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Preserving Communication and Dignity at End of Life

Preserving Communication and Dignity at End of Life
Michelle Tristani, MS, CCC-SLP
April 26, 2016

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.

Learning Outcomes

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

Emotional/Spiritual/Mental Aspects

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.

michelle tristani

Michelle Tristani, MS, CCC-SLP

Michelle Tristani, M.S CCC-SLP, has provided speech pathology services for 24 years across adult and geriatric settings from acute care to skilled nursing to out-patient. Michelle specializes in progressive neurological diagnoses, specifically, Alzheimer’s and related dementias.  She has delivered a wide scope of trainings including, yet not limited to, cognitive disorders, dysphagia in persons with dementia, medical errors and ethics, management of the pulmonary, medically complex and palliative care patient populations.  Michelle is currently a clinical specialist with Kindred Healthcare, is a speech-language pathologist at St. Elizabeth’s Medical Center in Boston, and is also an Alzheimer’s Association Helpline Counselor.

Related Courses

Connecting Swallowing, Cognition, and Dignity: An Essential Clinical Pathway for Dysphagia in Persons with Dementia
Presented by Michelle Tristani, MS, CCC-SLP, CDP, PAC Trainer
Course: #10460Level: Intermediate1.5 Hours
A comprehensive, systematic clinical pathway to effectively assess and manage dysphagia in persons with dementia is described in this course. Common eating challenges and contraindications of enteral feeding for those with advanced stage dementia are addressed. Environmental modifications, swallow strategies and adaptive equipment that can enhance the safety and experience of oral intake are also discussed.

Thickened Liquids in Clinical Practice: The Plot “Thickens”
Presented by Angela Mansolillo, MA, CCC-SLP, BCS-S
Course: #10497Level: Intermediate1 Hour
Clinicians who utilize thickened liquids in their clinical practice are aware of their benefits, but what about the risks and contraindications? Advantages and disadvantages of thickened liquids are reviewed in this course with a focus on clinical outcomes, including impacts on medication administration, lung health, and hydration. Product types are evaluated to facilitate appropriate choices for individual clients.

Dysphagia in Neurodegenerative Disease
Presented by Debra M. Suiter, PhD, CCC-SLP, BCS-S
Course: #9732Level: Intermediate1 Hour
Dysphagia is common in individuals with amyotrophic lateral sclerosis (ALS) and Parkinson’s disease. This course discusses the underlying pathophysiology and appropriate treatment programs for each disease, as well as use of alternate methods of nutrition/hydration.

20Q: In the Thick of It - The International Dysphagia Diet Standardization Initiative (IDDSI)
Presented by Jennifer Raminick, MA, CCC-SLP, BCS-S, Danielle Ward, MA, CCC-SLP
Course: #10756Level: Intermediate1 Hour
The importance of using IDSSI to provide standardized language when speaking about texture modification is discussed in this course. Comparisons of IDDSI and the National Dysphagia Diet (NDD), as well as IDDSI standards for pediatric vs. adult patients are presented. Additionally, potential barriers, solutions, and frequently asked questions related to implementation of IDDSI are described.

Back to Basics: Swallow Screening: How, when, and who
Presented by Angela Mansolillo, MA, CCC-SLP, BCS-S
Course: #8969Level: Introductory1 Hour
Screening of swallow function is a well-regarded tool to identify individuals who are potentially at risk of dysphagia and in need of full swallow assessment, but the options are many and varied. This "back to basics" course will teach participants to make informed, evidence-based choices regarding appropriate screening tools specific to their particular patient populations and settings.

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