Tips on Finding and Using a Hospice
Your community may have several hospice organizations or only one. Check your phone book under "Hospice" or use Google. Remember that hospice care is most often provided in the home, though there are some "inpatient" hospice facilities for those who cannot stay at home. Hospice does not provide round-the-clock care in the home.
Things to consider
- Some insurance companies pay for care given only by a particular hospice. When you call a hospice, they will tell you if they take patients with your insurance. Medicare includes hospice coverage.
- It is always a good idea to ask the doctor who is making the referral to hospice if she/he prefers a particular hospice. This doesn't mean you have to go to that hospice, but your doctor or the nurse in your doctor’s office may have some insight into the reputation of a particular hospice.
- You may also want to speak with friends or family members who have experience with hospices in your community. They may give you some tips as well.
- Hospices are either for-profit or not-for-profit. In most cases, both provide excellent services. The reputation and practice of a hospice is more important than whether they qualify as a nonprofit organization.
- In order to receive hospice care, most agencies require that the patient have a primary caregiver while they are at home. If you do not have someone who can provide care for you in your home, hospice may be able to offer some suggestions/solutions. Ask them for assistance.
- The organization for hospices is called The National Hospice and Palliative Care Organization (NHPCO). Hospices can become members of this organization by paying a fee. You can see these hospices listed on the NHPCO website at www.nhpco.org. Membership in this organization does not mean their care will be better than other hospices. It is simply one place to start your research.
Researching particular hospices
- Call the hospice and ask to speak to an intake person. Explain the patient’s situation. Ask if they see patients in your area.
- You might want to ask them how long they have been in business and how many patients each nurse sees on an average day. The fewer patients a nurse is expected to see in a day, the more time they will have for each patient. Older hospices tend to have more experience, but that shouldn’t rule out a smaller hospice, unless they have been in business only a year or so.
- Have them describe their services.
- Ask them if you will be able to continue to see your own doctor (some hospices ask you to use their doctor – though this is rare.)
- Ask them to describe their philosophy of pain management. Listen for words that make sense to you, like: "Our goal is to keep the person out of pain, and this is almost always possible." If they say something like "not all pain can be controlled, but we do our best," be concerned. Pain can be controlled in 93% to 95% of all cases.
- Find out what they do if a patient needs more care than that which can be delivered in the home. Do they have a particular facility with trained hospice nurses (this is ideal) or do they admit the patient to a nursing home with hospice support?
- Are they affiliated with a religious institution? If they are, ask how that affiliation influences the care delivered and the end-of-life options available.
- Ask where they stand on palliative sedation. Use words such as: "If Dad’s pain or symptoms become impossible to manage would you provide IV medication to sedate him enough so he can be completely comfortable until death occurs?"
- Ask them what their weekend and night coverage is like (there should be a nurse available by phone 24 hours a day).
- Listen for the level of concern and kindness in the voice of the person you speak to. Does he/she respond thoughtfully to your questions?
Once you decide on a hospice
- A nurse and/or social worker will come to your home to do an intake interview. This visit may take several hours. Be sure that involved family or friends can be present.
- Try not to let yourself get overwhelmed. The hospice intake procedure can seem exhausting, with lots of questions and forms to sign. If you begin to feel tired or feel that you can no longer pay attention to what they are saying, ask them to come back the next day.
- If you have a preference for a male or female nurse, or any other preferences, tell them at that time.
- When you meet your nurse for the first time, describe any special needs you have. Be clear about what you want from your nurse: do you want the nurse to "be straight" with you, are you uncomfortable talking about your feelings? If you have special concerns about pain, or about your family members, explain this to your nurse.
- If you want the nurse to come out more frequently or less frequently, let her know. You are in charge – always.
- If you do not like your nurse, if his or her speech, behaviors or other habits make you uncomfortable, you may call the hospice and ask to speak to the nursing supervisor. Tell them that you would like a different nurse.
- If your hospice is not being responsive or helpful, you may always "fire" them, and find a new hospice. This rarely happens but it is your right.
- Read through the written materials your hospice gives you. Have everyone involved in your care read them.
- Make sure you and anyone staying in the home knows how to reach hospice. Hospice should be called first before calling 911. Post the hospice phone number near every phone.
If you have any questions, please contact us or Compassion & Choices End-of-Life Counseling at 800-247-7421 The staff and volunteers will be happy to talk with you.