Initially, she 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.
“They may want to utilize me to come over and just sit with them and be a support person,” she said. “I could be another resource for the family; to be there to comfort them, run errands, cook them dinner, or just give them a break by staying with the patient. Really, it’s anything they need. Then I’ll follow families for 13 months after the death to help them get through all those firsts and check to see how they’re coping. Sometimes people just need somebody to talk to and I can just be that.”
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 do have a medical background so 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," she said.
She’s currently in the process of starting up her business, Peaceful Passings LLC and hopes to start practicing by the beginning of January. She’ll be working out of her house, but will travel to families for consults and care. Although the business will be 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 the only certified end of life doula 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—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 - what they are looking for from support or do they even know what they need - 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.”
Amber decided to become certified as an end of life specialist late this past spring. She wanted to do something different with her career, specifically to help people at the end of life. So, 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.
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.
Her certification is through the National Hospice and Palliative Care Organization. She completed a three day training in New York City at the end of September and now has three months of mentoring.
“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. The misconception is that Hospice is there 24/7 and we know that’s not the case so I could be that other support person,” she said. “I think that we fall out at the end of life. It’s that purple elephant in the room that nobody wants to talk about, but needs to talk about.”
Amber’s experience with her two children, ages 14 and 10, 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. 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 beautiful at the same time. 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. 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,” she said. “I think a lot is education and getting people to talk about death and not be so afraid of it. We’re all going to end up there, we just 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.”