Questions to Ask Before Starting Hospice Care

Hospice team member answering questions with loved ones at home before starting hospice care

Starting hospice care can bring relief, but it can also bring many questions. Patients and loved ones may wonder what hospice includes, who will visit, what is covered, how medications are handled, whether care can happen at home, and what to expect if the person’s condition changes.

These questions are normal. Hospice is often discussed during an emotional time, and loved ones may be trying to make decisions while also managing fear, grief, caregiving responsibilities, and medical information.

Asking questions before starting hospice care can help everyone feel more informed and prepared. It can also help patients and loved ones understand the plan of care, what support may be available, and who to call when something changes.

This guide shares helpful questions to ask before starting hospice care, including questions about eligibility, team visits, medications, equipment, supplies, coverage, caregiver support, after-hours guidance, and what happens next.

This article is for general educational purposes only and does not constitute medical, legal, insurance, financial, or mental health advice. Hospice services, eligibility, medications, equipment, supplies, visit frequency, and coverage may vary based on the patient’s diagnosis, condition, individualized plan of care, location, payer, and hospice eligibility. Speak directly with the hospice provider, physician, or insurance plan about your specific situation.

1. Is Hospice the Right Type of Care Right Now?

One of the first questions to ask is whether hospice is appropriate at this point in the illness. Hospice care is generally for a person with a serious illness when the focus of care has shifted toward comfort, dignity, and quality of life instead of curative treatment for the terminal illness.

Helpful questions include:

Does the physician believe hospice may be appropriate now?
What signs suggest that hospice should be considered?
Is the person’s illness progressing despite treatment?
Are symptoms becoming harder to manage?
Are hospital visits, emergency visits, or infections becoming more frequent?
Is the person weaker, eating less, sleeping more, or needing more help with daily care?
What would hospice focus on for this patient?

Asking about hospice does not mean you have failed or given up. It means you are exploring what kind of support may help now.

2. What Does Hospice Care Include?

Hospice care is provided by a team, and services are guided by the patient’s diagnosis, condition, goals, coverage, and individualized plan of care. Before starting, ask what care may be included for your situation.

Helpful questions include:

What services are included in the hospice plan of care?
Who will be part of the hospice care team?
How does hospice support comfort and quality of life?
What symptoms can hospice help manage?
What support is available for loved ones and caregivers?
How often is the care plan reviewed?
How does the team update the plan if needs change?

Hospice care is not one-size-fits-all. The plan should reflect the patient’s needs, goals, and comfort priorities.

3. Who Will Be on the Hospice Care Team?

Hospice care is a team effort. Knowing who is involved can help loved ones understand what kind of support to expect and who to contact with questions.

The hospice care team may include:

Hospice nurse
Hospice physician or medical director
Hospice aide
Social worker
Chaplain or spiritual care provider
Volunteer support when appropriate
Bereavement support

Helpful questions include:

Who will visit first?
Who is our main point of contact?
What does the hospice nurse do?
Will a hospice aide help with bathing or personal care?
Can we speak with a social worker?
Is chaplain or spiritual care optional?
Are volunteers available in this area?
What bereavement support is available after a loss?

Understanding the team can make hospice feel less unfamiliar and more supportive.

4. How Often Will the Hospice Team Visit?

Visit frequency depends on the patient’s needs, condition, care setting, and plan of care. Some patients may need more frequent visits at certain times. Others may have a different schedule based on symptoms and support needs.

Helpful questions include:

How often should we expect nurse visits?
How often can a hospice aide visit?
What determines visit frequency?
Can the schedule change if the patient’s condition changes?
Who should we call if we need more support?
Will visits happen at home, in a facility, or wherever the patient is receiving care?

It is important to understand that hospice provides support and guidance, but routine hospice care does not usually mean a team member is in the home 24 hours a day. Loved ones should ask what support is available and what caregiving responsibilities will remain with family, facility staff, or hired caregivers.

5. Can Hospice Care Happen at Home?

Many people receive hospice care wherever they call home. This may be a private residence, assisted living community, memory care community, skilled nursing facility, or another care setting.

