A 2013 StateImpact Idaho report noted the increase in minimum wage jobs in Idaho and concluded that an increase in retirees — who often eat out, hire landscapers and housecleaning services and make use of home health aides at minimum wage — had fueled the trend. Idaho’s temperate weather, relative low cost of living, crime rate, health care and resident satisfaction make it a good place for older adults to live.
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The Idaho Labor Department reports an increase of 5 percent since 2000 in the number of Idahoans age 55 and older. This trend will surely continue in Idaho and the other top-10 Bankrate.com ranked states for retirees: Virginia, Iowa, Montana, Nebraska, Wyoming, North Dakota, Utah, Colorado and South Dakota.
But are these also good places to die?
We may not want to think about it, but planning for a good death is an important part of planning for retirement. Idaho, as it turns out, is a pretty good place to die in some ways but not in others. In the decade following a major report on death and dying in the states, Idaho passed a number of reforms aimed at improving end of life care, but some obstacles to a good death remain including broader public knowledge about end of life care, access to palliative care and knowledge about cheaper (and greener) alternatives to traditional funerals.
National surveys assess quality of life in retirement, but they tend to ignore end-of-life care and the potential for a good death. In fact, it is better to die in some places than others. In 2002, Last Acts, a national coalition supported by the Robert Wood Johnson Foundation, reported the results of a multi-year, multi-million dollar study of how people die in America, state by state [PDF]. Each state received a report card based on specific criteria such as the quality of the state’s advance directives and pain policies, deaths at home versus hospitals or nursing homes, number of hospitals with end-of-life care services, and number of doctors and nurses certified in palliative care.
Last Acts found that most states came up short in providing good end-of-life care, and most residents didn’t take full advantage of the care that is available due to lack of knowledge and awareness:
Americans often die alone in hospitals or nursing homes, in pain and attached to life support machines they may not want. And this happens despite modern medicine’s ability to ease most pain, the existence of good models of delivering supportive care, and the increasing availability of excellent end-of-life care through hospice and palliative care programs. All these services, however, are underused — in large part because in our death-denying culture, many Americans don’t want to discuss death and dying, or because many Americans don’t know about these options for good end-of-life care and thus don’t ask for them. —Last Acts report
Where people die (home, hospital or long-term care facility) and the type of care they receive at the end of their lives is less a matter of personal choice than a matter of “local doctors’ practice habits, the availability of hospice services and the proportion of open hospital beds in the community,” according to Last Acts. As might be expected, patients are more likely to use hospice services earlier in the course of their illness and less likely to die in hospitals if they live in areas where there are more hospice services and more general practitioners certified in palliative care.
Idaho received the lowest possible grade in three areas: the percentage of primary care physicians certified in palliative medicine, the strength of its state pain policies and the number of nursing home residents experiencing pain at the end of their lives. In terms of the overall care available at the end of life, no state received better than a mediocre rating, and Idaho received an average grade of D. Last Acts noted, however, that even in states with the lowest ratings, there were models of excellent care that could serve as examples for improvement elsewhere in the state.
Idaho, along with many other states, responded to the Last Acts report with a number of initiatives to improve end of life care. Idaho’s “low rating, a number of publicized cases, and personal experiences inspired many individuals and organizations to take action,” according to a 2006 report by Idaho’s Quality of Life Coalition and the Boise State University Center for the Study of Aging. The coalition conducted an extensive survey of more than 3,000 Idahoans age 35 and over. It found that Idahoans are “comfortable or somewhat comfortable” talking about death, are familiar with advance directives and have strong preferences about their end of life care. But most had not had these conversations with physicians or loved ones, nor had they completed advance directives.
View state-by-state data on hospice services and costs in the U.S. The coalition also reviewed Idaho’s progress since the 2002 report, concluding that advance directive laws had improved dramatically, and there had been a significant increase (from 39 percent to 58 percent) in the number of hospitals offering pain management programs. The percentage of people dying at home versus nursing homes or hospitals has remained about the same, however, as has the percentage of nursing home patients living in persistent pain. The coalition concluded that Idaho still has to work on providing a better death. Specifically, the state needed to improve pain policies, increase the availability of palliative care and better manage pain in nursing homes.
