Dear Barbara, My husband just passed away. He suffered for several years after his diagnosis. He was in and out of the hospital most of this year. He had been on hospice 6 days.

This is a version of letters I receive frequently. A person has been diagnosed with a life threatening illness, received various forms of treatment for several years, then after a few months in and out of the hospital for various related reasons, comes home with a hospice referral and dies a few days or, if lucky, a few weeks later.

What’s wrong with this picture? A lot!

Diagnosis to treatment to hospice; good. When a person’s condition begins to decline with frequent hospitalizations, in spite of the treatment, it is time to ask the questions, “Are the treatments really working? Are the treatments helping or just causing more physical challenges?”

At this point is when you ask the physician, “What is happening? Is it wise to continue this course of treatment? What are your expectations for this treatment? Are we STILL talking cure? If not, what is your best scenario for continuing treatment? IS it time to stop treatment and talk about comfort care?”

I have to add that this will be a hard conversation. Hard for your physician to answer honestly and hard for you to ask and then hear the answer. You may not want to hear an honest answer. Sadly, many a physician will not give you an honest answer. They will tell you what you want to hear (that they can fix you, that they can keep you alive – no matter what that life is like). For some, it just isn’t in their tool kit to stop trying.

SO, hopefully, the physician says, “We’ve given this disease our best try and it didn’t work. I am offering and suggesting comfort care.” I want to say this conversation happens months before death comes; when there are months of comfort care, when there is living life —— living  life in the best possible way within the confines of your body and disease limitations. When there is time to do and say, to experience, to smile, to enjoy.

Unfortunately, the referral to comfort care generally comes not when there are months to live your best life but when there are only days or at best weeks of living left. So the obvious question is when is a good time to get hospice or an End of Life  (EOL) Worker?

* When the physician says treatment isn’t working. (We’ve already addressed how that doesn’t generally happen).

*When  a person’s condition continues to deteriorate in spite of treatment and hospitalizations.

*When you as a Caregiver look at your loved ones’ living and say to yourself or are afraid to say out loud, “I’m scared. They aren’t getting better, are they going to be here next year?”

These questions and scenarios will occur months before death comes. In those months hospice and EOL Workers can help you and your loved one live the best you can. In those months they can help you live your gift of time to its fullest. 

It is in the months before death that hospice can do their best work of addressing living. It is in the weeks and days before death when hospice enters that they only do crisis intervention. Crisis because family didn’t expect death to come so fast, didn’t know what approaching death looks like. Crisis because of the fear of what is happening and the questioning ‘what do we do while it is happening’ is at its highest.

A hospice referral months before death comes is about education of what is happening and what to do. It is in the months before death that a rapport is built, a trust is developed, knowledge is gained.

Something More about…  When To Choose Hospice

We need to have all the information possible about our disease so that we can make the right decision for ourselves.  Dying is a communal event. It is about words, touch, goodbyes, I wish I had, if only. It is not about medications, procedures and protocols but it is about comfort, pain management, positioning, mouth care, bladder and bowel attention. Dying is about humanity, about people, about hearts breaking, sobs and tears, unanswered questions, why didn’t I, why didn’t you, about guilt and forgiveness. Dying is about opportunities if we will take them. If you or a special person is facing end of life, my dvd kit, NEW RULES for End of Life Care can help you know what to do, what to expect and to have a more sacred experience.

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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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