When Someone Cannot Safely Return Home After Cancer Care

Someone on the ward says the patient is medically ready to go home. You know the truth: nobody is there overnight, the bathroom is up a flight of stairs, and last time they fell within three days.

You are not being difficult. Under federal rules, what you know is part of the discharge planning process, and there is a specific way to make it count.

Hospitals that take Medicare must follow a discharge planning regulation, 42 CFR 482.43. Four parts of it matter to you.

The hospital must identify patients likely to be harmed by a bad discharge. The rule targets "those patients who are likely to suffer adverse health consequences upon discharge in the absence of adequate discharge planning."

You are a participant, not an observer. Hospitals must include "the patient and his or her caregivers/support person(s) as active partners in the discharge planning."

The plan must fit the patient's goals. Discharge planning must be "consistent with the patient's goals for care and his or her treatment preferences."

You choose the provider, not the hospital. The discharge plan must include a list of home health agencies, skilled nursing facilities, inpatient rehabilitation facilities, or long-term care hospitals available to the patient and taking part in Medicare. The hospital must tell you about your freedom to choose among participating Medicare providers, and must not specify or otherwise limit the qualified providers.

The hospital also has to share quality and resource-use data on those providers with you. Ask for it. Most families never do, and it is one of the few objective things you get in this process.

The single most common mistake is waiting until discharge day and then objecting. By then the bed is promised to somebody else and everyone is under pressure.

Raise it on day one or two, and state it flatly. Not "I am worried about coping." Instead:

• "I work 8 to 6, Monday to Friday. Nobody is in the house during those hours."
• "The only bathroom is on the first floor and there are 14 steps with no rail."
• "I cannot lift him. He is 200 pounds and I am 62 with a bad back."
• "There is no car. The nearest bus stop is a mile away."
• "He got up at night and wandered twice last month."

These are planning facts, the same as a blood count. A discharge plan built on a caregiver who does not exist is not a plan.

Ask for the assessment that produces evidence: an occupational therapy home safety evaluation, and a physical therapy assessment of stairs and transfers. Ask for both in writing in the chart.

"Not safe at home" is too vague to act on. Teams respond to specifics. Work out which of these is the actual problem, because each has a different fix.

• Supervision. Cannot be left alone at all, or not overnight.
• Transfers and mobility. Cannot get out of bed, off the toilet, or up the stairs alone.
• Skilled tasks. Drains, wound care, injections, IV lines, ostomy care, tube feeds, oxygen.
• Cognition. Confusion, memory loss, or poor judgment about safety.
• The building. Stairs, no downstairs bathroom, no working heat, hoarding, no lift.
• Medicines. Complex schedules nobody at home can manage.
• Money and transport. No way to get to treatment, or no money for the medicines.

A supervision gap and a wound-care gap lead to completely different services.

Roughly in order of how quickly they can be set up.

More time in the hospital or a step-down bed. Sometimes the honest answer is that the discharge is too early.

Post-acute care. Skilled nursing facility, inpatient rehabilitation, home health, or a long-term care hospital. Each is a distinct Medicare benefit with its own eligibility test. The hospital must give you a list of the ones available to you.

Home health plus paid help. Medicare home health does not provide anyone to sit in the house. Personal care hours have to come from somewhere else.

Medicaid home and community-based services. States run HCBS waivers under section 1915(c). Nearly all states and the District of Columbia offer them, and there are around 257 programs nationally. They can cover case management, homemaker services, home health aide services, personal care, adult day health, habilitation, and respite care. To qualify, a person must need the level of care the state would require for an institution. Two cautions: states may cap the number of people served, so waiting lists exist, and rules vary state by state. Ask the hospital social worker to start the referral now rather than at discharge.

PACE. The Program of All-inclusive Care for the Elderly covers a lot in one package. To join you must be at least 55, live in a PACE organization's service area, need a nursing home level of care as certified by your state, and be able to live safely in the community with help from PACE. It covers adult day primary care, home care, hospital care, specialty care, prescription drugs, personal care, physical and occupational therapy, nursing home care, mental health counseling, transportation, and more. With Medicaid there is no monthly premium. Without Medicaid you pay a monthly premium for long-term care and Part D drugs, but no deductible, copayment, or coinsurance for approved services.

Assisted living or a nursing home. A bigger step, and the one families most resist naming. Say it out loud early if it is on the table, because the paperwork and the money take time.

You have a formal appeal, and it is fast.

In the hospital you should receive a notice called An Important Message from Medicare about Your Rights, within 2 days of admission and again before discharge. If you think discharge is too soon, ask the Beneficiary and Family Centered Care Quality Improvement Organization named on that notice for a review. Do it no later than your planned discharge day. The reviewer decides within one day of getting the information it needs. If you meet the deadline, the patient can stay while the review runs and is not charged for that time.

The same right exists in other settings. Before covered services end in a skilled nursing facility, home health agency, or comprehensive outpatient rehabilitation facility, you must get a Notice of Medicare Non-Coverage at least 2 days ahead. Call the reviewer by noon the day before the end date on the notice.

Two practical points. Put your objection in writing and ask for it to go in the chart. And ask directly: "Is anyone documenting that the family says this discharge is unsafe?"

If nothing else works, this is the sentence that changes the meeting:

"I am telling you that there will be nobody in the house. If he is discharged home tomorrow, that is a discharge to an empty house. Please record that I said so, and tell me what else is available."

It is not a threat. It is a fact placed on the record, and it usually restarts the planning.

• What exactly must be true for this discharge to be safe?
• Has an occupational therapist assessed the home, and can we get that in writing?
• What is the list of Medicare providers available to us, and where is the quality data?
• Which of these places has a bed and takes this insurance?
• Who is arranging equipment, and when will it arrive?
• Can a Medicaid home and community-based services referral start today, and is there a waiting list?
• Is PACE available in this area?
• If we disagree with the discharge date, who do we call and by when?
• What happens if we get home and it does not work? Who do we call, and at what number?

• 42 CFR 482.43, Condition of participation: Discharge planning — Electronic Code of Federal Regulations
• Your Discharge Planning Checklist — Centers for Medicare & Medicaid Services
• Fast appeals — Medicare.gov
• Home and Community-Based Services 1915(c) — Medicaid.gov
• PACE: Program of All-inclusive Care for the Elderly — Medicare.gov
• Home health services — Medicare.gov