INCREASE IN HOSPICE AND PALLIATIVE CARE
Since the Last Acts report was published, the number of hospice organizations, particularly for-profit hospices, has increased dramatically across the United States. The number of people using hospice services has also increased, up from 19 percent in 1999 to 43 percent in 2009, according to a 2012 federal report, Older Americans (pdf). In Idaho, the Quality of Life Coalition found that most Idahoans are familiar with hospice and would consider using it at the end of life but need more information. They believe that the end of life has meaning and value and they want to die at home, saying goodbye to loved ones and sharing time, gifts and wisdom. In short, they want to experience a good death.
Some states have more hospice organizations than others. According to the National Hospice and Palliative Care Organization, the highest number of Medicare-certified hospices can be found in California, Texas and Pennsylvania though Alaska, West Virginia, Mississippi and Oklahoma have more facilities per capita. The city of Boise, with 30 non-profit and for-profit organizations listed in the yellow pages, has an unusually high number of hospices for a single area and Idaho, with 2.76 facilities per 100,000 people is in the top 10 states for per capita hospice providers.
The rise in hospice providers means that patients and their families need to research these organizations carefully. The Huffington Post recently reported that for-profit hospices charged Medicare 29 percent more per patient than nonprofits and many have been accused of billing fraud. Yet, despite these charges, federal regulators do not inspect and oversee hospices as carefully as they do hospitals and nursing homes. In its recent investigative report, HuffPost found that over a recent three-year period, 55 percent of all U.S. hospices were cited for a violation, many care related; a few providers were cited for more than 70 violations each.
Families searching for a hospice should follow several criteria for selecting one. Begin by asking a trusted doctor for recommendations; then research online databases, such as the National Association for Home Care and Hospice and the International Hospice Care Directory. Determine if the organization has been accredited by a nationally recognized body and for how long, make sure caregivers are licensed and bonded and ask the organization itself to provide references from local health care professionals. The Better Business Bureau, local Consumer Bureau or the State Attorney General’s Office may track hospice services as well.
PLAN AHEAD FOR A GOOD DEATH
Most Americans fail to plan ahead for death. According to a CBS news poll, 54 percent of Americans surveyed had not spent much or any time thinking about their own death. Forty-five years ago, Elisabeth Kübler-Ross, whose research on death and dying initiated the hospice movement in America, made a case for planning ahead in her On Death and Dying: “A healthier, stronger individual can deal with [dying] better and is less frightened by oncoming death when it is still ‘miles away’ than when it ‘is right in front of the door…’ It is also easier for the family to discuss such matters in times of relative health and well-being and arrange for financial security for the children and others while the head of the household is still functioning.” As a psychiatrist, Kübler-Ross identified our fear of death and related defenses, along with the resistance of health care practitioners, as the reason for our unwillingness to plan ahead.
Yet a CBS News poll in April found that most Americans surveyed — 65 percent — believe there is such a thing as a “good death,” and they want it for themselves and their loved ones. Researchers tell us that a good death begins long before the actual dying process with adequate coverage of health care costs by private or public insurers and an Advance Directive, which includes a living will, a durable power of attorney and, in Idaho, a Physician Order for Scope of Treatment (POST). The latter summarizes treatment wishes and is recognized in the state as a Do Not Resuscitate order. No one is too young to complete an Advance Directive, according to the Idaho Quality of Life Coalition: “While it is difficult to admit, all of us are just an accident or sudden, unexpected illness away from needing an advance directive. By putting your wishes and preferences in writing now, it can minimize the stress and burden to your loved ones.”
There are many aspects of a good death that can be planned for in advance. In her book A Good Death: The New American Search to Reshape the End of Life, author Marilyn Webb says a good death involves health care providers who are well trained in palliative (comfort) care and who can provide it wherever the patient wishes to die. Open, ongoing communication among doctors, patients and families well in advance of the terminal stage is an essential part of such care, and the patient retains decision-making powers throughout the illness. The patient receives sophisticated pain and symptom control to minimize suffering and maximize quality of life.
