By Janie Rakow
As end-of-life doulas (death doulas), we are constantly amazed that as people approach death, they don’t understand that they have choices. Hearing that you have a terminal diagnosis can be paralyzing, and take a while to sink in. In the meantime, critical questions are often not asked, and subsequently overlooked. Our job as end-of-life doulas is to ask those difficult questions so that you understand your choices at end of life.
When someone receives a terminal diagnosis, the first thought is to fight. Exploring therapies to beat the disease is often discussed, and a course of treatment is often recommended. Which is wonderful. But, the other question that usually goes unsaid, is what if the treatment doesn’t work? What are the options and considerations then? Because everyone wants to remain optimistic, that road is often not explored. And then, if there is a sudden and rapid decline, and their loved one can no longer communicate their wishes, the family is left having to guess about treatments and decisions.
The Role of End-of-Life Doulas and Medical Aid in Dying (MAiD)
By Jeri Glatter
When we met Sam, we began with a simple question, “How can we help you?” As end-of-life doulas, we take the lead from them, meeting them where they are, at that moment in time, while remaining open and willing to explore with them. For Sam, the answer was direct and clear, as he said, “I am ready to be out of this body. I am done. I am fine. Please help my family, they need support.” Our starting point had been succinctly delivered and our initial question answered.
Sam had contacted us for support for the last steps of his process with Medical Aid in Dying (MAiD), which is legal in New Jersey. The strict requirements for NJ Medical Aid in Dying had been completed. Sam had the required medication from the pharmacy and asked if we’d like to see it. As we reviewed the instructions and medications, we asked him if he would be able to drink the required amount of liquid. He had cancer that had spread throughout his body and impacted his jaw, and his pain was unrelenting despite the support of medications. Understanding that our ability to assist him relied on drinking the medication, we kindly asked if he could please demonstrate his ability to swallow with apple juice. He was determined and brave and completed the task with the use of a straw.
We were now in a position to gently move from the physical aspects of support to the emotional and spiritual. We used the next period of time to get to know him, his beliefs, and who he would be leaving behind. Where would he like to take his last breath and who would be present? We are always astounded by grace and honesty that can accompany the dying. Time is of the essence and they, more than anyone, understand this. For Sam, extra words and wasted time no longer belonged to him. He knew that his decision was difficult for his family, although this small nucleus of loved ones supported him. He asked if we could be there to relieve his family of the mechanics of MAiD. Sam didn’t want the responsibility of the timing and mixing of medications to fall on them. He hoped that would free them of a sense of responsibility and allow them to be in the emotions of their loss. We assured him that we would be able to do that for him as well as provide emotional support as needed. FareWell Doula believes MAiD is best approached with two end-of-life doulas working in tandem, as this enables one doula to focus on medications and while the other doula can be more readily available for the client and family.