…to Life Stories
By Joan Cody, RN
The process of clinical ethics consultation requires us to use a systematic approach to ensure we take many things into consideration when seeking to help those with an ethical dilemma. We need to know who the decision-maker is. We need to ensure that we get our facts right; that we include all stakeholders; that we are open to all possible options; and that we strive for consensus.
One of our goals is often to help determine what is best for each person in the midst of sometimes competing interests. This, however, is an impossible endeavour without an understanding of people’s values and the contexts of their lives. In many cases, listening to a person’s story can help.
Think about it! How can someone give you advice, help you to make a health care decision or try to understand how a family conflict is affecting you without having taken the time to understand those things that you feel are important?
In a perfect world, we might suggest that this should always be the case. However, I understand how challenging it would be to fully understand the story of every patient that comes into the health care system. Nonetheless, I believe that this is vital when presented with an ethical dilemma that might impact decisions about a patient’s care and treatment.
A living history
As a nurse, I was trained to take a good medical history for all of my patients—to get the information in chronological order and, of course, to determine any significant social factors as they might relate to my patients’ recovery. For example, is the patient married or widowed? Are there any children close by? Does the home have a wheelchair ramp? Can the patient cook his or her own meals? Will he or she need home care?
I was diligent and thorough in these histories and believed my patients told me everything I needed to know. Of course they must, I thought. I always filled out the medical history form completely and never left any spaces blank.
But I remember when I first realized how important it is to listen to a patient’s life story, and that the story can be just as important as the history. I have been writing stories about the patients in my life for the past 25 years. At some point I started to make a small note beside each one, stating what I thought that patient had taught me. I have learned about patience, to listen better, that time is a very subjective thing, that hope is fluid and ever changing, and that beliefs and values make us who we are. People are often very brave, many times deeply spiritual, sometimes frozen in fear…human. And so it was when my patients used the things they valued most to get through it, past it and over it—whatever “it” was—that caught my attention. Sometimes it took me longer to find the lesson, while other times I received a quick and gentle reminder of things that I knew to be true for us all.
Over the years, I have been told more than once not to become too attached, not to make “it” personal. And I agree that it is important to find a balance, and that without self-care and boundaries we are of little use to those we strive to help. Nevertheless, health care is about being engaged. It is about being empathetic and seeking to understand. It is about knowing what someone values—what drives them, what they hope for, what they live for. And that is not the same for everyone.
So, how can learning about our patients’ life stories help us with ethical dilemmas?
Listening to Ned
Take Ned’s story, below. How do you feel about Ned after hearing this information about his situation? Do you get a sense of who Ned is as you read? Do you see glimpses of what he might value? What he cares about? What he hopes for?
Consider how you could approach Ned. Do the things you first think about change as you get more information? Do you come up with more options? Would your initial ideas still work at Ned’s story’s end?
This is just a small exercise to start you thinking about what we can learn from life stories and how they can help us facilitate decision-making based on values.
1) Ned is a 62-year-old man. He had a stroke two months ago and now has difficulty walking. He seems angry at staff when they approach him. Staff fear that his negative mood might mean he has reached his recovery potential. But they know they have more to offer and believe that if they can get him to fully participate, he will have many good years ahead of him.
2) Ned tells you that his wife of 37 years, Joyce, died of cancer six months ago. He has one daughter who lives nearby and visits regularly. He retired two years ago from his job as a train engineer and he and his wife had had big travel plans. They had hoped to buy a motorhome and drive to some of the little towns Ned had passed through on the night train. Ned is now lonely and afraid.
3) Ned has found time to be an active volunteer over the years. He says he has a duty to his community and worries about how hard it is to find volunteers these days. He mentions that he is an avid gardener and he is worried that he now won’t be able to look after his garden. He liked his life before his stroke and doesn’t know what he will do now.
Patients such as Ned will move forward if health care workers take the time to actively listen. Did you hear how important it is that he helps his community?
Did you spot his devotion to his wife, his love of family, his need for independence, the pleasure he feels in being outdoors?
Helping others to determine the right course of action requires us to understand that we are all shaped by family, society, religion, education, culture, the environment and life’s events—together, they form our character and the essence of us as individuals. Striving to understand the context of our patients’ lives through their stories will help us to ensure that the options we offer in our services are meaningful and, as a result, achievable.
Joan Cody, RN, is ethics practice leader at Extendicare (Canada) Inc.