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.
Elder care author, columnist and speaker Carol Bradley Bursack is an AgingCare.com contributing editor and moderator of the
AgingCare.com community
forum.
Read her full biography