What is a “Death Doula?” Ask Suncoast Resident Judy Braham
Q. What inspired you to become a Death Doula, and how did you get started in this field?
A. In early 2021, I read an online news headline that Elvis Presley’s granddaughter, Riley Keough, had become a “death doula.” I had never heard of this term, and thinking it was quite morbid, I was enticed to click on the link and read the article – lol. When I did, I learned more about what an End-of-Life Doula (the official term) does, and I immediately realized this was something I was meant to do.
Q. Can you describe the services you provide as a Death Doula and how they differ from traditional end-of-life care?
A. When most people think of end-of-life care, they think of hospitals, hospice, medical care, and palliative care. Death Doulas are non-medical. We are not a replacement for any of the other end-of-life care an individual may need or is receiving – we are an added member of the “team.”
Services we provide are unique to each individual but can include:
- Advance care planning
- Life review/legacy projects
- Respite care
- Bereavement support
- Vigil planning
- Living funerals
- Connect with resources in the community
Q. How do you approach helping individuals and families navigate the emotional aspects of death and dying?
A. Two of the most important qualities of a good doula – IMO – are:
1. A good listener. We do not go in with an agenda of our own; we are not therapists/counselors – we ARE great listeners. Many people who are dying and their loved ones WANT to talk about their fears surrounding the impending death, but they don’t want to bother each other. Death doulas have no qualms with talking about death and dying, and we give those individuals the opportunity to say things they need to say with a safe person.
2. Holding space. Just being present – fully present – for the dying and their families is huge. Letting the individual guide and direct us as to what their needs are. Helping them to reach that place of acceptance. Giving them back a sense of control by encouraging them to participate in the planning of their final days.
Q. What training and certifications have you obtained in your role as a Death Doula?
A. I am a Certified CareDoula®. Additionally, I am a Licensed Massage Therapist, a Leve II Reiki Practitioner, a Certified Sound Healing Practitioner, and an Ordained Minister.
Q. Can you share an example of a particularly challenging or rewarding experience you’ve had as a Death Doula?
A. I helped one woman write her “story.” She wanted to leave a written account of her life. I recorded her on my iPad while simultaneously transcribing what she was saying into my laptop. I would then review the recording at home to correct mistakes, etc. I would return on the next visit with what I had transcribed on paper, and she would approve it, and we would continue.
There was an incident during this time in which her daughter became upset hearing her mother bragging about her nieces and nephews, who she said had all become Naval officers. The daughter felt slighted, stating that her own children/grandchildren were very accomplished, and asked why her mother spent so much time bragging about the nieces and nephews. I sat quietly and let them work it out.
After the woman had died, I forwarded all the recordings and typed transcripts to her daughter. She contacted me to express some embarrassment over their “argument” in my presence, but she told me that after I left that day, she was able to discuss this with her mother as it had happened before, and it really bothered her. They resolved it, and now that her mother was deceased, she felt a sense of closure that this issue was dealt with. That was a great feeling for me – having been a part of that.
Q. How do you tailor your services to meet the unique needs and beliefs of each client and their family?
A. The dying person is our first priority. As we get to know them and their wishes, we strive to honor those wishes. We do not have our own agenda – it’s all about giving a voice to the dying person – to help them determine what they want based on where they are in their grieving process and their own beliefs.
Q. What is your philosophy on the importance of open and honest communication about end-of-life choices?
A. I think it’s very important. We are trained to meet each client wherever they are in their grieving process. Many people – or their families – are not yet at the point of acknowledging or accepting that they are dying. That’s okay. We will serve as companions and support for caregivers. However, I have found that at some point, they will “let it slip” that they know they are dying. This is when I “listen” – letting them reach this level of acceptance on their own and being the person to whom they can express their feelings and fears.
I have had some referrals from hospice in which I have been told that the family does not want me to wear my hospice badge, not mention hospice, not say I am an end-of-life doula – I’m supposed to say I’m a “friend of the family.” For me personally, I feel this is disingenuous. Many doulas will take on these types of patients, which is perfectly okay, but I don’t feel it’s where my strengths lie. I feel I connect better with those who may not necessarily be at the point of acknowledgment and acceptance but with whom I can at least be honest about who I am and why I’m there.
Q. How do you assist clients in creating advance directives and making decisions about their end-of-life care preferences?
A. Anyone can complete advance directives forms – it is not necessary to have an attorney. So, I will ask if someone has completed these forms and if not, I will offer to print them out, read through them, and help them complete them per their wishes, if this is what they would like. Also, someone may have completed the forms already, but it was several years ago, and their feelings about what they want may have changed, so I would also inquire with those individuals if they would like to review their documents and see if they are still okay with their choices.
