Diverging a bit from the Hospice theme, in episode 44, Mitch explores another form of end-of-life care and the role of a "Death Doula". He explains the origins of a doula role in relationship to the dying process, and the recent resurgence of this in modern end-of-life care.
"We see women in many cultures taking the lead on preparing both the expectant mother for birth as well as the dying and dead for their final journey. The word ‘Doula’ not only meant ‘Slave’ but also women that serve. All right, so what does that mean to you and I? To many, the concept of death doula seems like a new or progressive idea, but the role is really is old as death itself. "
Transcript:
Hello!! And welcome to Living With Hospice. My name is Mitch Ware. Please come on in, grab some coffee and sit down anywhere you'd like. Today we're going to discuss what a ‘Doula’ is, and well what they do. We are going to give you some information so that you can decide if a Doula is a good fit for you and your family on an end-of-life journey.
I've been aware of midwives for as far back as I can remember. In fact, a good family friend back home was a midwife. Recently, well in the last 10 years or so, I became aware of ‘Birth Doulas’, but not so much ‘Death Doulas’, not until just a few years ago. Doulas are people like you and I who help others navigate some of life's biggest transitions. Some doulas provide support and care to women bringing babies into the world, while others help individuals deal with a difficult and … well … the emotional passing of a loved one. These people are known as Death Doulas, or end of life Doulas. There seems to be more awareness about Doulas these days. In fact, there is more chatter about Death Doulas in the end-of-life forums on social media in general than I've seen in a very, very long time.
So, what exactly is a Death Doula? If you Google the term Death Doula, you'll get a result that reads something like a death midwife or a death doula is a person who assists in the dying process much like a midwife or birth doula would do with the birthing process. It's often a community-based role, aimed at helping families cope with death through recognizing it as a natural part of life.
A friend of mine who is a doula explains the origins like this. The word ‘Doula’ originates from the Greek word ‘slave’, and was coined in 1976 by Dana Raphael to describe an experienced woman who, after birth, assisted the mother with issues and challenges like breastfeeding her baby. In ancient Greece, the realm of mourning belonged to women. Their role in remembering the dead granted them their only position of power in that society where they possessed really no autonomy. Yet, this power was also believed to supersede mortal constraints, giving women the ability to do something that men could not. First, they cleansed the body of the deceased and they anointed the body. They decorated it with aromatic Garland's and in contrast, the men kept their distance. This was an effort to salute the dead, physically signifying their separation from the realm that belonged to women.
We see women in many cultures taking the lead on preparing both the expectant mother for birth as well as the dying and dead for their final journey. The word ‘Doula’ not only meant ‘Slave’ but also women that serve. All right, so what does that mean to you and I? Too many, the concept of death doula seems like a new or progressive idea. But the role is really is old as death itself.
The role of a ‘Death Doula’ has been around forever in many cultures. And especially if you if you go back and look throughout history; mental, spiritual, physical and emotional support have been a fundamental part of the transition or preparation for death since the beginning of mankind. In some cultures, the medicine man or medicine woman, sometimes called a shaman, or shamancas, (which is the female version of that) would fill that role. This group of people were known by many names such as Invokers, healers even herbalist. Some see themselves and are called oracles or diviners or spiritual leaders, spiritual dancers, shapeshifters, shamanic journeyers. And of course, some were called priests and priestesses of the ancestors.
These people were once apprentices under someone else. And they served in the role of apprentice with a medicine person or a divine healer, or a shaman until that person stepped down or passed away, and then the apprentice would take over the lead role.
Today, such Patient and Family Support is less common than back in those days although many of us in hospice and end of life care are trying to get the word out that there IS support for everyone. Let me say that again. There IS support for terminally ill persons and their families, especially in western societies where we tend to totally avoid discussions about death.
Unlike here, in many cultures’ death is not something that shunned, it's not something that is unspoken about or feared. But in our culture for some reason, nobody wants to talk about it. I did an official survey back a while ago among patient families and friends. Most people say that talking with their loved ones about the end-of-life journey is pretty important… however, only a handful actually have, not until a terminal prognosis was given. And then there's this panic conversation that takes place. My family was guilty of this like millions of other families. I guess in our Western culture, we just don't like to talk about anything related with death, or dying, let alone death itself. Even words like cancer or heart disease or casket, or hospice are fear triggers in most people. This fear of death is so common that we did an episode about it here on Living With Hospice, I think it's episode number 31. It is titled facing our fear of death. Check it out and see for yourself how we can manage this fear.
I just happen to know several Death Doulas. I asked what services do you provide for your patients? The answers really varied from doula to doula and they're very quick to tell you that each Doula is unique. One doula who is a fairly new friend of mine shared with me that she is a one stop shopping doula … meaning she will help ‘as needed’ to take stress off a family. She'll do shopping, she used to even drop off dry cleaning. And of course, she's there to help keep her client and their family comfortable. And by that, I mean, she engages the client, by speaking with them, listening to them, connecting with them, even touching their hands and arms, engaging them by reading to them, singing to them, massaging their sore feet or legs, and cleaning them up.
