In Part 1, I discussed the idea of DIY body disposition for a family member or friend. In Part 2, I describe resources provided by home funeral guides and end-of-life (EOL) assistants.
If you want help to manage a DIY funeral, you can read about resources at the website of the National Home Funeral Alliance (NHFA). The site provides a listing, by state, of home funeral guides who are members of NHFA.
Lisa Carlson has this to say about home funeral guides in her co-authored book “Final Rights” referenced in Part 1:
Most funeral directors say they entered the field to help people manage one of the most difficult times of their lives, and we think most of them mean that sincerely. Home funeral guides say much the same thing, but they have a very different idea of how to help the grieving. These [home funeral guides] universally express a desire to empower families to make their own decisions. They don’t want to direct the funeral; they want to ensure that the family has the practical knowledge they need to direct it themselves. In contrast to the conventional funeral industry, much of which is still reluctant to give consumers truthful information, home funeral guides are among the best sources of accurate information on funeral options and families’ legal rights. . . . We refer to these [people] as home funeral guides, although not all of them go by that title. Some call themselves death midwives, some consultants, and some have not adopted a title of any kind, but “home funeral guides” seems like the best generic description.
In spite of the statement on the NHFA website that “Home funeral guides do not provide hands-on service for pay,” some do charge for their guidance and education services, which may include hands-on services, with or without pay. If you contact a home funeral guide for assistance, you should clarify whether there is a charge for services.
When they accept pay, home funeral guides differ from the Final Exit Network volunteers, who always provide education, training, and guidance at no cost.
The modern home funeral movement probably began with Ernest Morgan, a Quaker who started out in Yellow Springs, Ohio, in the 1950s, collecting ideas to help his Quaker group bury their own dead. In 1962, his collection of materials was published as A Manual of Simple Burial. Later, and now in its 14th edition, it is Dealing Creatively With Death: A Manual of Death Education and Simple Burial.
The next development came in 1987 with the publication of Caring for Your Own Dead by Lisa Carlson. The advent of home funeral guides came in the 1990s, stimulated by Carlson’s experience with DIY burial, and they started moving toward “professionalization” by the late 1990s. The websites of NHFA members provide information on training and assistance that each offers.
As Lisa Carlson has pointed out,
“in the past, most families handled most deaths themselves without funeral directors or guides. . . . Although managing death is no longer part of the common knowledge of our culture, families still have the right to do so in most states, and most are more than capable of handling all requirements themselves. But for some, at a time of intense grief, an experienced guide can help with the process. . . .”
Another recent development concerns providing assistance with the death process, rather than with the body disposition after death. These people often go by the name “death midwife” or “death doula.” While I find the names a bit off-putting and inapt because they combine two opposite concepts–birth and death–these individuals may assist families or individuals who need help with the death of a loved one, both during the dying process and after death. One such person describes her work as making “the environment as peaceful as possible for the person who’s dying as well as for family members and friends.”
These end-of-life (EOL) assistants seem to perform some of the same functions as hospice nurses, social workers, and chaplains. One such guide describes her work:
- Pre-death support and counseling.
- Assistance with death planning and paperwork.
- Providing information and resources in regards to standard funerals and burials/cremation, as well as green and home funerals.
- Loving support and assistance during the process of death and afterwards.
- Assisting with whatever choices the family has made in regards to preparing the body for viewing and then burial or cremation.
- Performing non-denominational funeral/memorial services.
- Bereavement support for grieving family and friends.
For this guide, the role of EOL assistance and home funeral assistance has blended into one position that goes beyond both roles. It includes also “counseling & life-coaching.” for which she charges $80 an hour. Another EOL assistant in the Austin, Texas, area charges $75 per hour for her services, though that charge may be negotiable.
Right now, there is no standardized training for EOL assistance apart from what has been learned from hospice professionals, though there are certification programs developed by organizations created by those who provide these services. Many EOL assistants also provide the services associated with home funeral guides, so neat distinctions between the two are not always clear.