Helpful questions include:

Can hospice care be provided where the patient currently lives?
What support is available in the home?
What if the patient lives in assisted living, memory care, or a skilled nursing facility?
How does hospice coordinate with facility staff?
What changes may be needed to make the space safer or more comfortable?
What should caregivers prepare before the first visit?

Hospice care is designed to support comfort and dignity in the patient’s care setting whenever possible.

6. What Medications May Be Included?

Medication questions are important before starting hospice care. Hospice may provide medications related to the hospice diagnosis and comfort-focused plan of care. Not every medication a patient takes is automatically covered by hospice.

Helpful questions include:

Which medications are related to the hospice diagnosis and plan of care?
Which medications may hospice provide?
Which medications may continue outside of hospice coverage?
Are any medications no longer helpful for the patient’s current goals?
Who reviews the medication list?
Who should we call with medication questions?
What should we do if pain, breathing, anxiety, nausea, constipation, or restlessness changes?
How are medication refills handled?

Do not stop, skip, or change medications without guidance from the hospice team or medical provider. If something is unclear, ask the hospice nurse to explain what is included and why.

7. What Equipment May Hospice Provide?

Hospice may coordinate medical equipment that is related to the hospice diagnosis and plan of care. Equipment needs vary by patient and may change over time.

Helpful questions include:

Will the patient need a hospital bed?
Will hospice provide a wheelchair, walker, bedside commode, or shower chair if appropriate?
Is oxygen needed, and would it be related to the care plan?
Who orders and delivers equipment?
Who teaches caregivers how to use equipment safely?
What should we do if equipment stops working?
Can equipment needs change as the patient’s condition changes?

Not every patient needs every item. The hospice team can help determine what equipment may support comfort, safety, and care.

8. What Supplies May Be Included?

Hospice may provide medical supplies related to the hospice diagnosis and plan of care. Supplies can support comfort and day-to-day care, but what is included depends on the patient’s needs and coverage.

Helpful questions include:

What supplies will be provided?
Are incontinence supplies included if related to the care plan?
Are wound care supplies included if appropriate?
Are gloves, dressings, catheter supplies, or skin care items needed?
How do we reorder supplies?
Who should we call if we run out?
Are there supplies we should not buy without asking hospice first?

If loved ones are purchasing supplies on their own, they should ask whether those items may be included or whether the hospice team recommends a different option.

9. What Is Covered, and What Is Not Covered?

Coverage can vary by payer, location, and care plan. Families should ask direct questions about what is included and what may not be included.

Helpful questions include:

What does the patient’s hospice coverage include?
What medications are covered under hospice?
What equipment and supplies are covered?
Are there any copays or out-of-pocket costs?
What services are not included?
Does hospice cover room and board in a facility?
What happens if the patient needs care unrelated to the hospice diagnosis?
Who can explain Medicare, Medicaid, private insurance, or payer-specific questions?

Hospice generally focuses on services related to the terminal illness and related conditions. Because coverage details can vary, it is best to clarify early instead of assuming everything is included.

10. What Does Hospice Not Usually Replace?

Hospice provides important support, but it does not usually replace all caregiving or every household need. This is important for loved ones to understand before care begins.

Helpful questions include:

Does hospice provide full-time caregiving at home?
Who will provide day-to-day care between visits?
Does hospice cover room and board in a facility?
Does hospice replace facility staff?
Does hospice provide household items, groceries, utilities, or general living expenses?
What responsibilities will remain with family, facility staff, or hired caregivers?

Knowing what hospice does and does not replace can help families plan realistically and avoid confusion later.

11. Who Do We Call After Hours?

One of the most important questions to ask is who to call when something changes. Hospice support includes access to guidance when urgent questions or changes arise.

Helpful questions include:

What number should we call after hours?
When should we call hospice instead of 911?
What symptoms should we report right away?
What happens when we call after hours?
Can a nurse visit if needed?
Who should we call for medication questions?
Who should we call if the patient falls, has pain, has breathing changes, or becomes restless?

Ask the hospice team to explain what to do for common changes such as pain, breathing concerns, agitation, fever, falls, swallowing problems, new confusion, or signs that death may be near.

