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91 year old dad starting hospice

Home Demo forums Patient Message Board 91 year old dad starting hospice

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    Sue Broadbooks

    Nearly 2 years ago, my dad was diagnosed with AML, likely progressed from MDS. He’s been on a regimen of decitabine infusions, then later added Venclexta orally. In March a second bone marrow bx showed the AML in remission. His MDS has progressed though, with falling cell counts of all categories. His hemoglobin finally fell under 7.0, and now he is transfusion-dependent. We are talking with hospice today.

    I’m having a hard time finding information about hospice care for end-stage MDS – what to expect and what is helpful for comfort. Also, I’m wondering about what sort of comfort care can be administered in hospice care. Since none of his current treatment is curative, can any of the current treatment continue – should it? (decitibine, Venclexta, transfusions, preventative antibiotic/anti-fungal/anti-viral) His oncologist has given him options of continuing all, some, or none, but hasn’t made any specific recommendations. It’s rather confusing.

    I would appreciate any guidance or sharing of experience. Thank you!

    Ashley Moncrief

    Hi Sue,

    I’m so sorry to hear that you and your father are going through such a rough time. By definition, hospice care focuses on quality of life and comfort rather than curative measures. Palliative care, on the other hand, focuses on quality of life and symptom management; this can be combined with curative therapy. Sometimes the terms hospice and palliative care get used interchangeably, but they really have different practical applications. In regard to hospice, I recommend asking what specifically your father would be allowed to continue because sometimes if varies on a case-by-case basis and it can also vary based on the company you select. I hope this helps!


    Sue Broadbooks

    Thanks, Ashley. We were able to get a meeting with hospice today. They were very helpful and informative. Dad would need to be ready to disconinue the decitabine, venclexta, and transfusions. He would be able to continue the antibiotic/antifungal/antiviral. It’s helpful to have some definitive information!

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