Danielle Peterson, Clearity’s Director of Education, talks with End-of-Life Doula, Vanessa Johnson, about planning for end-of-life, considerations for a ‘good death,’ and how she compassionately meets individuals and families at the end of life.
Danielle: Vanessa Johnston, thank you so much for meeting with me and being willing to share your expertise as an end-of-life doula with the Clearity community. You are someone who has been in the business for a while and you have some excellent experiences that you can share with us to help us talk about a sensitive but important topic. Just as a brief introduction, you are the co-founder and vice president of Colorado End-of-Life Collaborative and also the owner of Denver EOL Doula.
Let’s start by having you explain what an end-of-life doula is, or sometimes they are referred to as a death doula. What are they and how do they help?
Vanessa: Sure, absolutely, and thank you for having me. I appreciate this opportunity to talk about my passion. We can start with the word, doula. Most people are not familiar with it. It comes from the ancient Greek, and it just means, “a caregiver.” In the early 80s, we saw the word being used in the context of birth doulas which are people who help somebody who is having a baby. So, it is the same concept at the other end of life. An end-of-life doula, or a death doula, is a non-medical person who offers emotional, spiritual, and informational support for those at the end of life and their loved ones. We can help people understand the roadmap of the death and dying process, in terms of where they are, and what is happening to them, and can connect them to whatever resources they might need.
Danielle: That is wonderful. You know, our Clearity community is a group of people who have thought about death. We know that after a doctor says, “You have cancer,” the next thing that pops into that person’s mind is, “Am I going to die?” Or “When am I going to die?” It can feel very daunting, and very scary to hear the diagnosis. As time goes on and the treatment starts, there are options and there is hope. But that lingering thought of, “Is this going to come back?” Or “What is this going to mean for me down the road?” tends to stick for people with ovarian cancer and their loved ones. Eventually, people get to the stage where it is more obvious that the end of life is around the corner. That conversation is typically initiated by physicians, but sometimes people just know their bodies and they get an intuition, a sense of what is what is happening to them.
I have been thinking a lot about what it means to plan for the end of life. You likened an end-of-life doula to a birth doula. A birth doula can help someone plan for their labor. Sometimes people even ask, “Do you have a birth plan?” In that same vein, how do people plan for the end of their life? When do they do that and what does it look like?
Vanessa: What is surprising is that most people do not plan at all for this thing that is going to happen to 100% of us. There are a lot of reasons for this including that we live in a death-phobic culture, and death can be very scary to think about, let alone talk about. But I believe that if you prepare for something that is 100% going to happen for you, you will attain a better sense of comfort and more peace with it. I encourage people to fight off disease as long as they can, and that is what our medical care system is designed to do. But as you mentioned, sometimes people get to the point where that is no longer working, and as human, mortal beings, there comes a time when nothing we do is going to help us with that because we have a finite lifespan. There is sadness and loss around that but there can also be love and meaning.
And so how do we shift to more of that focus? What I found is that if you plan, you can have more love and meaning at the end. A lot of times people do not understand what it means to have a ‘good death.’ And so, I ask people, “What is the ideal? If this thing (death) is eventually going to happen, are there some things that you can make choices about that will make it more peaceful for you.?” You know, a lot of times people say, “I do not want to be a burden on my family.” But what they do not understand is by not planning ahead, they create a burden for the family. And so, if you can make more choices ahead of time that are in line with what you believe and what you want, then that will be less of a burden for your loved ones who are grieving. Your loved ones will be experiencing either anticipatory grief, knowing that you are going to be leaving them or, you know, just really confused by all the things that are going on. So, I encourage people to make decisions before the need is urgent.
It seems like people think death is contagious. Like the thought, “If I talk about it, I will get it” or something. But it does not work that way. I always encourage people, before the need is urgent and before your loved ones are experiencing anticipatory grief, to make some decisions. Whether it is advance care planning or final disposition choices, these are the gifts that you can leave for your loved ones.
Danielle: I am glad you brought up that phrase, a ‘good death.’ I know for me, at first, I thought, “Is this an oxymoron?” “Whoever thinks of the word ‘good’ when they think of death?” But we have such a rich opportunity to think about our values, preferences, and our wishes. It is helpful to hear you ask, “What it would mean to have an ideal scenario?” I am sure it can be a bit of a stretch for people to even go there in their minds and start visualizing and thinking about their death. I imagine as someone in your role, you talk to a spectrum of folks who are very eager, maybe even excited to talk about their ideas, and maybe those who are quite reluctant and fearful of the unknown.