12. What Should We Do if Symptoms Change?

Symptoms can change during hospice care. Loved ones should know what to report and how the hospice team responds.

Helpful questions include:

What symptoms should we watch for?
What changes are expected?
What changes should be reported immediately?
How do we know if pain is controlled?
What should we do if breathing changes?
What should we do if the patient becomes restless, anxious, or confused?
What if the patient stops eating, sleeps more, or stops talking?
How will the care plan be updated if symptoms change?

Families do not need to interpret every change alone. Hospice is there to guide loved ones through changes and support comfort.

13. What Should Caregivers Prepare Before Hospice Starts?

Before the first hospice visit, loved ones may want to gather basic information and think through the home environment.

Helpful questions include:

What documents should we have available?
Should we prepare a medication list?
Should we gather physician information, insurance cards, or advance directives?
Do we need to make space for equipment?
Who should be present for the first visit?
What questions should family members write down?
Who will be the main caregiver or point of contact?
How should we share updates with family members?

It may help to write down the patient’s current symptoms, recent changes, medications, allergies, care concerns, and goals. This can make the first conversation more productive.

14. Can the Patient Keep Their Doctor?

Some patients may continue to have their own attending physician involved while receiving hospice care. The hospice physician or medical director also helps oversee the hospice plan of care.

Helpful questions include:

Can the patient’s current doctor remain involved?
How does the hospice physician or medical director participate?
Who manages comfort medications?
Who should we call first with medical questions?
How does hospice communicate with the patient’s physician?

Understanding physician involvement can help families know who is guiding care and how decisions are coordinated.

15. What Happens if the Patient Changes Their Mind?

Patients and loved ones may wonder whether hospice is permanent once it begins. It is appropriate to ask what happens if goals change, the patient improves, or the patient wants to pursue different care.

Helpful questions include:

Can the patient stop hospice care if they choose?
What happens if the patient’s condition improves?
What happens if the patient wants treatment related to the terminal illness again?
Can hospice care be restarted later if appropriate?
Who explains the election forms and patient rights?

Asking these questions can reduce fear. Hospice should be explained clearly so patients and loved ones understand their options and rights.

16. What Support Is Available for Family Members?

Hospice care supports more than the patient. Loved ones and caregivers often need guidance, emotional support, education, and grief resources.

Helpful questions include:

What caregiver education is available?
Can someone help us talk through difficult family conversations?
Can the social worker support caregiver stress?
Is spiritual care available for loved ones?
What bereavement support is offered after a loss?
Are there resources for children or teens in the family?
Who can help us understand what to expect near the end of life?

Caregivers should not feel like they have to manage everything alone. Hospice can provide education, reassurance, and support during a difficult time.

17. How Will Hospice Respect the Patient’s Wishes?

Hospice care should be centered on the patient’s goals, values, and preferences. Before starting, ask how the team will learn what matters most to the patient.

Helpful questions include:

What does comfort mean to the patient?
Where does the patient want to receive care?
Who does the patient want involved in decisions?
Are there cultural, spiritual, or personal preferences the team should know?
Are there treatments or interventions the patient does not want?
How will the care team honor the patient’s dignity and privacy?

These questions help keep hospice care personal, respectful, and aligned with what matters most.

18. What Should We Ask During the First Hospice Visit?

The first hospice visit can feel like a lot of information at once. It is helpful to have a short list of questions ready.

During the first visit, consider asking:

Who is our main contact?
What number do we call 24/7?
What symptoms should we report?
What medications should we continue?
What medications are part of the hospice plan?
What equipment or supplies are being ordered?
When is the next visit?
What should we do tonight if something changes?
What does the care plan include right now?
What should we expect over the next few days?

Do not worry about asking too many questions. Hospice teams expect questions. They are there to help you understand the care plan.

A Simple Checklist of Questions Before Starting Hospice

If you need a shorter list, start with these questions:

Is hospice appropriate now?
What does hospice include for this patient?
Who will be on the care team?
How often will visits happen?
What medications may be covered?
What equipment or supplies may be provided?
What is not covered?
Who do we call after hours?
What symptoms should we report?
What caregiving responsibilities remain with loved ones?
What support is available for family and caregivers?
What happens if the patient changes their mind?

