Our changing ways of deathFrom hospice care to celebrations of life, Americans are reconsidering how we manage the inevitable Death We cannot escape it, yet many of us — here in the United States, anyway — attempt a deliberate, delicate ignorance of it. Even our language works to maintain a euphemism-laden distance from its reality. People don't die, they “pass away” or “expire.” The dead are “laid to rest,” not buried, in a “casket,” not a coffin. And we rely heavily on the familiarity of well-tested ritual to ease this most painful aspect of life. Still, how we deal with it is an ever-changing process, say those who have studied it, who chronicle it, and who help us get through it. How we say goodbye Teresa Reed was determined to keep a close eye on her mother, Marjorie Haney. For much of 2002, that meant burning up Interstate 81 on frequent trips between Roanoke and Page County. In April of that year, Haney lost her husband, Harry, after more than 50 years of marriage. She also was dealing emotionally with the recent death of a son, not to mention struggling with her own physical illnesses. Pulmonary disease and congestive heart failure left her constantly out of breath. Even though Haney was fanatical about preparing healthy foods, Reed noticed her mother's health begin to decline dramatically after her father's death. “She had so much company,” Reed said. “She’d say, ‘Can I fix you something to eat?’ She was very selfless. ... But that was an excuse for her not to eat, or to take her medicine.” By early the next year, 2003, Reed concluded that her 5-foot-tall mother — down to 73 pounds and making frequent emergency room visits for breathing difficulties — was going to need closer, constant care. “I took a hostage,” Reed says with a laugh. “I brought her down under the pretense of trying to get her built back up so she could be independent.” After arriving near the first of April, Haney got an appointment with Dr. Marc Nevin, a Reed family friend. “He was so compassionate. ... He asked her what her plans were, what she would like to achieve, what did she not want to do,” Reed said. The latter included a do-not-resuscitate order Haney had already filled out. Nevin was honest with Haney, Reed said. Her mother likely would not be able to live independently again, he said, but “we will keep you as comfortable as we can.” Over the next couple of months, Haney gained 20 pounds and came to call the Reeds’ home her own. By fall, however, her respiratory problems worsened. In November, she struggled with a bacterial infection that defied treatment and her heart became more enlarged. Reed was starting to feel that as hard as she tried, she couldn't keep up with the demands of her mother's treatment. Nevin was honest again. “I think it’s time to get some help. ... How about if I call hospice?” Her mother “levitated off the bed,” Reed said. Nevin quickly added, “That doesn't mean what you think it means.” Although hospices’ mission is to offer comfort to those who have an estimated six months or less to live, “I have hospice patients who live for years,” Nevin said. “They'll make you comfortable and see that you have help. You decide which hospice you want and let’s contact them immediately.” Reed knew about Good Samaritan Hospice, a Christian-based agency, through friends. A nurse came the next day, quickly sized up needs and got on the phone. In a half-hour she had arranged for a hospital-type bed and other supplies to make Haney comfortable at home. Reed said her mother “was a little scared,” but by that evening her condition had already eased. “They were the most professional group of medical people I've ever been exposed to. They knew her drugs, her condition. They knew what to do.” The nurse told the family what to expect when death was close just about a week later, and they all gathered around to sit with her as the end neared. “I told her it was OK to go,” Reed said. Early on the morning of Dec. 1, Haney died, comfortably, in her own bed. No longer a surprise A century ago, the leading causes of death were “infectious diseases, accidents and childbirth,” said Sue Moore, executive director of Good Samaritan Hospice, one of four hospice programs in the Roanoke Valley. Death usually came without warning or preparation. “One hundred years later, the leading causes of death are heart disease, cancer and stroke,” she said. “Death is not sudden any more.” With those often more-drawn-out causes of death has developed a medical infrastructure “bent on cure,” she pointed out. Medical practitioners, and the families of the ill, often are determined to keep the dying person alive as long as possible. That's a reflection of the fact that “what we say we want is not the way we act,” Moore said. When asked, people consistently say they don’t want to artificially prolong their lives if they're facing a fatal illness. But there is “tremendous disconnect” between that and many people's experience, she said. There are three fears most people cite about death: “being a burden, pain and dying alone,” Moore said. Hospice can help address all three, she said. Hospice helps relieve the caretaking responsibilities of family, and is nearly always covered by insurance or Medicare. Hospice nurses are experts in pain relief, which they do effectively “98 percent of the time,” Moore said. “Virginia's advance medical directive allows one to consent to pain medication even if it hastens death,” she said. “We do not do that to cause death,” she quickly added, but will do everything possible to relieve pain. And