Navigating Hospice Care

Introduction

When you or someone you love is facing a serious illness, understanding hospice can feel overwhelming. In our short video, Amanda from Understood Care explains that you have options. Palliative care focuses on comfort and quality of life at any stage of a serious illness. Hospice care focuses on comfort and quality of life when a clinician believes life expectancy is about six months or less if the illness follows its usual course. Teams can visit you regularly, teach families what to expect, coordinate medicines and equipment, and remain available by phone at all hours. Hospice can sound scary at first, yet many families report that the support for both patients and loved ones is remarkable and a relief once it is in place.

What hospice care is, and how it differs from palliative care

Both hospice and palliative care are centered on comfort, symptom control, and dignity. Palliative care can be provided at any time during a serious illness and can be given alongside treatments aimed at cure or control. Hospice is chosen when the focus shifts entirely to comfort and quality of life and curative treatments for the terminal condition are stopped. A hospice team includes doctors, nurses, social workers, spiritual care providers, home health aides, and trained volunteers who support you and your family. Someone from the hospice team is usually available by phone twenty four hours a day, seven days a week.

Where care happens

Hospice care is provided where you live whenever possible, including a private home, assisted living, or nursing facility, and when needed in an inpatient hospice unit or hospital. A hospice team visits regularly and adjusts the plan to your needs. If a short hospital stay is required, the hospice team arranges the admission so your costs are protected under the hospice benefit.

Who qualifies and how Medicare works

You qualify for the Medicare hospice benefit if you have Medicare Part A and all of the following apply

• Your hospice doctor and your regular doctor, if you have one, certify that you are terminally ill with a life expectancy of six months or less if the illness runs its usual course
• You choose comfort care rather than treatment aimed at cure for the terminal condition
• You sign a statement choosing hospice for your terminal illness and related conditions

If you qualify, you receive two initial ninety day benefit periods followed by an unlimited number of sixty day periods, as long as a hospice clinician recertifies that you remain eligible. You may change hospice providers once every benefit period if needed.

What it costs under Original Medicare

Most people pay nothing for covered hospice services when they choose a Medicare approved hospice. You may have a small copay of up to five dollars for outpatient medicines used for pain or symptom relief, and you may pay five percent of the Medicare approved amount for short term inpatient respite care for caregivers. Room and board are not covered if you live in a facility unless the hospice team arranges a covered short inpatient stay for symptom management or respite. Services unrelated to your terminal illness continue to be covered by Medicare with usual deductibles and coinsurance.

If you are in a Medicare Advantage plan

When you elect hospice, Original Medicare covers your hospice services even if you stay enrolled in your Medicare Advantage plan. Your plan can still cover unrelated services and extra benefits that are not part of your terminal condition.

What hospice provides

Your hospice plan of care is built around your goals and symptoms. Common services include

• Regular visits from nurses with twenty four hour phone support for urgent needs
• Home health aide support for personal care
• Physician and nurse practitioner involvement for symptom control
• Social work and spiritual care for emotional and practical support
• Medicines, supplies, and medical equipment related to the terminal condition
• Short term inpatient care when symptoms cannot be managed at home
• Short term inpatient respite care to relieve caregivers
• Bereavement support for family after death

These services focus on comfort, safety, and quality of life for you and your loved ones.

The four levels of hospice care

Hospice services adjust as needs change. Medicare recognizes four levels of care

• Routine home care, the most common level, provided wherever you live
• Continuous home care, temporary intensive support at home during a crisis
• General inpatient care, short stays in a hospital or hospice unit for complex symptoms
• Inpatient respite care, a short stay to give caregivers a rest

Your team recommends the level that fits your situation and can move between levels as needed.

Family support and bereavement services

Hospice supports the entire family. Counseling and education help caregivers learn safe care techniques, prepare for changes, and make decisions. After a death, hospices must offer bereavement services for up to one year for family and others named in the plan of care. Support may include check in calls, grief groups, mailings, referrals, and memorial events.

How palliative care fits before and during hospice

Many people start with palliative care when symptoms become hard to manage or when frequent visits and coaching would help. Palliative clinicians can see you in the hospital, clinic, or sometimes at home, and they work alongside your other clinicians. If the focus later shifts fully to comfort, your palliative team and primary clinician can help you transition to hospice smoothly.

What Amanda shared in the video, translated into a simple plan

Amanda explains that palliative care can step in when breathing, heart, or other symptoms are causing trouble and you would benefit from a clinician checking on you and adjusting treatment. If needs grow, the team can help you move into hospice. In hospice, you can expect regular visits, medicines and equipment related to comfort, and twenty four hour phone support so someone is always reachable. Families often tell us that hospice staff make a hard season more manageable, emotionally and practically. If you think you might be close to needing hospice or want to understand options, our team is ready to walk you through each step.

