Palliative care & hospice: what they are and how they help

Palliative care is specialized care for people living with a serious illness. It is based on what a person needs, not on how long they are expected to live. It can start on the day of diagnosis.

You do not have to give up treatment that might cure your illness. The palliative team works alongside your other doctors and adds a layer of support.

Illnesses it often helps with

• ALS
• Alzheimer’s and other dementias
• Cancer
• COPD and other lung disease
• Heart failure
• Kidney disease
• Parkinson’s

Hospice is for people with an illness that can’t be cured, who are expected to live six months or less if the illness follows its usual course. The focus moves to comfort, not cure.

Hospice cares for the whole person: body, feelings, relationships and spirit. It supports the family too, including grief support after a death.

Palliative care

• Can be paid for by many insurance plans, like other medical care
• Can start at diagnosis
• Goes alongside treatment meant to cure
• No life-expectancy rule

Hospice care

• Has its own Medicare benefit that covers almost everything related to the illness
• Is for the last six months or so of expected life
• Replaces treatment meant to cure with comfort care
• Requires a doctor to certify the illness can’t be cured

Palliative care often comes first, while treatment continues. If treatment stops working or a person decides to stop, hospice can take over.

Hospice isn’t a one-way door. A person can stop hospice at any time, for example to try a new treatment, and go back later if they still qualify.

Serious illness can bring pain, breathlessness, tiredness, poor sleep, upset stomach and loss of appetite. The palliative team works to ease these so you can do more of what matters to you.

Anxiety and depression are common with serious illness, and palliative teams treat them as part of care. In one well-known study, people who had early palliative care were less likely to have depression symptoms.

The “Serious illness & facing the end of life” guide has much more on fear, meaning and dignity.

The team takes time to explain your illness and your options, and helps you choose care that fits your goals and values. They also make sure your other doctors know your wishes.

The “Choosing care near the end of life: questions to ask” guide has questions to bring to these talks.

Palliative care aims to improve quality of life for the family, not just the patient. Social workers can help with practical worries, and chaplains with spiritual ones.

In a 2010 study of 151 people with advanced lung cancer, those who had palliative care early had better quality of life and fewer depression symptoms. On average they also lived longer: 11.6 months compared with 8.9 months.

You can stop hospice at any time, for example if your health improves or you want to try treatment again. If you still qualify later, you can go back.

If a hospice isn’t the right fit, Medicare lets you change to a different hospice provider once during each benefit period.

Doctors can’t predict time exactly. If a person lives longer than six months, hospice continues as long as a hospice doctor recertifies that they still qualify.

Hospice covers the terminal illness and related conditions. Original Medicare still covers care for health problems that aren’t related, with the usual deductibles and coinsurance.

A hospice doctor is part of your team, and you can choose to keep your regular doctor, nurse practitioner or physician assistant involved too. Nurses visit regularly and are the people families talk to most.

In 2023, hospice staff made an average of 3.9 in-person visits a week to people getting routine home care, each about an hour long.

Social workers help with things like coverage questions, planning, and finding local help. Counselors support the person and family with feelings, and hospice offers grief counseling for the family.

Chaplains are part of many palliative and hospice teams. They listen, help with questions of meaning, and can contact your own faith leader if you wish.

Hospice aides and homemakers can help with personal care and some household tasks. Family, friends or paid helpers usually give most of the day-to-day care, and the hospice team coaches them.

May include

• Dietary counseling
• Occupational therapy
• Physical therapy
• Speech-language therapy

Hospice volunteers might sit with the person, read to them, or stay so a caregiver can rest or run errands.

A hospice nurse visits regularly wherever the person lives, including a private home, nursing home or assisted living. A nurse can be reached by phone at any hour. The family or other caregivers give most of the day-to-day care.

If symptoms suddenly get much worse and the person wants to stay home, hospice can give at least 8 hours of care in a 24-hour period, mostly by nurses. When things settle, care goes back to routine visits.

Sometimes pain or other symptoms need round-the-clock nursing. Hospice can arrange a short stay, usually five days or less, in a hospice unit, hospital or skilled nursing facility.

If the main caregiver needs a rest, the person can stay in a Medicare-approved facility for up to five days at a time. Respite can be used more than once, on an occasional basis.

