There are two things that all humans have in common. Someone we love will die and someday we will die. Although death is an experience that we all share, it is a topic that is largely taboo, and for which people are often wholly unprepared. Discussing death makes people uncomfortable, whether it be our own death, or the death of a loved one. Often our only experience with death is what we see on television shows or in the movies.
A Taboo Topic
Barbara Karnes RN, an award-winning end of life educator and author, is working to change that taboo. As a 2018 NHPCO Hospice Innovator Award Winner and a 2015 International Humanitarian Woman of the Year recipient, Karnes has spent more than 30 years devoted to helping educate individuals and families about end of life issues.
In addition to death being a universal experience, Karnes indicates that there are two types of death: one that occurs suddenly, an accident, for example, or one that occurs gradually due to advanced age or disease. When death is gradual, there are three common aspects that begin occurring years, months and weeks before a person actually dies, and there are steps a body takes when it is preparing to die:
- Eating habits change. A person gradually reduces the types of foods he/she eats. Eliminating meat, then fruits and vegetables, soft foods, and eventually refusing water. Food and water are the body’s fuel and if a person is dying, the body will need less and less fuel.
- Sleeping habits change. At first a person may take a morning nap, then he/she may add in an afternoon nap, culminating to the point where a person spends more time sleeping than awake.
- Withdrawing from the world. A person will gradually begin to withdraw from the world, showing less interest in activities or hobbies, and eventually less interest in friends and family.
Education About The End of Life
According to Karnes, 90% of end of life care work is education. From educating the doctors and nurses to educating the home health caregivers and family caregivers, it’s important for everyone to understand that taking care of someone at the end of life is different than taking care of someone who will get better. This means having uncomfortable talks detailing that “Mom can’t be fixed,” but making a commitment to keeping her comfortable and honoring any of her wishes.
In the months before dying, Karnes says that it’s difficult for the patient to see him/herself dying. People often understand the concept in their head, but not in their gut. In the weeks before death, this changes, and the reality of the situation becomes apparent. Accepting and coming to terms with the fact that a person we love will die can be equally challenging for family and close friends.
When speaking with a person and his/her family about end of life issues, Karnes points out the importance of verbally explaining what the individual/family should expect, following that up with written materials that reemphasize what was discussed, and finally, asking if there are any questions. Too often, patients will nod in agreement, especially in a stressful situation, when in reality, they have lots of questions and may not understand some of the communicated information.
Karnes says that while there is extraordinary work and care going on in hospice and from end of life workers, death is still a difficult outcome for traditionally trained doctors and nurses. The medical model is based on fixing people, and too often death is seen as a failure because the patient was not able to be “fixed.” Karnes spends much of her time devoted to speaking and educating people throughout the medical community to try and emphasize that fact that death is a natural part of life.
Karnes is the author of numerous books, but recommends four in particular that can be especially helpful for families and individuals:
Gone from My Sight: The Dying Experience. With over 20 million copies sold, the “Little Blue Book” is the most beloved and most widely used resource of its kind. A very short, easy read designed to neutralize fear, Gone from My Sight is intended to help people understand the normal, natural way that death occurs from disease or old age.
The Eleventh Hour: A Caring Guideline for The Hours to Minutes Before Death. This book offers information, ideas and support for caregivers in the days to minutes before death and just after. It is designed to reaffirm and comfort people so that they have confidence in the way in which dying is unfolding. The Eleventh Hour is a great companion to Gone from My Sight.
How Do I Know You? Dementia at The End Of Life. Dementia, according to Karnes, doesn’t play by the rules when it comes to death due to old age or disease. How Do I Know You? is designed to provide information for people who are caring for a loved one with dementia, outlining the issues that a person with dementia will likely encounter.
Pain at End of Life: What You Need to Know About End of Life Comfort and Pain Management. While the idea of pain medication, especially in this day and age with the opioid epidemic, is often met with hesitation, it’s important to understand that pain medication for someone who is dying is different than giving pain medication to someone who will get better. Death is not painful, but disease can be. This book explains the importance of pain management using simple, non-medical terminology.
The Help Choose Home Podcast
The Help Choose Home podcast series provides information and resources for families about senior home health options. Podcasts are hosted by Merrily Orsini, executive vice president of Axxess and president and CEO of corecubed, an award-winning home care marketing solutions agency.
Help Choose Home is a collaborative effort by the National Association for Home Care and Hospice (NAHC), Axxess, and corecubed to educate the public about the many benefits of the in-home care industry, which includes non-medical home care, private duty nursing care, medical home health, hospice, and other in-home health and wellness services.
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