Preparing for hospice is about making the final phase of life as comfortable and dignified as possible. A family checklist helps you organize the practical, medical, and emotional steps before care begins. This guide covers the essential documents, conversations, and logistics you need to handle so you can focus on being present with your loved one.
What Is Hospice Care and When Should It Start?
Hospice is a specialized type of medical care focused on comfort rather than cure. It is for people with a terminal illness who have a prognosis of six months or less, as certified by a physician. Care is provided wherever the patient calls home — a private residence, an assisted living facility, or a nursing home.
Many families wait too long to start hospice. Research consistently shows that earlier enrollment improves quality of life and may extend survival in some cases. If your loved one has had multiple hospitalizations in the past year, is losing weight without trying, or spends most of the day in bed, ask their doctor about hospice eligibility. You do not need to wait for a crisis.
The hospice team typically includes a physician, nurses, home health aides, social workers, chaplains, and trained volunteers. Medicare, Medicaid, and most private insurance plans cover hospice care. That coverage includes medications related to the terminal diagnosis, medical equipment, and supplies.
How To Prepare For Hospice A Family Checklist: Start With Paperwork
Getting legal and medical documents in order is the first practical step. These documents make sure your loved one’s wishes are respected when they cannot speak for themselves.
- Advance directive: A legal document stating what medical treatments the person wants or does not want. This includes resuscitation preferences and ventilator use.
- Durable power of attorney for healthcare: Names a trusted person to make medical decisions if the patient becomes unable to communicate.
- Do Not Resuscitate (DNR) order: A physician-signed order telling emergency responders not to perform CPR. Keep it visible — on the refrigerator or near the bed.
- HIPAA release form: Allows family members to discuss medical details with the care team. Without it, doctors and nurses may refuse to share information.
If these documents do not exist yet, hospice social workers can help you complete them. Do not delay this step. It is far harder to create these documents during a medical emergency.
One non-obvious point: a standard hospital DNR does not automatically transfer to home settings. Ask the hospice team to issue a state-specific DNR form that works outside a hospital. Emergency medical services must honor a valid DNR, but they need to see the correct paperwork.
What Medical Information Does the Hospice Team Need?
When you call a hospice agency, they will ask for specific information to determine eligibility and plan care. Gather these items before the first phone call.
- Physician’s name and contact information
- Current diagnosis and full medical history
- List of all medications with dosages
- Recent hospital discharge summaries
- Insurance cards and policy numbers
- Primary caregiver contact information
The hospice medical director will review the records and speak with your loved one’s physician. Once eligibility is confirmed, a nurse typically visits within 24 to 48 hours to start services. If the situation is urgent, say so clearly — hospice agencies can often respond faster in acute situations.
Ask about after-hours coverage before you commit to an agency. Families frequently need help at 2 a.m. when symptoms spike or a medication runs out. A hospice program without reliable 24/7 nurse availability is not the right choice.
How To Choose a Hospice Agency
Not all hospice agencies provide the same level of care. You have the right to choose your provider. Medicare publishes quality ratings for hospice agencies, and your state health department can share complaint histories.
Interview at least two agencies before making a decision. Ask specific questions during your conversations.
- How quickly can a nurse visit after admission?
- What is your average response time for urgent calls?
- Who provides after-hours coverage — nurses or answering services?
- How often does the nurse visit per week?
- Is a chaplain and social worker available?
- What happens if symptoms cannot be managed at home?
- Do you have an inpatient unit or hospital contract for respite care?
Pay attention to how the agency treats you during the first phone call. If they sound rushed or dismissive, that is a warning sign. The admission process should feel supportive, not bureaucratic.
One clarification that surprises many families: hospice does not provide 24-hour custodial care. A hospice aide typically visits two to three times per week for personal care like bathing and dressing. The family or hired caregivers provide most day-to-day supervision. If your loved one needs constant monitoring, you need to arrange additional help separately.
What Medications and Equipment Will You Need at Home?
Hospice delivers medications and equipment to the home, but you should prepare a space for them. The hospice nurse will create a comfort kit — a set of emergency medications for common symptoms like pain, nausea, agitation, and breathing distress. These are pre-filled and kept at the bedside.
Common equipment includes a hospital bed, oxygen concentrator, wheelchair, walker, and bedside commode. The hospice agency arranges delivery and setup. Ask about delivery timelines so equipment arrives before you need it rather than after.