She also shares with family what they can expect when transition comes. The family is comforted knowing what to expect (no surprises). The patient is also comforted. And she's not only there when the patient passes away, she was there after, to help clean up the deceased before the funeral home arrived. She told me that with some clients, she even helped with making final arrangements with the funeral home. She's is a gem, but very rare in the world of Doulas. She's a one of a kind with her one stop shopping approach to being a Doula.
Now, the other extreme are doulas that visit with the patient and the family. They come maybe once a week or every 10 days for a visit. They answer any questions that the family or patient might have and then are present when the patient transitions and passes away. Most doulas are somewhere in between. By the way, most Doulas charge an hourly rate anywhere from $25 an hour to $150 an hour. However, there are many Doulas that volunteer their services.
Now, part of deciding to go with a Doula is deciding are these doulas worth that kind of money if you're paying them by the hour? While some doulas can be quite expensive, not all are. And, according to my friends who are Doulas they claim that they are worth every penny. One in particular went on to point out that depending on which Doula you hire, that Doula will be by your side when you need them (or on the other end of a phone for you) so you'll be able to make better and more informed decisions … minimizing the stress that comes along with this end-of-life journey and transition.
When shopping for a doula you'll see that a few are ‘certified’ probably by an online, private institution. There is no federally mandated certification to become an end-of-life Doula. However, there are many private organizations, like I said, that will offer education, continuing education and certification programs. Now, if it were me, I would want and recommend that I found a doula that was certified and had been vetted, had been background checked and passed, and make sure that I hire one that has had to take end of life training classes. Maybe they've had some volunteer experience at a Hospice and maybe even become a member of the National end of life Alliance, the National End of Life Doula Alliance (NEDA) or I would want to hire someone who has been doing this a very, very long time, and has equivalent experience to all of that. Even still, I would check the references. I would check with the Better Business Bureau especially if I'm paying this person. Now let me be very clear, the skills for an end of life doula are learned hands on, and in some cases handed down from generation to generation to generation to generation. Now, you may be wondering, okay, Mitch, you know, that's all great. But now I'm confused. So what is the difference between Hospice care and death Doulas care, especially your friend, that is one stop shopping? Okay, the biggest difference is that death Doulas do not provide hands on medical care. They cannot do that because that would be construed as practicing medicine without a license. 99% of all Doulas do not have the resources that hospice agencies have and probably 98% Don't offer the one stop shopping, like my friend does. I mean, they just aren't going to provide all of those value-added services that she does. But in many cases, your local Hospice does.
We are beginning to see will a nice blend in some areas of the country where death Doulas are actually working in conjunction with or partnering with Hospice programs to provide more interpersonal, social, logistical, spiritual guidance that complements the care they receive from their Hospice agency. A true partnership in end of life care.
Now, as you know (and just to be clear), Hospice care is very closely regulated by federal rules and laws, and really specifically by Medicare. That's because Hospice Agencies practice medicine. Hospice staff not only administers drugs but performs diagnoses determinations and all that goes with that. Doulas are not regulated by the government, as they're non-medical. Be sure, they still try to comfort the patient and whatnot, but they don't deal with medicine with drugs, diagnosis and the like. So those rules that Hospice agencies have to comply with don't apply to Doulas. The National Hospice and Palliative Care Organization, CEO has just put together what I think is a very workable end of life Doula counsel to share with Hospice agencies and families (and Doulas) the ways in which end of life Doulas can assist Hospice agencies in their work. This is really important to folks out in rural areas where there is no hospice. The NHPCO is encouraging Hospice agencies to hire Doulas to complete the Hospice team and fill in those gaps in care and in allowing for the best end of life experience in areas where hospice agencies are very rural and have very minimal resources, especially in the pool of volunteers.
The challenge here is to find a Doula that will actually perform all of these different tasks and work with Hospice that provides all the resources that the Doulas do not.
By the way, the biggest function of Doulas is ‘vigil presence’. They're there for actively dying patients. In Hospice care, especially the ‘in-home care, that's not always possible.
But most hospice agencies have a trained group of volunteers who are part of what's called an 11th hour group. Their sole purpose is to sit vigil with those who do not have anyone else to be with them, no family, no friends in the area. The 11th hour team are available to be with them as a transition. Then they help with calling the Hospice Nurse, getting a declaration of death etc.
