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Old Fri Jan 22, 2010, 09:27 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,557
Burt,

Is your dad able to express his wishes regarding treatment? The doctors could be talking about a hospice bridge program because they don't think he's at the point of hospice care but have a concern for his quality of life. Full hospice care usually means that only supportive care is given, but hospice bridge programs can offer continued treatment outside of a noisy and uncomfortable hospital, if that's your family's preference. If you think the doctors are giving up on your dad, I'd ask them that directly. I found this Journal of Clinical Oncology article about bridge hospice care to be very informative. The article is 9 years old so the statistics may be out-of-date but I think it has useful descriptions and explanations.

You could seek a second opinion if you think it would be worthwhile, to confirm what you've been told, to identify any other options, or to give you more confidence in what's being done for your dad. In any case, if it comes down to a choice between aggressive treatment, less-aggressive treatment, and supportive care only, the decision is very personal and can't really be made by anyone but your family, in consultation with the doctors. I hope you have other family members around to share the decision-making burden.

Some suggestions:
If you haven't already done so, contact the Aplastic Anemia & MDS International Foundation to get information about MDS. They can link you to resources, send you publications about MDS, get you answers, and help in other ways.

Make sure that there's one physician in charge of your dad's overall care, someone who knows the concerns of each doctor on the team. Maybe it's your dad's primary MD or his oncologist-hematologist. The specialists should not be treating him independently and you should be able to talk to the doctor in charge without having to track down every specialist individually when they visit your dad or get new test results.

If you'd like to know more details about your dad's diagnosis and condition, ask the doctors for copies of his medical information, such as your dad's MDS subtype, IPSS score, daily blood counts, and other information that will let you better understand the doctors' basis for recommendations. If you want to learn more of the medical lingo you are hearing, other forum members can probably help. We're patients and caregivers but in helping ourselves we each learn to "talk the talk."

Don't forget to take a walk outside, ask other family members to help you keep an eye on your dad, or make appointments with doctors so you don't have to wait and wonder when they might come by. I know from experience that a caregiver can get so focused that he forgets to take a deep breath now and then and to get enough rest. Some patients even appreciate a break now and then from the almost-constant attention they get. Maintaining your own well-being will help your dad.
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