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Hospice Care/ALS/Stage 4 Breast CA on vent-Hospice Refuses


My sister was diagnosed almost 4 years ago with ALS. Within 6 months she was hospitalized for respiratory distress and they ended up putting her on a ventilator. She was still able to stand and walk short distances and has 2 young sons whom she wanted to live for. She has since become completely paralyzed though she can still speak and swallow though not well. In October she was diagnosed with Stage 4 breast cancer with metastasizes to her liver, bones, and ovaries. She tried a low doses oral chemo but has now decided that she doesn't have the strength to continue chemo or try radiation. She would like to go on hospice and was referred by her oncologist but the hospice at U.C. Davis said she is not eligible because of the ventilator. They have called other local hospitals and nobody has had or has anyone on a vent so they won't do it. I am so frustrated I could scream. My poor sister has suffered for so long she deserves all the benefits that hospice can give her so she can die in peace.  Do you have any suggestions about how I can get them to change their minds? We can't just turn off the vent, she would die instantly.

Hi, Susan--

I am very sorry about your sister's situation but so glad you wrote to me.  The hospice refusing her is wrong.  She can receive hospice for her cancer and continue to be cared for by her PCP and specialists for her ALS, which would cover her vent.  

The reason hospices don't want to take on ventilator patients is because if the problem that necessitates the vent is the reason they are on hospice, the hospice has to cover the cost of the vent.  Hospices are reimbursed on a per day basis, maybe $150 a day (I'd have to look it up, and it varies for different regions.... you should be able to get this info from the hospice or from Medicare or your sister's insurance company, if you are curious).  Vents cost that or more.  You can see their quandry.

I believe that even if your sister wanted to end her life, you cannot turn the vent off once it is on, except maybe in certain states (I'm in Texas and we are not one of them... not sure where you are).  So the trick is for the hospice referral to be for the cancer--

Please write to me again if you need more help.  It sounds like a faster short answer is what is needed now.  Definitely call them today.  Hospices can admit 24/7/365.  The specialized care hospice can provide, plus the amazing pain management that is not available to other patients makes not giving up very much worth it.

I hope you will let me know how it turns out.

Peace to you all,

Hospice Care

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Christine Johnson


I can give suggestions, encouragement and direction on what hospice is and is not, when it is appropriate, and how to go about getting it. I am familiar with Medicaid and Medicare hospice benefits. I can answer general questions about disease process, what dying looks like, how hospice handles pain and other symptoms, what to expect from a hospice when end of life nears. I can provide support, direction and encouragement related to spiritual matters and psychological matters related to death and dying.


I am a certified hospice and palliative care nurse, and have been the director of nurses for three hospice centers, under two different companies. I have also worked as a contract hospice nurse for a large American hospice company. On a personal level, my father died without benefit of hospice (it was not popular then). I have taken care of dying patients in hospitals and recognize that for most of us, it is preferable to die at home (or in our residence, wherever that may be), comfortably and without anxiety. Also I had no support when my father died; hospice clients are the whole family (however that is defined by the "patient"), and support is provided at least a year after the patient passes. These are the sorts of things (and probably others) that I can help with.

HPNA (Hospice and Palliative Nurses Association)

none yet

Registered Nurse (TX), Licensed Marriage and Family Therapist (TX) ADN Nursing, Excelsior College, Albany, New York (2004) 4.0 GPA BA, Psychology (minor Social Work), Oklahoma University, Norman, OK (1986) 3.67 GPA MHR (MA) Human Relations, Oklahoma University, Norman, OK (1988) 3.5 GPA

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Phi Beta Kappa (and others)

Past/Present Clients
Unable to name as this would violate their privacy (and HIPAA....)

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