Is there room in the hospice team for an end-of-life doula?
I have been a hospice nurse for a few years now, and it is without a doubt, the work that I was always meant to do. Working in end-of-life care has become a constantly evolving opportunity for personal growth. I am definitely not the same person I was when I first started working in hospice, and I am comfortable saying that I am a better version of myself because of what I do. I have been blessed to work with some of the kindest and most compassionate humans and I accept, always, that I do not know everything about this work, and they are my teachers, which inspires me daily.
Hospice is not taught in nursing school, so this is an area of nursing that you can really only learn from gaining hands-on experience. However, there are many blogs and books out there that offer shared stories and hospice wisdom from people like Barbara Karnes, which I encourage you to read and learn from. I think of hospice nursing as a bit of a delicacy in the nursing field, a specialty of sorts, and it takes time to truly learn how to be present for someone who is dying and for those who are about to say goodbye.
When you, or someone you love, signs up for hospice, you will find out that it comes with a team that collaborates to ensure that you are cared for well, that symptoms are managed and that the dying process is as peaceful and pain-free as possible. We are not magicians, we cannot magically remove all of the struggle or discomfort that happens during the dying process, but we can make every effort to try. I have learned that education is key and the more we share with you or your loved ones about everything that could be experienced, the better prepared everyone is, which reduces the element of surprise that can sometimes be scary.
I respect each member of the hospice team. I appreciate their role, their wisdom, their experience, and the contribution they bring to the patients and their families. The part I have been openly honest about, that I struggle with most, is some of the rules and protocols we must follow. I get it, I understand them, I just struggle with them. You see, I don’t like it that my time to sit at the bedside, or with the families is limited. Sometimes, if I don’t have other patients to see, I am able to sit for a while, but I do not always have that luxury and I struggle with leaving and walking out the door when I feel that I could offer continued support if I stayed.
It is with this in mind that first drew me to wanting to learn more about the end-of-life doulas and the work they do. The idea of being able to sit at the bedside for as long as needed, to provide comfort and support to the family during, but also long after death, is what inspired me to take some classes and learn more.
I first signed up with The Conscious Dying Institute to take their end-of-life doula program. This far exceeded my expectations, and I didn’t just come out of the program as an end-of-life doula, I came out of it better prepared to care for someone who is dying, in a way that is deeper and more meaningful than I ever imagined. I also took their Conscious Dying Educator course so I could teach others to do this work. There are many lovely doulas out there who have written books, write blogs and teach classes and I take in every word.
Currently, most traditional Medicare based hospices do not offer an end-of-life doula, however I think they should. I think the doula could offer that additional intimate piece that could tie everything together in a way that would make death and dying a little more peaceful for everyone involved. Not all situations require someone to linger longer at the bedside but imagine being able to offer the family a doula to sit longer, to stay longer, and to continue checking in after someone dies, to offer additional support. I do not in any way suggest the doula replace any member any of the team, but I do think the doula could fill in some of the spaces that tend to leave a family feeling alone and less supported than we want them to. That is not because the hospice team failed in any way, it is simply because we cannot be in all places at the same time and perhaps the doula could work with the team, following their lead and help them to fill in when they cannot be there… even when they so desperately want to be.
One of the things I love most about being an end-of-life doula is my opportunity to step in prior to the dying process, early on when diagnosis is first given and I can assist with helping to choreograph a richer experience for everyone involved. Encouraging letter writing, photo moments, musical playlists and letting everyone know how you want to be cared for when it comes time. I love this part of the work so much and it fills me up knowing I can offer this.
Sometimes the diagnosis and the dying process aren’t the hardest part for those who have to say goodbye. After the funeral home has come and the body has been removed, the house becomes still and quiet and those left behind can feel helpless, uncertain, and alone. These are the moments I want to stay. I want to take their hand, sit with them for a while, listen to them, comfort them as they cry, and stay to dry their tears, but I cannot. It is at this time when I call the social worker or the chaplain, who do beautiful work as well, but in many cases, I think a doula could soften that moment just enough to bring comfort and perhaps even relieve some of the grief… creating a segue for the social worker, chaplain, or bereavement support.
I would love it if we could add another member to the hospice team, offering the end-of-life doulas to our patients and families. However, until then, I believe that our hospice volunteers are already doulas and would benefit to have this training and certification so that we can utilize them even more than we already do. If it were up to me, I would provide doula training to hospice volunteers so that we could offer their compassionate hearts and presence to stay with families if needed, before, during and after someone they love has died. Imagine the difference it could make for them. Imagine the difference WE would be making for them.
Is there room in the hospice team for an end-of-life doula? Yes, I truly believe there is. The doula could be the thread that ties all the pieces together, bringing them in a little closer, making sure there are no gaps or holes and that all the patients and families feel that much more supported. The doula would not replace a member of the team, the doula would add to the team and allow each hospice agency to offer even more than they already do.
Perhaps the very best thing we could do, at least for now, is encourage all members of the hospice team to have the doula training. The deep, spiritual training of an end-of-life doula is that gentle presence at the bedside that reminds everyone in the room that they are cared for well, and they are not alone. If every member of the hospice team had this training, and if we utilized our volunteers more in this role, I believe we would be able to offer our patients and our families even better care than we already do. This is just my opinion...
I am constantly trying to find ways to provide better end-of-life care, and help to create a larger, more powerful community of compassionate people to do this work in a way that I believe all human beings deserve. xo