Finding the right hospice: all are not created equal
by Carol Bradley Bursack, Editor-in-Chief
My first personal connection with hospice care came as my parents, first my dad, then my mom, each entered a stage in their long journey toward death where regular care, even in a fine nursing home two blocks from my house, was not enough. They had too much pain.
Hospice Care: My Experience
I knew it was time to call our local hospice, Hospice of the Red River Valley (HRRV). HRRV guided me though the paperwork for my dad as I worked my regular job at a newspaper with one hand and signed hospice papers with the other. The nursing home was in full agreement that this was the next step for Dad. Soon, the hospice and the nursing home were working together seamlessly, caring for my dad. His intractable pain was controlled. He was content, happy and able to live out his last days under the watchful eye of his family and these two excellent agencies.
Five months later, my mom's pain could no longer be controlled. She had seen Dad's journey through the death process under the caring eyes of hospice and she wanted the same kind of care for herself. Mom had been "ready" to go for several years. I feel she hung on as long as she did, for Dad. Now he was gone and there was nothing left to hold her.
The same team of hospice professionals and volunteers, together with the care of the nursing home staff, were able to care for Mom until her peaceful, welcome death. Their deaths were hard on us all, but their suffering prior to hospice care had been worse. They were terminal and wanted to die with less pain. Helping people die in a comfortable, dignified way is hospice mission.
Or at least I thought it was.
Hospice Care: Not All Hospices Are the Same
In the beginning, the hospice movement was a small, dedicated group of people who felt that death with dignity and as free of pain as possible was a wonderful concept. The hospices that opened since 1967, when physician Dame Cicely Saunders founded what is considered to be the first modern hospice home in London, have been non-profits based on the belief that "no one need die in pain." Most hospices offer spiritual care, if the patient and or the family want this. They offer grief counseling to families. They support the patient and family in all ways possible.
Today, the good news is most health insurance covers hospice care. The mixed news is that when hospice care began to look profitable to some business people, more hospices formed, and not all are good.
I'll admit that even after learning of the surge in hospices, I remained pretty naïve, even excited that more people had this choice. But, as a columnist and caregiver forum moderator, I have heard some stories about hospice care that were horrifying. After discussing the issue with a friend from a different area of the country, my eyes were opened to the fact that hospices now need to be checked out with the same diligence as any care facility.
Hospice Care: Making a Decision
- Do Your Homework. If you have a choice, talk to people at each hospice in your area. Ask about their medication policy, their feeding policy, and their ideas about care in general. Listen carefully to their mission as presented by the people who may be caring for your loved one.
- Ask for References. People who have used a hospice are generally very ready to talk about their experience. You can leave your name when you talk with them and the hospice people should be able to find families you can check with. For example, if your loved one is staying at home to die, ask for references so you can talk with someone who had a similar experience.
- Talk to Others. Talk with family members who have loved ones at the nursing home under hospice care. Ask how they like the care. Is their loved one comfortable? Are they comfortable with the hospice staff? Does the hospice staff work well with the nursing home staff?
Hospice Care: Talk to Others, Share Your Thoughts, and Be an Advocate
I am deeply grateful to Hospice of the Red River Valley and I hope they are there when my time comes, assuming I die slowly as my parents did. I willing talk to anyone who wants to know what I think of the agency. Most family members of loved ones who have used hospice care are very willing to share their experiences if you seek them out.
If you don't have a choice of hospices, try the hospice or palliative care unit at the hospital where you know doctors. But, as with any care situation involving a vulnerable person, keep a close eye on things. If you think your loved one is in distress, ask why. If you think there is pain when it should be controlled, ask why. If you think your loved one is being neglected, such as not being turned regularly to prevent bed sores, or not kept clean and comfortable, ask why. You are the advocate.
Chances are still good you can find a well run agency. However, you need to be alert and aware. Your loved one is counting on you.