This checklist can help patients and loved ones feel more prepared before hospice care begins.

How Bristol Hospice Can Help Answer Your Questions

At Bristol Hospice, we understand that starting hospice care can feel emotional and unfamiliar. Patients and loved ones may have questions about eligibility, comfort care, services, coverage, medications, equipment, supplies, caregiver support, and what to expect next.

Our care teams are here to answer questions with compassion and clarity. We can help explain what hospice care may include, what support may be available, and how the plan of care is shaped around the patient’s needs and comfort goals.

You do not have to wait until every question is perfectly organized before reaching out. Sometimes the first step is simply asking, “Can you help us understand our options?”

Frequently Asked Questions About Questions to Ask Before Hospice

What questions should I ask before starting hospice care?
Ask about eligibility, what care includes, who will visit, how often visits happen, what medications may be covered, what equipment and supplies may be provided, who to call after hours, what is not covered, and what support is available for caregivers.

Does asking about hospice mean we have to start hospice?
No. Asking questions about hospice does not mean you have to begin care immediately. Many patients and loved ones start by learning what support may be available and whether hospice may be appropriate.

What should I ask about hospice coverage?
Ask what services, medications, equipment, and supplies may be covered based on the hospice diagnosis and plan of care. Also ask what may not be covered, whether there may be out-of-pocket costs, and who can explain payer-specific details.

What should I ask about hospice medications?
Ask which medications are related to the hospice diagnosis and comfort plan, which medications hospice may provide, which medications may continue separately, and who to call with medication questions.

What should I ask about hospice equipment?
Ask whether the patient may need a hospital bed, wheelchair, walker, commode, oxygen, or other equipment related to the hospice plan of care. Also ask who orders equipment and what to do if it stops working.

Does hospice provide 24-hour care at home?
Hospice provides 24/7 on-call support and guidance, but routine hospice care does not usually mean a team member is in the home 24 hours a day. Ask what support is available and what caregiving responsibilities remain with loved ones, facility staff, or hired caregivers.

Who should we call if something changes?
Ask the hospice team which number to call 24/7 and what symptoms should be reported right away. Changes such as pain, breathing concerns, agitation, falls, medication issues, swallowing problems, or sudden changes in alertness should be shared with hospice.

Can hospice care happen at home?
Hospice care can often be provided wherever the patient calls home, including a private residence, assisted living community, memory care community, skilled nursing facility, or another care setting.

Can a patient stop hospice if they change their mind?
Patients have rights and options. Ask the hospice provider to explain what happens if the patient chooses to stop hospice care, improves, or wants to pursue a different care plan.

What should families prepare before the first hospice visit?
Families may want to gather a medication list, physician information, insurance information, advance directives if available, recent symptom notes, care concerns, and questions for the hospice team.

Good Questions Can Help Families Feel More Prepared

Starting hospice care can feel like a big step. It may come with fear, relief, sadness, uncertainty, and many practical concerns.

Questions can help.

Asking about eligibility, team visits, medications, equipment, supplies, coverage, caregiver support, and after-hours guidance can make the process feel less overwhelming. It can also help patients and loved ones understand what hospice may provide and what responsibilities may remain with family, facility staff, or hired caregivers.

You do not need to know every question before you begin. The hospice team can help guide the conversation one step at a time.

Hospice care is meant to bring support, comfort, dignity, and guidance during a serious illness. Asking questions is one way to make sure the care plan reflects what the patient and loved ones need most.

Learn More About Hospice Care at Bristol Hospice

Bristol Hospice provides compassionate hospice and palliative care for patients with serious illnesses across several states nationwide. If you have questions about starting hospice care, eligibility, coverage, or what support may be available, contact our care team today.

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This article is for general educational purposes only and does not constitute medical, legal, insurance, financial, or mental health advice. Hospice services, eligibility, medications, equipment, supplies, visit frequency, and coverage may vary based on the patient’s diagnosis, condition, individualized plan of care, location, payer, and hospice eligibility. If you have questions about hospice care or whether your loved one qualifies for hospice, contact us any time at 1-855-BRISTOL. We are available 24 hours a day, 7 days a week, 365 days a year.