Frequently Asked Questions and Questions that Families Should Ask their Hospice Team:
Will my loved one have to stop taking all of his scheduled/regular medications? Signing onto hospice services does not mean that your loved one will have to stop all medications. Sometimes, patients do not want to take all of their many prescribed medications, and then the physician and nurse will determine which medications can be safely discontinued to “lessen the pill burden” for your loved one. Medications will be reviewed frequently by the hospice RNCM/nurse. Always check with your Hospice Nurse before starting or stopping any prescribed or over the counter medications.
Who do I call if my loved one is having discomfort after regular business hours? Hospice Agencies provide 24 hour nursing services to all hospice patients. Hospice RNCMs usually work M-F from 8AM-4:30PM and then an after-hours team of nurses will cover evenings, nights, weekends, and holidays. Your hospice agency will give you specific information on how to get in touch with a Hospice nurse during hours outside of regular business hours. Most times, you are transferred to an answering service: You will be asked your name, your loved ones name, your call-back number, and a brief description of your reason for the call. The answering service will then page the on-call Nursing Team/Triage Nurse and you should receive a call back within 10-minutes. If you don’t get a call back in 10-minutes, call back again.
My loved one has fallen and can’t get up. Who do I call? Call your Hospice Team immediately. They will direct you on whether to call your local Non-Emergency Ambulance Team vs having a hospice nurse come out to the home vs calling 911.
Anytime your loved one falls, whether they are hurt or not hurt at all, always call your hospice team – no matter what time it happens.
Who do I call when my loved one dies? If you loved one is on hospice services, call your Hospice Team immediately and notify them of your loved one’s passing/death. The Hospice Nurse will come to your home/facility and pronounce the death. The Hospice Nurse will contact any other family members, if you need assistance with this, and they will contact the Funeral Home when you are ready. Your Hospice Team can also have the Social Worker and Chaplain come out to help support you and other family/friends emotionally and spiritually.
My loved one has Medicare Insurance. How much does hospice cost? The hospice benefit from Medicare is no cost. You will get all of your Hospice team members, DME, medications related to comfort, and medications related to the terminal/primary diagnosis at no additional cost.
My loved one does not have Medicare, so how much will this cost? It is recommended that you contact your health insurance carrier to determine the hospice benefit and the expected costs/financial responsibility. There should be a phone number on the back of your health insurance card for customer service or benefit services. The hospice agency can also contact your insurance company on your behalf for benefit information.
When my loved one elects hospice and signs the paperwork, will a nurse come and care for my loved one 24 hours a day? The Routine Hospice benefit does not provide 24-hour caregivers nor 24-hour nursing services. When electing the hospice benefit, the hospice patient must have a caregiver that is willing and able to provide end of life cares. This is usually a family member, a friend, or a family-hired caregiver. The chosen caregiver(s) does not have to have experience in caregiving, as the hospice team will help educate the caregiver/family member on providing end of life cares. The hospice Social Worker can help provide referrals to outside agencies that families can hire to provide cares for their loved one (paid for by the family/hospice patient), if families are interested in this service.
I don’t know how to provide personal cares for my loved one, will I still be able to help keep my loved one in the home? If you are willing and able to provide end of life cares for your loved one in his/her home, the hospice team will teach you how to provide safe, appropriate, personal cares for your loved one. There is always a nurse available 24-hours-a-day for questions, concerns, or changes in condition and can provide assistance over the phone. They can also provide an additional hospice nurse visit for any unexpected changes/needs that can arise.
How often will the hospice team visit? The Hospice Nurse’s visits will depend on the condition of your loved one. Sometimes the RNCM (nurse) will visit once a week for about an hour for patient’s that don’t need as much nursing care. Sometimes the RNCM will visit three times a week for patient’s and loved one’s that need more assistance or to monitor changes in condition. The number of times a nurse visits your home during the week will vary depending on the needs of the hospice patient and the caregivers/family. When your loved one starts to decline, the RNCM will come out to the home more frequently for assessments, for symptom management (if patient has an uncomfortable symptom), for education to the patient and/or caregiver, and for additional support. The Hospice Social Worker and the Hospice Chaplain will also determine the number of visits per week or month depending on the needs of the patient and family/caregiver. The Social Worker and Chaplain change change their visit frequencies (how often they come out) as needs change or as patient begins their decline in condition. Home Health Aide’s will visit 1-5 times per week for an hour each visit. Their visits can increase as the patient declines and more personal cares are needed.
What if I don’t like my hospice team? You have every right to be happy with your hospice team. If you are having difficulty with your hospice team, we recommend you reaching out to the Hospice Team Manager or the Hospice Administrator (you can call your hospice agency office and ask for one of these members). Let the Hospice Team Manager or the Hospice Administrator know your frustrations, and hopefully they can help with a resolution. If you still aren’t satisfied with the hospice team, you have every right to switch to another hospice agency. You can reach out to other hospice agencies for more information about their program and how to change hospices.
Can I give my hospice team members gifts or money for all the care and support they are providing me and my loved one? Each hospice agency has their own set of rules when it comes to gifts. Although your thoughtfulness of a monetary gift is appreciated, it is not necessary and will oftentimes have to be refused due to agency rules. Hospice Team Members care for your loved one and provide support and education to you because this is their passion. They want to be able to help and have chosen a career that allows them to help others during the journey in end-of-life. If you’d like to show your appreciation, we would recommend writing kind words in a letter or greeting card to the hospice team, or you can contact the Hospice Administrator via email, phone, or letter to express your gratitude for the cares shown to you and your loved one. As a current hospice nurse, the best gifts I receive are the kind words (verbal, letters, cards) from the families of the hospice patients I have helped care for during their end-of-life journey. But again, cards and letters are NEVER expected from anyone. This is our job, this is our chosen career, this is our passion, and helping our hospice patients journey peacefully from this life is just what we do.