Doula Profile: Brian Ghafari

by INELDA

Brian Ghafari, RN, BSN, MSHS

Brian Ghafari-Naraghi is a registered nurse who holds a master’s degree in science with a focus in end-of-life care from The George Washington University. Brian and his husband of 26 years, Danny, live in Kansas City, Missouri. He has two young adult children, Jeremy and Amber, who with their respective partners (Sara and Josh) have blessed him with a beautiful family. He is a baba (Persian for grandfather) to four wonderful boys. “They are my heart,” Brian says. “I have a wonderful family who are my amazing support system. They encourage me to help people in need and understand when I have to go work.”  His business Serene Passages currently provides services free of charge while he finalizes (his almost completed) INELDA certification.

 

Q&A With Brian

When and why did you decide to become an end-of-life doula?

End-of-life care chose me as the focus of my nursing work. I was called to serve the dying. As a new grad working in an ICU, I was assigned the dying patients since the seasoned staff did not like this part of nursing. I found out that I enjoyed providing care for patients and families going through the dying process. I found that I could be a rainbow in their storm—helping ease their fears and concerns, as well as providing information on the process.

 

How long have you been doing this type of work?

I volunteered when I was 16 years old with patients diagnosed with AIDS—being present to bear witness to people so that they wouldn’t die alone. Professionally, I have been working in end-of-life care for over 20 years.

My nursing career has also given me an awesome ability to work in different areas. I have worked in ICUs (surgical, medical, burn, pediatric, and neonatal), the emergency room, the oncological unit, hospice, and palliative care, and as a clinic nurse caring for people with amyotrophic lateral sclerosis (ALS) and muscular dystrophy. I have also spent time working in nursing administration, and have had a focus on public health and clinical research. I always felt pulled to work with the dying. It is a very natural place for me to serve.

 

What type of environment do you work in?

Most of my work is done in the patient’s home, but I also care for patients in a skilled nursing facility. I also work full-time with ALS patients and serve as a neuromuscular clinical and research nurse coordinator. The most interesting environment that I have worked in was with a man who chose to live on the street. Together with the help of another nurse, we were able to honor his wishes by scheduling a time to meet in a local park.

I now volunteer with an organization named Care Beyond the Boulevard. We are a group of health care providers who deliver health care services to the homeless in my area. We go out to where the patients are living. We have a converted school bus that was transformed into a clinic. You can’t miss it; the bus is lime green and full of health care providers providing love and care!

 

What do you do before you meet with a new client?

If possible, I try to review my client’s medical history prior to our first meeting. I also ask the client to designate a person who can bear witness to our conversations and take notes, since we will talk about many things.

Before my visit, I take time to meditate and do a body survey to make sure that I am focused and ready to be present. I also remove my watch because I don’t want the client to think I am focused on time. I choose my outfit to look professional, but also comfortable.

I have a music playlist that I put on in my car as I drive to client visits. I have notes taped up in my office and in my car that state, “It’s not about you, this is their life and story.” Once I arrive at the location, I take time to focus on listening. As I begin to meet with the client and family, I ask permission to take notes and see if they have any questions for me. I provide the client with some general information about me and why I work in end-of-life care.

My next step is to ask clients to tell me about their fears or concerns. We discuss these, and I share some information about the progression of their disease and answer any other questions. Then we get to one of the best parts of working with clients—I ask them to share about their life: relationships, children, their type of work, and many other questions.

Following this, I ask them what they understand about their illness and then focus on what is important for them in their life. Sometimes it is hard for them to start talking about their impending death. I use my notes to help identify themes that are important to them.  

We discuss what they want to happen at the end of life: who they want to be present, what they want the setting to be like, aspects to include in their vigil, any things they want to avoid occurring, any music they want played, and a discussion of their funeral plans. This process can occur in one visit or over several visits, depending on how the client is processing the information.

Lastly, if patients want to continue with my services, I ask them to sign a release so that I can talk with their physicians. I provide information about their disease process, advance directives, DNR/AND, as well as the dying process.

 

Can you share a short anecdote or insight that changed you?