while hospice care is not about curing, “that doesn't mean we don’t pray for that right along with the patients.” The most difficult thing to deal with is “spiritual pain,” she said, in which people are struggling with issues of forgiveness or hate, for example. “We've got to learn to live knowing we are going to die. ... Society helps perpetuate a myth about immortality,” she said, that makes it difficult for people to even talk about death. That delayed acceptance of the inevitable is one reason a fourth of all Good Samaritan patients live only a week after coming under hospice care. “We're grateful for the opportunity to help them,” Moore said, “but we could do so much more if we had time.” Creating a consumer climate Isabel Berney knows how hard it is to get people to talk about death — especially their own or their loved ones’. Since helping found the Funeral Consumers Alliance of the Virginia Blue Ridge three years ago, she takes to the stump wherever she can — in front of church congregations, civic groups, fraternal organizations — to talk about funeral planning and options. “We encourage people to talk” about their wishes and their plans, she said. “I feel that’s our greatest service.” The Blacksburg-based alliance is a membership organization devoted to informing the public about funeral options, publicizing the fees charged by funeral homes and cemeteries and minimizing costs of burial, cremation and other body disposition services. “We do not want to be adversarial” with funeral homes or cemeteries, Berney said. “We’re not trying to put anybody out of business, just to provide a service.” Members pay a suggested donation of $30 per household, or $25 as an individual, for the first year, then $15 a year thereafter. They receive a packet of information on such things as cremation, burial choices, organ or body donation, cemetery options and consumer rights. Literature reminds people to have advance medical directives and medical power of attorney designated to someone they trust. Perhaps most importantly, there is a plastic-jacketed packet designed to be left in the refrigerator — where somebody is bound to look after seeing the informative refrigerator magnet outside. In the packet, members can leave final instructions on such matters as their funeral service or lack of one, disposition of remains, location of their will and instructions for dealing with pets. It also includes personal information for an obituary notice and a list of people who should be contacted. Members also get the alliance’s latest survey of funeral home and cemetery price lists. A cemetery list was recently published, and a new funeral home price list is being compiled now, Berney said, to replace one that that is two years old. That survey, which was reviewed by staff of the national Funeral Consumer’s Alliance, found that only three of the 21 funeral home companies it covered were in full compliance with Federal Trade Commission rules for price disclosures, Berney said. The alliance surveyed funeral homes in Montgomery, Giles, Floyd, Pulaski and Roanoke counties, Radford, Roanoke and Salem. It found that the average cost of a traditional funeral, using the funeral homes' cheapest caskets, including embalming, viewing and a graveside service, was about $3,700. The total can be significantly higher, however. For instance, that average does not include cemetery-imposed fees for such things as grave opening and liners. Also, casket prices vary from a few hundred dollars to several thousand and can considerably increase the cost. Average cost for a no-frills direct cremation — meaning no body preparation, embalming, casket, viewing or storage — was about $1,300. While many of the alliance's 100 members may be advocates of simplified funerals and cremation, Berney said the organization takes no position on individuals’ preferences. “We just want to make sure people understand what they are paying for,” she said. A series of pamphlets on topics such as “How to Plan a Memorial Service,” “Eco-Friendly Death and Funeral Choices” and “Common Funeral Myths” are available from the alliance, as well as information on “nontraditional” options. “Virginia has no law saying you can’t be buried in your back yard,” for instance, Berney said. Some localities, including Montgomery County, do have regulations, such as how near a grave can be to a water source. And there is no requirement that a funeral director be involved at all, she said, as long as a family doctor provides the death certificate. The FTC formulated its so-called “funeral rule” in 1984, requiring full price disclosure, in part because of a best-seller called “The American Way of Death,” by Jessica Mitford. Mitford charged that funeral homes across the country routinely gouged consumers by hiding charges for services they didn’t need, didn’t want and sometimes didn’t get. Defending their trade Mitford’s criticisms stung honest funeral directors, but Sammy Oakey says now that the FTC's rules turned out to be a good thing for the industry. By breaking down prices, “customers see how much the casket is,” as well as each of the other elements of the services they're buying,” said Oakey, president and owner of Oakey's Funeral Service & Crematory. “When they see all that goes into a funeral service” they are less likely to be upset or surprised by the cost. Funerals continue to be among the largest single expenditures American families make, after houses, automobiles and college educations. And there is no shortage of critics of their practices and the prices they