Questions submitted by readers and answered by the CLL Society Medical Advisory Board
By Ed Ratner, MD
I have occasionally been seen by the Palliative Care Doctor on staff at my Hematologist’s large Oncology Practice. A recent PET scan indicates I’ve developed Richter’s Transformation pending biopsy confirmation. I have been looking into treatment options and clinical trials as well as interviewing a highly regarded local hospice provider that also has an outpatient palliative care program. Do you think it would be beneficial to transfer my palliative care to the hospice provider in order to establish a relationship and perhaps make for a smoother transition to hospice care when the time comes?
Answer from Dr. Ratner: This question offers an opportunity to address many aspects of hospice and palliative care. First, it is great to hear that your oncology practice includes palliative care among its services and for someone with CLL to have the opportunity to meet with such a specialist at various times during the course of the illness.
Second, Richter’s Transformation is usually, but not always, associated with poor survival. Prognosis depends upon pathological characteristics of the biopsy of the lymph node. There are subtypes of Richter’s that have life expectancies of over 4 year. It is very painful to wait for biopsy results, but decisions about treatment options or hospice should be postponed until lab reports can be reviewed.
Third, enrollment in hospice requires a life expectancy of less than 6 months. Some people even with more aggressive forms of Richter’s transformation may expect to live longer than that, with treatment.
Fourth, it is only very rarely possible to obtain chemotherapy while on hospice. (The Veterans Administration is more flexible than other insurers about this.) A role for the palliative care specialist is to help a person with Richter’s Transformation to decide whether to pursue uncomfortable or expensive treatments, particularly when they may only extend life for months.
Fifth, primary care providers, oncologists, and outpatient palliative care specialists can all continue to provide care after enrollment in hospice. The medical directors of a hospice program, generally certified specialists in palliative care, can take over primary care for the hospice diagnosis but hospice programs are unlikely to offer outpatient consultations. Only some hospice medical directors are available for home visits beyond the ones required by regulations (e.g. six months after enrollment, to certify continued eligibility).
Sixth, once you are eligible for hospice, don’t postpone enrollment. You do not need to feel sick or even quit work before enrollment in hospice. It takes some weeks to get to know the hospice staff. A well-established relationship with the hospice team is enormously valuable when a crisis occurs, such as new symptoms or needing more help to remain at home or comfortable.
In summary, wait for biopsy results. I would recommend you then talk to your oncologist about prognosis and treatment options. Talk with the clinic’s palliative care specialist about concerns regarding treatments offered and match your choice to your life goals. If/when you choose to forgo further chemotherapy, enroll in hospice. Continue seeing clinic-based providers as needed.
Hope this helps with an evolving situation. Know that we are here for you to help in any way we can.
Dr. Ratner is an internist who specializing in geriatrics and hospice/palliative care. He currently serves as Associate Director of the Geriatrics Education Research Clinical Center (GRECC) at the Minneapolis VA Medical Center and as an Associate Professor at the University of Minnesota Medical School. He is also a member of the CLL Society’s Hospice and End of Life Committee.