[Phoebe]

Terminal and palliative care

by Phoebe on Sat Nov 23, 2013 11:14 am

My dad is recently deemed untreatable and was discharged to go home with me. 2 days later at home, he developed fever of 38.3 degrees and was sent to emergency, thereafter he was transferred to ward. His ANC is 0 but is placed in a 6-bedder ward instead of the Isolation room. There are coughing patients and visitors there. I can't afford a single room A class room but I can definitely afford a B-class isolation room. So the issue is not about money here.

I wonder if patients are treated with less priority once taken as untreatable?

How does the hospital handle terminal patients?

Would terminal myeloma patients tend to frequently develop fever due to infections? It feels sad to send dad to emergency, knowing that he would stay relatively long in the ward and has limited time left on earth.

I know it is sensitive to ask, but I would really appreciate if anyone can share his/her experience here. I would really like to know what to expect in the days to come.

Thank you very much.

[Wayne K]

Re: Terminal and palliative care

by Wayne K on Sat Nov 23, 2013 12:10 pm

I can't speak to the cost, but my sister dies at home from multiple myeloma as did my dad from another form of cancer. They were both made comfortable. I don't know if this is an option for you as I know it comes with complications and it's simply FYI.

[Basketballmom]

Re: Terminal and palliative care

by Basketballmom on Sun Nov 24, 2013 2:30 pm

Hi. I know this subject is so hard for people to broach and respond too, especially by the patient themselves. We don't want to think about letting people in at such a private and sad time when the doctor say "nothing to be done anymore". Im a 45 yr old mom and wife. My oncologist gave us all the paperwork for our city's hospice and palliative care units. Also a book with legal forms for a living will, a DNR form and power of attorney forms. There is no more chemo options for me and Tuesday Im going for my second blood transfusion in 3 months. My wish is to die at home. I talked with my family and they are willing to take care of me till the end. A social worker explained to us what the end would be like. I still want to be in my room on the farm where my last view will be the rolling hills, my horses grazing and my people next to me. Palliative care in Canada includes home visits for blood work, special equipment like hospital beds and IV pain meds. Our local hospital is over capacity with flu outbreaks and too few beds. My Primary care physician sees me right away between patients for the slightest cough. Im very fortunate and at peace with my arrangements. Please ask your dad what his wishes are and try to accommodate them as far as possible. An 8 person ward seems not right. Maybe there is other options that a oncology social worker can discuss with you both. And a big hug from me to you. I know you need it too xx

[NStewart]

Re: Terminal and palliative care

by NStewart on Sun Nov 24, 2013 3:39 pm

I'm so sorry to hear that your father is at this point in his journey with Myeloma. Find out what your father would like for his end of life. Talk with a social worker at the hospital and/or the cancer center to find out what your options for care are for him. Ask about hospice care. Here in Philadelphia one can have hospice care at home, in an inpatient hospice care center and in a nursing home. It would mean no more visits to the ER. The hospice people would make sure that your father is comfortable and has what he needs to live his last days in peace in whichever setting is best for him and for you, his family.

Sending you and your father love,
Nancy in Phila

[hotinaz]

Re: Terminal and palliative care

by hotinaz on Tue Nov 26, 2013 6:48 am

Hi Basketballmom,
Wow - have just read your post and I am impressed with your wonderful attitude at this crucial and challenging beyond words time. I also need to finish my DNR form, a living will and regular will. I am fairly new to the 'mult myeloma battle and was diagnosed in October'.

Best of luck and my prayers for you and your family!!!
Regards, Bryan

Basketballmom wrote:

Hi. I know this subject is so hard for people to broach and respond too, especially by the patient themselves. ... Please ask your dad what his wishes are and try to accommodate them as far as possible. An 8 person ward seems not right. Maybe there is other options that a oncology social worker can discuss with you both. And a big hug from me to you. I know you need it too xx

[Concerned]

Re: Terminal and palliative care

by Concerned on Sun Dec 22, 2013 2:01 pm

Hi,
Palliative care means one gets only treated for the immediate pains etc. but receives no treatment anymore for the "actual cancer". It is also usually done at hospice (at home) 6 months prior to the doctor's feeling of the time the patient has left and if I am correct, hospice itself can be extended, if the patient outlasts the projected time.

I don't know what terminal care means.