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.
- 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.