Everything Your Family Needs to Know, From Your Early Questions to Selecting a Team
Includes a Printable Checklist To Help You When You Need It
Families don’t typically start thinking about hospice with a clear roadmap of what to do next. Instead, they are trying to handle complicated emotions and all the information they’ve received from physicians and nurses, family and friends.
It’s a lot to take in at a critical time.
This guide is for families like this: those who need clear guidance about next steps when a loved one is ready to stop seeking treatment for their chronic illness and focus on comfort and rest at home.
Print this guide or bookmark it on your phone, so you can look at it whenever you need it. There’s also a checklist at the end that you can print or save. Remember that Phoenix Home Care & Hospice is here for you to answer your questions, listen to your needs, and find a solution that helps you and your loved one.
Part One: Understanding Home Hospice Care
Hospice is comfort and pain-management focused care for a loved one with a life-limiting illness. A physician must determine, based on the normal course of that illness, that your loved one has a life expectancy of six months or less.
The decision to enter hospice means shifting from trying to treat or cure the illness to managing pain, controlling symptoms, and preserving the best quality of life possible.
Hospice is not giving up. Hospice is a deliberate and brave choice to spend time at home among family and friends without the exhaustion of ER visits, aggressive treatments, or constant monitoring.
Hospice does not always mean that your loved one’s life is over. People who choose home hospice care may have far more time at home than you might expect. Some may even be reevaluated and go “off” of hospice.
Hospice is not only for people with cancer.
Hospice applies to a wide range of conditions, including heart disease, ALS, Alzheimer’s, Parkinson’s, renal disease, pulmonary disease, liver disease, stroke, MS, and others. If your loved one’s physician believes their illness would follow its natural course within six months without curative treatment, they may qualify.
Support is available for the whole family from a hospice provider.
Many families are surprised to learn that support from a hospice agency includes physical, emotional, and spiritual care for their loved one, along with social work and bereavement counseling to create a circle of care around the entire family.
A Quick Note On Terminology: Hospice Care and Palliative Care
Some medical professionals call home hospice care “palliative care.” This can be confusing as you try to get the best information possible.
Palliative care technically refers to care that patients receive for pain management and comfort while they are still receiving curative treatment.
Although it is true that hospice care is “palliative” (because it eases pain), hospice is a specific benefit with unique services. If you are looking for hospice and it is described as palliative care, ensure your hospice provider delivers all that hospice has to offer (see Part Four below).
Part Two: Signs It’s Time for Home Hospice Care From Direct Experience
Families and their loved ones often ask their physicians, “How do we know when it’s time?” The honest answer is that the signs that hospice is needed often build up over time, but at some point there will be a clearer picture in front of you.
From our conversations and intensive work with families and loved ones at Phoenix Home Care & Hospice, these are the most common indicators that hospice may be appropriate:
- Progressive, unintended weight loss
- Frequent infections or recurring fevers
- Increased falls or loss of mobility
- Confusion or significant cognitive decline
- Decreased appetite or reduced ability to eat
- Pain that is poorly controlled with current treatment
- Difficulty breathing, even at rest or with oxygen support
- Wounds that are not healing
- Repeated hospitalizations without improvement
- A decision to stop curative treatment for a terminal condition
- Loss of interest in activities the person once valued
- Losing the ability to communicate verbally
One or two of these signs on their own may not determine the answer, but as symptoms continue to show up, they tell a story that a physician and hospice team can help you interpret. If you’re noticing several of these signs, it may be worth a conversation with your loved one’s physician as soon as possible.
Part Three: Who Qualifies? How Do Benefits Work?
These are the fast, easy to comprehend details about qualifications and benefits.
Qualification
Qualifying for hospice requires two things:
- A physician’s certification that your loved one has a terminal illness with a life expectancy of six months or less if the illness follows its normal course
- Your loved one’s choice to pursue hospice care in place of curative treatment for that condition.
Coverage
Medicare and Medicaid cover hospice care. Most private insurance plans include some coverage for hospice, as well. Hospice covers medications, supplies, and equipment specifically related to the terminal diagnosis.
How Long Hospice Can Last
Hospice is initially certified for two 90-day periods, followed by unlimited 60-day periods. After the first six months, your loved one can continue receiving home hospice care as long as their physician re-certifies that the terminal prognosis still applies. Hospice care is not a fixed window that closes.
Primary Physician Involvement
Your loved one can also keep their current physician involved during hospice. The hospice team, which includes its own physician, coordinates care and can keep your loved one’s regular doctor informed and engaged throughout.
Do You Have a Choice for Your Hospice Provider?
You do have a choice about your hospice provider. When a physician or hospital recommends hospice, it can feel as though the decision has been made, as they will likely point to a local agency that they currently have a relationship with. However, you can ask for other names, request specific organizations, and choose the team that feels like the best fit for your loved one.
Part Four: What’s Included In the Hospice Benefit
The hospice benefit is more comprehensive than most families expect. Hospice provides:
A registered nurse case manager to coordinate your loved one’s individualized plan of care, conduct scheduled visits, monitor symptoms, adjust medications, and serve as the primary clinical point of contact for your family.
24/7 on-call nursing is available by phone around the clock for questions, concerns, and urgent needs.
A hospice physician collaborates with your loved one’s regular physician to oversee the care plan and certify continuing eligibility.
