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Choosing a Hospice Program

Anne, age 48, divorced with two children ages, 8 and 14, has metastatic breast cancer. She has been told that at this point in her illness, chemotherapy is doing more harm than good. She is not pursuing curative treatments. She is eligible for hospice. Most of Anne’s medical issues are related to pain, fatigue, and shortness of breath due to impaired function of one lung. She has been receiving care at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City, and medical providers from MSKCC are likely to stay in the picture — oncologist for medical continuity, pulmonologist for lung symptoms. However, she lives in Tarrytown, and everyone agrees it makes sense to have a hospice closer to home that can be integrated with home care services.

Anne was too tired to make the calls herself but her sister contacted several hospices in Westchester to determine which one might serve Anne’s needs best. Anne wanted each to specify what it meant by “palliative care” and how the hospice team would work with her. How would they coordinate care with MSKCC? How often would the different team members visit? How much time and what kind of services could be expected from a volunteer?

Anne’s sister could move in with her but she worked full time during the day. How many hours of aides would the hospice provide and how much care giving was her family expected to contribute? Could the hospice connect her with outside aides who could help with dressing, bathing and such?

If Anne was unable to remain at home, could services continue in the hospital or a nursing home? If so, which hospital would she go to and which nursing homes could she choose among? Would the care team transfer? Would there be additional costs?

Anne’s children were of utmost concerns to her. Would a social worker be involved early and help organize their lives? Could he or she help explain to her children what was going on? Were there support groups for her children? How would the services be paid for? Anne had private health insurance. Would it be accepted? Would complementary services, such as massage or Reiki, be available and would there be an extra cost for them? Could they give references from families who have used them?

Based on the answers her sister received, Anne was most attracted to two of the hospices and asked to meet with a representative of each before she made a final decision. In the final analysis, her decision came down to personal chemistry and the personal recommendation of a friend who had had her mother on one of the programs and was very impressed with the services.

Additional information about services offered by hospice is available in the Living with Serious Illness/Hospice Care section of The Guide.