Amber decided to become certified as an end of life specialist because she wanted to do something different with her career, specifically to help people at the end stage of terminal illness. When a friend sent her a link about end of life doulas, she looked into it and knew it was exactly what she wanted to do.
Initially, Amber can help sort out legal documents such as advance healthcare directives and wills, and can serve as a source of support through the remainder of the dying process. She will also stay with the family for 13 months after the patient passes.
“I can be another resource for the family—to be there for comfort or to run errands and cook dinner, or even just to give them a break by staying with the patient. Really, it’s anything they need," Amber said. "Sometimes people just need somebody to talk to, and I can be that.”
After their loved one passes, Amber follows up with the family for a year to help them navigate life after their loss.
End of life specialists do not usually deal with the medical side of a terminal diagnosis, but since Amber previously worked as a registered nurse at the Richard E. Winter Cancer Center, she can offer knowledge.
“I think my experience can make it a little bit more reassuring for the family because I have a medical background," Amber said. "I can help not only with physical and emotional needs, but with understanding different medical terminology, different phases of the dying process, and being a resource to make sure the dying patient's needs are being met."
Amber plans to work out of her house but will travel to families for consults and care. Although she is primarliy based in St. Lawrence County, Amber is not going to restrict her coverage area.
“I’m going to see where it takes me and I’m hoping I can grow,” she said. “I’m one of the only certified end of life doulas in the area to my knowledge.”
Unfortunately, insurance does not cover the services Amber offers since they’re considered holistic care, but she is more than willing to work with clients to determine an affordable price for services. Her initial one hour consult with a new client is free and a price is negotiated from there.
“I can base price on income so there is room for me to negotiate, and I’m not going to turn anybody away,” she said. “I’ll find out what patients and families want from me in the initial consult and then have them sign a contract with everything laid out. It’ll say this is the price and this is the service, that way they’ll know what they’re getting.”
Sometimes people just need somebody to talk to, and I can be that. I just want to help people get through these trying times.
Amber is certified as an end of life doula through the National Hospice and Palliative Care Organization.
“It’s such a new concept, but I think it’s something that’s really needed. It really is another resource and way to help out Hospice," she said. "The misconception is that Hospice is there 24/7, and we know that’s not the case, so I could be anothe r support person.”
Amber’s experience with her children during her husband’s death helped her see how beneficial being there every step of the way through a terminal illness can be for families.
“I couldn’t have asked for a better experience for my kids," Amber said. "They stayed with Scott from the moment he decided he wasn’t going to do any further treatment and held his hand during his very last breath. For a time that was so hard and hurtful, it was also beautiful."
The family's experience with Scott's passing helped them navigate the loss of Amber's father a few months later.
"My kids now have a sense of death that they never had before and they were able to see that it’s not scary and it’s very peaceful," she said. "I think they understand it better now so when my dad passed away three months later, they were able to cope a little bit easier."
Amber emphasizes the important of end of life care and more openly talking about death.
“I think that we fall out at the end of life. It’s that elephant in the room that nobody wants to talk about, but we need to talk about," Amber said. "We’re all going to end up there—we don’t know when or how, but that is where every single person on this Earth ends up so we should and need to talk about it.”
Her advice for patients and families facing an end of life diagnosis is to take some positives out of all the negative, even when it doesn’t feel like it’s going to be okay.
“The best advice I could give is try to get your thoughts in order as much as you can. It’s not going to happen tomorrow, so you do have time, even though it doesn’t feel like it,” she said. “One of the mottos end of life specialists follow is, ‘We can’t add days to your life, but we can add life back to your days you have left.’ So take advantage of the time you have and make the most of it.”