Editor's Note: This text-based course is a transcript of the webinar, Preserving Communication and Dignity at End of Life, presented by Michelle Tristani, MS, CCC-SLP.
Introduction and Overview
Welcome everyone, to Preserving Communication and Dignity at End of Life. The topics that we about to discuss are truly difficult, not only for all of us, but for our families, coworkers, and our patients as well. I want to go through the topics with as much detail as possible.
Just a little bit about myself. I work at St. Elizabeth's Medical Center in Boston and at Kindred Healthcare throughout the country. I am a helpline coordinator for the Alzheimer's Association as well. I have those financial disclosures to mention and no financial disclosures.
Today’s agenda is to first review the natural dying process, then to discuss nearing death awareness, identifying end of life stages, hospice and palliative care and the distinction between them, and then advanced care planning. Then we will get into some specifics about our role as a speech pathologist in end of life care. We will talk about communication, cognition, and determining decision-making capacity, as well as dysphagia in the person at end of life. It is important to mention that because pain is so prevalent at end of life, and it is such a concern for families and patients as well as ourselves, there is a separate section on pain management and the communication of pain included at the end of the course.
Course objectives are to describe five signs and symptoms of approaching death; identify three assessment tools for identifying end of life; describe the four levels of hospice; describe three best practice approaches for enhancing communication at end of life; and then describe three best practice approaches for enhancing swallowing at end of life.
I would like to start the discussion today by bringing your attention to a text that many of you have probably read over the years. It is called Tuesdays with Morrie, by Mitch Albom. Morrie is a patient suffering from amyotrophic lateral sclerosis (ALS) who regularly meets with a colleague of his, Mitch Albom, throughout the years. He has a great quote that I think is a wonderful start to this presentation, "Dying is only one thing to be sad over. Living unhappily is something else. The culture we have does not make people feel good about themselves. We are teaching the wrong things. And you have to be strong enough to say if the culture does not work, do not buy it. Create your own. The way to do it is not to run away. You have to work at creating your own culture."
Some of the theme of today's talk is to review our need to help patients, their families, our families and ourselves to not have regret at our final journey juncture. I think that Morrie, for those of you who have read the book or will do so in the future, really has a lot of good advice about not having regret at end of life.
The Natural Dying Process
The natural dying process is a natural slowing of all body systems. The process is different for every individual. It is as different, really, as the birthing process. One person's labor may be a lot shorter than someone else's. Similarly, the dying process is individualized. It can last hours to days. We will go over the dynamics of emotional, spiritual and mental, but then also the physiology of dying and what happens to the body as we decline.
We have many resources available regarding the stages of grief, loss, and dying. Elizabeth Kubler-Ross has many different resources related to the different stages of grief, loss, and dying. Her concepts are older, but they are consistently brilliant, and apply to many situations.
Just a reminder, Dr. Kubler-Ross's stages are denial, where we are saying “No, not me”; anger, “Why me”; bargaining, where we say, “Yes, I see that this is the diagnosis, but…”; depression; and then finally, acceptance.