So I started to write this and it got crazy long, so I thought the smart thing to do would be to break it up into parts. So this first part is just an initial intro.
I will be checking in with all of these posts and answering questions through out writing them. So feel free to ask question or leave comments on older stuff cause I know some people said that they were going to be out of town and so on and so forth.
In addition to myself, if there is anything I can’t answer or am unsure about, I have a Hospice Social Worker she’s an LCSW with over 8 years in hospice and behavioral health, and works with nursing home and ALF patients, who I will defer to. She won’t be active here, but I will forward your questions to her and post her responses in the next post.
I thought I would kick it off with some general info. Hospice is a team approach to managing a person’s care at the end of their life. Although the majority of Hospice patients are older, there is no age limit on Hospice. If you have a terminal life limiting illness and there is nothing more your doctors can do for you, and you would like you let your body take it’s natural course. And stop all aggressive treatment. Then you can elect Hospice.
People commonly associate hospice with giving up, but it’s not. In fact it’s the complete opposite, it’s a real way of taking control of your destiny. You wanna take that trip to Macchu Pichu? See the Pyramids? Visit your childhood home? Eat your way across America? Take a shit in front of Trump Tower? You can do all of that on Hospice. You can’t do that if you are going back and forth to the doctor’s office, going to the hospital, treatment center etc for treatment that is ultimately not going to change the course of your prognosis. Hospice as defined by Medicare is anyone with a prognosis of 6 months or less. But it’s absolutely possible for someone to be on service for a year or more, and that is common and happens all the time. As long as there is evidence that the person is still declining.
With that said, We’re not God. We don’t know when you’re loved one is going to die. All we can do is recognize the signs and treat accordingly. And listen, patients get better and get discharged all the time. All the time. And the mind is a crazy powerful thing. We had a patient, let’s call him, Dave. Dave was discharged and came onto our service from the hospital and he was not ready to die. The doctors at the hospital gave him five days at the most. It’s been three years and according to Dave’s niece he’s doing great.
Hospice takes care of the patient in their home or wherever they might call home. That can be an assisted living facility, nursing home, their child or a relative’s home. Hospice doesn’t really have a place where we keep patients. Hospices do have IPU’s In Patient Units where patients stay but they are only allowed to stay there under certain circumstances. If you have ever encountered a hospice that tells you that your loved one can stay in a IPU indefinitely, they are selling you a bill of goods, and this is something that we will touch on later. Now what hospice does, is we primarily manage pain and symptoms of your loved one’s diagnosis(dx). And we treat any conditions that are related hospice to their hospice dx.
The driving force of the hospice philosophy is that you have an entire team attending to your loved one and you at every possible intersection. A hospice team is made up of A Doctor, Nurse, Social Worker, Chaplain, Nurse’s Aide, and Volunteer.
Your doctor and your nurse are pretty much in charge of what is going on medically. They monitor medications, manage your symptoms. Make visits. Nurses are case managers and they sort of oversee everything. Nurses are also going to dress wounds, like if there are any bed sores. Monitor decline and rate of decline.
Social Workers are at the helm of what is going on psychosocially. And they handle a lot. They are assessing how your loved one is doing, but also how you are doing as well. They are also the ones who are in charge of finding you resources. If you have financial hardships, if you’re loved one needs placement. If you need to figure out what’s going on with your mom’s VA benefits. Funeral Arrangements. POA MPOA documentation Medicaid applications. Social Workers help you with all of that. They also deal with any issues that may arise during the course of your loved ones stay.
Chaplains handle all of the meta physical and philosophical aspects of care. They go over death and dying. And address any concerns you might have within regards to that. If you are already part of a religion or belief system they will usually work with your temple leader, priest, etc.
And if not, that’s fine they can function as another source of emotional support for the patient and their family. Another person that family can voice concerns to. After a patient dies, there is a year of bereavement contact and follow up with the patient family that happens in the form of telephone calls and letters. This is usually assessed after death. If they assess that family is having more difficulty than what is commonly observed, then they can make more check ins and refer you to a grief support group.
Aides come into the home as dictated by the nurse, usually three times a week. And they help you take care of your parent. So they bathe, feed, clean, and groom your parent.
Volunteers are just another support person for your parent or you. They can sit with your parent, but they are not sitters. They don’t have any licensing, but they are trained by Hospice staff. They can read, play music. Or just check in and visit with your parent. Family members/caregivers can also utilize volunteers, they can help you organize, do life review, run errands and tasks that you’ve been meaning to get to but haven’t gotten a chance.
We’re going to sort of get into the nitty gritty. How to choose a Hospice. What to look for. ALF vs Nursing Homes vs In Home. Your rights. Medicare and Medicaid a little bit on private insurance and how that all affects your loved ones care.