The hospice benefit pays for a defined set of things. Everything outside that set is either private money, another insurance line, or a cost the family has not yet noticed. Most families do not see the bill grow all at once. It grows in small pieces: an extra hour on Tuesday, a second person for the bath, a box of supplies that runs out faster than planned, a trip to the pharmacy that becomes a half day. Before you compare one private caregiver's rate with another, sort the costs by where they come from.
Local option: New Plan Care gives families in the St. Louis area in-home help so a parent can stay home: companionship, help with bathing and dressing, meals, and overnight care. Call (314) 405-0887.
What the hospice benefit usually covers
Under the Medicare hospice rules, the hospice agency is paid to care for the terminal illness as a whole. In general, the plan of care can include visits from the hospice nurse, aide, social worker, and chaplain; medicines for symptom control related to the terminal diagnosis; medical equipment and supplies that the team orders for that care; bereavement support; and short inpatient or respite stays under set limits. The exact list is set by the plan of care and by your agency, so ask for it in writing rather than relying on a general summary.
In general, the benefit does not pay for round-the-clock private caregivers at home, room and board, or most help with household tasks that the team does not order. Those are the lines where the family bill grows. The Sources page lists the federal rules this guide relies on, and it is worth reading the hospice coverage section yourself once, because your agency's paperwork should match it.
The five places the bill grows
Hours of private help. The number that matters is the total hours per week, not the hourly rate. Ask whether the agency bills by the hour, by the shift, or by a minimum block. Ask whether an overnight is one block or several, and whether travel time between clients is billed. A lower rate with a four-hour minimum can cost more than a higher rate with no minimum when your gaps are short.
Tasks that need two people. A turn, a lift, or a bath in a room with no space for one helper may need a second person. If the second person is billed as a separate worker, the cost doubles for that task. Ask which tasks the care plan actually requires two people for, and whether the agency will send one person with a written note of the lift method instead.
Supplies the plan of care does not cover. Incontinence products, underpads, gloves, wipes, skin creams, and over-the-counter items are often where families spend more than they expect. Ask the hospice agency for the written list of supplies it provides under the plan of care, how often it resupplies, and who orders them. Then write down what you will buy yourself, and how often you will buy it. Keep that list on the refrigerator or the supply shelf so the next run does not start from memory.
Equipment that needs power, service, or a backup. A bed, a mattress, an oxygen concentrator, or a lift can carry costs that do not show on the delivery ticket: an electrician, a backup unit, a service call, a replacement part, or a rental extension. Ask who pays for each of those, who calls for service, and how long a repair usually takes. A piece of equipment that works only when the power is on has a cost that sits in the backup plan.
Trips and driving time. Each trip outside the house, whether to an appointment, a pharmacy, or a store, may add billed hours if a private caregiver drives. Ask whether driving time is billed, whether mileage or fuel is added, and whether a wait at the clinic is billed at the same rate. Some trips can be combined. Some can be handled by a family member or by the hospice team if the trip is medically necessary.
Rates for nights, weekends, and holidays. Some agencies use different rates for these times. Ask for every rate in writing, including overnight, weekend, holiday, and extra-hour rates, and ask what happens when a shift runs past the scheduled end. A rate sheet that shows only the base hourly figure leaves the other figures out of your comparison.
What to ask before you sign
Ask the agency or the private caregiver service for the total weekly cost of the schedule you actually need, not the hourly rate. Ask for the minimum shift length and whether it applies to every visit. Ask which tasks are billed as two people and what the second-person rate is. Ask what supplies are included, what is excluded, and who restocks them. Ask who pays for equipment service and replacement parts. Ask whether driving time, mileage, and waiting time are billed. Ask whether any charge changes during the first month, after a change in the care plan, or when the agency changes the caregiver. Ask how notice works if you need to end or reduce the schedule.
A worksheet you can finish in one evening
Write down the week as it actually runs. For each hour, note the task, the number of people needed, and whether the hospice team covers it. Make a second column for supplies and a third for trips. Then total the private hours and the out-of-pocket items for one full week. Multiply to get a month only after you have checked the rates. This worksheet shows you where the bill comes from, and it shows you which parts you can change: the hours, the second person, the supply list, the trips, or the timing of the shifts.
The number at the bottom will change when the care changes, so review the worksheet whenever the plan of care is revised or the schedule shifts. The About This Site page explains how this guide was written and what it does not cover. Rates, supply lists, and coverage rules change, so confirm each figure with the agency in writing before you rely on it.