Ask the Hospice/Palliative Care Doctor
I have heard that hospice care can be for much longer than just for the last few days or weeks of life, but I don’t understand how that works and why I would ask for such services?
Answer from Dr. Ratner: Most people enroll in hospice for only a few days or weeks, but this is unfortunate. The comprehensive team approach offered by hospice programs is intended to make a person’s last months of life as good as possible and to relieve some burden from family caregivers. There is no limit to how long someone can be enrolled in hospice if they remain so ill that life expectancy going forward remains less than 6 months. For those dying from CLL, enrollment in hospice may be appropriate when it is clear that there are no more treatments available or desired by the patient. Such patients are typically symptomatic from anemia or infections and are likely to have had significant weight loss and fatigue. Yet, death from progression of CLL may be many weeks or months away. In the meantime, hospice is probably the best service available to avoid hospitalizations or emergency room visits, as hospice programs can provide 24 hour on-call services and urgent home visits. Unlike home health care benefits, hospice can provide home care assistance even if the patient wants to continue going out socially or even to work. The expensive drugs for CLL will almost never be covered by hospice. Transfusions are not prohibited by policy, but many hospices decline to cover them except in extraordinary situations.
As treatments have expanded and improved for CLL, most people with CLL are likely to die of other diseases. Hospice enrollment for heart or lung failure or neurological diseases does not preclude ongoing treatments (e.g. medications) for CLL. Hospice programs should not pay for medications for CLL if enrollment is for another condition.
Most hospice programs will provide free, no-obligation informational visits. Patients considering discontinuing treatment for CLL should discuss options and future care with a hospice program as part of the decision-making process.
