My mother died last fall. She was pretty bad for the last few months, and her final passing was tough. The Palliative Care doctors were great. At the end, they provided her with comfort care and she died fairly easily. But I was disappointed and angry that her final months were not better than they were. I don’t think she engaged in the proper End-of-Life care planning, which is surprising for the mother of an Elder Law Attorney.

I do not know why she was getting such aggressive treatment for so long, when it seemed obvious at the end that it wasn’t working. I don’t want to disparage doctors that I did not meet, and diagnoses I did not see. But, I feel that someone wasn’t honest with my mother at some point in time.

She had cancer and surgery, and then chemo-therapy for at least a year. They did tests and scans all the time, and the doctors should have been able to give her a sense of whether or not the treatments were working.

I don’t think they ever did. I think she was surprised at the end at how bad she was and how little time she had left. I don’t think she was ever told how bad it was and I don’t think she had time to wrap her mind around the thought that she really was going to die. I wish I had been able to talk with her doctors sooner and advocate for her, but I was not able to do so. I should have asked my mother to allow me to advocate for her.  That is what she needed: a Patient Advocate.

There is a new hospital protocol called Physician Orders for Life Sustaining Treatment  (POLST).   It seeks to encourage discussions regarding treatment and care at the end of life. It balances the desire of doctors to give treatment and save lives, and the needs of a patient to stop treatment when it won’t do any good any more. It is vital that these discussions take place when someone has a life-threatening illness. I heard about it about two days before my mother died. Now I know to recommend its use to everyone.

No one really wants to talk about death, but it is better to know the truth and to be able to plan for it than to be smacked in the face with a cold, hard dose of reality. I wasn’t told how bad my mother was, and from the look on her face, I don’t think she was either. There were more things that I wanted to say if I had been given notice that her time was as short as it was. We did know she was bad, so we had some conversations and exchanged most of the words that needed to be said. But I don’t think the right doctor/patient communication took place. You must fight for that,  it seems.

If a loved-one is facing a difficult illness, you must make sure that you have those difficult, but necessary conversations with your doctors and your family. You must make sure that the doctors do not shirk their duty and that they tell you the truth about the medical condition and the prognosis. The ill person must choose an advocate who will fight for the proper care and help with tough decisions. Only then can you make the right decisions and take the right actions. You must take control of your own end-of-life situation.