How do you work with the folks who tend to be on the end of the spectrum of being quite reluctant or fearful about talking about their death?
Vanessa: Well, my first client said, “There is no such thing as a good death. What are you talking about?” So, I tried to explain that what I meant was a better death – because there are choices we can make now. I think it is important to say that my services are not available for people who die suddenly. This can change the perspective from, “This is something I have to do” to “This is something I get to do.” I do not blame people for being nervous, anxious, or fearful because that is what our culture tells us to be, especially in America.
I mean, we are kind of the worst at dealing with death and dying, you know. We have really outsourced it to hospitals and doctors. But again, they are trying to keep us alive. Oftentimes this is when we look into palliative care and hospice care. But somebody that that is really frightened, you know, we take it very slowly and we take it step by step. I say those things that I mentioned earlier: let us plan when the need is not urgent. Let us take care of this so it is not a burden for your loved ones.
Our human brains are not equipped to think of a future time when they will not exist, so just neurologically it is hard for people. While understanding all of that, my job as a death doula is really to shift the perspective from less fear and anxiety to more love and meaning. So, when I talk about a ‘better death’ or a ‘good death,’ what I am trying to do is help people make decisions ahead of time that will lead to a more peaceful environment and a more peaceful transition for the inevitable that will happen.
Danielle: I am hearing you say this is all about love, meaning, and offering a gift to your family. And that this is the opportunity that we can be invited into if we want to think about and plan for our death.
In your experience, what have been some unexpected benefits that you have seen people get from thinking about the end of life that you have been able to witness?
Vanessa: Most people who do this work ahead of time really feel relief, you know, because it is something that is built up in our culture to be this horrible thing. Yet, when people do tackle it and talk about what it means to be a mortal human being, there is a sense of relief that comes from doing hard work. You do have to be brave, and you do have to be courageous. What I provide is a compassionate companion to have those difficult conversations and facilitate that for people and hold space for that, those hard feelings. But what comes, as a result, is that people often feel relieved, and they feel proud of themselves because they have done hard work and have been courageous. They have the peace that comes from feeling prepared. Whether people are healthy and doing advance care planning, or if they are further along in their disease process and articulating what their wishes are, it is a sense of peace that people feel after they do this work.
You have brought up loved ones and caregivers. What has been your experience working with them, and how do you help them?
Vanessa: It depends. Since I offer emotional, spiritual, and informational support, if a caregiver has family and loved ones locally and robust support in the community, they may not need me as much. Maybe they have a great church community or a therapist. In those cases, I can help with advance care planning and the medical and legal documents that are needed. But as their loved one’s death gets closer, or we go through the dying process, then the needs may change.
My job is to come in and assess who is in the most need. Generally, it is the person who has the life-limiting diagnosis, the person who is dying. They are always going to be my top priority. Then after that, I look to see who in the network of people needs help and figure out the kind of support they need. Is it emotional, is it spiritual, or do they just need to know what their resources are? It looks different for every single family because every single situation is different, and every person is different. Also, I may not be the best fit for everyone, so I always encourage people to interview doulas to find out who is the best fit. I also work in conjunction with palliative care and hospice as supplemental support.
Danielle: For those who may not be aware, palliative care and hospice are similar but different. Palliative care can be for those who are not at the end of life. The only requirement for palliative care is that a person is dealing with a serious illness and has symptoms that they want to have managed. People who have a limited prognosis will be a better fit for hospice, which is true end-of-life care.
When you talk about being a supplement to those services, what does that look like?
Vanessa: Generally, if someone has been diagnosed with a life-limiting illness, I find out what their feelings are about palliative care and hospice. Because of our death-avoidant culture, most people do not know anything about palliative care or hospice unless they have had a loved one use the services. So, there is a lot of education to be done around that. A lot of people do not understand that hospice is a free service paid by Medicare. The average stay on hospice is something like 3 weeks. This tells us that people wait a really long time to get hospice support when they could be getting that support for much longer (at least 6 months).
I encourage people to contact palliative care or hospice if it is appropriate, and then I as I mentioned, just fill in the gaps of whatever is needed. Since I am not part of the medical care system, I have much more independence and flexibility in how I serve families, so I am not bound by certain requirements. My caseloads are much lower, and I only work with 3 to 5 families at a time at different stages of the process. I can stay however long the individual or family needs me to and come as frequently or infrequently as they want. There is a lot of flexibility in how I can provide support.
Another difference between palliative care and hospice is that an individual can still be on treatments that have a goal of treating or curing the disease when they receive palliative care. These types of treatments are no longer used when someone is receiving hospice services. Are you comfortable having those conversations to help people decide when stopping treatment is right for them? It is such a big decision for people in our community.
