Most Americans surveyed about their preferred place of death say they want to die at home.1 Nevertheless, many dying people are not able to realize this wish. One 2003 study found that nearly 90% of terminally ill cancer patients asked to choose where they would prefer to die cited their homes. Only one-third of those patients were able to make this desire a reality.2
The reasons behind the divergence between preference and actual place of death are complicated, says Rachelle Bernacki, MD, MS, assistant clinical professor, Geriatrics and Palliative Care, and a palliative care specialist with the University of California, San Francisco Medical Center Hospitalist Service. “I think most people envision … [dying] at home, but sometimes that’s just not feasible, for multiple reasons. When the reality sets in, there has to be a good plan in place at home—meaning, enough people and resources to keep that person at home.”
Is Death Imminent?
Dr. Bernacki points out that many studies on dying preferences are conducted when the patient is not ill or actively dying. The scenario becomes much more complex when patients are in crisis or on an end-of-life trajectory. In initial assessments, hospitalists should try not only to ascertain the patient’s health status but also to ask respectfully about their goals for care.
“It might not be appropriate [to ask] every patient, ‘Where do you want to die?’ ” suggests Dr. Bernacki. It can be appropriate, though, to ask patients about their experiences with their current illness and to talk about some of the goals they hope to achieve in the next week or month.
Although it is not possible to predict exactly how long a person will survive, the signs of critical illness can provide an appropriate window in which the physician can ask a patient, “If you were to die, where would you want to be, and what is most important to you?”
—Rachelle Bernacki, MD, MS, assistant clinical professor, Geriatrics and Palliative Care, UCSF Medical Center Hospitalist Service
Practitioners skilled in end-of-life care cite several attributes characteristic of patients who are actively dying, such as:
- Refusal of food and liquids;
- Decreased level of awareness;
- Dyspnea (shortness of breath), including erratic breathing patterns;
- Mottled skin that is colder to the touch, along with blue toes; and
- Abnormal breathing sounds due to secretions in the lungs.
Honor Their Choices
Researchers cite many factors that determine whether a terminally ill cancer patient dies in the home or in an institution, including gender, race, marital status, income level, and available health system resources. In a Yale (New Haven, Conn.) epidemiological study, men, unmarried people, and those living in low-income areas were at higher risk for institutionalized deaths.3
Dr. Bernacki has found that the two most important determinants of whether a patient will go home to die are the patient’s condition and their resources at home. Sometimes transporting a patient is not practical because the patient may be so close to dying that there is a risk of death en route. Or the patient’s symptoms may not be controlled with oral pain medications and may require frequent IV dosing, in which case discharge is not feasible. Barriers at the home site include the lack of an identified primary caregiver and the unavailability of qualified hospice personnel and/or medical supplies.