Needing a break is not failing. Rested caregivers can give better care. The “Caregiver stress & burnout” guide has more on looking after yourself.

If you have Medicare Part A and qualify, Medicare pays for hospice from a Medicare-approved provider. There is no deductible. Small copays may apply for some outpatient comfort items and for inpatient respite stays.

What the plan of care can include

• Doctor and nursing care
• Equipment such as wheelchairs and walkers
• Grief and loss counseling for you and your family
• Hospice aide and homemaker services
• Medical supplies
• Physical, occupational and speech therapy
• Short-term inpatient and respite care
• Social work and dietary counseling

Not covered under the hospice benefit

• Care from providers the hospice team didn’t arrange
• Hospital, emergency or ambulance care for the illness, unless hospice arranged it
• Room and board at home, in a nursing home or in a hospice residence (short inpatient and respite stays are covered)
• Treatment meant to cure the terminal illness

Once hospice starts, Original Medicare covers everything related to the terminal illness, even if you stay in a Medicare Advantage plan. Your plan can still cover extra benefits and unrelated care if you keep paying premiums. Your plan must help you find a Medicare-approved hospice.

Medicaid hospice coverage is optional for states and varies by location. Many work-based and private insurance plans cover at least some hospice care. Ask your insurer what is included for both hospice and palliative care.

Enrolled Veterans with a terminal condition can get hospice through the VA, at home, in a clinic or in an inpatient setting. There are no copays for hospice, whether the VA or a VA-contracted organization gives the care.

Some hospices offer care at no cost or at a reduced rate based on what you can pay. Hospice financial staff can help you explore options.

Hospice focuses on comfort, quality of life, and the wishes of the person and family. It does not try to make death come sooner or later.

In one study, people who had early palliative care actually lived longer on average than people who didn’t.

Palliative care is based on need, not on how long someone is expected to live. It is appropriate at any age and any stage, and it can go alongside treatment meant to cure.

Hospice serves people with any terminal illness in its final stages, and people nearing the end of life from ageing.

You can choose your regular doctor, nurse practitioner or physician assistant as your attending medical professional while on hospice.

If symptoms can’t be managed at home, the hospice team can arrange a short inpatient stay, and Medicare covers it. The key is to call hospice first.

Choosing hospice can be a way to keep control over care that matches your own values. Families of people who had hospice at home were more likely to describe a good experience at the end of life.

• “Could palliative care help me right now?”
• “Would I qualify for hospice? I’d like to understand what it would mean.”
• “I’d like a referral to the palliative care team.”
• “Can we talk about what comfort care would look like?”

GetPalliativeCare.org has a directory of palliative care programs in hospitals and the community, run by the Center to Advance Palliative Care. Medicare’s Care Compare tool (Medicare.gov/care-compare) lets you find and compare Medicare-approved hospices.

For questions to ask and how to compare providers, see “Choosing care near the end of life: questions to ask.”

Family and friends usually give most of the daily care at home, with coaching from the hospice team. Sharing the load makes it possible to keep going.

Ways people can help

• Bring a meal or groceries
• Drive to appointments
• Sit with the person so the caregiver can rest
• Walk the dog or help with the kids

Hospice chaplains can connect you with your own faith leader. Some families look for a hospice that shares their faith, such as a Jewish or Catholic hospice.

Hospice offers bereavement (grief) support to families for up to 13 months after a death.

The “Grief” folder has guides for the time after a loss, including “Life after a loss.”

Hospice teams include trained volunteers who keep people company and give caregivers a break. If you’d like to give back, ask a local hospice about volunteering.

Medicare can answer questions about the hospice benefit and give you the number for your state hospice organization. TTY users can call 1-877-486-2048.

Worldwide, only about 14% of people who need palliative care receive it. WHO says palliative care should help adults and children, and their families, with physical, emotional, social and spiritual needs.

A few examples

• Canada: palliative care can start at diagnosis and is offered at home, in hospitals, in long-term care and in hospices. Your family doctor can refer you
• United Kingdom: end of life care usually starts when someone is likely to die within 12 months. Speak to your GP to find local services

Elsewhere, ask your doctor or local hospital about palliative care services near you.