From what I've observed death Doulas are here to serve humanity. Just like the hospice team members do. Regardless of age young, elderly, the terminally ill caregivers regardless of race, religion, sexual preference, financial standing end of life Doulas complement the care from hospices and hospitals and doctors filling in the those gaps that may occur during an end of life journey in the act of dying process all the way to preparing the body to be removed by a funeral home or corner. Remember, every doula is different. If you don't get anything else out of this episode, hear this: Doulas are independent contractors. Some charge some charge a little, some charge a lot. Some are volunteers. Some are new. Some have been doing it for half a lifetime. Some assist with anything you asked them to do, like shopping and preparing meals and well, spiritual guidance, transition preparation, holding vigil during transition being there after the fact and others only assist with the actual vigil itself and transition. This is why it's best to interview Doulas. Find out what their specialty is find out what they're willing to commit to find out if they're going to charge you. Again, each doula has their own specialty and their own preferences of what they can and will do for you and your family. So it's really important to do your due-diligence when hiring a Doula.
The world and society is ever changing as it views birth and death. Especially death. Families are bringing new and different values, new lists of preferences when it comes to an end-of-life experience, end of life care is changing too. By the way, we used to have funerals, they were traditional. They were held in a church or funeral home. And there was a specific ‘order service’ that you could predict. You knew what was going to happen and when and so forth. But as Bob Dylan wrote back in the 60s, the times they are a changing. That is so true today. And it's especially true in end-of-life experiences and expectations. The world and society just continues to evolve. End of life care is changing as a result … from traditional, you know … go to the hospital, or sit in a nursing home and die … to more of a palliative approach to care. Focusing on patient comfort, focusing on not necessarily being in a hospital or an inpatient facility but being home in familiar comfortable surroundings and being comforted by trained people that know what they're doing. Many people are now more receptive than ever to utilize the help of an end-of-life service. Whether it's a Hospice agency or a Doula or some other person that is experienced. In our society, you still have this fear of of death and the end of life experience … and the caregiving and so forth. But we as a society are making progress,
So how do you find a death doula? Check out the local death, doulas in your area simply by googling the words death doula. If there's one in your area, they will show up in your search. Most all of these death Doulas have a Facebook page or a website that will be caught by the Internet search engines. Most will offer a free consultation to help families navigate this part of the journey. You can also browse through the National end of life Doulas Alliance that's through their directory to find an end-of-life Doula in your area.
As mentioned before Doulas focus on non-medical comfort for their clients. Hospices, carefully regulated everyone that is affiliated with a hospice has been carefully vetted. There are FBI background checks, we've been fingerprinted. We've been TB tests. We've been vaccinated for COVID over and over and over again, and extensively trained to be the best that we can be at what we do. We all stay in our lane, but we all work together as a team. Finally, if you're considering using a death doula, make sure you ask, what their fees are, expect them to run somewhere from 25 to 150 bucks an hour and I assume in more affluent areas, these fees may be higher. The good news is that many Doulas are volunteers and don't charge. But if a Doula you select does charge a fee, ask your insurance company if those fees could be at least in part covered as Medicare's not going to cover those expenses. Maybe someday they will. But for right now, to my understanding they do not. Don’t forget to get references from the Doula. Call those references or text them or email them. Find out this particular Doula strengths and weaknesses, find out how often they're available. Find out if these other patients’ families were happy with them or clients, families, I guess I should say, check to see if they're certified by a Doula organization that trains and certifies people to be a death or end of life doula and as I said before, many good Doulas aren't necessarily certified, but they have a ton of experience and they also have a ton of excellent references that are readily available to you. Ask if the Doula is New Age or a spiritual guide, because in an end of life situation, a lot of us become spiritual or we begin to think about the next life and our place in it. So, if you're not in line with the Doulas perspective on end of life and the next life, you may discover that you're not a good fit for one another. Now, some people prefer that type of spiritual guide that is nontraditional, whereas others really do prefer someone more traditional. Ask what services the Doula will provide like; daily visits, is there transition planning for the family? This means sitting down and explaining it layman's terms, what's going to happen? How it happens, why it happens with your loved one and what you can expect. Some Doulas will offer massages or reiki. And like my friend, a very very few will even run errands for you. Ask a second time. How often will they come and visit? Make sure you find out for sure that you have the correct expectations. Are they going to come 24/7 If needed, ask if they're charging, a nighttime fee or weekend or holiday fee. Find out if those fees are negotiable.
As we wrap up, Doulas have always played an important role in society. Just look in history, they're there all the time. They're not called Doulas necessarily, but they are end of life facilitators … and there is still a place for them.
Now, for more information about the availability of Doulas in your area, simply Google death Doulas and go from there.
As always, I want to thank you for spending your time with us today. If you've enjoyed this episode of Living With Hospice, and if you've learned something about Doulas, please share it with others.
For other episodes on a myriad of topics all related to end-of-life care, please check out our website at www.livingwithhospice.info. And please take a moment to let us know how we're doing.
Until next time, this is your host Mitch Ware for Living With Hospice, have a blessed day.