Vanessa: It is. Yes, I am comfortable helping people with those conversations because the thing is, any good doula is going to take themselves selves out of the equation. Our job is to reflect on what we hear people saying. Sometimes it is super helpful to have just a neutral 3rd party with a compassionate ear to reflect to you the things that they are hearing. Since we are not in the family dynamic or a part of the inner circle who is suffering from the same anticipatory grief, it is easier for us to be objective.
I am all about empowerment of people and I want to return agency to people who have had it taken away from them. What you are talking about is people who have had their agency taken away because of the disease process; they are no longer able to do the things that they would want to do. I think I am equipped to help people make the best decisions for themselves in these situations because it is not going to be a decision I make for them. Rather, I will serve as a sounding board for people who might be trying to make those difficult decisions.
Speaking of empowerment, doulas, depending on where someone lives, can also help with educating people about some of their options at the end of life. For example, if medical aid in dying is legal in their state, an end-of-life doula can help with the decision and the logistics. Voluntarily stopping eating and drinking is available everywhere that we can also help with. Then the biggest thing is final disposition. There are so many new options available for people. It used to just be either burial or cremation, but now we have green burial, which is much better for the planet. We also have, in 19 state states, water cremation, which is also known as alkaline hydrolysis. And in 5 states, I believe we have a natural organic reduction, which is composting of the body.
These options are much better for the planet, so if that is important to you, these ecological options are available. My job is to make sure people are informed. It does not matter to me what choices people make, but I want them to be informed about what their choices are and encourage them to make them ahead of time so that their loved ones are not trying to figure out what they would have wanted.
Could you provide more information on medical aid in dying and voluntarily stopping eating and drinking?
Vanessa: Sure. So, I hate to use too many acronyms but voluntarily stopping eating and drinking and drinking is known by the acronym VSED and it is legal everywhere. There was a Supreme Court case in 1990 that ruled that people can determine when to stop seeking treatment and that doing so is a right that we all have. This case also ruled that people can also decide when they want to stop taking in nutrition and fluids.
When someone is diagnosed with a disease that will most likely lead to suffering, stopping taking in food and fluids is something that a lot of people do informally. But it goes much smoother and faster if you do it formally where everyone is on board, including your hospice caregivers, your doula, and your family. Most people jump to the conclusion that this is inhumane. But it is because our bodies know how to die, just like they know how to give birth and that kind of thing. So, when you stop taking in nutrition and fluids, the body knows it is shutting down and it knows how to do that. If you introduce food and water, it gives the body the message that “we are living again” which sends mixed signals.
Medical aid in dying is known by MAID. And in the states where that is legal, there is a process that you go through. It is slightly different depending on what state you are in, but your physician will determine if you are eligible. To be eligible, you have to be within 6 months of dying, very similar to hospice in that way.
You must have the mental capacity to make your own decisions and it has to be something that you are deciding that nobody else can decide for you. So once the first physician decides that you have mental capacity and are most likely within 6 months of death, there is a certain waiting period and then you have a meeting with a second doctor. It depends on the state you are in. For example, in New Mexico, I think you have to wait 2 days. Here in Colorado, the waiting period is currently 15 days.
Then this second doctor confirms what the first doctor said as far as mental capacity and the length of prognosis. Then, if you are eligible, they can prescribe the medical aid in dying medication, which is something that has to be self-administered. It is mixed with 2 oz of apple juice, and you must swallow that within 2 minutes, which does not sound like a problem for most people, but for those people that have a disease process that affects swallowing, it is an issue. Then, people fall asleep within 5 minutes, and then just depending on a lot of factors including how old the person is and their disease process, it typically takes between 2 to 10 hours before they die.
With that option, it is again about the empowerment of people. If you know that you have 6 months of suffering ahead of you and you want to avoid that for you and your family, then I want people to have that choice. I want to help people create their peaceful environment because I think we all deserve that- everybody is entitled to a peaceful death.
Danielle: I can see as a death doula you have a lot of knowledge and experience with this. For most of us, we do not have this information because this is not something we think about or know a whole lot about. When a serious illness hits us or a loved one, there is such an overload of information to learn and many of us may not even know that these options exist. As you said, your job is not to convince somebody to do it one way or the other, but to educate them on what their options and choices are. Many of us do not know what those options are because we do not talk about this topic. There is a lot to take in, so I can see how valuable your presence and your information can be for the people who are making some really big decisions for themselves.