charge. Many, however, such as Ernest Morgan, author of “Dealing Creatively With Death,” attribute the expensiveness more to huge overhead than greed. “Funeral directors who average as low as one funeral a week and have no other business must charge the overhead of days and weeks of idleness to a single funeral,” Morgan writes. “This in and of itself is not illegal or unethical, but it creates a serious problem for consumers.” Mortuaries also have taken a public relations hit from revelations such as the discovery two years ago of a Georgia crematorium where the bodies had not been burned but dumped in the woods. “There are some bad eggs out there,” Oakey said, “but on the whole, I find the profession has a lot of integrity and ethics. That it is filled with caring and compassion.” Many funeral homes occasionally provide free funerals for indigent people, for instance. While all funeral homes are in business to make money, the Rev. Dwight Steele Sr. believes most want to do the right thing by their customers. Steele is the pastor of Pilgrim Baptist Church and co-owner of Serenity Funeral Home, one of the newest in the Roanoke Valley. Serenity, which also has a chapel in Portsmouth, opened its Roanoke facility in 1996. Catering to a primarily black clientele, Steele said he “felt people needed a choice,” and he was determined to provide affordable funerals. While funeral homes are required to itemize all funeral costs, they may still offer packages of services. “We found that a lot of people don't have more than $2,000 to $3,000 in insurance to cover their funeral expenses,” Steele said. So, his funeral home offers a $2,495 traditional funeral with a metal casket. “People still get total service,” he said. “We’ve done real well with that.” Serenity, one of the three funeral homes the Funeral Consumers Alliance survey showed to be in full compliance with FTC price-disclosure regulations, also offered one of the lowest-cost direct cremations. “I see this as an extension of my ministry,” Steele said. The funeral home is doing so well that it has begun a 5,000-square-foot addition that will include a chapel to seat 300 as well as its own crematory. It was anticipation of that kind of growth that set off a wave of funeral home consolidation in the 1980s and 1990s. Large national chains bought up numerous family-owned businesses, including several in estern Virginia, in anticipation of a spike in business as baby boomers aged and started to die. That hasn’t happened yet, and some of those companies have struggled. For now, “baby boomers, for the most part, are making decisions for their parents' funerals,” Oakey said. “They have a different set of ideals” governing how they think those funerals should be conducted. “It’s not disrespectful, but it is different.” “More and more families are creating an event,” Oakey said. “Most funerals reflect some type of celebration of life. ... It’s such a change from the somber, dark times of the past.” Bodies are no longer always clothed in suits and Sunday dresses. Families now designate jeans or even pajamas for their loved ones. Visitations now routinely include “conversation stimulants” that include displays on tables and “memory boards” of photos and other memorabilia. Families may display their Bible, a set of golf clubs, a favorite set of dishes, a treasured quilt or a fishing rod, Oakey said. A graveside service might include the release of a white bird or butterflies. Caskets and cremation urns are adorned with personalized touches, from college logos to emblems of angels, flags and, for the avid fisherman, even a trout. Caskets are sometimes colorful, with many models featuring built-in drawers in which to place keepsake items for burial with a loved one. Steele also is seeing more family participation in the funeral service itself. “They want to speak about the good old days, about the happy times.” About half of Oakey’s services are held in one of its funeral-home chapels, Oakey said. The rest are split between the graveside or a church. “People have a great respect for the dead, and the traditions of death,” Oakey said, which means, among other things, that even if they don’t participate in a religious congregation they still want clergy to officiate. “People quite often tell us, ‘We need to get a minister, but we don’t have one.’ They still feel that need even if they don’t have a close relationship to God,” Oakey said. While the tone of funerals has changed significantly in recent years, that doesn’t mean there is no more crying. Even those who work with funerals every day can be touched by particular circumstances. “I can’t look at a child or an infant without shedding a few myself,” Oakey said. “I know some crusty old guys in the business who say, ‘I’ve never shed a tear.’ I think they’re in the wrong business.” Nothing to fear After the funeral home workers had come to pick up her mother’s body, and the hospice nurses had left, Teresa Reed had a chance to sit and think. “The house was so peaceful that morning,” she said. There were some tears, though, as there still are sometimes when she thinks of that day. “I got in bed with her and laid down beside her. Her breathing changed, became really smooth. “I gave her permission to go. I just knew she needed to hear that. ... I knew she was saying goodbye. “It was not anything to be afraid of at all.” Roanoke Valley End of Life Care Partnership P.O. Box 18238 Hospices Adventa Hospice, 378–5200 Funeral Consumers Alliance of the Virginia Blue Ridge P.O. Box 10082 Cody Lowe FCAVBR Home Page |