Prepare a dedicated care area before equipment arrives. The patient’s room should have:
- A clear path for a hospital bed and wheelchair
- Easy access to a bathroom or commode
- Good lighting for nighttime checks
- A phone or call button within reach
- Storage space for medications and supplies
- A comfortable chair for family members who sit vigil
Move the patient’s bed to the ground floor if stairs are a problem. Falls are a major risk in this phase of life. A single fall can lead to a hospital admission that hospice cannot easily reverse.
What Conversations Should the Family Have Before Hospice Starts?
Families avoid difficult conversations because they fear causing distress. In reality, most dying patients want to talk about their wishes. Unspoken fears and unfinished business cause more suffering than honest conversation.
Discuss these topics openly before hospice begins:
- Funeral and burial preferences
- Who should be present at the time of death
- Religious or spiritual rituals that matter
- Legacy items or messages the patient wants to leave
- What the patient fears most about dying
- How family members will share caregiving responsibilities
If these conversations feel too heavy, ask the hospice social worker or chaplain to facilitate. Their training helps families say the unsayable. Many patients feel relief once their wishes are on the table.
One honest note: families often disagree about treatment decisions near the end of life. One sibling may want aggressive interventions while another wants comfort only. These conflicts are common and painful. The earlier the patient’s wishes are documented, the less room there is for family disagreement later.
How To Prepare the Home for the Final Days
As death approaches — usually in the final days — the physical setup of the home matters more. The patient typically becomes less responsive, eats and drinks very little, and may have irregular breathing. This is normal and not painful.
Prepare for this phase by:
- Setting up a quiet, calm environment with soft lighting
- Keeping the room at a comfortable temperature
- Having supplies like adult diapers, waterproof pads, and gloves
- Creating a schedule so family members rotate shifts
- Keeping the hospice nurse’s number visible near the phone
Understand what is normal in the active dying process. Breathing may pause for 10 to 30 seconds, then resume. Secretions in the throat may cause a rattling sound. The skin on the hands and feet may feel cool. These signs do not mean the person is suffering.
If the patient appears in pain — grimacing, moaning, or restlessness — call the hospice nurse immediately. The comfort kit medications are designed for exactly this situation. Do not wait to administer them if the nurse has already instructed you on their use.
What Happens After Death: Immediate Steps for the Family
When death occurs, the family’s first call should be to the hospice agency, not 911. Hospice nurses are trained to pronounce death and guide the next steps. Calling 911 often results in unwanted resuscitation attempts and a trip to the emergency room.
The hospice nurse will:
- Confirm death and note the time
- Remove medical equipment like oxygen and the hospital bed
- Contact the funeral home you have chosen
- Provide guidance on body care before the funeral home arrives
- Offer grief support resources for the family
If you have not pre-arranged a funeral home, the hospice team can recommend local providers. The funeral home handles transportation of the body. There is no rush — you can spend time with your loved one after death while you wait.
Do not call the police or an ambulance unless the death was unexpected or traumatic. Hospice deaths at home are not medical emergencies. The hospice nurse and funeral home manage the entire process.
How To Support the Primary Caregiver
Caring for a dying loved one is physically and emotionally exhausting. The primary caregiver often neglects their own needs completely. This is unsustainable and can lead to caregiver burnout, illness, and resentment.
Families should create a rotation schedule before hospice begins. Each adult takes specific shifts — overnight coverage, medication management, meal preparation, and errands. No single person should carry the entire load.
Hospice offers respite care: up to five days of inpatient care to give caregivers a break. Many families do not use this benefit because they feel guilty. Respite care is a standard part of the Medicare hospice benefit. Using it does not mean you have failed your loved one. It means you understand your own limits.
Grief support continues after death. Most hospice agencies offer bereavement counseling for at least 13 months following a loss. Take advantage of these services. The grief of a caregiver is real and deserves professional support, not just time.
Frequently Asked Questions
How soon can hospice care begin after I call?
Most hospice agencies can start services within 24 to 48 hours of the initial call. If symptoms are urgent, tell the intake coordinator and they can often send a nurse sooner.
Does Medicare pay for hospice care at home?
Yes, Medicare covers hospice care for eligible patients, including medications, equipment, and nursing visits. There is no copay for hospice services under Medicare Part A.
Can a patient still see their regular doctor while on hospice?
Yes, the patient’s primary physician can remain involved and coordinate with the hospice medical director. The hospice team manages symptom control while the regular doctor continues other aspects of care.
What if the patient lives longer than six months?
Hospice care can continue beyond six months as long as the physician recertifies that the patient remains terminally ill. Many patients live longer than the original prognosis, and care continues without interruption.
