This blog is a place for me to put thoughts but also a place for me to learn. As a nurse, I do not have alot of hands on experience with hospice and palliative care. The most direct experience I had with palliative care and hospice was when my grandmother was dying. She had a number of problems but diabetes, heart disease, alzheimer's, and kidney failure were the most severe diagnosis. Over a period of about two years, after entering the nursing home, she rapidly declined. It was heartbreaking to see such a strong and courageous women loose her independence. The alzheimers progressed and she hardly remembered who I was most days. But she was always angry because she hated living like that. For months I begged and pleaded with God to let her go. She had NO decent quality of life. All that she valued had been taken from her as she lost her independence, her ability to care for herself, and even her memories of those she loved. It was a vicious cycle of medicines, tests, and nothing ever seemed to work.The meds had terrible side effects and just seemed to make her worse at times. Even though I am a nurse, I often times felt powerless because I could not help her.
In late December of 2007, my grandmother's leg began hurting her. She was in excrutiating pain. She was admitted into the hospital and numerous tests were done. After a venous ultrasound was done, it was determined that she had basically no circulation to her leg and she needed an amputation. This was difficult for our family to hear. After discussing it within the family, we asked the doctor for a palliative care consult. We refused the ampuation. In this day and age, that is unheard of. I see so many patients with amputations, some of them bilateral. Usually due to the progression of diabetes and the damage done to the vascular system. We believed that my grandmother was already miserable with no quality of life and that with her dementia she would be at an even greater risk for falls once she lost a limb. She would forget and try to get up. Plus when she did realize that her leg was gone, she would forget,and then have to relive that experience a thousand times over as she realized that her leg was gone. THis seemed like torture in itself and we did not want it to happen. The palliative care nurse, Rachel Wunsch, was amazing. Her intuition and kindness had such a significant impact on us. After my grandmother was discharged back to the nursing home, the hospice nurses finally got my grandmother's pain under control. She spent a week in the hospital in pain. the nurses never treated her pain like it was important when she was in the hospital. The only nurse that really worked with us in the hospital to get her comfortable was Rachal because she was a palliative care nurse. The hospice nurses knew exactly what to do. After about two weeks infection set in and my grandmother passed away peacefully. It was also amazing because she kept hanging on and we didn't know why. She had not seen my uncle in at least a year. We were able to locate him, get him down to Victoria, and within hours she passed away but that's another story.
Anyways, my point is this...I have seen in clinical that we as healthcare providers try to fix everyone. The focus of the current health care system is curing. Often times the nurses and doctors forget that we can't fix everyone. Today I saw a patient that has been deteriorating for months with a bilateral below the knee amputations, a stage four ulcer that was horrendous, and many other complications still not on hospice care. Months ago when I was exposed to him in the LTAC he needed a hospice consult. No body thinks of these things and these patients lives are prolonged with no quality, often times the pain is undertreated.
We have to do some thing to change the current system. We have to do something to enhance the dignity and care our patients recieve at the end of our lives. I would like to know what experiences others have in this area. I feel so passionately about this that I am considering working as a part-time hospice nurse to gain experience in this area.
Of course we also have to address the issue of how we define care in the current system. The long term acute care facility(Warm Springs Rehab) serves a population of patients that will not be rehabed generally. I would say that based on a visual count of their census last summer, about 70-80% of the patients are complicated chronic care patients. But they are in a facility with the term long term "acute" care. What is acute about patients with five or more diagnosis, chronic ulcers and wounds, patients who will never be able to care for themselves again. This is not what acute care was intended to be and we need some restructuring in our system of what we define as chronic and acute care.
So that's the start of my blog... I hope you have some thoughts to add and things to teach me about hospice and palliative care.