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Deciding to end treatment

This topic has 3 replies, 3 voices, and was last updated 7 years, 1 month ago by Devon Grosskopf.

Viewing 4 posts - 1 through 4 (of 4 total)

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March 8, 2017 at 7:02 pm #31879

Wondering daughter
Participant

My mother who has MDS for the past 6 years has made the decision to stop taking her Vidaza and Procrit regiments. She has not been responding to treatment. Her last white blood cell count was 93.5 down from the previous week of 103. Her hemoglobin is at a 7.1. Hospice came in and evaluated her due to a bed sore and recommended coining to hospice house for a temporary stay. She was there for 4 days and today she told me to bring her home, which I did. She is currently very weak and I am seeing that there is blood in her urine. What can I do to make her comfortable. She dies not want to continue the morphine and other meds that she was on while at hospice. Any suggestions would be greatly appreciated. I am arranging for at home health care with qualified people. What can I expect regarding her declining health?

March 16, 2017 at 12:53 pm #31921

Anonymous
Inactive

Thank you for your post. I am so sorry to hear that your mother was not responding to her treatment. Did she ever seek a second opinion from one of our MDS Centers of Excellence? Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. It is important that she be seen by an MDS expert. We do not give our MDS Centers of Excellence designation to just any doctor or institution. Our standards are very high. When choosing a hospice program, first start with your insurance provider. Ask if they are contracted with specific hospice programs in your area. Most insurance companies, including Medicare and Medicaid, provide some hospice coverage. When you have a list of covered providers in your area, ask your health care provider and social worker if they have experience with each provider. Hospice care is end-of-life care with the purpose of caring for the individual and the symptoms of the disease, without treating the disease itself. The focus is on the patient and the patient’s family. It includes a team of caregivers trained to provide a gentle approach to supportive care, including the physical care of the patient and the emotional and spiritual care of the patient and family. Her primary care physician or hematologist may or may not work with the hospice team to make decisions concerning her care. They may provide pain medication or other medications to provide comfort. They are on call 24 hours a day. I hope this helps. Hopefully, another treatment and eventually a cure will result from our efforts here at the MDS Foundation.

March 16, 2017 at 1:28 pm #31922

Wondering daughter
Participant

Unfortunately, my mother passed away on Saturday March 11, 2017. She fought for the past 6 years and just was not doing any better. She has complications being a “post polio” patient, a diabetic, and an MDS patient. Her last week was spent partially at Hospice House and then I brought her home Wednesday. She enjoyed her life, however, she was tired of being poked and prodded with no end in sight.

March 17, 2017 at 12:09 pm #31926

Devon Grosskopf
Participant

I also am so sorry for your loss! I have AML with MDS, it’s definitely a disease that changes you physically, mentally, and emotionally. Thoughts are with you and your family!
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