At 16 I was already focused on a career in nursing. My great grandma Flo was dying in the hospital, and my family, who had been sitting vigil, decided to go to get something to eat. I planned to sit with her so she would not be alone. I soon noticed her heart rate slowing, and her breath changed. During this time I was able to hold her hand and tell her everything would be OK, and that our family will miss her. I also told her she raised us well and we would be fine. Then her heart stopped. This was the first death I had the honor of attending. Later the nurse asked how I knew what to say, being so young, and I shared that the words had just come to me.

The following death that I had the privilege to be present for was a patient dying of AIDS. I was volunteering at a local hospital in the emergency room. I was taking unwashed laundry and trash to a dirty utility room. I found the patient alone on a gurney in the hallway.

I was 32 years old when my mother died at the age of 53. As one of six children, I have two younger brothers, who we included in all the conversations and decision-making around her death. My brother who was 12 at the time stated he did not want her to die in the hospital. I talked with the doctor to see about getting her transferred to my home. She had been placed on hospice, and I acquired the legal order to extubate at home. I also lined up a physician on standby if I needed help. 

While we waited for the paperwork to be completed, I started giving my siblings tasks to complete. I told my husband to go home and start cooking something to feed everyone (because my mother always fed everyone). I assigned my older brother the task of getting her comfort medication, another brother to go to the house to get her red hat, and my sister was assigned to go find a new purple nightgown. I am blessed to have two aunts who were nurses, and with their assistance we were able to give her a final bath and polish her fingernails. Once everything was in place, I called my friend Mary and explained my plan to take my mom home to my house to die.

We then moved my mother into comfort care at home with a medical support team of my colleagues. I rode home in the ambulance with my mother. When we pulled into my driveway, it was lined with tiki torches. We walked into my house, where I was greeted by several of my friends (nurses, social workers, and a chaplain). The smell of food was in the air, and my parents’ favorite song was playing in the background. They informed me that my job was to be her son and not her nurse. Once we got her into the bed, we were told to step out of the room while they got her comfortable. 

As they were doing that, we were in the kitchen making plates of food for the EMS. My mother would have been mad if she knew we did not offer them something to eat and drink. Once they had gotten her arranged in bed, the breathing tube was removed and my five siblings and our father sat on the bed holding her hands and talking to her. She took two breaths, and then she was gone. It was such a blessing for my family to have her surrounded with so much love. I was lucky to have been able to do this for my mother and wanted to help others have other positive experiences around the death of their loved ones.

 

Who has been one of your teachers or mentors?

I have been lucky to have a few wonderful mentors, but the three who come to mind are Paul Tschudi, my master’s program advisor and subsequently good friend. Also Dr. Jesse Roberts, who was a fantastic oncologist turned palliative care physician, and Dr. Maureen Dudgeon, a hospice and palliative care physician. These people taught me so much about living—that dying became natural and held nothing to fear. I learned from them to take care of the family group (family is whoever the client tells you they are). They also taught me compassion, empathy, physical care, and spiritual guidance. I have also always held on to a phrase my mother taught me about unconditional love: “It is just as easy to love someone as to hate them. Hate puts more stress on you.”

What do you wish you had known when you started as a doula?

To listen, be present in the moment, leave all distractions behind (leave your phone in your car), and lastly learn to be comfortable with pauses in the conversations. Every second does not need to be used for talking. Allow the client and family to grieve on their own terms. I always say all emotions are valid, with the exception of hurting yourself or hurting others.

 

Do you have any words of encouragement for fellow doulas?

Do everything with love. Allow the client and family to have a safe place and person to depend on. If you are asked a question you don’t know the answer to, be honest and let them know you are not sure of the correct answer, but that you will try to find an answer from the tribe of people who support you. Love what you do and be proud. Not everyone is going to understand your journey, and that is OK—it’s yours, not theirs.

 

What is your dream for your practice or doulas in general?

I would like doulas to be a natural part of end-of-life care. Being able to care for the vulnerable and provide them with the same quality of care. Love what you do. Everyone deserves the best version of you. Go with love.

 

Contact Brian:

Web: Serene Passages \\ Email: [email protected]