Advice for hospice

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Advice for hospice

Postby hjkat » Sun Aug 02, 2015 4:45 pm

New to this site and having been reading through threads all day. My mom was diagnosed with stage IV colon cancer in April, had surgery and has spent the last 3 months in the hospital with one set back after another including a small stroke and severe pulmonary and kidney issues including dialysis.

While she has stabilized, she is still incredibly deconditioned and mostly bedridden. We were given a terminal diagnosis this week with a recommendation for hospice as her wish is to go home.

i am turning to this wonderful group for advice: what questions should we ask when we meet with the hospice team? What equipment or supplies besides the obvious do we need? My sister and I will be primary caregivers, but we are planning to hire an aide to assist with night care, so any advice on this too would be welcomed.

Thank you.

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Re: Advice for hospice

Postby ANDRETEXAS » Mon Aug 03, 2015 1:27 am

Sending prayers to your Mother and family during this time. I am sure there are wonderful people on here who can give you some good advise. Andre
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
3/23- clean CT
2/22- clean CT
3/21 - clean CT
4/11 - clean colonoscopy
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023


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Re: Advice for hospice

Postby Laurettas » Mon Aug 03, 2015 8:33 am

I am so sorry, H, that your mother and the family are going through all of this. I experienced hospice for my husband almost 3 years ago. One thing I learned quickly was that hospice is primarily an advisory group. The family is responsible for 90% of the care. In two weeks of my husband being paralyzed and completely bedridden, we probably saw hospice employees for 8 hours or so. They are also quite expensive. I believe that our insurance company was charged $15,000 for their services. Make sure that you understand what you are agreeing to with hospice. When one signs on for hospice, one is giving up her primary care physician, emergency rooms, quick care and any care other than pain control. You are wise to hire someone to help because IMO there needs to be at least 3 people to handle caring for someone on hospice. You are also allowed 5 days each month of hospital care for periods of respite. If your mother is experiencing much pain, I would ask for the capacity for IV pain control since it is much more effective than oral medication. I sincerely hope that this is a peaceful time for all of you.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

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Re: Advice for hospice

Postby jgall » Mon Aug 03, 2015 12:31 pm

Hello - I'm sorry you're going through this.

I think what services you can get will depend both on what the hospice organization has to offer as well as what your insurance will cover. Our hospice has offered respite care from an aide, onsite nursing care, and volunteers. Fortunately I haven't needed any of it yet, but it's nice to know it's there if I need it. From my experience (with two hospice groups), they will tell you what services they can offer at the intake appointment.

We already fired one hospice group, but love the second one we got. If something doesn't feel right - like not a good fit - don't hesitate to complain or inquire about a transfer. I'm so glad we did.

Best to you,
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15

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Re: Advice for hospice

Postby surfingon » Mon Aug 03, 2015 3:01 pm

As a 28-year hospice volunteer and trainer of new volunteers, I can tell you that Julia hit on one of the most crucial points about hospice care: not all hospices are the same. There are some very good ones and some really poor ones.

You might want to check out my blog post on how to choose a really good hospice:

Yes, it is true that hospice will not provide 24 hour care. But what you get is effectively free: all medical supplies and coverage for all drugs related to the patient's diagnosis, nursing care, home health care, 24-hour on-call nurses, hospice doctor, volunteer respite, massage/ Reiki/Healing Touch and other alternative modalities (depending on the hospice), spiritual support from a chaplain... In return, you agree to sign over whatever medical benefits you have to the hospice organization. Yes, hospice takes those payments-- but in my experience , a good hospice spends far more per patient than whatever small reimbursements they receive from the patient's medical insurance and provides care that is so much more comprehensive.

Hospice is all about palliative care and creating a comfortable, peaceful, safe environment for the patient and the family. in those domains, the care one receives from hospice is light years beyond the conventional medical system. But consumer beware: not all hospices are the same. As Julia's experience shows, choose wisely (most communities have several choices, and in my experience, the more choices available to you, the more wary you should be) and be ready to fire if you feel uncomfortable in any way.

Let me know if you have any other questions.

Blessings on your journey,
caregiver to husband John
Stage III CC 3-05
liver+ colon resect Nov '06
FolfoxA , FolfiriA
7 liver RFA's, 1 lung RFA
died April 29, 2009

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Re: Advice for hospice

Postby hjkat » Mon Aug 03, 2015 5:10 pm

Thank you all for your kind words! This is definitely the hardest thing I've ever done but feel like we are making progess towards my mom's wishes this week. And thank you Rachel for your blog -- what an incredible wealth of information. So glad to have stumbled on this community.

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