A few years back, when my dad was dying, his body language told those of us who'd cared for him that he was in great pain. He couldn't articulate the pain, but it was obvious to us. The nurses and assistants at the nursing home where he lived could see it. The family could see it. It was the doctor who had to be convinced, as he only saw Dad once a month, and that visit was brief.
The nurse practitioner was helpful in that she saw him weekly, but his chart showed he slept a lot. True enough. But it was fitful sleep and when he was awake he spent his time lying rigid on his bed propped by one elbow, while he repeatedly slammed his first into the open palm of the other hand. It was obvious to us that he was trying to knock out his frustration and pain.
Dad was always a gentle person. This angry gesture was something we needed to pay attention to. The nursing home was giving him as much pain mediation as they were allowed to do. He was losing ground fast and we knew he needed the kind of care hospice can deliver.
It took some doing, but finally the doctor was convinced. Our local hospice was called, we did the paperwork and Dad was soon under their care. They worked seamlessly with the nursing home staff who knew dad so well. They helped my mother accept the fact that Dad was dying. Once on hospice, his pain was controlled and his angry behavior stopped. He was peaceful and as lucid as his damaged brain would allow. A couple of months later, he died peacefully in my arms.
Five months later, when my mother's intractable pain was at its peak and the nursing home could help no more, my 85 pound mother was put on hospice care. Under their care, she was pain free for the first time in years. We were given some quality time together before her wasted body finally, peacefully slipped away under the watchful eye of her two daughters.
Good Hospice Care Adjusts Based on How A Patient is Declining
These peaceful death experiences made me a hospice cheerleader. I'd always thought it was a good program and knew that I would want such care if I were in a circumstance where I was terminal, but in pain. However, witnessing the strong, caring, efficient yet peaceful way my local hospice cared for my parents was enough to burn the hospice message into my soul. Their motto is "No one needs to die in pain." To make that possible is a noble mission.
Since that time, I've praised hospice organizations and encouraged people to seek them out. I still do. However, after reading a post on the agingcare.com forum about a woman whose mother was dying, and totally unresponsive, being spoon fed "because it was comforting," I asked the woman if she had considered hospice care for her mom. Another forum participant asked the same question. The answer? She was under hospice care!
This really set me back. An unconscious person who is dying is a person whose organs are shutting down. To force food down their throat is, in my mind, torture not comfort. A good hospice will watch the person carefully. My parents ate better under hospice care than they had before because they were out of pain. But as their physical state deteriorated and their organs, one by one, became useless, the diet was changed in accordance to what their bodies could use.
Eventually, the stomach and bowels were no longer functioning and food couldn't be digested. They slowly got so food was not wanted by the body. They were peaceful without it. There was no hunger because they could not process food nor could their bodies use it. Hospice followed them through the process, monitored them the whole time and appropriate measures were taken for their comfort, as needed.
Does It Matter If You Choose A For-Profit or Non-Profit Hospice?
This experience on the forum was shortly followed by a conversation with a friend from another state who is closely involved with the Pioneer Network, an organization dedicated toward culture change in nursing homes. In our chat we wandered into how hospice workers need to be trained in the specific needs of Alzheimer's patients. From there, we started talking about hospice quality. I was amazed to hear how many new hospices are popping up to meet demand. This would be good news if they were all of the quality of my local hospice.
However, as in every other field, there are those who go into business for money rather than from compassion. Now, every business needs money to survive. Non-profit does not mean a business can operate for free. They have expenses to meet, including salaries. Let me be very clear. A hospice being non-profit does not make it good and a hospice being for-profit does not make it bad. Regardless of whether hospice is for-profile or not-for-profit, the regulations are the same.
What I've learned from the post on the aging care forum, and from my talk with my friend and colleague in Georgia, is that even with hospice we must be advocates for our loved ones. We must educate ourselves. If you live in an area where there are several hospice agencies to choose from and you have some reason to think you or a family member may need hospice care, investigate early. Ask for references. Talk with people who've used each agency. Ask about training, especially if your loved one has dementia. Dementia patients are extremely vulnerable in that they often, like my dad, can't articulate their pain. The hospice workers need to know how to handle this.
Ask ahead if they go to the patient's home – wherever that may be. It could be the patient's house or it could be a nursing home. Ask about all of their services including family support and spiritual should you want that. Hospices should provide chaplain services to those who wish this. They should work seamlessly with nursing home staff, if that is where the patient lives, or they should be able to blend care with in-home care agencies and the family if the patient is at home.
Some hospices operate a special hospice home. Check it out if they do. That can be very good – or not. Investigate. Question. Not in a hostile way, but be inquisitive. You may be turning a loved one over to these people at your loved one's most vulnerable moment. You want to know that they know what they are doing. Don't be afraid to ask "what if?" They should be very happy to answer your questions. If you aren't satisfied and you have choices, look elsewhere. If you don't have another hospice to consider, work closely with these people or seek help from your doctor to find other options. No one should have to die in pain.