Hospice Transition And Hematologic Malignancies

Hematologic malignancies are poorly represented in hospice populations. There are several reasons for this. Patients continue to receive palliative therapies including blood transfusion, platelet transfusions, and recombinant erythropoietin which hospices (because of capitated reimbursement) cannot afford and thus do not support. It is hard to not give antibiotics or blood product transfusions while a patient remains hospitalized. Thus, transfusions are usually continued until the patient's performance score is so poor that he or she cannot attend an outpatient clinic and there may not be time to refer to hospice. Radiation for the relief of bone pain in myeloma and soft tissue pain in lymphoma is expensive. Some hospices cannot afford even single-fraction radiation. In addition, a significant number of myeloma patients, as well as patients with amyloid, will be on dialysis, which precludes hospice care due to financial constraints. Newer targeted specific agents, including monoclonal antibodies, proteasome inhibitors, and thalidomide, are palliative but expensive and delay hospice transfers, again for cost reasons.

Prior to each change in treatment and with each relapse, the goals of care (and therapy) should be reviewed with the patient. The understanding by the patient as to the intent of treatment, and what is meant by "treatment," can be widely divergent. Patients may believe they are receiving curative therapy while physicians have palliation and disease maintenance in mind. Discussions about advanced directives are important early in the course of disease, particularly for chronic leukemias, myeloma, and amyloid. This is sometimes difficult for physicians, as they recognize that patients assume by such conversations that they are terminally ill. Advanced directives should be portrayed as an extension of autonomy in the face of an unpredictable disease course ("hoping for the best but planning for the worst," which is a good way of introducing the subject).

Hope can be fostered in those with advanced or incurable hematologic malignancies. Patients should be taught that they can live with their illness rather than die from their disease. Hope can be defined in increments that are achievable: hope to have symptoms relieved, hope to have a series of better days, hope to live to an important date, hope to have life closure. Inquiry into prognosis is a teachable moment. It is better that patients and families see what is evolving than physicians foretell the date of death. Patients and families value knowledge concerning the symptoms and signs of the dying process. Quantifying life expectancy as an answer to prognosis does not equip the patient or family to understand the dying process, nor discern its presence. Physicians are also usually overly optimistic regarding the time a patient has left. Prognostication by physicians, if taken by families as "the gospel," results in sociologic death as the predicted hour approaches. "Foreseeing" the dying process rather than foretelling life expectancy is the better way of handling questions about prognosis. On the other hand, a relative timetable may help patients with closure and estate planning, and so a general answer as "days to weeks" or "weeks to months" or "months to years" may suffice.

It is important to nurture spirituality throughout the course of illness, but even more so near the end of life. Rituals help move the center of hope from this life to the afterlife.94 Many religious traditions have sacraments particular to the afterlife. These rituals become a physical sign for preparedness and belief and can help transition family and friends who are reluctant to "give up the fight" at the end of life care.95-97

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