Creating Positive Passings at End-of-Life
Learn how to care for your loved one, in this last phase of life, and how to make the overall experience better by 90 percent!
As Suzanne O’Brien shares in her book Creative Positive Passings: End of Life Doula, Level 1, Caregiver Training, 90 percent of a “Positive Passing” is planning ahead. No matter what the actual disease process, if someone has made their own choices for what they want or what they do not want for end of life care and if the loved ones (caregivers) have the basic skills on how to care for their loved one in this last phase—the overall experience can be better by 90 percent! She continues to share that each and every one of us will be called to assist someone at the end of life. Whether it is a family member, friend, or someone in the community.¹ If you’d like to learn more, we encourage you to read Suzanne’s book, Creative Positive Passings: End of Life Doula, Level 1, Caregiver Training. The information in this book will help you to assist another human being and their family to have the most positive end of life experience possible. Suzanne O'Brien is a nurse with heart, love and passion for helping others make a positive transition.
Before I review the three stages, in greater detail, I’d like to start with sharing some key points that I’d like you to consider if you are about to engage or are already caring for a loved one.
Put down your phones. We get very real in the last days. Resolve issues and remember, we are all humans and all doing the best we can.
No matter what stage your loved one is in, meet them where they are— whether you are a daughter, son, spouse or caretaker, please meet the patient where they are in their process and work from there. Never take over and always try to give them back control even when they are declining (note: safety is always first). You want to honor where they are. It’s okay. It’s their journey.
Honor their dignity and allow them to be part of their choices. Refrain from saying it is going to be okay. It diminishes their experience.
Acknowledge the patient and the caregiver (remember they are going through just as much intensity through this process). Ask what you can do to help you and how are they doing? Let them know you are going to be there for them and you are their advocate.
Support them in their wishes. Ask them who they would like to see, and when would they like to see them? Keep visits relatively short. Encourage alone time with individuals VS in a crowded room.
It is very important to build trust, be a good listener, be present, and show them unconditional love.
Ask them questions and learn more about their story. There are a few things most people want at the end of life: 1) to be remembered, 2) to pass down their life experiences and beliefs, and 3) to know that their life mattered. As a way to fulfill these desires, we recommend creating a Life Journal to pass on their legacy, experiences and advice. Spend time with your loved one gathering stories and experiences that are important to them. Gather photographs and stories and combine them to create a beautiful book, their Life Journey Journal, for you and the family to cherish for years to come. Some ideas:
Ask them to share their favorite stories from childhood. Anything they’re especially proud of, or a time when they got in trouble when they were younger. Favorite memories, dreams they were able to realize; dreams they still might have a chance to fulfill.
Regrets, they might have a few. Their advice related to life, relationships and if appropriate, raising children. Maybe there are things they would have done differently, or things about you and your childhood they’re especially proud of—which is fun to know about for you.
Take an opportunity to make clear how you feel about them—that you love them, that you understand and empathize with them, even that you forgive them. Validate their feelings. Allow them to share. There are conversations that need to happen. Have those lucid conversations. Go over past regrets and allow them to validate and revisit their life journey. Tell them the raw truth. Say you’re sorry, thank them for being your Mom, Dad, Grandparent… let them unburden their heart and soul. Encourage forgiveness. It is the best gift for the dying and the living. Remember, forgiveness is for you; not just for the other person. Get to that place of compassion.
