How death doulas can help families have difficult end-of-life conversations
Every family has a unique dynamic, and for many, there are challenges to having an open and honest conversations about death and dying.
Sometimes a parent or spouse has not yet accepted their terminal diagnosis, or adult children can't bear having the conversation because it is too emotionally painful for them. Perhaps some family members have strong personalities or harbor resentments (justified or unjustified!) that make a balanced discussion a challenge. Or maybe it is difficult for the dying person to tell family members, "I no longer want to seek treatment" for fear they sound as if they are "giving up."
Regardless of the nature of the hurdles, it is extremely important to everyone involved that these end of life conversations occur. Communicating advanced directives, post-death requests, solidifying wills, outlining "what if" scenarios, and laying out what is ahead should all be on the table in these discussions. It ensures that the dying person has made their wishes clear and it keeps their loved ones from wondering if they made the right decisions. When preferences are clear, families avoid the contentious, lengthy debates (and often, arguments) that come with guessing what someone would want. End-of-life doulas can help family members make these decisions together and assist with communicating and honoring the dying person's choices. This can happen in one session or span several sessions.
So then there's the big question: how can an end-of-life doula assist terminally ill people and their loved ones talk about death?
Death doulas are facilitators that help family members communicate and make decisions together, explaining the different options available for end-of-life care, such as hospice care, palliative care, and advance care planning. The doula can also help family members understand their loved one's wishes and preferences, and can provide guidance on how to make decisions that are in line with those wishes.
Second, death doulas can provide emotional support to both the family members and the person who is facing a terminal illness, creating a space where everyone can express their feelings to a listening ear. The doula can also help the person who is facing a terminal illness to feel heard and understood, and to express their fears and concerns, help to mediate any conflicts or disagreements, and can assist the family in reaching a consensus about the person's end-of-life care.
Ok, but how?
We're trained on how to have these conversations. Communication is a critical, learned skill for end-of-life doulas, who are often called upon to have difficult conversations with individuals and their families about end-of-life care. These conversations can be emotionally charged and can involve sensitive topics, such as a person's wishes for medical treatment at the end of life, funeral arrangements, and bereavement support. One key aspect of communication for end-of-life doulas is active listening. Active listening involves fully engaging with the person speaking, giving them undivided attention, and showing empathy and understanding. This can be particularly important when dealing with individuals who are facing a terminal illness and may be feeling scared, overwhelmed, or uncertain about their future. End-of-life doulas should also be prepared to address any misconceptions or misunderstandings that clients may have about end-of-life care. This may involve providing information about available treatment options, discussing the potential benefits and drawbacks of different courses of action, and helping clients understand their rights and choices. For clients choosing to work with their end-of-life doulas through the dying process, end-of-life doulas are adept at communicating effectively with other members of the healthcare team, such as doctors, nurses, and social workers. This may involve coordinating care, advocating for the client's wishes, and ensuring that all team members are aware of the client's goals and preferences for end-of-life care. Another important aspect of communication for end-of-life doulas is being able to provide emotional support and comfort to clients and their families. This can involve using techniques such as reflective listening and validation to help clients express their emotions and feel heard and understood. Finally, we ask open-ended questions that help people come to realizations or make decisions on their own versus telling them what we think is happening or what they "should" do.
We are an objective third-party. Doulas don't have a personal agenda, and we don't carry any "baggage" pertaining to clients and their families. We are non-judgmental facilitators. This provides a neutral buffer that helps everyone feel equally heard. That said, while doulas serve the dying and their families, the primary client is the dying person. Once the dying person has settled on what they want, doulas are ultimately advocates for those wishes. But they are also able to help loved ones navigate those wishes amidst opposition, potential misunderstandings, and limitations. With compassion as a basis for these conversations, doulas ask guiding questions that are effective at helping families get to their root of their fears, hopes, upset, and indecision.
We are knowledgeable in death and dying. Death doulas can provide information and guidance to help family members understand the end-of-life process and make informed decisions. If you're reading this, then you've never died before, and many of the adult children I work with have not seen the dying process from start to finish--so there's a knowledge gap that needs accounting for. Because death doulas have experience with death and dying, they can offer unique insight into what families may want to think about. This helps inform the pros and cons of various options. It is not uncommon for me to hear "I never thought of that."
We have resources and networks. Once everyone is on the same page (or as close to the same page as they're going to get), the next step is to formulate an action plan. That can include arranging private, at-home care services, comparing hospices, contracting burial plots, scheduling meal deliveries, and building a schedule for caretaker rotation (or even booking a bucket list trip). As a death doula service for Durham, North Carolina, Peaceful Crossings has a long list of regional resources at the ready for clients. Instead of spending hours on the internet figuring out which healthcare providers offer which at-home services, clients can simply ask for my resource lists and start making phone calls. When time is limited, the goal is to spend as much time enjoying what's left and as little time as possible mired in logistics. In addition to a comprehensive set of referrals, Peaceful Crossings assists families in dividing up to-do lists and organizing their action plan in a way that is more achievable for everyone. In this way, a doula can give some time back to the dying and their loved ones and make a dent in the stress factor.
Working with a death doula can provide valuable support and guidance to family members who are having end-of-life conversations. Peaceful Crossings can help you make these conversations easier and more productive, and can provide emotional support to both the family members and the person who is facing a terminal illness. If you're looking for help with starting an end-of-life conversation, contact us.