How Understood Care helps you navigate next steps

If you are unsure whether palliative care or hospice is right for now, an advocate can help you think through your goals, coordinate with your clinicians, and set up services. We can

• Arrange conversations with your primary and specialty clinicians and prepare questions with you
• Coordinate orders for medicines, equipment, and supplies, and review costs so there are no surprises
• Help your family understand what to expect and connect you with caregiver supports and respite options

Explore caregiver support at https://understoodcare.com/healthcare-info/caregiver-support
See what care coordination includes at https://understoodcare.com/care-types/care-coordination
Review costs and coverage at https://understoodcare.com/pricing
Learn how advocates assist day to day at https://understoodcare.com/healthcare-info/how-our-care-team-assists-you

A gentle step by step to get started

Step 1. Talk with your current clinician about goals and symptom control. Ask if palliative care or hospice might fit your needs now.
Step 2. Call us to discuss what you want most in the weeks and months ahead. We will help you prepare for the conversation and gather needed records.
Step 3. If hospice is appropriate, we help you choose a Medicare approved hospice that matches your values and location, schedule the start of care, and coordinate equipment delivery.
Step 4. We stay with you, checking on symptom control, answering family questions, and coordinating updates across the team.

Your rights and choices

You can change hospice providers once per benefit period if the fit is not right. If your goals change, you can revoke hospice and return to your usual Medicare coverage, then re elect hospice later if needed. Services that are not related to your terminal condition can still be covered under Medicare with normal cost sharing. Your hospice team should arrange any needed inpatient stays so you do not face unexpected bills.

Safety note

Medicare warns that fraud can occur. Only your doctors can certify hospice eligibility, and you should not be pressured to enroll or to accept gifts for signing up. If someone offers services that are not part of your hospice plan, call your hospice first or contact Medicare.

FAQ

• ‍What exactly is hospice care
  Hospice is comprehensive comfort focused care for people with terminal illnesses who choose relief of symptoms rather than treatment aimed at cure, with family support and twenty four hour phone access to the hospice team. ‍
• How is hospice different from palliative care
  Palliative care can be provided at any time during a serious illness and can be given with curative treatments. Hospice begins when the plan is fully focused on comfort near the end of life. ‍
• Who decides if I am eligible
  Your hospice doctor and your regular doctor, if you have one, must certify that life expectancy is about six months or less if the illness runs its usual course. Eligibility is then reviewed at set intervals. ‍
• What does Medicare cover and what might I pay
  Covered services include clinician visits, nursing, home health aide support, medicines, supplies, and equipment related to your terminal condition, plus short term inpatient and respite care when needed. You may pay up to five dollars for certain outpatient medicines and five percent of the approved amount for inpatient respite care. Room and board are not covered when you live in a facility unless the hospice team arranges a short covered stay for symptom control or respite. ‍
• What are the four levels of hospice care
  Routine home care, continuous home care during a crisis, general inpatient care for complex symptoms, and inpatient respite care to give caregivers a break. Your team moves between levels as needed. ‍
• Can I keep my Medicare Advantage plan
  Yes. When you elect hospice, Original Medicare pays for hospice services, and your Medicare Advantage plan can still cover unrelated services and any extra benefits, as long as you continue to pay plan premiums. ‍
• Can I leave hospice and come back later
  Yes. You can revoke hospice at any time if your goals change and you can re elect hospice later if you meet criteria. You can also change hospice providers once in each benefit period.
• How long does family receive support after a death
  Hospices must make bereavement services available for up to one year to family and others named in the plan of care. Many programs provide support for about thirteen months. ‍
• How can Understood Care help right now
  We can prepare you for a goals of care discussion, set up palliative or hospice services, coordinate equipment and medicines, and support your family. Learn more at https://understoodcare.com/how-advocates-support‍

References

• Medicare Hospice Care Coverage
  https://www.medicare.gov/coverage/hospice-care
• Medicare Hospice Benefits Booklet
  https://www.medicare.gov/publications/02154-medicare-hospice-benefits.pdf
• CMS Medicare Benefit Policy Manual Chapter 9 Hospice
  https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Downloads/bp102c09.pdf
• National Institute on Aging, What Are Palliative Care and Hospice Care
  https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care
• Cleveland Clinic, What Is Hospice Care
  https://my.clevelandclinic.org/health/articles/21673-hospice
• Cleveland Clinic, Palliative Care Purpose and What To Expect
  https://my.clevelandclinic.org/health/articles/22850-palliative-care
• Mayo Clinic, Hospice Types of Care and Services
  https://www.mayoclinic.org/departments-centers/hospice/sections/types-of-care/gnc-20481747
• Medicare, Hospice Levels of Care
  https://www.medicare.gov/care-compare/resources/hospice/levels-of-care/

If you would like help comparing local hospice programs, coordinating a smooth start of care, or understanding costs before you enroll, we would be honored to help. Explore care coordination at https://understoodcare.com/care-types/care-coordination or connect with an advocate at https://understoodcare.com/how-advocates-support.

This content is educational and is not a substitute for medical advice. Always consult your healthcare provider for personalized care.