Close your eyes. Take a deep breath and imagine yourself all alone in your bed in the far back bedroom of your home. You hear people talking and laughing in the other rooms. The sun peeks though your darkened window shades. You are too weak to get up by yourself and require assistance from others to move. You have a bell that you ring when needs arise. Now as you picture yourself include in this scene multiple tubes, collection bags, dressings, and pumps all connected to you. There is a constant low rumble from the suction machine by the bed that is connected to you. This machine helps remove the foul drainage from your abdominal wounds. Every time you get up it requires the assistance of someone and at least 5-10 minutes to disconnect everything. When someone does come in to help there is look of disgust as they smell the pungent odor of your bodily fluids draining and the look of fear as they see you deteriorating before their eyes. You are a medical marvel of what today’s technology can provide.
Now imagine that scene and you have only two more weeks left to live. But you don’t know that. You are simply told “there is nothing more that the medical profession can do.” You know you don’t have much time left but you fear that if you disconnect everything your time will be shorter. What would you do?
This is the dilemma for Betty. She was told she needed to stay hooked up to everything to prolong her life so hooked up she remains. As she remains connected to the tubes and pumps she becomes more and more disconnected from her family. Her family is completely overwhelmed by the complexity of her medical care and fearful to touch her for fear of doing something wrong and causing her more pain.
So in the back room she remains.
The first time I met Betty it took 10 minutes to remove and unplug all her tubing and dressings to get close enough to assess her. She was very apprehensive and concerned over every disconnection and removal. “Oh don’t do that,” she says, “Careful, oh no, that stays there,” and on and on. “These will just be removed for a few minutes Betty so I can check that everything is OK,” I said. Betty tried to be compliant but she couldn’t bear it for long. Not because it was painful but because she was afraid that not being connected to the machines and tubes would hasten her death.
As I slowly and carefully reconnected her back to all the proper connecters and plugs I asked her what the Doctors had told her about her disease prognosis and how she felt about her condition. “Oh you know, they want me to stay hooked up so I can live longer…there’s always hope.” Betty had Peritoneal Cancer that had eaten away to her stomach and digestive tract. Her bowels and digestive juices were being mixed together in her abdominal cavity. This buildup of fluids gave way to fistulas and openings to the skin on her abdomen. Unless these openings and wounds were being vacuumed by the machines there would be copious leakage that mere dressings could not contain.
I let Betty rest from her ordeal and walked to the front room and spoke to her husband and daughter. They were both anxious and nervous. “I had no idea the amount of care she needed when I brought her home,” her spouse stated. He was 78 years old, a retired engineer and married to Betty for 54 year; they had one child, a daughter. I looked to the daughter and she simply threw her hands up and said, “I can’t take care of her, I have 2 small kids that I need to care for.”
I provided some options and alerted the social worker to follow up with some caregiver scenarios and support. As I prepared to leave I continued to hear the low muffled roar of the suction machines from Betty’s room. I had an idea. I turned and blurted out, “How about we set Betty up in here (the front room) so she is not tucked away and hidden in the back?” My suggestion was met with shocked faces. “Oh no, she would scare the kids and the people who came to visit,” the daughter remarked. The spouse shook his head in agreement and said, “No, that is not a good idea. Betty would not want that.” “WHY?” I asked (it just came out). “She is just so particular about the house and always wants to keep it clean and orderly.” As I looked at them both I said slowly, “She is dying – do you really think she cares about how the house looks? What do you think Betty would want – an orderly household or being around the people she loves?” Nothing more was said and I obviously overstepped my boundaries and was shown the door.
I was troubled throughout the rest of the day thinking about this family.
As you cross the threshold of someone’s home it reveals so much. Pictures of family on the wall shows connection to loved ones and pride, travel objects and mementoes portray love of adventure as diplomas and certificates emanate accomplishment. Religious artifacts – or lack thereof can say so much. My best indicator of family function and involvement is the placement of the patient in the final days. Where is that dying patient spending their last days? In the center of hearth and home with their loved ones surrounding them…or pushed to the back.
Where would you want to spend your final days?