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October 10, 2004

It finally comes out of my head...

I want to talk a bit about my first experience working and observing hospice. I chose this rotation for my community health course because I knew it was going to be intense, I knew I was going to learn a lot, not just clinically, but about myself, about how people are with each other, about life and death and everything in between. And I was right. I already am. Even after two weeks.

On my second day, I had the opportunity to observe one of the RN case managers and went with her to visit her set of hospice patients. We spent the day in the together, and I met four wonderful people and their families. I was immediately struck by how different all of their situations are, and how each individual and their family reacts and cares for the experience in unique ways. One woman had just been taken home a week ago after a round of radiation to ease some of the pain of the spinal metastases that resulted from her lung cancer and was being cared for by her husband and adult daughter, another was 86 year old woman with end-stage congestive heart failure, living alone and generally going about business as usual cooking and cleaning and living a life of consuming organic foods and supplementing her medications with herbal therapies. Yet another patient was a couple, the 58 year old husband, a recovered drug addict was spending his last days at home with bladder cancer, being cared for by his wife.

I spent most of this first day trying to take it all in, to think about each of these individuals and the complexity of emotions and experiences they must be facing during each day that they are home, either in the process of dying, or caring for and watching a loved one transition into death. I watched how spouses would run their hands through the hair on the head of their dying parter, how some would gently hold hands, how some would putt around as though everything was business as usual, and how others would work on cleaning and folding laundry and taking care of logistics. Spending an hour in each of their houses felt like such a short time, but also seemed like a real glimpse into not only individual experiences with death and dying… but of their lives.

I learned a lot from the nurse on this day. How to talk to patients. What it means to have a relationship with their family, to listen to them, to ask questions to assess not only the status of the patient, but with how they are all coping with the situation. I learned that, at least with this nurse, the process of death must be spoken about with the family frankly, so that they can understand what's happening, have some of their fears eased (what happens when my wife is breathing like that? Why isn’t he eating anymore? I don’t understand why I don’t have as much energy as usual.) and hopefully prepare them little by little for what is to come... supporting them in this time.

I was also struck by the privelidge of being in someone’s home, and the importance of being home for the patient and family, during a time when so many things out of their control. Home care allows for some empowerment for the patient. Some sense of security, and when the nurses, the caseworkers, the chaplains and the volunteers are all in and out during the week visiting, it is on the family's turf. They can sleep in their own covers, look out the windows at their gardens, and we are just their to help them in their space, versus the clinical, technical and seemingly all powerful setting of the hospital. And here I am, sitting in the chair that these families ate dinner at, looking at their paintings and pictures, and experiencing what it is to be in their home.

This makes it all more real, more powerful. It also makes it a little more difficult for the clinician (or me) to set boundaries. The sterility and technicality of a hospital is an automatic boundary, and the clinician is less vulnerable to their own sense of what they bring to a situation, and what it brings to them. Here, it is different.

This experience is going to be intense. There is so much to understand. So many nuances, so many emotions, so many stories and experiences. But I am here to learn, lend a hand when I can, and do my best to be real and present and work with these families even in my limited capacity.

Sometimes it really is just about opening your eyes and heart as wide as you can, or touching someone’s shoulder, or talking to a member of the family that seems like they are in distress, sort of disappearing in all the attention that is paid to the patient.

That is what I can do. Learn. Understand. Feel it. And work with the little things.

Posted by missfitsandstarts at October 10, 2004 11:28 PM

Comments

What a wonderful attitude you have about caring for others. You should keep these feelings that you have close to you as you are sure to run into nurses who do not share your perceptions. You will probably even run into nurses who tell you that you “must separate” your emotions from those of the patient and the family to be effective.

That’s true to a point. If you are in the middle of a code, that is no time to emote with the patient and their family. You have to focus on the task of running the code. However, working in Hospice is different than acute care (meaning the hospital, ER, Urgent Care etc…). You are helping the families prolong life in a meaningful way. If that means you hold your patient’s hand and pray with them to make them feel better, and shed a tear in the process, it’s ok to do so. Showing dignity and emotion is no crime and the families will never forget your devotion to their loved one.

Best wishes in Nursing School. The secret to Nursing School is, keep your head up, look interested no matter how boring the person or situation is, and perfect the slight smile and nod of the head as you look interested. Smile and nod, smile and nod. You’ll feel like the Cheshire bobble head nurse by the time you finish.

Posted by: azygos at October 16, 2004 02:28 PM