Vanessa: Thank you. Yeah, and a lot of what I do besides just educating is just normalizing things for people because most people do not have the experience and they do not know how things go. I want to be that compassionate companion that just brings down the urgency if possible and lets people feel like they know what they are doing because most times people do not feel like that. Since we do not talk about end-of-life, most do not feel ready to deal with this thing that is happening, so I try and come with compassion to help normalize things and to educate.
Danielle: With some of the folks I have worked with who have experienced their loved one’s death, it has not been a great experience. Or it has been difficult or traumatic in some way. And so, they are left with these experiences of death that have not gone well and it makes them think, “Well, is that what it is going to be like for me? Maybe there is no way around it. This is just what it has to be like.” Instead, you are offering to say, “Maybe it does not have to be like this, maybe there are ways, if it is not through medical aid in dying or VSED, it is through making choices about what we want our surroundings to look like at the end of our life or having those really important conversations with our loved ones. These are the ways to minimize both physical and emotional symptoms or side effects of the dying process.
Vanessa: You are completely right. I mean, sometimes people have witnessed traumatic or painful deaths and that is so unfortunate. What I am encouraging people to do is to make choices ahead of time so that they can guide themselves toward the ideal of something that is going to happen. We might not get to our ideal because things have a way of changing, but if we do not ever even say what our ideal is, then we will never get there. That is why I encourage people to talk about it ahead of time and to have a plan in place.
I work with people on life review legacy projects and vigil planning. Vigil planning is planning for those last days and hours. Anybody can do that, right? For example, “Do you like the smell of lavender? Do you want that in your room? If you have pets, do you want them on the bed? Do you want a hand massage? Do you want to have your bed looking out a window?” Very simple things like that can make a big difference. But if you do not ever even think about that or talk about that then it is not going to happen.
So, you know, we have to go with the reality of what is and adjust accordingly. But it is just starting to have those conversations and thinking about those things that we do have control over because there is so much that we do not have control over.
Danielle: I am wondering if our conversation will inspire people to want to seek an end-of-life doula out for themselves or talk about end-of-life planning with their loved ones.
For those who are interested in talking with an end-of-life doula, what are the steps and how can they go about finding someone like you or even working with you specifically?
Vanessa: Sure, well, a simple Google search is easy. Just put in ‘end-of-life doula’ or ‘death doula.’ You can also search the National End-of-Life Doula (NEDA)’s national registry. I trained with the International End-of-Life Doula Association. They also have an international directory that you could go to and find someone in your area. People can connect with me through my website, Denver EOL Doula.
If people just want to become more comfortable with the topic of death and dying, I would really suggest things like death cafes. Those are in person or online just to help people become more comfortable with talking about death and dying. The Conversation Project is a website that gives you templates for conversations to have around this difficult topic that are really helpful. The Five Wishes website has advance care directives that people can print out and use. So, there are a lot of different ways and entry points for people.
Practically speaking, when is the right time to reach out to a death doula?
Vanessa: Well, I think any time is fine because as I mentioned, I can help people with their advance care directives no matter what their health status is. I would say the best time though is probably when someone has received a diagnosis, or they are on palliative care. I am willing and able to come in at any point in time. Unfortunately, the sad truth is, I have met with clients for just one visit before they pass because people do wait so long. Also, we are dealing with a great mystery- we cannot predict death. You know, unlike those birth doulas, nobody’s been pregnant for 3 years.
So, I say the best time is when a diagnosis has been given because that gives the doula time to get to know the person and their network of support and figure out where the support is needed. If I only meet with someone 1 or 2 times, I do not have a lot of time to figure out all the answers to all the questions. Whereas, if I am brought in earlier, maybe while they are receiving palliative care support, then I can figure out, “What does peaceful look like, smell like, sound like to you?” and that those kinds of things and really figure out the family dynamics and what priorities the person has and what priorities their loved ones have.
So, I would say earlier is better and that typically is around when people receive a diagnosis. But it might be more appropriate when someone has decided to stop treatment. It just depends on the person themselves and what they think is best for them and when they need support.
Danielle: Vanessa, I want to thank you for taking time out to share your experience with us and for choosing to jump into a space that is not always comfortable or easy. You make an uneasy topic seem very easy. I am thankful that you exist and that other people like you exist to be there for our community and for all of us. Like you said, this is something that affects every single one of us. I am very honored to have been able to talk with you today and want to thank you for sharing your knowledge with our Clearity community.
Vanessa: Oh, thank you very much. I appreciate it. You know, I feel called to this work, and I am willing to do whatever I can to get the word out. So, I appreciate you sharing this information as well. Thank you.