The End of Life Doula Movement, Gaining Momentum Around the Globe
By Anissa Picard
01/13/2020
There is a relatively new movement growing, not only here in the United States, but around the world. This is one that pushes every human to dare to do death differently. The Positive Death Movement is here, now, and the death doula profession has appeared right along beside it! Bridging the gaps between medical care and hospice care, the End of Life Doula is helping dying patients and their families experience more positive transitions.
In this day and age over 70% of people wish to die in their own homes, surrounded by their loved ones. End of Life Doulas or EOLDs, sometimes called Death Midwives or Death Doulas, are helping make this a possibility for many. Death is not an emergency and can become a process that is looked at as sacred, positive, and peaceful. There is quality of life and quantity of life and most prefer quality over quantity. This is human consciousness evolving to improve the transitioning process for everyone.
An End of Life Doula is simply a non-medical person who gives physical, emotional, and spiritual support at the end of life. They may provide care before, during, or after death. Physical or logistical support could be anything from respite for the caregiver(s) to running errands or cooking meals. Supporting the emotions of a patient or their family members takes compassion, presence, and a listening ear. Spiritually, a doula would do things that were in alignment with the person’s religious or spiritual beliefs, which may include: prayer, meditation, or even sometimes rituals. Hospice doctors, nurses, and personal care assistants have time constraints, while doulas do not. A doula compliments hospice care in almost every way.
There are a variety of ways an End of Life Doula can help the dying patient and their family members in the face of death. Each and every EOLD comes to the table with their own set of skills, experience, and scope of practice. Depending on the time frame of the person’s illness, a doula may have time to collaborate with the patient on artifacts, be it a recipe book, a work of art, scrapbook, audio recording or a slide show. Together they are able to co-create something which speaks to who that person is and gives more meaning to the life that they have lived. This is called legacy work and is a wonderful option to provide the dying patient.
Even Virtual Reality can be used to help the dying patient have a more peaceful and accepting transition. It has been known to help reduce pain. If they really have a deep yearning to see a certain place they were never able to visit or to return to a magical place they have once seen, VR is a magnificent tool! Hospices around the world are implementing this to improve patient care. A doula may provide the headset and work with the patients in utilizing this technology.
Doulas may talk with the patient for hours to find out how they feel about the oncoming changes both emotionally and physically. They’re there to help calm the patient and to possibly aid in pain management using meditations and/or guided imagery. Some doulas are also Reiki therapists. Reiki can help someone at the end of life to heal them spiritually and emotionally to ease their transition from this world to the next. Doulas often work with the patient on forgiveness issues, whether it be themselves who need to ask for forgiveness or the one to forgive someone. They are able to help them write letters, emails, or even have a video conference. EOLDs are also there to inform the family about signs to expect once the process of transitioning has begun. To be with someone and their family at the end of life is truly a privilege and a blessing. In our society, we aren’t really familiar with the dying process anymore. It has been removed, tucked away in a sterile white room.
Days or hours prior to the patient’s transition, we hold vigil, holding the person’s hand, placing a lit tealight next to the bedside. Some doulas may choose to sing to the patient while holding their hand, play harp music, which helps to calm their anxiety, or perhaps music that the patient previously chose. They may have their favorite aroma floating subtly through the air, be surrounded in their favorite colored bed linens, with their family surrounding them or their beloved pets curled up next to them. It is a doula’s job to create the most loving and peaceful atmosphere possible.
I became and End of Life Doula a year ago and will never look back on that life changing career move. It was a calling and I feel extremely blessed that I heeded the call!
Incorporating Virtual Reality with Hospice Wishes
by: Anissa Picard
10/3/2019
It was almost a year ago that my son returned from an evening outing with some friends, stars in his eyes and the biggest grin ever painted across his long thin face. There was a brand new VRcade called VRHQ (Virtual Reality Headquarters) that had opened up in Wintersville, Ohio and it seemed to be the best thing ever to him and his gang of friends! VR stands for “virtual reality”. VR is a simulated experience that can be similar to or completely different from the real world. It involves a pair of goggles, two handheld controllers and applications which can be used for entertainment and educational purposes.
Their excitement enticed me to see what it was all about. This time around, I decided to take him and his friends and try it out for myself! I was truly impressed with the owners, Joe Scalise and Bailey Black who were welcoming, friendly, intelligent, professional, as well as understanding. They were almost too good to be true!
While my son and his buddies were playing games, I took off to Croatia, a place I used to visit in my youth. I was able to relive some of my memories of being there and my heart felt incredibly happy. I couldn’t stop smiling! Something inside of me was triggered and I’m not really able to explain the rush. You have to try it out for yourself!
Being an End-of-life Doula, as well as a hospice volunteer, I thought about the possibility of bringing smiles to the dying and immediately asked him if he could somehow bring his equipment into a hospice. He stated that he would indeed be interested in doing something similar of this nature sometime in the future. I was ecstatic to say the very least!
Fast forward 10 months and voila! I found myself with Joe, the owner, carrying in the equipment to Valley Hospice’s Liza’s Place in Wheeling, West Virginia. It was actually happening! It had been a dream for the past 10 months and now it was becoming a reality.
As administrators, nurses, aids, and other staff members watched, one-by-one we gave each resident a truly unique experience. Fred Gersting (pictured) traveled to Italy where he was stationed during WWII to see if the hotel where he stayed with G.I. buddies was still standing and to go back to go back to the Blue Grotto in Naples, Italy. Another relived her vacation in the Grand Canyon, while someone else went scuba diving along the Great Barrier Reef. Some smiled, others laughed, and some even cried. The patients reminisced and shared stories and memories with one another. It was a wonderfully emotional experience, not only for the residents, but for Joe, myself, and the staff as well.
As an End-of-Life Doula, I began reaching out to other hospices around the world to inquire if they were also using VR. Sure enough there were several that had already been using VR. Alex Padureanu, the CEO of Hospices of Hope in the UK gave me insight on creating surveys to follow up on the results of bringing VR into hospice to better understand the impact on any improvement of the quality of life of patients. He also informed me of the first VR platform designed for healthcare, applied VR, developed in Los Angeles California.
With all of this being said, I have developed a new passion that is coinciding with my passion as a doula to help bring some wonderful lasting moments to hospice patients.
Collaboration is key and I hope that implementing VR into your skillset as an End-of-Life Doula might become of some interest to you, because it is definitely interesting to the people who long to have more life experiences!