Influencing Hospital Protocols

One obstacle facing some families serving as their own funeral directors when a death occurs in a hospital or long term care facility is ignorance on the part of employees who are not aware that a body can be released into the custody of the next-of-kin. Accustomed to calling a funeral home at such times, employees sometimes assert that this practice is mandated. Even an assertive family member, certain of his or her rights, can find mounting a defense at such a tender moment too daunting. We need to be advocates for change in this area, so that hospitals and nursing homes are prepared for this eventuality.

The Joint Commission (previously the Joint Commission on Accreditation of Healthcare Organizations) is an independent, not-for-profit organization that evaluates and accredits more than 16,000 health care organizations and programs in the United States. As the nation's predominant standards-setting and accrediting body in health care, it exerts considerable influence on hospital and long-term care facility practices. So when one of my relatives, a former Internist at Walter Reed Army Medical Center, suggested to me recently that I might try to get The Joint Commission to develop protocols for releasing the body to the next-of-kin, I realized immediately how helpful that might be for the home funeral movement. He suggested additionally that if we could position this as a human rights issue, we might find more support.

I wish I knew someone who knows someone at The Joint Commission who could embrace this issue as their own. But I did succeed last week in finding out who would be the person responsible for considering such a request: Dr. Robert Wise, who is the commission's vice president of standards and survey methods. Today I wrote and mailed this letter to him:

Dear Dr. Wise:

I am the project leader for Undertaken With Love, a noncommercial endeavor of a group of home funeral advocates across America aimed at increasing public awareness of a family’s right to care for its own dead until burial or cremation. Though still an uncommon choice, home funerals are slowly picking up in towns where groups have formed to support them. Those who arrange such funerals find that participating creatively in the final care of the body gives them a sense of having honored the loved one and promotes their own adjustment, allowing them to spend unhurried time with the body in the comfort and privacy of the home. It is also a very affordable option.

One obstacle to the practice, however, is the lack of protocols in hospitals and long-term care facilities for releasing a body into the custody of the next-of-kin rather than a commercial funeral provider. We have seen instances where a family has prepared for a home funeral well in advance, only to encounter hospital employees who are unaware of the family’s right to care for its own dead who insist that calling a funeral home is mandated. Even for an assertive individual certain of his or her rights, the notion of mounting a rigorous defense at such a tender moment is daunting. Too often, the family caves in, and a commercial funeral provider is summoned.

As you can imagine, this amounts to a human rights issue, given that only six states require the involvement of a licensed funeral provider at some point during the funeral process (Connecticut, Indiana, Louisiana, Michigan, Nebraska and New York). It would be most helpful if The Joint Commission would establish recommended protocols for releasing a body into the custody of the next-of-kin. If it would be helpful, I could provide you with a few examples from hospitals that are especially progressive in this respect.

I’m enclosing our guide to home funerals in case you would be interested in seeing how attentive this movement is both to the practical skills involved in caring for a body for several days as well as the legal responsibilities involved.

I will be away June 3-9 but would be happy to talk with you about this at any other time if you are interested.

Thank you for your consideration.

Sincerely,

Holly Stevens

We'll see what happpens....

A Family Undertaking: One Man's Story

Note: This entry, except for this note, is by Rodger Ericson of Cedar Park, Texas, who contributed 14 wonderful images from the January 2007 family-directed funeral of his mother, Harriet Ericson. You must visit our Flickr site to see them! -- Holly Stevens

Mom was 93 and would have been 94 in three months. She was on hospice during her last months under the term "failure to thrive." She was losing weight, losing interest in things and yet alert to the very end. She yearned to die, as she was the last living relative of her era and wondered why she could not die. She simply died of "old age." We had lots of fun together in life and had a wonderful celebration and time of giving and loving at the end of her life and during the days that followed her death.

She was one of six surviving children Five sibling infants preceded her in death in the early 1900s. The five siblings literally had home funerals. They had died in the home and were in the parlor for viewing, and the funeral service was held there. Mom remembered that, and we often talked about the beauty of those events. Just before she died, she talked a lot about her mother and and one infant brother whom she had held at his death. That story prompted me to tell mom what we had done: I told her about making the hope chest and that I thought that this time death was probably near and that she would soon see her little brother in a new way.

Mom was a one-room school teacher for many years, married a plumber and owner of a hardware store, and had two sons. She was active in her church and in community activities--always giving to others and thinking of their interests before her own. She had her stubborn quirks and ways, but she was gracious and kind far beyond the average person.

My dad died in 1981, and she grieved greatly over that for maybe 15 years before she really accepted it. She loved life but was not afraid of death. She taught me much and I cherish being able to give back to her the kind of infantile care that she first gave to me when I was born. I found it strange to find the roles reversed--of me being the care giver in such a similar way to what she had done for me when I was born. She lived most of her live in Minnesota but we asked her to move close to us two years before she died, because she needed more help than could be expected of distant relatives and close friends. She lived in her own independent living apartment in Round Rock, Texas, up until three weeks before she died.

