Key takeaways:
Hospice care provides medical and emotional support for people at the end of life. Hospice also supports caregivers and families.
People can receive hospice care almost anywhere. That includes in their own homes, hospitals, nursing homes, and more.
It pays to plan ahead and understand what services hospice will and will not provide.
The call came on a sunny October morning. “Get here as soon as you can,” the hospice nurse told me. My mother didn’t have much time.
We expected the news, but not so soon. My next few hours were a scramble of packing, planning, and sending so many texts that my finger hurt. Then our family started the 10-hour trip to my parents’ home. The drive had never felt so long. But knowing the hospice team was already supporting Mom and Dad gave me some peace.
Mom had been diagnosed with Stage 4 lung cancer just a few months earlier. Hospice care allowed her to have a good quality of life and remain in her own home, just as she wanted.
Hospice isn’t perfect, and it isn’t right for everyone. But it’s a good option to consider when a parent or other family member approaches the end of life.
Supporting families at the end of life
Treatments might have bought Mom a little more time, but she didn’t want the stress and side effects. Instead, she enrolled herself in hospice immediately after her diagnosis. Ever since she worked as a hospice nurse in the 1980s, she had been a fierce advocate of this form of end-of-life care.
Hospice serves people who opt out of treatment that might cure them or prolong their lives. The goal is to keep them comfortable and help them make the most of the time they have left.
Hospice doesn’t just support the person receiving care — it serves the entire family. Most hospices provide these services:
Regular visits from nurses and assistants
Medications and medical equipment, delivered straight to wherever the person is getting care
Services from chaplains, social workers, and other professionals
24/7 phone support
Other services, such as respite care, animal-assisted therapy, or visits from volunteers (depending on the agency)
Grief support
People must have a limited life expectancy (usually 6 months or less) to qualify. Original Medicare, Medicaid, and many private insurance plans cover basic hospice services at 100%. Our family never received a bill for Mom’s care.
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How hospice helped me as a long-distance caregiver
When Mom got sick, I was living almost 600 miles away. No other family members were close enough to come to Mom’s assistance at a moment’s notice. That meant Dad shouldered the main burden of her care. And both of my parents needed more support.
As a long-distance caregiver, it eased my mind to know Mom was receiving home visits from health professionals. A nurse and social worker both came weekly.
Dad had hearing loss and spoke English as a second language. Phone conversations with him could be challenging. I was grateful I could talk to the hospice team when I wanted an update or had questions.
At the end, hospice wasn’t enough
For many weeks, Mom stayed healthy enough to enjoy everyday activities. She went to church, attended a knitting class, and visited with extended family. She even took her dream vacation, an Alaskan cruise.
The hospice team, and Mom herself, prepared us for what lay ahead. They warned us her health could decline quickly at the end, and that’s exactly what happened. By the time we arrived to share her final days, she was too fragile to leave her bed. But she greeted us with a hug and a radiant smile.
The next few days were nightmarish. Mom was the nurse in the family, and I did not inherit her caregiving skills. Hospice aides came twice a day to help me change Mom’s adult briefs and to check on her. Except for that, we struggled on our own, in a world none of us knew how to navigate.
Managing Mom’s bladder incontinence was the hardest part. Besides embarrassing her, being changed was physically uncomfortable for her. I gladly helped the aides with this task, but I didn’t have the strength or coordination to manage it by myself. Nobody else in the family felt able to help.
By the fourth day, we were exhausted. When I asked the hospice nurse if we could get more support, her answers were discouraging. She said we could hire a private-duty nurse at our own expense — if we could find one. The hospice agency couldn’t make referrals. On Friday night, most home health agencies had closed for the weekend anyway. A few hospices have freestanding residential care centers, but ours didn’t offer that option. We had to keep toughing it out alone.
We underestimated how long it would take Mom to die and how difficult her care would become. She and I enjoyed a close, loving relationship. But when the end finally came on Saturday morning, my first emotion was relief, not sorrow.
The hospice team helped us with many details that need to be taken care of when someone dies, such as contacting the funeral home and filling out the certificate of death. They even informed Mom’s pastor. Like everyone else at the agency, the nurse who came after Mom passed away was calm, respectful, and compassionate.
In spite of the gaps in care, I believe Mom died as well as anyone can. She was in a familiar place, with her family nearby. There were no tubes, machines, heroic measures, or forms filled out in triplicate. In choosing hospice, she gave us a great gift.
Advice for caregivers working with hospice
In my family, Mom did all the research and chose her own hospice. In many cases, that decision will rest with the family of the person receiving care. It pays to be well-informed.
Plan ahead
Many people don’t enroll in hospice until the last minute. Life-prolonging treatments must be stopped to qualify for hospice, and it’s a heartbreaking choice. But even if you want to pursue treatments, consider what you’ll do if they fail. It’s better to have those tough conversations sooner rather than later.
Explore your options
Research different hospices and get recommendations. Keep in mind that people can receive hospice services almost anywhere. That includes in hospitals, nursing homes, assisted-living centers, or their own homes.
Understand what hospice can and can’t provide
Hospices vary, but many agencies provide 24/7 phone support and regular visits from healthcare providers. Most hospices do not offer full-time care for people in their own homes. If you think your loved one might need full-time care, prepare for this possibility in advance. Also, be aware that some hospices might not cover services such as physical therapy or medical care from specialists.
Let go of guilt
There’s no such thing as a perfect death. We will all fail our loved ones in some way. Grief support groups and therapy can help you process the difficult moments. Allow yourself time and space for grieving.
Cherish the time and memories
In the end, we honor our loved ones most by being present for them, and for ourselves.
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