If you want to know more about these EOL assistants, or want to become one, you can take a course. One such course–”Become A Certified End Of Life Doula”–is available for $997. The course description claims to provide thousands of dollars more in extras. An internet search reveals that a variety of trainers offer similar courses throughout the country.
The relationship between EOL assistants and hospice recently became closer with the creation of a council of end-of-life assistants that advises the National Hospice and Palliative Care Organization (NHPCO), which describes itself as “the leading hospice and palliative care membership organization in the U.S.” * NHPCO refers to the assistants as “End-of-life Doulas,” or EOLDs, and describes them as “caregivers who offer non-medical, holistic support and comfort to dying people and their families.” Their services “may include education and guidance, as well as emotional, spiritual or practical care.”
These EOL assistants may belong to one or more organizations, such as the National End-of-Life Doula Alliance (NEDA), the International End-of-Life Doula Association (INELDA), the Lifespan Doula Association, and perhaps others.
The Lifespan Doula Association pictures the job of EOL assistant as a multi-circle diagram (above) with all roles intersecting only with the EOL assistant (the diagram is found here). I’m sure those who fulfill roles as clergy, spiritual advisor, celebrant, vigiler, hospice volunteer, advance care planning facilitator, respite caregiver, practical household support services provider, home funeral guide, and bereavement services provider will be surprised to learn that they are supplanting the role of a “death doula,” or that they are being supplanted by such a person. In this view, the EOL assistant is a multi-talented, non-medical service provider who is virtually all things to all people at the end of life.
If you think you might want help from either a home funeral guide or EOL assistant, do your own due diligence now, so that you are prepared when the time comes. When that time arrives, you may not be able to make the best decisions and you won’t have time to investigate as thoroughly as you would like. The internet is a good place to start your research. Don’t be afraid to ask questions.
I find that it is always helpful to keep a skeptical outlook until all of my questions are answered and I am comfortable with the person who wants to sell me services. I have walked away from medical, legal, hospice, automobile, and insurance providers when their services were not helpful or not as advertised or represented. EOL assistants and home funeral guides should be treated no differently.
#########################
* There are many other associations of hospice services and workers, such as the Hospice Association of America, National Association for Home Care & Hospice, Hospice Foundation of America, American Academy of Hospice and Palliative Care Medicine, International Association for Hospice & Palliative Care, Hospice and Palliative Nurses Association, and many similar state-wide organizations.
When the topic of advising familes and educating them about home funerals turns to the subject of Certificates and Fees for Service, I can’t help but think; we’re simply looking at a new breed of Funeral (Guide) Director. The Funeral Rules states that if you’re providing the following you’re a funeral provider.
Funeral services are:
Services used to care for and prepare bodies for burial, cremation, or other final disposition; and
Services used to arrange, supervise, or conduct the funeral ceremony or final disposition of human remains
Funeral Guides, a new catagory of funeral provider?
This has been an issue that has been discussed from the beginning by those of us who have been in the funeral consumer rights movement. The home funeral guides can be of great help to families, but what they do when they charge the family money can make them funeral directors under the laws of many states. The resources that can be found through the Funeral Consumers Alliance are sufficient to learn how to do a home funeral — and FCA’s help costs nothing.
FCA educational resources are great, but the human experience of caring for the dead isn’t a DYI task. I believe home funerals will grow, but families need to be socialized into the experience. When careing for the dead, is built upon, believed in and witnessed, more will benefit. Just like you, I’m skeptical of labels, (dula, guide, etc.) that may make families reluctant to act, particularly when death occurs at home. Thanks again for your article.
This is a very interesting article. A long time ago, in a galaxy far, far away, death rituals were clear in every culture. Compared to our 7 billion +., not many humans made up all those cultures. The billions who have potential access to this discussion now live in a multi-cultural society. Multi cultural has advatages, but clarity of values and clarity of behavioral standards is not one of them. How to best deal with dying and death? Good question!
Thank you for the great blog post.