Often times, too, when someone is dying, they can feel a great loss of control. It can help give them back a sense of control by having them participate in their own vigil planning, Asking them probing questions like if you could choose music to listen to when you’re dying – what would it be? Are there any special poems or readings you would like recited? Ideally, who would you like to have there at the end, holding your hand?
Having them think about these things and help “plan” their final moments – then getting their family on board with honoring these wishes. It’s a gift to all when these things can be openly discussed and shared.
Q. Can you explain the role of a Death Doula in helping clients cope with physical pain and discomfort during the dying process?
A. Since we are non-medical, we cannot prescribe or advise on medication. However, we CAN and DO highly recommend that individuals contact either hospice or a palliative care specialist. Hospice is a phenomenal resource for those with terminal diagnoses who have been given 6 months or less. They are experts in palliative care. Many doctors are trained to “cure” people and will offer and suggest continuing treatment options – many of which can rob people of quality time that they have left to spend with their family. I saw this personally with my sister-in-law.
Hospice is extremely adept at managing pain along with other symptoms and can give people the opportunity to spend their last days in a very comfortable environment and have quality time with their loved ones. They have even been known to “discharge” patients from hospice because they are doing so well! This does not mean they cure them, it just means they no longer meet the 6 months or less diagnoses, but can return to hospice when recommended by their physician.
Q. How do you support grieving family members and loved ones before and after the death of a client?
A. We serve as deep listeners, companions, witnesses, and advocates for the dying. We offer support to stressed and overwhelmed caregivers. We offer respite to caregivers – sitting with them dying so the caregiver can get a much-needed break – take a shower, attend to a personal appointment they’ve been putting off, get their haircut, take a walk on the beach – whatever they see fit to do for themselves.
We seek to discover the dying person’s final wishes and help the family to achieve them. We suggest and participate in rituals to help both the dying and family achieve a sense of closure, things such as suggesting living funerals, memorial services, special readings, or music, etc.
Q. Do you work in conjunction with medical professionals, and how do you collaborate with them in the care of your clients?
A. We work alongside hospice, families, and medical professionals as an added team member. We do not replace anyone. We are often available on short notice which gives us the ability to be of great support to families during times of high stress or active dying.
Tidewell Hospice is an example of one hospice in the area that utilizes end-of-life doulas; they even offer their own mini-training program for anyone interested in pursuing this work.
Q. How do you address cultural and spiritual considerations when providing end-of-life care?
A. I do not bring my own belief system into the setting unless I am asked directly. During my first visit with a client, I will ask them to share with me any cultural, religious, or spiritual beliefs they have and ask how I can help them honor those. If it is something I am unfamiliar with, I ask probing questions and they are more than happy to “educate” me – lol. It’s all about what the dying person wants – not what I think they should have or do.
Q. What resources and tools do you offer to clients and their families to help them navigate the practical aspects of end-of-life planning?
A. By working closely with other related professionals and developing a vetted resource list. We can refer individuals who may need to speak to an estate attorney, a funeral director, clergy/spiritual leader, etc.
I am currently involved with a group of local doulas who are forming our own “collective” – Sarasota Area End-of-Life Doula Collective. We have teamed up with other senior service providers and are offering “lunch ‘n learns” where we all talk for a few minutes about the services we provide. We will be speaking at Parkinson’s Place in January and a few more locations in the coming months. We are looking for any groups, organizations, communities, etc., who would like to hear more about end-of-life planning as well as how an end-of-life doula can be of benefit. We offer these presentations at no charge. Anyone interested can feel free to reach out to me at ConsciousDyingDoula17@gmail.com.
Q. Can you describe any rituals or ceremonies you facilitate to honor and celebrate a person’s life before and after their passing?
A. Rituals can be anything that makes the family remember and honor their loved one – examples are family gathering and reading spiritual passages or poems, playing music the dying would like to hear, telling favorite stories, etc. A ritual the dying person may wish to complete while still able could be writing letters to their loved ones to be read on special days like weddings, graduations, birthdays, etc.
When my own mother was dying while on hospice, a hospice nurse entered the room and asked if there was anything she could do for us. My mother was very near death – had the “death rattle” breathing you often hear about – and all I could think of was that I wanted the nurse to stop her from dying. But, the smart aleck in me replied, “Well, can you sing?” To this day, I have no idea where that question came from. Lol. The nurse replied, “I’m no Aretha Franklin, but I can carry a tune. What would you like me to sing?” My 20-year-old daughter responded, “Amazing Grace is Grandma’s favorite song”. The nurse began to sing Amazing Grace – with no music – and she knew every word. She had the most angelic, beautiful voice. My mother, who was holding my hand with one of hers and my daughter’s hand in the other, became very still – peaceful. Her hands folded around ours. Not one minute after that nurse finished singing, my Mother died. It was the most beautiful thing I have ever witnessed or participated in. It was an honor I cannot describe. For us, that was a ritual that brought us so much peace and closure.
