What is it like to receive hospice care at home?

The experience of hospice care provided at home is not familiar to many people. To help explain how hospice helps support families providing care to a terminally ill loved one at home, here is one family’s story of receiving hospice care at home:

Charles was being treated for prostate and bone cancer for eight months when his doctor told him that the treatments were no longer working. Charles talked with his family about the options. He decided that he would be most comfortable spending the time he had left in his own home. His wife and daughters agreed to take turns providing care for him.

As time went on, Charles’s pain increased and taking care of him at home on their own became very complicated. His family worried that they were not doing everything they could to make him as comfortable as possible. Their doctor said that their local hospice might help. After Charles’s daughter called the hospice, a nurse came to their home to talk about how hospice could help them take care of Charles.

Sally, the hospice nurse, explained that hospice care could help Charles fulfill his wish of dying at home comfortably while being surrounded by his family. With the hospice team, she developed a care plan based on the special needs of Charles and his family. Charles’ wife and daughters still took care of his daily needs, such as helping him move around the home, feeding him, and giving him medication. Sally came to their home twice a week to monitor Charles’s condition, and checked how well his medications were working to relieve his pain and other symptoms. She consulted with the doctor to make adjustments as necessary. She gave the family expert information about how to care for him, what to expect during the different stages of his terminal illness, and answered questions the family had.

The family was relieved that they could get help with crises by calling the hospice any time – someone was always available to talk to 24 hours a day, 7 days a week. If the problem was not resolved over the phone, Sally or another on-call nurse came to the home. There was no need to call 911 or go to the emergency room.

To help the family with daily care, home health aides came three times a week to help with Charles’s physical care, such as bathing. When Charles could no longer manage walking up the stairs, Sally arranged for a hospital bed on the first floor of the family home, as well as a wheelchair to help him get around. When the family was exhausted and needed a short break, Sally arranged a weekend of “respite care” for Charles in a special hospice unit at a nearby hospital. Hospice volunteers also came by the home to provide extra help with household chores and errands.

As Charles’s condition declined, Sally came more often and evaluated his needs to see if any other services, medication, or medical equipment could help make him more comfortable. When Charles developed problems with his breathing, she had oxygen delivered to the home and she showed the family how to use the equipment. She explained the process of dying and what to do when Charles died. She also arranged for a clergyman to come to the home to talk with Charles and his family about spiritual issues. As Charles was nearing death, Sally was there to assist the family and to comfort them at the moment of death.

After Charles died, the hospice provided the family with free grief support for 13 months. Bereavement services included telephone calls, information about the grieving process, and support groups with families in similar situations.

This is just one story of hospice care at home. Each patient’s and family’s experience will be different depending on their circumstances. If you decide to receive hospice care, they will talk with you about what your personalized care would involve.