What are the 5 stages of grief?  Join CJ as she talks to Dianne Gray, head of the Elisabeth Kubler-Ross Foundation, and Ken Ross, son of Elisabeth Kubler-Ross, about Elisabeth Kubler-Ross’s classic book, “On Death and Dying”.

Show on 5  Stages of Grief

• What are the 5 stages? Are the stages same for grief and death? Answer in Video
• What enables people like Elisabeth to talk about death so easily? Answer in Video
• What are conversations that would be helpful to have with family about death and dying? Answer in Video
• What was it like to see your loved one die?  Jump to Answer in Video
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What are the 5 Stages of Grief? Conversations to have with loved ones about Death

EDITED AND CONDENSED TRANSCRIPT

Q: What are the 5 stages? What is generally misunderstood about the stages created by Elisabeth Kubler-Ross? 

A: (The 5 stages are a normalization of emotions that happen during death.  These stages are denial and isolation, anger, bargaining, depression, and then acceptance. (Ken Kubler-Ross) While hope and preparatory group is something in my mother’s book, both are never described as part of the 5 stages as this work has taken a life of its own. (Dianne) When you look at the graph in the book about the 5 stages you’ll see that hope rides throughout the whole process. If you started to research Elisabeth’s work you’ll see that hope is part of every living person’s being and that when a patient lets go of hope that they often die.

Q:  Why are the 5 stages the same for grief and dying?

A: Elisabeth Kubler-Ross original work was about dying, and these stages came from interviewing two hundred dying people at the University of Chicago. Years later, Elisabeth came to understand that grieving patients felt very similar things to dying patients did in terms of the 5 stages. While these stages are applicable they were originally intended to address the dying.

Q:  In practice, how do the dying experience these 5 stages (sequentially, all of the stages, some of them) and how is it different than info you find on the internet? 

A: (Dianne): Elisabeth’s work was very clear that not all people go through all the stages, nor do all people go through the stages sequentially.  It’s not a linear, strict rulebook for what anyone “should” experience. Each person’s experience of grief and end of life is unique as their DNA. This work was set as a guideline so that people would understand and normalize their experience with grief and end of life.  Some people go through some of the stages, none of the stages, or go through all of the stages.  Folks go forward, they go backwards.  For example, you may go out of “anger” and then months later go back into anger because you are angry about something else.  This work is also about hope, compassion, and the human right to know one’s prognosis. (Ken): My mom said “Let’s get through with all the stages! The book is about conversations with the dying”. She really just wanted to get the conversations started because no one was talking about death in America and people were dying very badly.  She thought the main lesson of the book was actually listening to the patient because universally people were not being listened to when they were dying, or not even told they were dying.

Q:  Why was it so easy for Elisabeth to talk to the dying? What conversations did she have with you, Ken (her son),  about death and dying? 

A: My mother was a country doctor where death was a natural part of life. Growing up, my mom would take me to lectures and workshops so I would meet dying people growing up.  When I was 10, 12, 14 years old, I’d meet people my own age who were dying. Our uncle died in our house and instead of my mother hiding it, she invited us in to see his body, and see it as a natural thing and nothing for us to fear.

Q: What are important things to say to your family about dying and death? 

A (Dianne): My son was diagnosed with a terminal disease, and I would say to him, “I love you”. “I will not leave you”. “I will always be by your side”. “We will do the best we can and the doctors will do everything they can”.  “You have this much time to live. Live a little”.   There were times he wanted ice cream for breakfast, so I’d give him a little, so what.  For an adult, it may be chocolate, smoke, a drink, etc.   You need to speak and be the truth.  It’s important to speak the truth, because people can see through it. Always. (Ken): Oddly enough, my mom never discussed her work because she needed relief from her work.  She just wanted to be a normal mom. When my mom and I were together with my sister and dad, it was all about my mother cooking, make candles, do hobbies, go ride our bikes, etc. Let’s go have fun, let’s enjoy life.

Q: How have your experiences and knowledge of death affected your life?  

