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If a Hospice is not in your area, but you have a palliative-care unit they frequently are mirrored.

The questions you want to ask:

1. Who will be managing my care ( we only use RNs who are specifically trained in terminal care)
2. Wwhat will be covered by my insurance company: typically your insurance company is supposed to cover all medications related to the terminal illness, all durable medical equipment and supplies( includes hospital beds, commodes, walkers, oxygen, nebulizers and any other equipment that hospice deems necessary as part of your plan of care.
3. Who will be my physician: doctors out there please do not take offense, but many doctors do not like to be told how to manage care. They should know this, but many do not have advanced training in terminal care.  Do not hesitate to ask your primary MD and if you do not feel comfortable, switch to a doctor who specializes in palliative/hospice care.
4. Where will I receive my care, make your wishes known up front, many choose to be at home others prefer to have their last  days in palliative care/ hospice center.
5. What are your wishes re: advanced directives: do you have a living will, a health care proxy, does your doctor, hospice and family know your wishes.
6. How will you treat my symptoms: pain, air hunger, SOB, constipation it comes hand in hand with the narcotic for pain. The drug of choice is Roxanol which is a liquid morphine for short acting relief of pain and MS Contin, Oxycontin, Duragesic Patch, for long acting pain. Ask how the pain med is titrated as needed, do not and I repeat think that Morphine will stop my drive to breath. It will help the air hunger, bring those horrible rapid all consuming respiration’s to a comfortable level. The sky is the limit when treating pain and air hunger. We do not stop the dose until we have relief of symptoms.
7. I have other health care problems, ask how they will be managed.  Hospice manages the whole not just the disease.
8. Who will help me through all of this, you will have a Social Worker or Clinical Counselor to help you and your family.
9. Hospice admits the family as a unit of care. Bereavement counselors are available to your family for 13 months after the death. The family unit consists of family members residing in the household.
10. My family needs some time away, I encompass all of their time, ask for a hospice volunteer.
11. I am unable to do the simple things anymore, brush my hair, bath, dress, etc., request a Home Health Aid, under Medicare guidelines in the USA you may have up to 4 hours a day of HHA care in your home covered by Medicare as long as a justified need is in the plan of care. I am a Manager for geriatric patients, most live in nursing home, residential adult care facilities and retirement homes. The facility is considered the home of the patient and Hospice bills Medicare or commercial insurance for the care needs. Occasionally an insurance does not cover all of the care or the patient does not have insurance, Charity care is available based on the financial needs of the patient, not the family! The time to refer to Hospice is when you and your physician feel that their are no other options. Technically a referal to Hospice per guidelines in the states are a patient has a terminal illness with prognosis of 6 months or less if the disease was to follow its normal course. Do not let that scare you Hospice benefits are done in certification periods 60 days, 90 days, 90 days and continual as long as the disease shows progression and documented evidence is available. My advice to any one is not to wait until the last few days, this is what we call Band aid mode and please do not be insulted by this. You will not benefit when in crisis, yes you will receive treatment for comfort, but you need much more from that. We have the Hospice Smorgas board of care all incorporated into an interdisciplinary team which consists of MDs, RNs, SWs, Volunteers, Home Health Aids, Pastoral Care Chaplains and multiple levels of consultants, Speech Therapy, Physical Therapy,  Occupational Therapy, Bereavement Counselors and the list goes on and on.  I sure hope this helps but please let me know if you have more questions.
    Kathy   KJBLUSH@CS.COM

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Additional thoughts and suggestions on things to ask and consider:  

• Private room or roommate?
• Is your animal allowed or is there a “house” pet?
• Can you have guests to dinner?
• Can you get the help you need and do the things you still can alone?
  (You would be surprised at the number of places that prefer you WAIT for
  them even if you really are still capable!)
• Will bathing with assistance be pleasant or (as my dear Auntie called it)
  “a dog wash?”
• Will someone from your family do your laundry or will the facility?
  (If family will just do the “special things” fine, at least your clothes
  won’t all be washed in hot water and dried to death)
• Do you need someone’s “permission” to leave, for lunch or shopping, or can
  you just “sign out?” You need to sign out in case of emergencies. Imagine a
  fire alarm going off and they are doing a head count....now where is HE?
• Are the visiting hours enforced? To me this is crucial, your family should
  be able to come and see you at ANY time. Dropping in at 6 AM, 11PM and any
  other time you are in the area or have the inclination is a priority.
  
  Thanks Connie Story  for your suggestions.

If you have additional thoughts you wish to be possibly added to above, e-mail them to Bill Poplett, at aatbill@cox.net

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Updated May 16, 2005