It's not about me.....

My patient's name was Patty. She was 58 years old. (her real name and small details have been changed for privacy.)

Patty and her family were from the hills of West Virginia. They were very simple people. They started their lives with almost nothing, worked hard for a home, cars, the "American Dream."

Cancer took it all. By the time I met Patty, her husband, and their daughter they had lost almost everything. They lived in a tiny apartment. They had lost their home when they filed for bankruptcy. Patty's husband Bob, was self employed and they had no health insurance. When Patty got cancer she needed chemotherapy. By the time the treatments started and failed, everything was gone. When she became a hospice patient they had exhausted all treatment efforts and finances. They were very proud people and worked very hard. They did not ask for much.

I met Patty on a warm September day. She was doing well. She was still able to do small household chores, her appetite was good, she took no pain medicine. I explained hospice services to Patty and Bob. Hospice does not charge patients that have no ability to pay. We offered many services that would benefit Patty and her family. A chaplain to talk to about spiritual issues, a social worker to help her through the many emotions that dying patient's face, me, the nurse to help with symptom management, a volunteer to help run errands or any other chores that they might need, a nursing assistant to help with bathing and other personal needs on the days that she felt weak and needed the help. Patty and Bob only wanted a nurse and social worker. I am not even sure they really wanted us! We came as a package deal. They had to have us to have hospice involved, everyone else was optional. They politely declined the help. Hospice also pays for medication and medical supplies and equipment. They never asked for any of it. When his wife needed a shower chair to assist with bathing, Bob went out and bought one. I would tell them time and time again that we would supply equipment but they always seemed to "forget."

Patty and I mostly just talked at our weekly visits. She was doing very well. She told me all about her and Bob's courtship, marriage,and having their daughter. These were not educated people. The best way I can describe them is simple. Patty did well for a couple of months. Sometimes she would talk about her impending death and cry. She loved her husband and daughter so much, but knew that soon she would be leaving. On one visit, she told me that she felt like she was being punished by God for something she did in her life. She would still not let us call the hospice chaplain to make a visit. We talked about if God punished like that then a lot more people would have cancer! Patty told me she was a Christian and knew she was going to heaven. She didn't need a hospice chaplain to tell her that.

Patty started to slowly decline around Thanksgiving. She never really had much pain but her breathing grew worse. Her lungs started to fill up with fluid. She needed to sleep upright to sleep. I suggested a hospital bed. She thought about this for a minute. "you can use the electric controls to put the head of the bed up, you will be able to breath much easier," I told her. She was quiet for a few minutes and then she said no. "I wont' be able to sleep in our bed next to my husband. I want to stay with him." I was frustrated. She needed to breathe! That hospital bed would be so much better for her! She had spoken though so I went with it. Next week her breathing was worse. I brought up the hospital bed again. The answer was still no. I rounded up all the pillows around the house and we propped her up. I asked about a Nursing assistant again. Certainly she would want someone to help her take a bath now that she was not able to do so on her own. The answer was no. Her husband would help her when he came home from work. By the next week it was difficult for her to get up to the bathroom to urinate. I asked her if I could put in a foley catheter so she wouldn't have to get up. I bet you know what her reply was! No. Her family would get her there. Her husband now had to carry her.

I saw Patty the day she died. It was exactly one week before Christmas. She was in the bed that she shared with her husband, piled high with pillows. The bed and pillows looked huge with her tiny figure fading into the center of the bed. She tried to speak to me but could not. She wanted to go to the bathroom. I tried to help her get up but she was too weak. "Patty, let me put the catheter in so you can go." Again she said no. "I can't get you there and Bob is at work." She looked up at me and said ok. Her daughter was now giving her medicine to relax, ease her breathing. She still had no pain. We pulled her up in bed, stacked the mountainous pile of pillows behind her and I left. Patty died a few hours later.

Patty did more for me than I did for her. Patty taught me that this work is not about me. It is about my patients. I finally "got it." We meet them where they are. It is not about what I and my four year nursing degree think they should do. It is all about my patient and what THEY need. Working in the hospital you do things your way. Your schedule. When I go to my patients home it is what they want. This is the heart of nursing. This is how it should be anywhere. Whether it is at a hospital or in our patient's own home.

Patty died in the bed she had shared with her husband of 34 years.

Just like she wanted it.