Hospice and palliative care, in depth: when to ask, what to ask, and how the Medicare hospice benefit works

Two things, often confused

Palliative care is care focused on comfort and quality of life, at any stage of a serious illness, alongside treatment that is trying to cure or control the illness. You do not have to be dying to get it, and asking for it does not stop anything else. Hospice is care for someone whose doctors expect the illness to run its course within about six months, when the goal has shifted from cure to comfort. Hospice includes palliative care; palliative care is not hospice.

When to ask about palliative care

When pain, breathlessness, nausea, or anxiety are not well controlled; when there have been repeated hospital stays; when the family is struggling with decisions. Ask the doctor: "Would a palliative care consult help?" Many hospitals and some practices have a team. Care is billed like other medical care; ask what the plan covers.

When to ask about hospice

Families almost always say they wish they had called sooner. Signs it is time to ask the doctor: repeated hospital stays or infections, weight loss and less eating, sleeping most of the day, more help needed with everything, and a doctor who would not be surprised if the person died within the year. Ask plainly: "Is my mother hospice eligible?" The hospice will do its own evaluation and can tell you if it is too early.

What the Medicare hospice benefit covers

Under Medicare Part A, hospice is covered when the hospice doctor and the regular doctor certify a life expectancy of six months or less if the illness runs its normal course, and the person signs a statement choosing hospice care for that illness instead of treatment meant to cure it. The benefit then covers, for the terminal illness and related conditions:

• Nursing visits, the hospice doctor, and a social worker, chaplain, and aide visits.
• Medicines for pain and symptom control, with a copay of up to $5 per prescription.
• Medical equipment and supplies, like a hospital bed and oxygen.
• Short-term inpatient care when symptoms cannot be managed at home.
• Short inpatient respite stays so the family can rest, with a 5 percent share of the cost.
• Grief support for the family; hospices provide bereavement care for about 13 months after the death.
• Care wherever the person lives: home, assisted living, a nursing home, or a hospice residence. Room and board in a facility is not covered by the hospice benefit.

How the benefit periods work

Hospice starts with two 90-day periods, then continues in 60-day periods for as long as the doctor recertifies eligibility. Nobody is thrown off hospice for living longer than six months. A person can also stop hospice at any time, for example to try a new treatment, and can come back later. If the hospice discharges someone because they have improved, that is a good problem.

Questions for the first call

• Are you Medicare certified, and how are you rated on Care Compare?
• How often will a nurse visit, and how quickly can someone come at night or on a weekend?
• Who is on the team, and will we have one main nurse?
• How do you handle a pain crisis at 2am?
• Can hospice come to her assisted living or nursing home, and how do you work with their staff?
• Do you have an inpatient unit or residence, and when would it be used?
• What equipment will you bring, and how fast?
• What do you offer the family: aide hours, volunteers, respite, counseling, grief support afterward?
• What is not covered, and what would we pay for?

Choosing among hospices

You can choose any Medicare-certified hospice that serves the address. Several serve Western New York, some with residences. Check each on Medicare Care Compare and NYS Health Profiles, and ask the doctor and the nursing home which ones they see doing well. The home care directory in CarePair lists the licensed ones by county.

The documents that go with this

A health care proxy so someone can speak for the person, and a MOLST, the pink medical order about CPR and other treatments, which the hospice doctor can complete with the person and the proxy. These are the doctor's and the family's; Cardinal does not give medical or legal advice, and your advisor can help you find the right people to ask.