When I knew mom's death was imminent, I told my brother that I wanted to make a casket for my mom. We called it a hope chest, because that changed the image for myself and my grandchildren. As the grandsons said, ghosts and vampires are in coffins. The name also reflected our Christian faith of a final resurrection of the dead. After we made it, I told my mom and she immediately said, "Can I see it?" "Certainly," I said, and I lifted her out of the bed and put her in a wheelchair so she could see it. Her comment: "That's wonderful."

With my experience as a pastor in a parish, and helped by hospice experiences and learning of some of the family actions in preparing the body for burial, I came to realize that we could do most of the work ourselves, and learned from others of the blessings they received from doing some of this. What we did is what I would call family directed death care. We took charge and followed our own wishes, with the help of our home church and home pastor.

Over the years mom and I had discussed the excessive costs and our objections to the funeral home practices of making people look like they were "sleeping," by using heavy makeup. Mom never used heavy make-up and we never liked that artificial look. Mom looked dead, and yet natural and beautiful, when we placed her in the hope chest. Donna Belk of Crossings Care Circle had helped us to know a technique for closing her eyes and keeping her jaw closed by using towels.

We used a foam pad that had been under mom and dad's bed mattress as a loving base for her body and used a bedspread that they had used until my father died, to wrap my mom for her final resting place. We learned how to dress a body, cutting open the back side of the dress. It was so obvious, but unknown to me before this. Washing and then anointing the body, with a few words on each part of the body, was a powerful and precious ritual. I especially loved Donna's phrase about Mom's hip: that it had been the first saddle for her children.

Traveling to Minnesota in our truck with her body was time consuming, and I wish that we would have had more time, but we wanted to have the service on a Saturday, when family members could more easily attend, and that was my only regret--we felt rushed. It was humorous when we stopped for the night at a hotel, and I asked to have the truck parked by the front door, so nothing would happen to the treasure in the back of the truck. I told them that mom was in the hope chest. My daughter said, "Dad, you don't have to tell them everything." It didn't feel strange to transport her body in our truck. In fact, it helped us to accept the reality and to know we were enabling what she had wanted to happen, to be buried in the home cemetery next to my father.

I did not know of anyone who did everything as we did with a body burial. We wanted to give our final gift to mom--in service and love and thoughtfulness rather than throwing money at the event. I would not recommend people to take on a family funeral for the purpose of saving money, but as a result of what we did, the costs were low--under $200 plus cemetery costs and gifts to the church. The benefits, on the other hand, were high. We experienced healing. I felt it was good therapy. My children and grandchildren learned some facts and to not be afraid of death. My grandchildren now talk rather openly about how someday I will die. It is not a morbid conversation; neither are they scared by the thought. We sometimes are amazed at how beneficial the family funeral of mom was for them.

The most common comment we got from others was, "You can do that?" And the second most common comment was, "That was really nice. It was so personal."

I would strongly urge family members to prepare long in advance for a family funeral. Last minute decision making seldom results in a family undertaking.

Photographer Plans Large Format Book on Home Funerals

I've been approached by a well established west coast photographer named Jan Sturmann (first name pronounced "Yon") who is very interested in creating a large format photography book that will visually tell the stories, over time, of about a dozen families as they encounter the final illness of a loved one, on through the actual death, and beyond, to a home funeral. He's envisioning a book that will include families throughout the U.S., and will be multicultural. The emphasis will be on candid photography but text will also be included, perhaps about a thousand words per story, perhaps in the family's own words.

His work will involve a series of interviews and photography sessions over time. He'd like to get started by working with one specific family soon, with the hope of getting a major publisher interested in the project once they see the quality of the photos. One of the challenges will be finding families who are willing to be photographed and interviewed during such intimate times, and learning about them in time to capture the story before the death comes.

I think such a project has value from a couple of standpoints. First, we are as a culture so removed from caring for our own dead that it's hard for most people to even understand the concept "home funeral" and to visualize what it entails. Second, photography can convey in a way that text cannot how beautiful and indeed sacred a home funeral can be -- allaying gut reactions that caring for the dead is somehow scary.

Perhaps one of our readers will find himself or herself involved with a family that is facing a loved one's final illness and will be in a position to mention this project and ask gently for possible participation. Please keep Jan in mind. Please email me if you come across something promising. Thank you.

A Funeral in Pioneer Days

A Funeral in Pioneer Days, originally uploaded by Undertaken With Love.

Thanks to the Institute for Regional Studies at North Dakota State University for granting permission for images of pioneer funerals to be added to our home funeral collection: www.ndsu.edu/archives

This image, titled "A Funeral in Pioneer Days," carries a Creative Commons Attribution-Noncommercial-No Derivative Works 2.5 Generic license. Attribution: "Photo courtesy Fred Hultstrand History in Pictures Collection, Institute for Regional Studies, NDSU, Fargo, N.D."

