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Palliative Care: Hospice

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 12:17pm

Dear TNBC Foundation family,

Hospice-end-of-life care


In the last year we have, tragically, lost many women with TNBC.

I am not a medical professional and I am not attempting to tell any woman to stop chemo and start a hospice program.

The  purpose of this forum is to let women and their families understand how hospice works so that if it is something to be considered the marvelous women here are more knowledgeable about what to expect. This will be a multi-post project.

Typically, from what I have seen many women fight their disease with chemo treatments literally until almost the last day.  That is what the woman, and often her family, seems to want and I believe most oncologists encourage that plan.

At times, though, a woman and her family decide that because chemo has not been effective a decision to stop treatment is made.  And, at times, a oncologist will tell the patient “we have tried everything and the treatments have failed you. I think it is time for you to concentrate on your Quality of Life (QOL) and I would recommend you enter a home hospice program." 

It is also extremely important to be aware that if  a new promising clinical trial comes along you can stop hospice care with a simple phone call and if. e.g., you qualify for the new trial or want to take a newly approved drug,  you can enter the trial as long as you meet the criteria or take the drug, on the advice of your oncologist.


I will present, and hopefully others will as well, in much greater detail, what a home hospice program entails, but for now I think everyone is aware that a home hospice program is normally utilized when the patient does not want to do medical treatment for their cancer.  

This is intended to be a forum where women and their families can learn about hospice and most importantly can feel ‘safe’ writing about their experiences. A woman some months ago, wrote on the board that she was stopping chemo and basically said goodbye to us. I was able to get in touch with her and I told her that I understood and respected her opinion and wanted to send her a book with a "tough title" but that I thought the book might help her. I asked her if I could tell her the title and she said “I have been preparing for this the last 18 months. If you have anything that can help me please send it to me. What is the name of the book?” I told her it was Dying Well by Dr. Ira Byock. She thought that would be “wonderfully helpful” and I sent her the book. Dr.Byock’s dad showed his son, by example, what ‘dying well’ meant to him and others share their journeys as well..

Of course everyone’s experience is different and I am not suggesting that this book will be useful for everyone.

I have also sent several women copies of Graceful Passages which is a book with various inspirational passages representing various religious beliefs as well as secular thoughts that are also on CD. And there is a CD which just has music on it.
Again, I don’t believe every ‘passage’ will resonate with all here but some may and it has been my experience that when than happens it helps the patient.

I am hoping those here who are thinking about hospice care will post their thoughts and questions and for those of you who are in home hospice programs now, perhaps you can share some of your experiences. And for family members who have lost loved ones who were in hospice, perhaps you can share your experiences as well?

Also, some cancer centers have what is called an “acute care facility” within the hospital and that is different from hospice in many respects but also similar in other respects. More on that at a later date.

Importantly, hospice care is normally paid for by Medicare.

As always, I believe the conversations will be respectful and hopefully enlightening.

with my prayers that this new forum will be helpful to some here and sorry we need this forum but, unfortunately, we do,

Steve



Edited by steve - Sep 29 2011 at 12:41pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arleneb Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 11:22am

What is Hospice?

Hospice care is a type of palliative care that is focused on the end of life. It is for patients whose cancer cannot be treated. For a patient to be eligible for hospice services, the doctor must certify that the patient is expected to live six months or less.

 

The goals of palliative care and hospice care are the same: to relieve pain and suffering and to improve the quality of life.

 

Credit: US News and World Report article developed in partnership with The University of Texas MD Anderson Cancer Center.

Link to full article: http://health.usnews.com/health-conditions/cancer/information-on-palliative-care



Edited by ArleneB - Sep 29 2011 at 12:15pm
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