What I Wish I Had Time to Tell You

What hospice actually looks like.

Many people picture a building, or the last few days of life. Hospice is usually neither. This is what it tends to look like day to day, and the one thing families are most often surprised by.

The short version

  • Hospice is a team that comes to you, most often at home.
  • Its goal is comfort and quality of life when an illness can no longer be cured.
  • A nurse is on call around the clock, but day-to-day care at home usually comes from family, friends, or hired caregivers.
  • You can stop hospice at any time.

Where it happens

Most hospice care happens wherever you live: your home, a family member’s home, an assisted living community, or a nursing home. Some hospices also have inpatient units for symptoms that can’t be managed at home, and for short stays that give caregivers a rest.

Who comes

Hospice is a team. Depending on what you need, it may include:

  • A hospice nurse, who visits regularly, manages symptoms, and coordinates your care
  • Hospice aides, who help with bathing and personal care
  • A social worker, for practical, emotional, and family needs
  • A chaplain or spiritual care provider, if you want one
  • A hospice doctor or nurse practitioner. Your own doctor can stay involved too.
  • Volunteers, who can offer company or give caregivers a break

A hospice nurse and doctor are on call 24 hours a day, 7 days a week.

What’s covered

Under Medicare’s hospice benefit, care from a Medicare-approved hospice costs you little or nothing. It includes:

  • Medications for pain and other symptoms, with a copay of up to $5 per prescription
  • Medical equipment, such as a hospital bed, wheelchair, or walker, and medical supplies
  • Visits from the hospice team, including aide and homemaker services
  • Short inpatient stays, arranged by the hospice, to get symptoms under control
  • Respite care: up to five days at a time in a facility so caregivers can rest (you may pay a small share)
  • Grief and loss counseling for you and your family

Medicare’s hospice benefit doesn’t pay for treatment meant to cure the illness, and it doesn’t pay for room and board if you live in a nursing home or other facility. Other insurance plans have their own rules, so it’s worth asking.

The part families are most often surprised by

Hospice usually does not mean someone is in your home around the clock. Nurses and aides visit on a schedule, and someone answers the phone at any hour, but most of the hands-on care between visits comes from family, friends, or caregivers you hire. During a crisis, hospice can provide continuous care at home, with a nurse or aide staying for many hours a day for a short time, or arrange a brief inpatient stay.

I wish more families heard this before, rather than after. It doesn’t mean hospice can’t work for you. It means planning ahead: who can be there, who can take turns, and what extra help you might need.

When something changes, call hospice first

Keep the hospice phone number where everyone can find it. If symptoms get worse, or something frightening happens, call hospice before calling 911.

This is one of the things I find most beautiful about hospice. The people you call already know you: your illness, your values, what you’re hoping for, and what you want to avoid. A hospice nurse can often help over the phone or come to you, working with a hospice doctor who knows your situation. Many hospices also leave a small supply of medicines in the home for exactly these moments.

Calling 911 starts a different pathway. Emergency teams are trained to keep someone alive first, and comfort can become an afterthought, even when the treatments are painful or don’t match what the person wanted. That pathway saves lives, and there can still be times to call 911. Your hospice team can help you think those through ahead of time.

You can change your mind

  • You can stop hospice at any time and return to treatment aimed at cure. If you are eligible, you can come back to hospice later.
  • You can change hospice providers once during each benefit period.
  • If you live longer than six months, you can keep receiving hospice as long as a hospice doctor recertifies that you are eligible. Medicare covers two 90-day periods, then an unlimited number of 60-day periods.

Questions to ask when choosing a hospice

  • How quickly can a nurse come at night or on a weekend?
  • How often will the nurse and aides visit at first?
  • What happens if symptoms can’t be controlled at home? Do you have an inpatient unit?
  • Can you provide continuous care at home during a crisis?
  • What equipment and medications will you provide?
  • When we call, who answers?

Hospice is not the absence of care. At its best, it is some of the most attentive care medicine offers, brought to the place where someone wants to be.

This is general information to help you ask good questions. It isn’t medical advice for your situation, and coverage details can change; please talk with your own care team and your insurer.

Sources

What I Wish I Had Time to Tell You Palliative care and hospice are not the same thing What each one is, who it’s for, and why asking about palliative care doesn’t mean anyone is giving up. Palliative Care Surgery and palliative care Back to the main page, for patients and families and for surgeons and trainees. For Patients & Families A path through this site For people facing surgery, and the people who love them.