Being a patient advocate is a very important part of your loved ones care. You will learn a lot about the medical field. You will need to do some research to educate yourself and make the best decisions. We all have Google so there’s no reason not to do your own research regarding diagnosis, treatments and if you and your patient would like alternative medicine. Please keep in mind that not everything you find on Google is facts. Anyone can put anything on the internet and you have to weed out the facts and fiction.
I personally think the most important part of being a patient advocate is doing what the patient wants done. I know it’s not a comfortable conversation but it’s an important one. You need to know what the patient wants done in every scenario. Most of people have our decision regarding being on life-support. I know when I was young I overheard several people say, “I don’t want to be a vegetable. If I have to be put on life-support just pull the plug.” Back then I felt the same way, but through the years I have learned more about life-support.
I’ve experienced being the patient advocate for more than one love one on life-support. The first time I had not had the conversation of all the scenarios and when they did and did not want to be intubated. I made the decision based on emotion and got my butt chewed out when my loved one woke up. After being discharged we had the conversation and had a lawyer put it in writing.
That paper is nice to have so everyone understood the wishes of the patient. It also takes some of the weight off the advocates shoulders. What happens when the patient changes their mind? The paper is not written in stone so they can change their mind. It’s always best in this case for them to let their Healthcare provider know they want to discard the previous paperwork.
Dr Hulett (Chris) and I did have that conversation and filled out the paperwork stating his wishes. He decided to be a full code. This means he wants anything and everything done to save his life. He knew all the possible outcomes. As a doctor he had seen most of the possible outcomes; if not all. He had also been through a lot of medical issues personally so he did not make his decision half heartedly.
That being said this hospital stay has been a nightmare. I’ve had several discussions with the doctors regarding hospice and his quality of life. After numerous discussions I got upset enough to tell them that he made his choice and they need to respect it! Of course it was a longer conversation than that but that was the main topic. Due to my refusal to allow them to put him on hospice they have taken the matter to the ethics committee. The ethics committee decided that there’s no grounds for them to intervene. Who knew hospitals had ethics committees to override a patients or patients families wishes? I sure didn’t know it until I read it in his chart notes.
That’s only one issue that has made this hospital stay a nightmare but I won’t go into the others today. I will say, I know it’s not a comfortable conversation, but sit down with your loved ones and find out what their wishes are. No one knows what the future holds for us but we can help each other get through it. Sometimes it’s not easy to help but it is worth it.
Send Dr Hulett so love, prayers, good vibes and positive. Lord knows he needs it.
-Lori Hulett
#dochulettfamily