What to Expect with Hospice
Someone Has Recommended Hospice – Now What?
You may have been subconsciously preparing yourself for weeks or more, but the doctor’s words still stun you: “I think it’s time to bring in hospice.” She continues talking, but you can’t concentrate because you bombard yourself with a litany of questions. Does this mean we are giving up? How long does he have left? Will he have to move from his nursing home or will he have to change rooms? What services does hospice provide? How much does it cost? Who will support me? Where do I even start?
What is hospice? Hospice is not a place; rather it is an approach to care at end of life that focuses on comfort. Choosing hospice doesn’t mean giving up; instead, it means your goal of care is to seek comfort instead of aggressive, curative treatment. A physician (or other professional) may recommend hospice when your loved one has a terminal illness. This referral to hospice does not always mean that your loved one has only a few days to live. The Centers for Medicare and Medicaid Services (CMS) requires a prognosis of “six months or less.” Hospice will not speed up the dying process.
What does hospice provide?
- Hospice care uses a multi-disciplinary team approach that includes the services of a registered nurse case manager (RNCM), licensed social worker, certified aide, chaplain, volunteers, and grief support. The goal is to give comfort for both patient and family by addressing physical, emotional, and spiritual needs.
- Some hospice agencies make available massage therapy, music therapy, and other special programs. All team members and programs are under the supervision of the hospice Medical Director (an M.D. or D.O.) and Clinical Director (an R.N.).
- The hospice supplies all comfort medications, any medications to help control symptoms of the primary diagnosis, all necessary medical equipment (e.g., hospital bed, wheelchair, supplemental oxygen), and medical supplies.
- The hospice will connect you with community resources for additional support.
- Your hospice team will provide post-death care, including pronouncing the death, notifying the physician (and Coroner, if required), and calling the funeral home.
- Grief support is available for the family for thirteen months after your loved one’s passing.
What does hospice not provide? While hospice personnel are always available for emergencies, hospice does not supply around-the-clock care. Many hospice agencies do strive to be present in the hours immediately preceding a death. Hospice neither provides nor pays for any aggressive or curative treatment. Your RNCM or the hospice’s Clinical Director can answer your specific questions about what hospice will cover.
What is the cost? The cost of hospice services is covered 100% for Medicare/Medicaid recipients. Most private insurance policies will pay for all or part of hospice care. Talk to your hospice representative to get answers to specific billing questions (e.g., copays and deductibles).
Will my loved one go to a hospice house? The vast majority of hospice patients choose to stay in their home (i.e., a private home, the home of a friend or family member, assisted living, nursing home) and care is provided there. A handful of hospice houses are available in the Kansas City area for the last few days of life only if pain symptoms cannot be controlled at home. This is an option for a small number of patients, but most prefer to stay in familiar surroundings with caregivers they know and avoid the distress of a move in the last days or hours of life.
What does this process typically look like?
*A physician, nurse, social worker, family member, or even your loved one may suggest hospice care.
*If you haven’t already, you should discuss goals of care with your loved one. If your loved one cannot make their own decisions, you should consult with their Power of Attorney for Health Care and/or their advance directives for guidance. Talk to other family members if these are not available.
*You will need a physician’s order to “evaluate and treat for hospice.” You may ask the doctor directly, but the nursing home staff or the hospice provider you have selected can request this for you.
*Once you choose a hospice provider (see Selecting a hospice provider below), someone from that agency will make an appointment to meet with you and your loved one. At this meeting, you will sign forms granting consent for the hospice provider to begin care. You will also receive a copy of everything you sign. These forms are necessary for record-keeping and for notifying CMS (or your private insurance carrier) of your decision to begin hospice care with this particular agency.
*Signing these documents allows the hospice provider access to review your loved one’s medical records, as well as for an RN to complete an assessment. The agency will determine whether or not your loved one meets the requirements to be admitted to hospice care. Please note that it is possible, despite having a physician’s order, for your loved one not to qualify for hospice at this time. Hospices must comply with strict CMS regulations. If your loved one does not qualify, you have two options: 1.) you may seek the opinion of another hospice (essentially repeating this step) or 2.) you may stay in touch with that hospice and notify them as your loved one’s condition changes. Your loved one’s nursing home staff, if applicable, will also help you if you choose this second option.
*Services will be immediately available if the admitting nurse determines that your loved one qualifies for hospice care. The admitting nurse will order all necessary medications and medical equipment. In most cases the RN Case Manager will visit your loved one the next day. The hospice aide, social worker, and chaplain will also visit within five days unless declined by you or your loved one.
*You may stop hospice services (i.e., “revoke”) at any time for any reason should the goals of care change. You are under no obligation to continue hospice care.
1. Keep a notebook handy to jot down questions that arise.
2. Know how to contact your hospice team, as well as how to reach the hospice after hours or in case of an emergency.
3. Make time to take care of you. Good nutrition, regular exercise, adequate rest, and support (social, emotional, and spiritual) are all critical to your well-being, and ultimately to your loved one.
4. Take advantage of all the support your hospice team offers both before and after your loved one’s passing.
Selecting a hospice provider
Where do I begin? Patients and their families often have time to explore their options before deciding on which hospice agency to trust with the care of their loved one. Ask for recommendations from your physician, family, and friends. If your loved one lives in a nursing home, ask some of the staff (especially nurses and social workers) for their opinion. They are not allowed to push you toward or away from particular agencies, but they can tell you which hospice providers have a reputation for quality care. Your situation and needs are unique, so don’t worry if you choose a different hospice provider from what friends or family have suggested. You need to do all you can find the best care for your loved one.
Investigate. Each hospice agency’s website will provide some basic information, such as ownership (are they part of a larger “chain” or are they locally owned?), for-profit or not-for-profit, and accreditation status (all agencies must adhere to CMS requirements, but some providers choose to follow higher quality standards that come with being nationally accredited).
Interview. If time allows, meet with two or three hospice providers (for about 30 minutes each) to learn what sets them apart from others. You might ask questions such as:
- What is the caseload of a typical RNCM? [Generally speaking, the lower the ratio, the more time the R.N. Case Manager can spend with each patient.]
- How often will my loved one’s RNCM visit? [Sometimes the R.N. Case Manager will visit only once every 14 days, leaving remaining visits to other nurses.]
- What special programs do you offer? [This may be especially important if your loved one would benefit from a Music Therapist, a veterans’ program, or an active volunteer program.]
- Do you have a plan in place to be present when my loved one dies? Or, you may ask, “What is your attended death rate?” [Most hospices try to have a staff member present at the time of death, but some are more intentional about it.]
- What makes your hospice agency unique?
Finally, note how much the hospice provider’s representative pays attention to you and your loved one. Do you feel as if they are selling a product or that they genuinely seem to care about you, your loved one, and your needs?
Remember. Despite how you may feel at times, you aren’t alone. The nursing home staff, your friends, extended family, and your hospice team are eager to help you navigate through these challenges.