The first hospice visit, usually called the admission visit, is a long conversation at your mother’s bedside or kitchen table. A hospice nurse comes to wherever she lives, explains the benefit, has her (or you, as her representative) sign a consent and election form, does a head-to-toe assessment, goes over every medication, and starts building the plan of care. Before the nurse leaves, you will know who to call, when to call, and what is arriving in the next day or two, including equipment like a hospital bed. Plan on one and a half to two hours.
Here is what to expect, in the order it usually happens.
Before the visit
Once a doctor’s order and your mother’s agreement are in place, the hospice schedules the admission, often within a day. A few things to have ready if you can:
- All of her medications, including over-the-counter pills, vitamins and anything in a drawer she “sometimes” takes
- Her Medicare card and any other insurance cards
- Any advance directive, living will, patient advocate designation or do-not-resuscitate order that already exists
- A list of her doctors
- Your own questions, written down
Part one: the conversation
The nurse starts by asking what has been going on, what your mother understands about her illness, and what matters most to her right now. What she says here shapes everything that follows.
You will hear an explanation of what hospice is and is not. Hospice focuses on comfort and quality of life rather than treatment meant to cure the terminal illness. It does not mean stopping all medicine or all care.
Consent and election forms
Medicare requires a signed election statement to start the hospice benefit. It confirms that your mother (or her representative) understands hospice is comfort-focused, chooses hospice for her terminal illness, and names the hospice that will provide it. The nurse will also review:
- Consent for treatment and privacy notices
- Patient rights and responsibilities
- A list of what hospice covers and what it does not
- Who her attending physician will be, if she wants her own doctor involved
You can ask to read every page. And if she changes her mind, she can revoke hospice at any time and return to her regular Medicare coverage.
Part two: the assessment
The nurse examines your mother the way a good nurse does: vital signs, breathing, skin, pain, swallowing, appetite, sleep, bowel and bladder, and mobility. The nurse also looks at the house. Where are the stairs? Is the bathroom reachable? Where would a hospital bed go if one is needed?
The assessment also covers anxiety, fear, spiritual concerns, how the family is holding up, and who is doing the caregiving.
Part three: medications and the comfort kit
Every bottle comes out on the table. The nurse reconciles the full list with the hospice physician and your mother’s doctor. Some medicines continue. Some may be simplified or stopped if they no longer help her feel better. This is a conversation, not a decree.
Medications related to the terminal illness are covered by hospice and delivered to the home. Under Medicare, you may owe up to $5 per prescription for outpatient pain and symptom medications.
The comfort kit
Most hospices place a small comfort kit (sometimes called an emergency kit) in the home during the first days. It holds a few medications for problems that tend to show up suddenly: pain, shortness of breath, anxiety, nausea and restlessness. It stays sealed, often in the refrigerator, and you do not use it on your own. If something happens at night, you call the nurse line, and the nurse tells you exactly what to give. The kit means help is minutes away instead of hours.
Part four: the plan of care
Everything above becomes a written plan of care, developed by the hospice interdisciplinary team with your mother and your family. It lists her goals, her symptoms and how they will be managed, which team members will visit and how often, what equipment and supplies she needs, and what to do in an emergency.
The team usually includes:
- A nurse who is her primary contact and visits on a regular schedule
- A hospice aide for bathing and personal care
- A social worker for paperwork, planning and family support
- A chaplain, if she wants one
- Volunteers, if she wants them
- The hospice physician, who oversees her care and works with her own doctor if she chooses
You will be asked how often you want visits and who should be called with updates. Say what you really want.
Part five: equipment
Based on the assessment, the nurse orders equipment before leaving: commonly a hospital bed with a pressure-relieving mattress, a bedside commode, a shower chair, a walker or wheelchair, oxygen, and incontinence and wound supplies. Delivery often happens the same day or the next, and the delivery team shows you how to use everything.
A hospital bed is the item families have the most feelings about. It is not a sign that the end is near. It means your mother can sit up to eat, breathe more easily and be turned without hurting anyone’s back, including yours.
Who to call, and when
Before the nurse leaves, you will have a phone number and clear instructions. The rules of thumb are simple:
- Call hospice first, day or night, for any change: new or worse pain, trouble breathing, a fall, confusion, restlessness, not eating or drinking, a fever, or any time you are worried and unsure.
- Do not call 911 automatically. Part of the plan of care is deciding in advance what your mother wants to happen in an emergency. If she has chosen comfort care at home, a call to hospice usually brings a nurse and avoids a hospital trip she did not want. If you ever feel someone is in danger, of course call 911, then call hospice.
- Call for the small things too. Running low on supplies, a question about a pill, a bad day.
What the first week looks like
Days one and two. The admission visit, equipment delivery, the first medication delivery and the comfort kit. Expect several phone calls as the team introduces itself.
Days two through five. The social worker’s first visit. The aide’s first visit, where you will settle on days and times that fit your routine. A chaplain visit if you have asked for one. The nurse may return sooner than the regular schedule to see how the medication changes are working.
By the end of the week. A rhythm. You know which days the aide comes, when the nurse visits, and what the number on the fridge is for. Most families find the first week busier than they expected and calmer than they feared.
If your mother lives in a facility, the same steps happen in her room, with facility staff part of the plan.
How Lily handles this
Lily Hospice admits patients across Oakland, Macomb and Wayne counties wherever they live, and our 24/7 line is answered by a real person from the first day. Your admission nurse will leave you with our number and clear instructions for who to call and when. Medications and equipment related to the terminal illness are arranged by our team and delivered to the home. During the first week, you can also ask about our Journey Program, respite care, and our Veteran Rapid Response program.
Frequently asked questions
How long does the admission visit take? Usually one and a half to two hours, longer if there are many medications or questions. Questions are welcome.
Does my mother have to be there and awake? She should be present. If she cannot participate, her legal representative (for example, a patient advocate under a signed designation) can sign the election form on her behalf.
Will she lose her own doctor? No. She can name her own physician as the attending physician, and the hospice doctor works with them.
What if we sign and then change our minds? She can revoke hospice at any time and return to regular Medicare coverage. She can also elect hospice again later.
Does equipment cost us anything? Equipment and supplies related to the terminal illness are covered under the hospice benefit and delivered to the home.
Talk to us
If a doctor has mentioned hospice, or you simply want to know what the first visit would look like for your family, call Lily Hospice at
(248) 955-5100. A real person answers 24 hours a day, and we can often schedule an admission visit within a day.
Written and reviewed by the Lily Hospice clinical team.
Sources
- Medicare.gov, “Hospice care”: https://www.medicare.gov/coverage/hospice-care
- Medicare.gov, “Medicare Hospice Benefits” (official booklet, PDF): https://www.medicare.gov/publications/02154-medicare-hospice-benefits.pdf
- CMS, Medicare Benefit Policy Manual, Chapter 9, “Coverage of Hospice Services”: https://www.cms.gov/regulations-and-guidance/guidance/manuals/downloads/bp102c09.pdf
- National Alliance for Care at Home (formerly NHPCO), Hospice Care Overview: https://www.nhpco.org/hospice-care-overview/
