The signing itself takes about half an hour. Someone from the hospice sits at the kitchen table, a few forms get initialed, somebody finds a pen that works, and then the car pulls out of the driveway and the house is quiet again. The folder is still on the table. And somebody usually says a version of the same sentence: all right, so what happens now.
What follows is a description of the next two days. It is not a promise about your household, because admissions differ and people differ. But the shape is consistent enough that knowing it in advance makes the first night less frightening.
The clock starts on the date written on the form
The paperwork you signed is called an election statement, and on it is an effective date. That date does more work than anything else in the folder. It can be the day you sign or a later one, but it can never be backdated, and everything that follows is counted from it. In Medicare's arithmetic it is day zero.
Two physicians have to certify that the illness is terminal as the benefit defines it, meaning a prognosis of six months or less if it follows its usual course. One is our medical director; the other is ordinarily your own doctor. That is our work, not yours. Families sometimes think they should be chasing a signature somewhere. They should not.
A nurse comes, and it is not a meet and greet
Medicare gives us forty-eight hours from the effective date to complete the first nursing assessment, and the federal guidance is unusually blunt about what the visit is for. It says in plain words that the initial assessment is not a meet and greet. In practice we are there well inside the window, and when the paperwork is signed in the morning we are often back the same day.
Expect it to take an hour or two. The nurse will examine your person head to toe, ask about pain and breathing and sleep in more detail than feels polite, and then ask you to bring every medication in the house to the table. Every bottle, including the ones at the back of the cabinet, the things bought over the counter, and the supplements somebody recommended.
That part surprises families, because the list usually gets shorter rather than longer. Medications meant to prevent a problem years away may no longer be earning their place, and each is a pill your person has to swallow. Nothing is stopped without discussion or over your objection. But it helps to know that a shorter list is a common outcome, not a sign that anyone has given up.
What gets delivered, and where to put it
Equipment related to the illness is part of the benefit. A hospital bed, an oxygen concentrator, a wheelchair, a bedside commode, a shower chair: if it is in the plan of care, we provide it and no separate bill arrives. The same goes for the supplies, down to the gloves and the barrier cream.
Timing is the honest part. Oxygen usually arrives fastest, often the same day. A bed more often comes the next day or the one after, and delivery windows are windows. I would rather say so now than have you spend an afternoon by the door.
The bed is the hardest delivery emotionally. It looks like a hospital, and putting one in the house feels like conceding something. Think about where it goes before it arrives. Families who choose the living room near a window, rather than a back bedroom, rarely regret it. The person in it stays in the middle of the household instead of down a hallway.
The small box in the refrigerator
At or near the first visit, most patients receive what is usually called a comfort kit: a small box of medications kept in the home so nobody is hunting for an open pharmacy at two in the morning. Contents vary, but it commonly holds something for pain and breathlessness, something for anxiety, something for nausea, and something for the noisy secretions that gather late in an illness.
The kit is not there for you to use on your own judgment. Call first, every time. The nurse on the phone will tell you what to give and how much, and it gets written into the record. The right answer depends on the person and the day, and sometimes it is that a nurse should come out instead.
Families are often uneasy about the morphine in particular, and the worry is nearly always the same unspoken one. Ask it out loud at the admission visit rather than sit with it alone at midnight. The nurse has been asked before, and she would far rather answer while the room is calm than at three in the morning when someone is frightened and short of breath.
The number on the folder starts working immediately
Medicare requires that nursing, physician services and the drugs used for symptom relief be routinely available twenty-four hours a day, seven days a week. That is not a courtesy a hospice extends when it can; it is a condition of being a hospice at all.
At Rosewood our intake coordinator answers the line at any hour, which means that on a good many nights the person who picks up is me. If the question is clinical I reach the on-call nurse, and if a visit is needed a nurse comes out. There is no wrong hour and no question too small. What families most often regret is deciding at two in the morning that it would be unreasonable to wake anyone, and waiting until seven.
The rest of the team comes in behind the nurse
Within five calendar days of the effective date, the full team has to complete what Medicare calls a comprehensive assessment. The team is a nurse, a physician, a social worker, a chaplain and a hospice aide, and it is less a form than a series of visits that build the plan of care.
The social worker tends to be the person a family did not know they needed. She handles the practical wreckage that gathers around a long illness: Medi-Cal questions, benefits, paperwork, the relative who is not speaking to another relative, and, when the family is ready and not before, funeral arrangements made ahead so nobody is making those calls in the first hour of grief.
The chaplain is available whatever your faith is, including none. The aide comes for bathing and personal care, which for many families is the single most concrete relief of the first week, because it is the task that costs both people the most dignity. By the end of the week you will have a schedule, revisited at least every couple of weeks and sooner when things change.
What the first two days will not do
Hospice is not around-the-clock caregiving in the home. This is the largest and most painful misunderstanding about the benefit, and it is better to be disappointed by this paragraph now than at the end of the first week. Routine hospice care is a schedule of visits with the telephone available in between. The daily work of sitting with someone, turning them, feeding them and helping them to the bathroom still falls to the family, or to caregivers the family arranges and pays for.
There is a level of care in which a nurse stays for extended hours, but it exists for a crisis and is temporary by design. Medicare also does not pay room and board, whether the room is in your own house, an assisted living or a nursing home.
And the house will not feel calm on the second day. Admission week is often harder than the week before it, because a great deal happens at once and because signing the paperwork makes real a thing that had been held at arm's length. That eases. Most families describe the second or third week as the first time they were able to breathe.
You can change your mind
Electing hospice is not a door that locks behind you. You may revoke at any time by signing a short statement, and your regular Medicare coverage resumes from that date. It cannot be backdated, and you can elect hospice again later if you are still eligible. People do this, most often to pursue a treatment that has become available, and it is nobody's place to argue you out of it. Medicare's own guidance instructs hospices not to pressure a family about revocation in either direction.
If you are reading this the night before an admission, or in the hour after the car pulled out of the driveway, the number on that folder works right now. Call us at (818) 273-4884 and ask anything, including the questions you have decided are too small. We answer in English, Armenian, Spanish and Russian, and we care for families throughout Southern California.