hospice

[bebop]

at what point would one call in hospice with mds?

[rose mcmillin]

Hi, What a tough but honest question to have to post. I wish I had an answer for you. I just wanted you to know that you were being thought of and that I hope that someone will be able to post a response. Stay strong and positive. I'm sure that you could ask the doctor if you don't get a response.

Sincerely, Rose

[cathybee1]

This is so hard. Every situation is different. When my dad was very sick (not mds) he told us he was ready. My mom wanted to keep fighting until the end.

[mroman]

I logged in here seeking the same answer. My mother has had MDS for over 12 years, she has recently become frail and the meds she's been on are apparently no longer working. She has suffered cognitive loss and is now in a nursing home.

I know she would not like to live like this long term. The nursing home actually asked me at what point I would consider discontinuing transfusions. She is not at that point, and I would not feel right discontinuing care that would end her life.

[bebop]

thank you all so much for the responses.

Yesterday Dad had his weekly blood test. hemo was 8.1 and plts were 13! lowest they have ever been. Dad is very tired and tired of being poked every week. He has told his dr this but he hasn't said to stop just yet but I fear we may not have to do that if these numbers don't stop dropping. He told me the other day that he feels his body has changed and he is basically telling everyone goodbye now.

[Hopeful]

Hi bebop,

I am very sorry to hear about your dad's decline.

A doctor must refer a patient to Hospice. They can do this if they believe the patient has 6 months or less to live. (They can live longer on Hospice, but the prognosis is supposed to be for 6 months of less.) Hospice doesn't mean that a patient can no longer get transfusions or even chemotherapy, if the treatment is for the control of symptoms. The goal is to keep the patient comfortable and pain free, but it is not to prolong life as long as possible.

Hospice can be a beautiful service to help a family through a very difficult time. The family gets the support of a Hospice team (nurse, home health aide, nutritionalist, therapist, chaplain, respite, etc.) that will come to your house to help address the physical, emotional, and spiritual needs of everyone involved.

Unfortunately, in many areas, people are only in Hospice the final 2 weeks of their life and miss the huge service that it can provide.

I would encourage you to talk to your dad's doctor to understand if your dad qualifies for Hospice. Then you can talk to your dad to see if he wants to go this route. It is a difficult conversation because of the taboo that Hospice="giving up" when actually Hospice="care and comfort".

Best wishes.

[bebop]

the dr offered him hospice when he refused the chemo. he is transfusion dependent but not has started on platelets as well. he still manages on his own kind of with the help of his wife. he is weak though and failing. He says he is not in pain so this is a good thing. Today though he said his hips are sore. not sure why that would happen.

[Joan]

Hopeful gave a very good explanation of Hospice. I had friend who had in-home Hospice for 7 months before he died (not from MDS). Great support to him and family. He was a retired physician and wife had been a nurse. I agree most people wait too late because they view it as "giving up." Maybe there comes a time when it is okay to "give up" even though this is hard for all involved.

Good Luck in making this decision.

[bebop]

no hospice for Dad. He knows his time is short and he asked us Friday not to take him to a hospice facility. we may do it at home but not sure yet.

[mroman]

bebop, hospice at home is something to look into, even if you think it may be short term. When my MIL was failing, they were very good helping her deal with pain and discomfort and her passing was peaceful.

When my mother gets to that point I am going to arrange for it at her nursing home. The point is to help people live comfortably in the time they have left.