How Adult Children Can Talk to Their Parents About Working with an End-of-Life Doula

Believe it or not, at least half of the inquiries we get here at Peaceful Crossings Durham are from adult children of a terminally ill parent. It is not uncommon (and also totally normal) to feel a sense of concern--even panic--when a parent gets a devastating diagnosis or starts to show real signs of decline. This is particularly true for adult children who know that they will be the ones to provide home care and who will be left to deal with all the post-death estate paperwork.

Above all, adult children reach out to us for help because they love their parents, want the best for them, and want to be prepared themselves. But, there are times when the adult children have not yet cleared the idea of working with a death doula to their sick parent, and want to know how to begin that conversation. Here's our advice on this matter:

1. Follow you parent's lead. First, we actually prefer the term "end-of-life doula" vs. "death doula" because the bulk of what we do is work with a person while they are still alive, not dead! Partnering with a doula means striving for the best quality of life while someone is still here, and putting things in place so that everyone is as prepared as they possibly can be for the moment of death itself. While the term "death doula" is more recognizable, it might be intimidating to your loved one, who may still be coming to grips with their mortality.

   
   

   That said, as end-of-life doulas, we are committed to meeting the dying person--our primary client--wherever they are on that journey with honesty and transparency. Some people aren't yet ready to face the fact that they are dying, or feel too scared to talk or think about it. While we open the door to these topics, we do not coerce people through that door. The work we do must have the informed consent and willingness of the client. If you sense that your parent is not emotionally, spiritually, or cognitively ready to work with an end-of-life doula just yet, then consider dropping the topic and revisiting it after the person has had a couple of weeks to let it marinate--but never force it. If you sense that your parent simply isn't ready (as much as you might want them to be), either wait until they are ready or accept that they may never be.

   
   

   And this is a great point to communicate to your parent: They are in charge of the engagement. We can explain to them what we offer, but ultimately, it is the client who tells us what they want from a partnership, not the other way around. How often we meet, what we do together, the duration of our engagement--all of that is 100% up to your parent, with no obligations. Remind your parent that this is not an inflexible program they must commit to; they can start or stop whenever they wish, and will never be asked to do something they don't want to. Our goal is to give them as much education, control, and autonomy as possible. We work for them. Providing that reminder of control is very important in a situation where a sick or aging parent is essentially losing control.

   
   

   Tip: Do not generate this conversation from the "me" lense ("Mom, I really want you to do this..." or "Dad, I think you should do this...".) While your hopes are important, it's best to lead with what the benefit is to them, rather than making it about fulfilling your needs or requests, which adds a sense of pressure and obligation. Reframe your thoughts by saying things like "This must be a scary and uncertain time for you, and maybe you feel overwhelmed. We are all new to this situation, and I have an idea. There is a resource I learned about that can help you get information so you can make informed decisions, advocate for yourself, answer any questions you may have..." or "Mom, would you be at all interested in working with someone who knows this area very well and can give us all some tips on what we should be thinking about and how to get the most out of this time? The healthcare system is overwhelming, and an end-of-life doula can help us focus and get our needs met." Ask genuinely and openly, without framing the question based on an agenda. It has to be their own choice.
   

2. Explain in simple terms what doulas do, and then let us get into the weeds about it. Partnering with an end-of-life doula is a new concept to many, and getting too wrapped up in the details can make it hard to explain to your parents what, exactly, we do. Keep it basic, and if your parent is interested in hearing more, suggest a free meeting with us where they can ask more questions and get a sense of who we are--and remind them that if they decide they're not interested after the consultation, that is totally fine!

   
   

   For the simple explanation, define end-of-life doulas as non-medical, non-legal, trained professionals who have a lot of experience working with people who are terminally ill. Doulas help people prepare for the best death possible, from protective paperwork to hosting essential conversations, and from patient advocacy to planning that cuts down chaos. Think of it like a concierge for the dying, who has the time and knowledge to answer all your questions and help you find the fastest path to a solution.

   
   

   How do we do that? In a few ways! Doulas are very knowledgeable about what dying people must navigate, whether it is getting answers from doctors, planning for care, thinking about how to best use the time that is left, and talking through what they want and don't want. Doulas provide important information you may not realize you need, and ask exploratory questions that help dying people figure things out at a confusing time. Most people haven't had to answer these questions before now, so it's good to have a seasoned guide walk you through this time.

   
   

   We help with coordination and logistics around finding care and community resources so that dying people and their families don't have to spend hours learning about what's out there, and can instead spend that time being together.

   
   

   Another big benefit is that end-of-life doulas are non-judgmental, objective third parties. When someone is dying, they may have wishes or emotions that they don't feel they can discuss with family or friends--regrets, fears, hopes. Some of these topics are highly charged, and maybe your parent feels that loved ones will pressure them to do one thing or another. Doulas offer a caring, judgment-free ear that helps dying people determine what is important to them without influence, or to talk through conflicts to someone who doesn't come with the baggage of a prior personal history.

   
   

   We also educate families and loved ones on what dying looks like and how to care for someone who is dying, which greatly benefits and protects the dying person when their time comes. That's just the start of what we do, but those are some basic concepts that illustrate the role.
   

3. Remind your parent that the sooner they start working with an end-of-life doula, the more they will get out of it. Sometimes families wait until late in the game to reach out to an end-of-life doula for things like preparing advance directives, doing legacy projects, or making a home care plan with their dying loved one. Often, people who are that close to death do not have the energy or mental ability to complete these things. Families that want to learn more about what to expect with the dying process and how to care for a dying person will have a hard time receiving all that information in a short period of time, especially when they are in crisis mode, versus learning it and practicing it over time in a more absorbable way. In short, it is never too early to work with a doula--but it can sometimes be too late for the most beneficial experience (read more about timing here). Don't rush someone into this decision, but do gently remind them that slow and steady is much more palatable than learning a lot and making big decisions in a short period of time. Dying people want to spend what time they have left doing what they love, with the people they love--they don't want to spend their last weeks wading through logistics, if they can help it. And since decline by disease or age is unique to each person, it isn't always predictable when someone will start having more bad days than good ones. The goal is to be as present and as peaceful as possible, and that can be hard when to-dos are crammed in at the very end. That's why we're called Peaceful Crossings.

Do you have questions about these points, or want to learn more about working with a death doula in Durham? Contact us for a free 30-minute consultation.