A: (Ken): The dying have taught me to enjoy life and live it fully. I picked my dream job very early on and I’ve been a travel photographer and have photographed 92 countries.  It’s my dream life. I thought very early how I wanted to spend this finite time I have.  I really have to pack it in and have a lot of fun. People kept on saying, “Ken, you need to settle down”.  And I would say “Life is short and I have to keep on doing this until I drop”.  (Dianne about life with her dying son) We lived life petal to the metal and that doesn’t mean going, going, going, It was about living moment-to-moment and being totally present to my kids, what we were doing, and whoever was around. Whether it was arts and crafts or trudging through a waterfall, it was being singularly in that moment and breathing and drinking very bit of life in that moment. We lived more fully in those 14 years then so many people I know.  Because so many people think next year I’ll sit down with the kids and make that art project, play baseball in the park, I had the gift of knowing that life is short.

Q: What are the conversations that we should consider having with our loved ones? 

A: (Dianne) Dr. Ira Block said that there were four things that matter most to say.  I love you.  Thank you.  Please forgive me.  I forgive you (see more at http://www.thefourthings.org/).  Another thing Elisabeth taught us that it’s really important to listen. Some things you can ask: “What can I do for you?” “What’s important to you?” “What can I do to achieve or be who you would like to be in these next months or years?” And listen.  Say nothing and wait 18 seconds or more. It’s important to ask if there is “unfinished business”, which are things in the deep recesses of our minds that we need to do to settle the score with in a loving way. For some people, it’s conflict resolution or leaving it to agree to disagree.  For others, it’s doing something, like an act of kindness or act of service.

About Dianne Gray

HOW DIANNE GOT INTO HOSPICE AND PALLIATIVE CARE: A PERSONAL STORY

Like many people, our best choices often revolve around our personal lives. The story of Hospice and Healthcare communications starts with a simple storyline: “It was the best of times, it was the worst of times.”

You may recall this phrase from a well known book, but it also applies to my life.

I was 28 years old, had what society deems “everything” including a long awaited blonde-haired green-eye son named Austin. What we didn’t know was that Austin has  a rare neurodegenerative disease named NBIA Disorders (neurodegenerative brain iron accumulation disorders). www.nbiadisorders.org

The disease slowly took away five year old Austin’s ability to walk, crawl, move and see clearly. It also removed his ability to eat and talk over a period of years, while leaving his cognitive process in tact. By the time Austin was nine, he could no longer attend school and he was in extraordinary pain every day due to his speacticity and dystonia. He cried, I cried and we were all struggling to hold on. We needed help.

So in 2000, I called hospice and we became an “in home” hospice family– and “family” now included a joyous, healthy little daughter, Christina.

I desperately needed help titrating thirteen different medications which included morphine, methadone, and valium. Like most pediatric palliative care/hospice families, I was in way over my head with nursing schedules, contracts, medications, skin care, and grief issues…not to mention emergency issues: hurricanes, pharmacy errors, and nursing no-shows. Let’s also not forget normal things like Santa, homework, bath and story time, holidays, friends and much coveted sleep.

Unfortunately, in 2005, I had to make the most difficult medical ethical decisions of my life regarding my son’s care and prognosis. Austin died February 25, 2005 at age 14, comfortable and at peace with Christina and I holding his hands.

The fourteen year experience with Austin and Christina, our hospice and medical care providers, friends, family and faith community, was filled with the best and worst of pretty much everything which has provided me with a bundle of insight, and the desire to create incredible programming and education projects and partnerships in the hospice and palliative care fields.

This experience changed forever my views not only on death and dying but also on life and living. Make no mistake about it: I want my son alive and healthy, but I can’t change that. What I can change is how I live the rest of my life.

I commit to doing substantive work where and when I can in the areas of hospice and palliative care (including pain management and end of life care.)

To me, its this simple: Death is not optional, but living life fully is.

– See more at: http://hhccommunications.com/founder-dianne-gray#sthash.GaC3HaPl.dpuf

About Ken Ross

– See more at: http://hhccommunications.com/speakers/ken-ross-0#sthash.vb1DRI09.dpuf

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