ultimately make it “home”. One of these patients was Genet, an elderly woman who had immigrated from Eritrea about ten years ago. (Her name and country have been changed to protect privacy.) A few years ago, she underwent resection of a sigmoid colon cancer, but chose to forego adjuvant chemotherapy. Six months ago, her cancer recurred and caused a malignant bowel obstruction, for which she underwent palliative stenting. She subsequently experienced a gradual functional decline, though nonetheless maintained an acceptable quality of life in the care of her children and grandchildren. Now, she found herself in the emergency department with acute abdominal pain, nausea, and vomiting. Her initial workup diagnosed sepsis due to malignant bowel perforation, and she was not a safe surgical candidate. She and her family agreed to comfort-focused care, and she was admitted to the hospital for symptom control.
Genet’s family told us that she wished to die and be buried in Eritrea. “Could she fly there?” they asked. Unfortunately, Genet’s survival prognosis was on the order of days. She was medically unstable, bedridden, and required frequent medications for pain and nausea. Our team unanimously believed she would suffer distressing symptoms en route and would not survive the journey. Genet and her family were disappointed but accepted our recommendation for local home hospice care instead. She was discharged with home hospice support the next day and died peacefully a few days later.
In the months prior to this hospitalization, several clinicians had engaged Genet and her family in goals of care discussions; however, the goal of travel had never come up. What might have happened had we inquired specifically about any desire to return to Eritrea? Perhaps we could have helped Genet find a window of opportunity to travel safely before her terminal acute illness occurred. This window is often narrow and elusive, and patients may not ask about travel before the window closes. When treating seriously ill patients who might wish to return to their country of origin near end of life, clinicians should routinely inquire about travel-related goals. By facilitating earlier discussions, we might be able to help more patients achieve their desired death “at home”.