by Guest Blogger, Caroline Stevens, RN, MSW
Most people say they want to die at home. Yet most actually die in a hospital—many of them in intensive care. Why does this happen?
Every week or so there is another article about end of life issues. As our population ages there is added interest in how to die well. Some may read about the end of life, talk about it casually, but most fail to do much about it! Younger people don’t realize the importance of creating a plan “just in case”.
I’m a retired hospice nurse. As I approached retirement, I began to wonder what could bring me the satisfaction I felt as a hospice nurse. What was that satisfaction about, anyway? On learning about my work, people would say, “I admire you for that, but I could never do it.” Here’s the thing: in the home of a patient, whether a new patient I was just enrolling in hospice care, or a patient already enrolled, I found that I had to be totally present with the patient and family and quickly build trust. I was honored to bring a gift to the patient and family. I brought assurance and confidence that the patient and family would get through this and “be ok” with the help of hospice. Patients —and most families—had never been in this situation before, and we knew how to help.
Before I retired, I was trained to provide education in decision making at the end of life. One can plan for this in broad terms. Creating a plan called Advance Directives for Healthcare has nothing to do with throwing medical care under the bus. Medications and medical procedures help us live longer, and more productively. Most of us will take advantage of these, yet we still won’t live forever. People continue to die. Death is such an important, if mysterious, life event. We plan very carefully for the birth and care of our children, or even an extended vacation. Why do we not plan for the end of our life?
Death is emotionally and sometimes physically painful, and creates a lot of grief, for not only the dying person, but their family and friends. We don’t really have any idea what dying is like. Sometimes people don’t even have a vocabulary to talk about dying. Planning ahead brings up our inner grief. It can be painful. If our decision makers, loved ones do not know what to do, how to decide, because we never communicated our “dying wishes,” grief may be complicated. As my friend and mentor, Trudy James , CPE says, “talking about your end of life wishes is a gift to yourself and your family.” Those who love you will have a guide for what to do if they have to make a decision when you are unable to speak for yourself.
Thanks to Trudy, I passionately lead workshops to provide information, confidence, language and support to create the Healthcare Advance Directive, a document directing someone’s care at the end of life. I bring this gift to the people that attend our community workshops. This requires me to build trust and be totally present with the workshop participants. We talk about our grief, our wishes for how we hope to die, what the various options and services are, how to choose a power of attorney for healthcare, how to speak with our family and physicians about our wishes.
Feedback is very positive. Attendees say such things as “I’m a cancer survivor. I never could talk about dying. Now I talk about it all the time.” “This has totally transformed my relationship with my son”. “A heart felt experience”.
I hope you will attend a workshop and give this gift to yourself and your family.
Caroline Stevens, RN, MSW is a facilitator for Heartworks.