When someone you love is in hospital

Some hospitals hold the nurses’ handover at the bedside and invite the patient and family to take part. Families can add things they have noticed that matter for care and safety.

Ideas

• Ask what time shifts change, and whether you can be there for handover
• Have one or two short points ready: “She hardly ate today.” “He seemed more confused this afternoon.”
• Learn the name of the nurse on each shift

Ask the nurse when the doctors usually come by, and which doctor is in charge of care. If you can’t be there, ask how you can get an update by phone.

Hospitals usually have a Patient Relations, Patient Advocate or Customer Service department for concerns. A hospital social worker can help connect you with resources.

The discharge planner, often a social worker, organizes what happens when the person leaves: going home, rehab or a care facility.

Ideas to pack

• A care records sheet with contacts and key facts
• A phone charger for them and for you
• Familiar things, like family photos or a favorite blanket
• Glasses, hearing aids and dentures, with labeled cases
• Snacks, water and a sweater for you

Glasses, hearing aids and dentures are often put away during a stay. Making sure the person has them can help them stay oriented.

The CARE Act is a state law passed in most U.S. states. Under it, hospitals must record the family caregiver’s name in the patient’s record, tell the caregiver when the patient will be discharged, and teach the caregiver the medical tasks they will need to do at home.

Keep careful records of your conversations, especially about payment and insurance. Ask for all instructions in writing.

What to note

• Changes you notice in the person
• Date, time and who you spoke to
• Questions still waiting for an answer
• What they said and what happens next

Steps that often help

1. Ask the nurse in charge first: “Can you help me understand…?”
2. Ask to speak with the doctor in charge of care
3. Ask for a family meeting with the care team
4. Contact Patient Relations or the Patient Advocate office
5. Put your concern in writing and keep a copy

Tell the team what the person likes to be called, what upsets them, how they usually think and talk, and what comforts them. This helps staff notice when something has changed.

Signs to tell the nurse about

• Not knowing where they are
• Seeing or hearing things that aren’t there
• Trouble paying attention
• Trouble thinking or speaking clearly

Family members are often better than staff at noticing when someone is not behaving like themselves.

Ideas

• Bring familiar things from home, like photos, a blanket or music
• Help them walk a few times a day, if the care team says it is safe
• Make sure they have their glasses, hearing aids and dentures
• Talk about family or the news, or play cards or a crossword together

If delirium develops, staying with the person as much as possible, including at night if you can, can comfort and reassure them.

How to talk with them

• Don’t ask lots of questions
• Tell them who you are and where they are, and keep reassuring them
• Use simple words and short sentences

A person is an inpatient only once a doctor formally admits them with an order. Admission is generally right when they are expected to need hospital care over 2 or more midnights.

Without that order, care in the emergency department or under observation counts as outpatient care.

Medicare generally covers skilled nursing facility care only after a medically necessary inpatient stay of at least 3 days in a row. The day of discharge does not count. Time under observation or in the emergency room does not count either, even overnight.

Some Medicare Advantage Plans and some care programs may waive this rule. Ask the plan.

Questions to ask

• “Is she an inpatient or under observation today?”
• “Please tell us straight away if his status changes.”
• “Will Medicare cover a skilled nursing facility stay after this?”

If someone is under observation for more than 24 hours, the hospital must give a written notice, called the Medicare Outpatient Observation Notice (MOON), and explain it out loud.

If a hospital changed someone’s status from inpatient to outpatient observation, they may be able to appeal that change.

Ask the team

• Do we need to hire extra help?
• Have I been trained for the tasks I will do at home?
• Is the home safe and ready, with space for any equipment?
• What equipment is needed, and who pays for it?
• Who do we call, day or night, if something goes wrong?

Under the CARE Act in most states, hospitals must teach family caregivers the medical tasks they will need to do at home.

Family caregivers can ask: “Have I been trained in moving them safely and preventing falls? Can the training start here, in the hospital?”

Just over 20% of U.S. caregivers have had formal training in medical and nursing tasks. Asking for it is normal and wise.

Within 2 days of admission, and before discharge, a person on Medicare should get a notice called “An Important Message from Medicare about Your Rights”. If you don’t get it, ask for it.

If you think discharge is too soon, you can ask for a fast appeal. An independent reviewer, called a BFCC-QIO, decides. Ask no later than the day of the planned discharge, following the instructions on the notice.

If you ask in time, the person can stay in the hospital while waiting for the decision.

Medicare Part A can cover short-term care in a skilled nursing facility, including a semi-private room, meals, skilled nursing, and physical, occupational and speech therapy. It covers up to 100 days in each benefit period, and costs rise after the first 20 days.

Medicare home health covers part-time or occasional skilled nursing and therapy for people who are homebound and qualify. It does not cover care around the clock.

Sometimes the person needs more care than can be given at home. This is a big decision for any family, and it often brings grief and guilt.

If the illness is serious, the team may talk about palliative care or hospice. Medicare hospice care is planned with the person and family, and includes short-term inpatient respite care for caregivers.

Ideas

• Agree who covers which days, and write it down
• Give relatives far away a job too, like phone updates or paperwork
• Let friends sit with the person for an hour while you take a break
• Share one group message with updates, so you don’t repeat yourself

Setting up a shared online calendar lets helpers sign up for regular slots.

Ideas

• Bring water, snacks, a phone charger and a sweater
• Go home to sleep when you can. Nurses are there overnight
• Step outside for fresh air at least once a visit
• Walk around the hospital, even for five minutes

A hospital social worker can help connect you with resources.

People to ask for

• A chaplain or faith leader
• A hospital social worker
• Your own doctor, if you are not sleeping or eating

Ideas

• Bring a meal to the house, or to the hospital
• Feed pets, collect mail or water plants
• Help with school runs or childcare
• Offer rides to and from the hospital

Helping caregivers with errands, chores and other tasks, and checking in at regular times, are good ways to support them.

Ideas

• Ask before visiting, and keep visits short
• Bring something familiar, like photos or music, if the family agrees
• Send a card or a short video message
• Sit with them so the main caregiver can rest

Support often fades once someone leaves hospital, just as care at home gets heavier. Keep offering help in the weeks after they come home.