When the doctor says, “We are having a difficult time fixing you;” “I can’t fix you, let’s talk about comfort care;” “We have tried everything and the treatments are not working to eliminate the disease progression;” “I can not give you the quality of living that we were hoping for with the treatments at our disposal;” or “Let’s talk about how you can best live your life from this point forward,” — This is the time to consider end of life comfort care.

These are the words I wish physicians had the courage to say to their patients who are facing life threatening conditions. To qualify, some physicians do address these issues with their patients in a timely manner but, honestly, many do not. 

Remember, the medical model treats diseases that people have, not necessarily people that have disease. In today’s medical model disease is to be “fought” at all costs. Often the motivation for treatment is that what we learn from one patient’s experience, disease progression, success or failure, will help us learn how to treat others more successfully.

Unfortunately, this medical approach does not take into consideration that the body is programmed to die. Everybody dies and one of the ways it dies is because of disease.

Taking the above into consideration, it is really up to us, the patient and family, to look for the success or decline in the treatment options and progression. I am suggesting we consider all options with a clear vision of how we can live life in its best possible way, to look at life as being more than just the body breathing.

What can we look for that tells us when it is time to consider comfort care and not aggressive treatment options? Comfort care being palliative care, hospice care, and/or End of Life Doula support.

1. In spite of treatment the disease continues to progress, invade, cause pain and bodily symptoms. This appears so obvious yet in our desperation to stay alive, we often ignore the very message our body is trying to tell us.

2. When in your heart you question if your loved one or yourself will be here next year. We tend to give people more time than they have. If we are questioning, “Will I or they, really make it?” it is time to consider comfort care options.

3. Food, sleep, and social interactions are changing. There are more naps, less social interaction, and less and less food intake. These are signs the body is preparing to die. Yes, they are also signs of a person experiencing the reactions to treatments. There is a thin line here to be watched and observed.

4. As a patient, as a family, as caregivers, you are becoming exhausted, frightened and concerned about how life is unfolding and what the future holds. You don’t have to do this alone. There is support and guidance.

Bring up to your physician your concerns and fears about ending treatment and about the appropriateness of a palliative care or hospice referral. You do not need physician approval or a physical order for an End of Life Doula referral as you do for hospice and palliative care programs.

Approaching the end of a life, yours or someone you care about, is time intensive, challenging, frightening, and often heart wrenching. You don’t have to do this alone. There is support available BUT often YOU have to ask for it, the medical establishment doesn’t always offer it in a timely manner.

Something more… about When Is It Time To Choose Comfort Care?

If you or someone you know have been given a life limiting diagnosis, I have a booklet for how to live the best life you/they can within the confines of their body and disease. It is called A Time To Live: Living With A Life Limiting Illness. It is part of the End of Life Guideline Series.  

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Originally Published on https://bkbooks.com/blogs/something-to-think-about

Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.

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