Caring for someone who is dying

Most days of Medicare hospice care are “routine home care.” In 2023, that was 98.8% of all hospice days. The team visits, but family and friends give most of the hour-to-hour care.

In 2023, hospice staff made an average of about 3.9 in-person visits a week to people getting routine home care, each about an hour long. That leaves many hours when family is in charge.

Medicare hospice has four levels of care. Besides routine home care, there is continuous home care during a crisis at home, general inpatient care when symptoms need to be managed in a facility, and inpatient respite care to give the main caregiver a short break.

In 2023, 18% of hospice patients had at least one day of general inpatient care, and 2% had continuous home care.

Hospice can be given in nursing facilities, assisted-living homes and inpatient hospice facilities. The hospice team works alongside the staff there.

Medicare hospice does not pay for room and board at home or in a facility, except for short respite stays. Ask the facility and the hospice what you will still pay for.

The hospice nurse is often your main contact. They check on comfort, explain changes, and teach you how to help. Your care team can help manage pain and comfort, so tell them what you notice.

Things worth telling the nurse

• Changes in breathing, eating or sleep
• Restlessness, confusion or distress
• What you are finding hard to do

Hospice aides are part of what the hospice benefit covers. They can help with personal care and show you safer ways to move and wash your loved one.

Hospice social workers are part of the team. They can also lead or support a family meeting when relatives disagree.

They may help with

• Coping with strong feelings
• Family meetings
• Finding extra help at home
• Understanding forms and benefits

Care that supports a person’s spiritual health may improve quality of life. Chaplains, social workers and hospice staff can offer support near the end of life.

Many hospices also have trained volunteers who can sit with your loved one, read aloud, or simply keep you company.

The Medicare hospice benefit includes bereavement (grief) services for the family.

Interest in food and drink usually fades near the end of life. Food and fluids should not be forced, because this can cause discomfort or choking.

What can help

• Lip balm on dry lips
• Ice chips or small sips, if the person can swallow
• Swabbing the mouth and lips to keep them moist

The American Cancer Society suggests changing a person’s position every 1 to 2 hours, and using pressure-relieving cushions.

Tips

• Ask the hospice about a hospital bed or special mattress
• Use waterproof pads to keep the bed clean and dry

Hands and feet may feel cold. Keep the person warm with blankets, but not electric blankets or heating pads. If they feel hot, a cool washcloth can help.

Raising the head of the bed, sitting the person up, or turning them on their side can help. A cool fan on the face can also bring comfort.

Your care team can help manage pain and comfort. Ask them how to handle confusion, restlessness or distress, too.

Restlessness, confusion or calling out can happen in the final days. Check whether they might be in pain or uncomfortable, and contact the care team if needed.

Keep lighting soft. Speak calmly, offer gentle touch, and remind them where they are and who is with them.

Other ideas

• Familiar photos or a favourite blanket
• Music they love, played softly
• A favourite scent, if it is welcome

Some people want to talk about dying. Others want to talk about the garden, the game or the grandkids. Both are okay. Follow their lead.

Gentle questions

• “Is there anything worrying you?”
• “Who would you like to see?”
• “What would make today a good day?”

There may be certain customs or rituals that are important to the person and family at this time. Tell the care team which ones matter, including any for after the death.

You might ask about

• Foods, clothing or modesty needs
• Prayers, readings or songs
• Visits from a faith leader or community
• Who should be present, and when

Keep talking to and touching your loved one, even if they don’t respond. Most people can still hear after they can no longer speak.

You might notice

• Feeling numb, snappy or tearful most of the time
• Hurting your back or getting sick more often
• Not eating or sleeping for days
• Thinking “I can’t do this anymore”

To be a good caregiver, you need to take care of yourself too. Regular breaks matter.

It is okay to say, “I can’t safely lift them,” or “I can’t do nights alone.” Tell the hospice nurse and social worker. They can help find other options.

Things to ask the team

• Can an aide come more often?
• Is there equipment that would make this safer?
• Do we qualify for a higher level of care right now?
• Can a volunteer sit with them?

Some caregivers feel guilty for wishing it was over, or for feeling relieved when they get a break. These feelings come from exhaustion and love, not from a lack of love.

Care will rarely be split evenly. Try arrangements for a while, then adjust at the next meeting. Thank each other for what each person can give.

Include faraway relatives by phone or video, and give them a clear job.

Jobs that work from afar

• Calling insurers or handling bills
• Coming to cover a weekend so the main caregiver can rest
• Paying for some extra help
• Sending updates to the wider family

If the family is stuck or divided, a neutral helper can guide the conversation. This could be a hospice social worker, a faith leader, a care manager or a family therapist.

Ground rules that help

• Let everyone be heard before solving problems
• Look for common ground
• Use “I” statements, like “I need a break on Sundays”

Medicare hospice includes inpatient respite care, arranged by the hospice team, to give caregivers a rest. Under federal rules, each respite stay is no more than 5 days in a row.

You may pay 5% of the Medicare-approved amount for respite stays.

In 2023, only 5% of Medicare hospice patients had a day of inpatient respite care.

Family, friends, nonprofits and government agencies may help with in-home help, adult day care or short nursing home stays.

Ways to use a break

• Go outside for a walk
• Have a meal sitting down
• See your own clinical provider
• Sleep

The ARCH National Respite Network has a respite locator to find respite providers and programs in your area: archrespite.org.

The Eldercare Locator connects you with local services for older adults and caregivers. Call 1-800-677-1116 or visit eldercare.acl.gov.

The Family and Medical Leave Act (FMLA) gives eligible employees up to 12 weeks of unpaid, job-protected leave in a year to care for a spouse, child or parent with a serious health condition.

To qualify, you generally need to have worked for your employer for 12 months and 1,250 hours, at a worksite with 50 or more employees nearby. Parents-in-law are not covered. Some states offer more protection.

With Medicare, you pay nothing for hospice care from a Medicare-approved hospice. Room and board is not covered.

To start hospice under Medicare, a hospice doctor and the person’s regular doctor certify a life expectancy of six months or less, and the person chooses comfort care instead of treatment to cure the illness.

Keep in one place

• Advance directive and health care proxy
• Contact list for the care team
• Any out-of-hospital DNR or POLST form
• Insurance cards

Things friends can do

• Bring a meal or organise a meal sign-up
• Collect children from school
• Do a grocery run or pick up supplies
• Walk the dog or mow the lawn

Many communities have traditions for supporting a dying person and their family, such as visits, prayers, songs or bringing food. Let them know what feels welcome.

Ask one friend or relative to send updates to the wider circle by group message or email. That way you don’t have to repeat hard news many times a day.