Years later, I also had the honor of being present when my ex-husband, my youngest daughter’s father, died while on hospice. I was able to be there to support her as she was losing her father. Again, it was a very peaceful, serene, and beautiful moment. Another honor to be present for both him and her.
Q. How do you maintain emotional resilience and self-care while working in such an emotionally challenging field?
A. I work part-time in a metaphysical store where I am surrounded by crystals. I have a rather large collection of my own crystals at home now, too, and I wear crystal jewelry daily. Before visiting a dying person, I take a moment to “ground myself” – I tell myself I am leaving my own worries and problems behind. I am entering the dying person’s space fully free and clear of “mind clutter” and with no agenda other than to serve them. When I leave them, I again take a moment to “reground” myself – leaving behind what energy is theirs – I do not take it home with me.
When I have been told that someone I have visited with has died, I feel a great sense of peace – for them. To know that someone is no longer suffering.
Q. How do you stay up-to-date with best practices and new developments in end-of-life care and support?
A. The program that I graduated from came with lifetime continuing education and coaching. They offer monthly Zoom meetings where we are able to brainstorm and consult with other doulas. The Zoom meetings also often have a guest speaker who will educate us on various topics such as green burials, the importance of self-care, rituals, MAID, working with LGBTQ+ community members, etc. I also am accruing a mini-library of death and dying related books that I read, podcasts that I listen to, etc. And I continue to take online classes in modalities I can offer to the dying and their families to support them such as becoming a Certified Crystal Healer, which I am currently studying. It’s not that the crystals will “heal” the dying individual, but crystals have properties that can help alleviate stress, emotions, fear, etc.
Q. Can you share some strategies you use to build trust and rapport with clients and their families?
A. When I first meet with someone, one of the first questions I will ask them is where they see themselves in 3 months. If they tell me they want to be back at their favorite hobby of skiing, then I know they are not at the point of acceptance/acknowledgment that they are dying. I will then ask them what I can do to help them achieve their goal. We go from there.
If they look at me like I’ve lost my mind and say they’ll be lucky to still be alive next week – they’re dying after all – then great – the elephant is in the room and now we can acknowledge and discuss it.
I fully listen, make no judgments, and honor their wishes. I maintain confidentiality, only sharing information with their families after getting their permission.
Q. How do you address any ethical dilemmas that may arise in your work as a Death Doula?
A. I have not had this yet. Basically, when I’m working with a client through hospice, I would never tell that person that I’m available for hire or that they can call me whenever they want. As a hospice volunteer, I am limited in what I can do, and anything that falls outside I refer back to my hospice coordinator.
Q. What advice do you have for individuals or families who are considering the services of a Death Doula for their loved ones?
A. If anyone is considering a doula, I would urge them to reach out to me or another doula they may have heard about and meet with them/talk with them. Explore if it’s right for you and your situation. Ask about the doula’s training – are they certified? How long have they been practicing? Ask for references. But mainly, go with your gut. If you have a good rapport and a good feeling about them, go for it. Not everyone is comfortable around the subjects of death and dying – doulas can help bridge that gap and bring families together to discuss important topics that can result in peace and closure for all involved.
Q. In your opinion, what is the most important aspect of your role as a Death Doula, and how do you ensure you fulfill it in every case?
A. Listening. Really listening. If you’re thinking in your head about the next thing to say or how you can solve someone’s problem – you’re not really listening, and you’re going to miss important things. We are not there to fix anything. We are there to help manage, guide and LISTEN.
I once met with a woman who was dying and her husband. She was in a nursing facility and he could only visit a few hours a day because he was still employed. She wanted to talk about her anxiety about dying. He stated that when he wasn’t there, she became very anxious and was constantly calling him and ringing the bell for the nursing staff. I asked her why she became so anxious when he wasn’t with her. She told me that her and her husband had made a pact – that if one of them was dying, the other would be there to hold their hand. She was worried she would die when he wasn’t there. He looked at her incredulously, and I asked her if she was worried he would be mad at her. She stated she was because she had made a pact with him. He immediately reassured her that while he most certainly wanted to be there if he could, he would absolutely NOT be mad at her if it didn’t work out that way. He reassured her he loved her and only wanted her to be at peace and free from her suffering. Her outlook completely changed – visibly you could see she was relieved. A few days later, I visited her again, and she was so much calmer. I spoke with her husband on the phone and he told me how her anxiety had gotten much better. She died a few days later, early in the morning – he was not with her. I like to think by “listening” to her – allowing her to express her anxiety, I helped facilitate that conversation between them and that perhaps she felt he had given her “permission,” and she was able to let go.
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