The 3 Phases of End of Life Care Model
Over 100 years ago providing positive passings was a skill that was handed down generation to generation. During this time, the average life span was 45 years of age, today it is 80 years of age. During a recent webinar with Suzanne O’Brien she shared the three stages a loved one with a terminal illness may go through (not every patient goes through every state). The following information was gathered directly from Suzanne’s Doulagivers.com website. Suzanne has been a Registered Nurse for over 15 years, with much of that time spent at the beside of the dying. While in the process of creating her renowned End of Life Doula training program, Suzanne developed a general model for what to expect for both patients and caregivers at end of life. Although not every person experiences all phases, it is generally looked at as the foundation for planning a solid support system during a patient’s final months, weeks or days of life. Recognizing the need for being able to identify where a patient and family are in their end of life journey in order to offer the correct approach in providing care and comfort, Suzanne developed The 3 Phases of End of Life. The 3 Phases of End of Life Care Model was first introduced through community workshops and later in the publication of her book, Creating Positive Passings & End of Life Doula Level 1 Caregiver Training. The Doulagivers end of life three phase care model is now being used in end of life care around the world by individual families, hospices and health care agencies. Stage 1 is the Shock Phase, Stage 2 is the Stabilization Phase and Stage 3 is the Transition Phase. All of the stages are part of a critical and very important journey.
O’Brien’s 3 Phases of End of Life Care Model
- The Shock Phase
- The Stabilization Phase
- The Transition Phase
The Shock Phase
What it is: This phase is when someone receives a terminal diagnosis. Often times, there is an overwhelming feeling of shock for both the patient and their loved ones. This “shock” can present itself in many ways, such as depression, denial, anger, and withdrawal.
What you can do: It is very helpful to remember that this person and their family have just lost all “control” over the patient’s life. Telling someone that they are terminally ill and that there is no reversing the process requires those around the family to have a strong and supportive presence.
Why is this important? It is vital to establish trust and security with a patient and their family at this time when their world has been turned upside-down. The best way to achieve this is through being a strong, solid support. Never take over. Meet the patient and the family “where they are” in their process and work from there. Building trust sets the tone for your entire journey with them.
The Stabilization Phase
What it is: This phase is when wonderful work can be done. It is hopefully a time when the patient’s pain is under control, and all acute issues have been identified in the shock phase and have been addressed, leading to the highest quality of daily living for both the patient and the family. When things are stable, conversations can be had, goodbyes can be said and unresolved issues can be addressed.
What you can do: This is the perfect time to sit with a patient and talk. Ask questions about his/her life. This often leads to issues or situations that need to be looked at more closely and resolved. Forgiveness is the path to unconditional love. It is during this phase that we encourage giving and receiving forgiveness of things and situations that have happened during our lives.
Patients often times do a “Life Review” at this time, and go over beautiful insights about the contribution they have had in this world. Validate their feelings. Be a great listener. Encourage family members to have “alone time” and share with the patient. There are conversations that need to be had that will not take place in a room full of people. These “goodbyes” are vital to peace and acceptance, allowing for a positive passing.
Why is it important? Unresolved issues will prevent a person from having the most peaceful death possible. It is vital to use this window of opportunity while the patient is able to communicate and have lucid conversations to wrap up loose ends. Patients can do much of this work simply by talking about past regrets with the doula or a trusted loved one.
The Transition Phase
What it is: The transition period is the time right before a person dies. It is the “transition” from this world to the next. This period can last anywhere from hours to days.
What you can do: As a Doula you should be aware how the body physically shuts down. Systematically, we all die the same way. No matter what disease process someone has, the body goes through many of the same steps in the end. Not everyone goes through every step, every time. It is best to be familiar with all of the “steps” or stages, so you can identify what is happening and suggest interventions for comfort, or simply let the family know that something they are seeing is a “natural” part of the dying process and not to be afraid.
Why is it important: The Transition Phase may be the most stressful period of care due to the quick changes the body goes through as it starts to shut down. It is during this phase that the patient will go into a “deep sleep” as the body eventually dies. There are several changes to be aware of so that you can offer suggestions for comfort or simply reassure the family that what is happening is a natural part of the dying process. This knowledge alone can be very comforting.²
¹Creating Positive Passings: End of Life Doula, Level 1, Caregiver Training Kindle Edition by Author Suzanne O’Brien RN.
²Doulagivers 3 Phases of End of Life Care Model - https://www.doulagivers.com/doulagivers-3-phases-end-life-care-model/