I hope you'll visit our Flickr site to see our growing collection of photos of home funerals available for the free use of others for noncommercial purposes only.

Images from a Home Funeral

Flickr Site Adds Home Funeral Images

Thanks to Donna Belk and Sandy Booth of Austin, Texas, our new Flickr site now has some images related to home funerals that are available for others' free use (for noncommercial purposes, with appropriate attribution). We hope that the Flickr site will help bloggers, journalists, editors and producers working on stories about home funerals. All photos will have the permission of any families depicted prior to posting, and each photo will carry a generous Creative Commons license.

If you have photos you would like to contribute to the project, please email me for details.

Best Practices in Home Funeral Education and Consulting

Oregon's current legislation regarding licensing anyone who, for a fee, leads workshops related to final arrangements is both a risk and an opportunity for home funeral advocates.

Obviously it is a risk in several ways:

• It infringes on free speech by requiring licensing for communications regarding funerals.
• It potentially obstructs the ability of families to acquire the knowledge, skills and support to direct their own funerals without a licensed provider.
  
• The language of the Oregon bill gives the funeral board the authority to establish the standards that death care consultants would have to meet. Because there is no provision for home funeral consultants to be on the board and because the board is predominantly peopled with funeral industry insiders, this is akin to having the fox guard the hen house.

But there are several opportunities as well:

• Home funeral educators and practitioners across the country are looking at events in Oregon and Colorado and realizing that they need to form supportive networks to be better prepared for hostile legislation that may be coming to other states.
• Home funeral advocates are beginning to appreciate the value of having a watchdog group backing them. Funeral Consumers Alliance too often is castigated for being too in-your-face and strident, but home funeral advocates in Oregon and Colorado are now seeing how important it is to work with a group that is skilled in legal and legislative advocacy on behalf of funeral consumers.
• This is a wake up call that home funeral advocates should begin a candid discussion about how to promote ethical practices in home funeral advocacy. We cannot wait for states to begin passing legislation to protect funeral consumers from unethical home funeral practitioners, who may eventually enter the picture if home funerals become more popular and home funeral consulting begins to become a more lucrative occupation. I'd like to see funeral consumer and home funeral advocates collaborate on a "best practices" model for home funeral education and consultative services.

With that last point in mind, I would love to hear from readers about what some of those "best practices" might look like. Perhaps we'd need to establish separate "best practices" for legislation and for home funeral practitioners, though there would be overlap. "Best practices" could relate not only to preparation for the field, but also the pricing of services and, perhaps, the regulation of home funerals.

It concerns me greatly that almost all states have funeral boards that are peopled with a majority of industry insiders. When boards that regulate funeral goods and services are dominated by industry insiders, the tendency is for them to focus on stifling competition and protecting turf, rather than their legislatively established purposes to protect consumers and the public health. Boards like Oregon's that are populated with a majority mix of funeral home, crematory and cemetery operators are going to tend to protect that mix from outside encroachments, including home funeral advocates. Boards like North Carolina's that are populated with a majority of funeral home operators specifically are additionally going to tend to protect funeral homes from outside encroachments including independent crematories. (Yes, I'm seeing that happen here.)

I don't think we're going to succeed anytime soon in making public members (those without any direct stake in commercial funeral goods and services) the majority on these state regulatory boards. But--I throw this out for consideration--what if home funeral practitioners modeled more appropriate oversight by developing their own council (albeit without the power to license or remove licenses that state boards have through their legislative authority), with a majority of public members? How about an 11 member Home Funeral Council in the U.S. that would be composed, say, of:

6 public members (the majority) having no direct stake in any commercial death care sector
2 home funeral educators or consultants (whether they earn a living from their work or not)
1 representative from the funeral home sector
1 representative from the independent crematory sector
1 representative from the commercial cemetery sector

What if, in turn, this voluntary national home funeral council developed:

• Criteria for accrediting (not licensing) professional home funeral practitioners and/or educators? The distinction is that licensure suggests a bar that must be met before one can engage in the practice at all; accreditation suggests a bar that must be met after some experience in the practice that shows certain levels of competency and/or knowledge and/or conformity with established ethical standards.
• Policies that would support the free speech rights of families and funeral consumer advocates when it comes to such things as workshops on consumer options in death care or literature on home funerals?
• Ethical standards for home funeral practice that discourages usury or other deceptive practices that could hurt families (AKA funeral consumers)? I don't think we have an issue presently with disreputable home funeral educators; on the contrary, I think they are as a group a very pro-family bunch. But the potential exists for charletans to enter this field if it is shown to be lucrative. How do we guard against abuse?

What do you think?