A hospice aide provides scheduled personal care, including bathing, grooming, and hygiene support. Frequency is determined by the care plan.
A medical social worker offers emotional support, helps navigate difficult family decisions, connects you with community resources, and provides practical guidance for challenges that arise outside of clinical support.
A chaplain provides spiritual support adapted to your loved one’s beliefs and preferences. This service is not religious, but spiritual in nature, and it is open to all.
Trained volunteers are community members who give their time to offer companionship, sit with your loved one, run errands, or provide relief to family members.
All medications, supplies, and equipment related to your loved one’s terminal diagnosis, including items like a hospital bed, wheelchair, oxygen, wound care supplies, and the medications that manage pain and symptoms.
Respite care, which is short-term inpatient care in a partner facility, designed to give family caregivers a break. Respite is not a sign that you’re failing as a family member. It is part of the benefit, and it exists because hospice is challenging for family members and requires rest.
Bereavement support, which includes grief counseling and family check-ins for up to 15 months after your loved one passes. The hospice team’s role does not end when your loved one passes. They continue to walk alongside the family through what comes after.
Pamper care may also be available. For example, at Phoenix Home Care & Hospice, we provide hair styling, nail care, premium bath products, and personal care touches to help your loved one feel cared for.
Part Five: Tips for Family Members
Families often feel uncertain about what they’re supposed to do during hospice. Here are our recommendations for what families should focus on during this very challenging time:
First, know that you don’t have to do anything perfectly. Hospice is an important transition in your loved one’s and family’s life. Emotions and actions are never perfect during this time. However you experience your circumstances is okay, and there is always help available.
You won’t have to perform nursing tasks. Your loved one’s hospice team will handle clinical care. Just be present as a caring family member.
Feel free to communicate your loved one’s preferences, routines, and favorites. You know your loved one best, and your insights are invaluable to the hospice team.
Family members sometimes notice changes before a clinical team does. Don’t worry about sharing these observations with the “right terminology.” Just share openly. The hospice team is there to listen.
Designate a primary family contact to communicate with the hospice team. Creating a point of contact provides clarity and structure, so that all family members are on the same page and nothing slips through the cracks.
Write down questions as they come to you. You may realize something you want to ask about in the middle of the night. Keep a running list, so you get the help you need during visits.
Ask for respite care when you need it. Caregiver burnout and fatigue can deeply affect family members. If you are experiencing poor sleep, loss of appetite, persistent worry, exhaustion, or depression, you may need a break. Taking a break is never a failure. It’s the responsible thing to do.
Part Six: How to Choose a Home Hospice Care Provider
When evaluating hospice providers, a conversation with the hospice team will help you make your decision.
Questions worth asking any hospice provider you consider:
- Who will visit regularly?
- Will we see familiar faces?
- Who answers the phone overnight for urgent matters?
- How quickly can a nurse respond?
- How do you communicate with our family?
- What happens if symptoms escalate quickly?
- How do you support family members who are also caregivers?
- Do you offer respite care, and how is it arranged?
- What does bereavement support look like for our family?
- Do you offer any additional services beyond the standard hospice benefit?
- What are your core values as a home hospice agency?
You’ll know when you’ve found a team whose answers align with what you imagine for your loved one’s care.
Your Printable Checklist for Home Hospice Care
Phoenix Home Care & Hospice: (855) 925-2939
Signs to Discuss With Your Loved One’s Physician
- Progressive, unintended weight loss
- Frequent infections or recurring fevers
- Increased falls or loss of mobility
- Confusion or significant cognitive decline
- Decreased appetite or reduced ability to eat
- Pain that is poorly controlled with current treatment
- Difficulty breathing, even at rest or with oxygen support
- Wounds that are not healing
- Repeated hospitalizations without improvement
- A decision to stop curative treatment for a terminal condition
- Loss of interest in activities the person once valued
- Losing the ability to communicate verbally
Questions To Ask Potential Hospice Providers
- Who will visit regularly, and will we see familiar faces?
- Who answers the phone overnight for urgent matters?
- How quickly can a nurse respond?
- How do you communicate updates to our family between visits?
- What happens if symptoms escalate quickly at home?
- How do you support family members who are also caregivers?
- Do you offer respite care, and how is it arranged?
- What does bereavement support look like for our family after our loved one passes?
- Do you offer anything beyond the standard hospice benefit?
- What are your core values as a home hospice agency?
Notes For When Hospice Begins
- Name and direct number of your home hospice agency and registered nurse case manager:
- 24/7 on-call nursing number:
- Name and contact for medical social worker:
- Name and contact for chaplain:
- Other important numbers:
Family Reminders
You don’t have to do anything perfectly.
However you experience this time is okay. There is always help available.
Share your loved one’s preferences, routines, and favorites with the team.
You know your loved one best. Your insights shape the care they receive.
Share observations openly. No clinical terminology required.
If something seems different, say so. The hospice team is there to listen.
Ask for respite care when you need a break.
Poor sleep, persistent worry, and exhaustion are signs you need rest.
Phoenix Provides Hospice Care Throughout Missouri and Kansas
Driven by our core values of patience, honesty, and compassion, we serve Missouri and Kansas with exceptional hospice care that treats your loved one like family.
Find your Phoenix office to start a conversation with our team.
