Hospice Interviews: Beginning the end of my journey

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Hospice Interviews: Beginning the end of my journey

Postby Crystald » Thu May 05, 2016 10:52 am

The past few weeks have been most difficult. Physically the fatigue is getting worse everyday. The pain is increasing, I began taking my painkillers 4 days ago after taking myself off them last July. Eating has become a challenge due to excessive gas issues, I am getting a handle on that finally. Yesterday was the first time I had swollen ankles, feet and lower leg, edema.

I have no interest in even trying to go to the store for anything. I miss going outside to walk. I put my "Cancer Garden" right outside my bedroom window again this year so I can enjoy the colors and critters that visit.

Now onto the Hospice interviews. Being in a rural area I found only three of the five companies were willing to service my area. What follows is a composite of the information I gathered from the interviews. I also have a list of questions I asked, I will post those too at the end.

Please keep in mind that laws vary from state to state.

*Social Security & Social Security Disability : Can not be touched by the hospice company during in home care. IF you become an "impatient" in one of their facilities not all of the bill will be covered, there will be additional costs that must be paid and they vary according to the facility.

*Medicare/Medicaid : When you sign the intake paperwork for hospice, they contact the government and your Medicare/Medicaid gets "cancelled". Meaning that you will no longer be covered under either program. Hospice will work with your ONC, GP, to get you the medicine you need and all medical supplies.

One group gave this example, you fall at home and break your ankle, you do NOT call 911, you call hospice, they determine the extent of the emergency. If severe they arrange "medical transport" to the ER for treatment of the injury only, with order to discharge after treatment. Of course if you break a hip, that is a different situation.

Second group said you fall break an ankle, do NOT call 911, call hospice, if they think it is bad, they will call 911 and make arrangements with the ER for treatment.

Second group said if something medical comes up, like you get a chance for a trial drug, that you will have to submit paperwork leaving hospice and at that time your Medicare/Medicaid will be "turned on" so you can get CT scans, labs and so forth.

*Medications : One group had their own "foundry" where they provided your medicines (at no cost to you). The foundry was part of their business profile and they did not seem too comfortable with using any other pharmacy.

Second group had no foundry and used whichever pharmacy you have been using. If you did not have a preference they would get your meds at local pharmacies that they use on a regular basis.

Generic info:
    Both groups provide in house oxygen as soon as you enter hospice, it is standard procedure, even if you are not currently on oxygen.
    Both groups also provide a medical emergency kit to be kept in the home for hospice or caregiver to use (not too sure what is in that kit
    Both groups provide, at no cost, depends, bed pads, wheelchairs, walkers, shower aids, bathroom aids, hospital bed basically anything a patient might require.
    Both groups provide a support group, social worker, Chaplin, volunteers, counselors

The list of questions I had:
1. Will my Social Security Disability be effected?
2. How many of your nurses are CHPN certified?
3. How many patients is each of your full time nurses responsible for?
4. Is staff available 24/7 for the patient & family?
5. Are my current medications covered under your program?
6. What happens when I am no longer able to communicate and express my wishes to staff?
7. How much support is there for my caregiver & family?
8. How much responsibility does hospice assume in my care?
9. How often will my RN be on site?
10. How often does the hospice team talk to my caregiver & family?
11. What is your policy on catheters?
12. How much will hospice be involved when I am nearing the end?

I have not called Hospice in for my care yet. I have decided which one I want to work with, I hope I have chosen wisely. Maybe it's because I am loathe to have strangers popping up at my house, I have always been a very private person. A large part of my decision was based on my impression of the individual I interviewed. One group sent a "director" who was constantly on the phone and seemed caring but not involved if that makes any sense. The other group sent the actual RN I would have to oversee my care.

I hope this information is coherent and answers some questions for others moving towards the end of their journey. Feel free to PM me with questions and I will check in to answer whenever possible.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

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Location: PNW/USA

Re: Hospice Interviews: Beginning the end of my journey

Postby bitchslapped » Thu May 05, 2016 12:37 pm

You asked very good questions during your interviews. It is hard to have one's privacy invaded, but it does help the patient & family to have guidance, not having to leave the house to get it or be monitored. One thing to note is that Hospice may even want to discontinue some medications one may have been taking because as the body/needs change, some of those meds may no longer be one's friend. Hospice usually provides a booklet on this phase of one's life & what one might expect during the body's transition, i.e. appetite, fatigue, sleep.

My heart goes out to you as you carry on to manage for yourself what you must do & then share w/the rest of us. Takes courage, though no doubt it doesn't feel so courageous.

Hospice will help you manage the pain, reduce stress that comes w/pain. Through Hospice a volunteer came to the house to play music. It was just so enjoyable, a wonderful diversion, even though we also are private people. So glad I opted for it.
Good for the patient, good for the caregiver.

I hope you make that call soon to bring you some help & comfort.

DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Hospice Interviews: Beginning the end of my journey

Postby midlifemom » Thu May 05, 2016 12:39 pm

Thanks for sharing this info. I know it will help others moving forward.
I hope hospice will give you relief from all your issues.

I know that many on this board have stated that they wished they had started hospice sooner - they can be that helpful!

I hope they give you peace.

Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Nik Colon

Re: Hospice Interviews: Beginning the end of my journey

Postby Nik Colon » Thu May 05, 2016 8:07 pm

Thank you for providing this information as I'm sure it will help many. Again, prayers and hugs to you.

Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Hospice Interviews: Beginning the end of my journey

Postby jhocno197 » Thu May 05, 2016 8:33 pm

Thank you so much for taking the time to share this with us.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Joined: Sun Dec 20, 2015 4:17 am
Facebook Username: Jac gar
Location: Florida

Re: Hospice Interviews: Beginning the end of my journey

Postby Travelgirl » Thu May 05, 2016 10:30 pm

God Bless you for sharing Excellent information.

Most people would never know or even think to ask these questions.

Your a very special person for extending such kindness to help others.

Hang in there we are all praying for you. Big Hugs ....
Travel Girl
DX-CC 12/19/15
Tumor location Cecum
Tumor Type -Adenocarcinoma arising background sessile serrated polyp high grade dysplasia
Tumor size 1.5 cm
TNM - T1, N0, M0
Stage 1
Baseline 12/15 CEA 2.4, 8/16 CEA 1.7,11/15 CEA 2.3
Surgical Margins Clear
Lynch - Neg
Primary Surgery 1/11/16 LAR right colon and portion of ileum right hemicolectomy
1/4 follicular lymphoma- Wait n Watch (found in CT scan for Colon cancer) a 2 for 1 special.
8/16/16 NED for Colon/Lymphoma nodes have shrunk on their own.

Posts: 69
Joined: Tue Jul 08, 2014 1:37 am

Re: Hospice Interviews: Beginning the end of my journey

Postby Lund5505 » Fri May 06, 2016 3:15 am

Nice list. I never thought about the disability question. Good to know. When I interviewed them I asked a lot about who decides who visits me or them. I was told that if I only wanted the rn and no social workers, aides or volunteers to babysit me that is what they would do.

I also asked about my home set up as I didn't want to be forced to move a bed into the living room, etc. the told me they were fine with my current bedroom setup. Have my bedroom on suite bath, cable, phones at my fingertips already. My husband is in the next bedroom so he can hear me if needed.

I was told that once you sign up they don't like you to leave town. Seems crazy to me and this was the main reason I have not agreed to it yet. If I feel good enough for a road trip I think that is my right but they said they would kick me out and resign me up when I got back.

Also, when I interviewed they were bad mouthing my oncologist some which made me uncomfortable. I understand they have different perspectives but would like to think they would work together in my best interests. They seemed to feel he let patients continue chemo too long.

I also asked what their attitudes were regarding anti depressants, anti anxiety and steroid medications. They seemed very much for all three. Very disconcerting as I am not on any and haven't been this entire journey. I don't want to die doped up. Nothing would scare my kids more than a mom who didn't get passionate about the little things.

Anyway, we have decided to wait until the last possible moment to call them in. I may change my mind as things go further downhill but for right now it is the right choice for us.

Crystal thanks so much for sharing. You are very brave and kind. I hope you find the right fit for you and get help managing the symptoms. Always here if you need an ear.
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

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Location: New Zealand

Re: Hospice Interviews: Beginning the end of my journey

Postby Sophy » Fri May 06, 2016 6:30 am

Thank you for sharing your experience.

As we will all need to die sometime whether we are now caregivers or patients your information about the way hospice works will be useful to us all

dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 2020 CT shows still NED
Continuing ADAPT

Posts: 22
Joined: Wed May 04, 2016 10:20 am

Re: Hospice Interviews: Beginning the end of my journey

Postby Orissia » Sat May 07, 2016 5:06 pm

Thank you so much for sharing. I hope you continue to share your journey. It will help me and others as some of us follow a similar path...
Stage 4 colon cancer w. mets to liver
No surgeries, primary tumour & mets still in situ
MSS, KRAS wild type (normal)
2014 Folfox w. Avastin
2015 Folfiri w. Zaltrap
2016 Erbitux fail
June 2016 SIRT done; approved for TAS 102/ Lonsurf
Looking to participate in MSS immuno trial when they start recruiting, if Lonsurf fails

Married since 2007 with a 8 year old daughter.

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Posts: 255
Joined: Sun Jun 09, 2013 10:34 pm

Re: Hospice Interviews: Beginning the end of my journey

Postby kirac » Mon May 09, 2016 11:41 pm

Thank you so much for sharing. As you start your final journey, I'm thinking of you and wishing you one that is relatively pain free.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED


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