Say “hospice care” to someone and you will probably see them flinch. This is largely because of assumptions associated with the phrase and not always based in reality. Hospice has many benefits that are important.
What is hospice care? I could use a lot of words that are given for this, but I want to be as plain as possible. Hospice is about comfort to the patient and to the family. When an illness has reached a point where the doctors feel there is nothing else to be done, hospice is called in. They provide pain management, geared to keeping the patient comfortable without being so drugged they aren’t aware of the world around them.
How do I set it up? There are several steps which will be outlined below. The setup process isn’t very demanding, as almost every detail is done by the hospice team. In fact, if you’ve been solo caretaker, you may find that this process is far less demanding the being the caregiver.
Talk to the doctor’s office: Setup starts with the patient’s regular doctor. Ask them to let you know when they think it’s time. The doctor will have to approve the change, but most are willing, because the goal is finding what’s best for the patient. The doctor will refer you to hospice, or if you find/know of a hospice provider, the provider can get the referral.
References: This is an important part. Make sure that the care provider chosen, whether by you or the doctor, has positive references. These providers will be handling medications as well as some of the day to day care the patient receives, and good references are a great way to feel that the patient is in the right hands. I was taught by my mother, who is a retired RN what to look for and how important it is.
Set up a meeting: The worker will come to your home or if you prefer, to another location to discuss what is offered, how hospice works and to answer any questions. They will have the necessary paperwork, but you will not be urged to sign them unless you feel it is the right thing to do. This is an emotional time, and it may need to be thought over and/or discussed with other family members.
Meet the people: I can’t emphasize this enough: meet the people who will be providing care. Observe them as they work with your relative. Sometimes personalities don’t mesh well. It won’t reflect badly on the worker if this problem comes up, and knowing how well the patient is being cared for is important for everyone involved.
What hospice isn’t: This is not a death sentence. It does not mean that you are abandoning all hope. Your relative can “graduate” off hospice care at any time, and be referred again should the need return.
With the exception of meeting all the people involved, we have already gone through this process. We will be meeting the caregivers soon, and watching to see how well they interact. I can tell you that it is a very emotionally charged decision, but in the long run, it will benefit our entire family.