From blogs, videos, podcasts and interviews, here you'll find resources that answer your questions about being an end-of-life doula.
I understand why many of us feel lost when we are in the hospital trying to find out what is wrong with our loved one. We are trying to make sense of how extensive the disease process is, surgeries that are being discussed, and conflicting information we may be receiving. Sometimes we have great to mediocre guidance, and sometimes we have none.
But, I don't understand the attitude of a nurse we dealt with recently regarding our request for getting Medical Power of Attorney and Durable Power of Attorney forms for a friend of ours who is in the hospital. She seemed like we were inconveniencing her and I tried to ignore it at first. Then, when another friend asked about living will forms, the nurse became upset. She said, "Do you all even know her prognosis? I don't! The doctor hasn't even told me what is going on! Why are you doing all this now? This is end of life stuff."
This nurse is working in a major hospital on a cancer floor. My friend has advanced head and neck cancer and is very young. She will be having major surgery tomorrow that will last several hours followed by radiation and chemotherapy as soon as possible. This nurse was actually an impediment to getting my friend's affairs in order. She was actually guiding us to sit back and wait… but for what? What are we supposed to wait for?
Even if you are going to have shoulder surgery, have your advance directives in place. All of us should have them already done before anything even happens. You never know if you will be in a car accident, have a stroke, fall, etc. Have your medical power of attorney and your durable power of attorney in place and your wishes known in writing in a living will. We need someone to talk for us and handle our affairs if we cannot, however temporary.
The nurse said a lot about hope and how talking about all this would take my friend's hope away. I told her politely that we told our friend the truth, which was not that she was doing this because she may die tomorrow in surgery (you don't need the medical and durable power of attorney when someone is dead, just when they are alive), but that she may be mentally out of it for a while and that things may need to happen and decisions made until she was herself again.
Being responsible does not mean we are taking hope away. This nurse is influencing many families and guiding them down a path that will lead to a lot of unnecessary situations. Assigning a medical and durable power of attorney doesn't mean someone is approaching death, although that is when we usually do it. These forms are for when the person is alive but unable to speak or do for themselves in the moments of time when decisions need to be made. This could be a transient thing or permanent, as in approaching death.
I have mine done and I'm not having surgery or dying. My hope is that anyone reading this will do the same. It makes sense and you will be glad you did. You will make a scary time for your family easier in at least a few ways.
Completing your directives, speaking about it with your loved ones and having key people know where they are is the kindest thing you can do for the people that love you.