In a good death, emotional and spiritual support is made available, not only to the patient, but also to family and friends throughout the dying process. This kind of support, a hallmark of hospice and palliative care, helps people live well under the shadow of death. As Webb explains, a good death “pulls people together and leaves a legacy of peace.” A bad death separates people and leaves “a legacy of grief, anger and pain that can continue across many generations.”
Unfortunately, few actually experience a good death. Although most people say they want to die at home, only 24 percent of deaths in America occur at home. Most Americans age 65 and over die in hospitals or nursing homes, where staff sometimes lack experience in managing the pain and suffering of terminal patients. About 59 percent of deaths among older Americans occur in hospitals — where patients are subject to aggressive and expensive medical procedures in critical or intensive care units — or in nursing homes, where they often die alone and in pain. Gender, race and cultural factors influence where you die: women, especially white women, are more likely to die in nursing homes or other long-term care facilities, while blacks are more likely to die in hospitals according to agingstats.gov.
Resources on a Good Death
A GOOD FUNERAL
A good death ought to be followed by a good funeral, one that reflects the individuality of the deceased and that helps the living accept death. Caitlin Doughty, a 29-year-old Los Angeles mortician, is in the vanguard of the “death positive” movement. Inspired by historical concepts of the good death, including the medieval Ars Moriendi (Art of Dying), Doughty founded The Order of The Good Death, a collective of death professionals, academics and artists who are reimagining death, dying and traditional funeral practices. Their mission is to include death in the cultural conversation by encouraging Americans to see that “death itself is natural but the death anxiety and terror of modern culture are not.” In her YouTube videos “Ask a Mortician,” Doughty demystifies funeral practices and promotes creative alternatives.
Sarah Wambold contributes to the Order’s blog by chronicling the development of her own funeral home, Continuum, in Austin, Texas. Wambold is reimagining the traditional funeral home as a dual space for the living and the dead. Her home will function as an art gallery and performance space. She and Doughty support alternative funeral practices such as avoiding embalming fluids and encouraging families and communities to participate in planning and performing funeral services.
Doughty and Wambold see funeral directors as useful but unnecessary. They support those who want to plan their own funerals without the services of a funeral director. Idaho is unusual in having at least two death midwives who assist families in creating home funerals. Several other states that are highly rated for retirees, including Wyoming, Nebraska, North Dakota, South Dakota and Virginia, have no certified home funeral guides or death midwives to assist with home burials, according to homefuneraldirectory.com.
Kate Riley and Susan Randall, death midwives in Boise, were trained by Jerrigrace Lyons, minister and director of Final Passages, a California-based organization founded in 1995 to provide education and training to prepare and support individuals and communities in carrying out home or family-directed funerals. Final Passages was developed in response to Americans’ need to come to terms with death in more peaceful, natural ways, especially among aging baby boomers who are seeking alternatives to traditional funerals:
Old ways of thinking about after-death care are beginning to be challenged. We have become a generation of people who are seeking personal, relevant and meaningful conditions in our lives yet we have no experience with death. Although individuals may express apprehension about taking charge of a home or family-directed funeral, . . . unsettled feelings seem to dissolve when we confront the unknown and are given the opportunity to conquer our fears and misconceptions. — finalpassages.org
Home funerals and other alternative burial practices are usually cheaper than traditional funerals. Funeral and burial costs average $8,000 nationwide, and the cost of a casket is $2,000 at most funeral homes. But a lifetime membership in the Federal Consumers Alliance of Idaho, which costs $35, entitles members to simpler, more affordable options at a fraction of that cost, including cremation for $730 or burial at a participating mortuary for $755, if the member provides a casket. Caskets can be homemade or purchased online from Costco or other sources. Green burials, which conserve natural resources, limit carbon emissions, support worker health and preserve natural habitat, are also cost effective. Caskets or shrouds that are biodegradable are usually cheaper than traditional caskets and green burials bypass other expenses such as embalming, limousines, vaults and headstone carving, according to sevenponds.com.
Death midwives say that home funerals are an opportunity to engage in “conscious dying” — being aware and informed about the dying process and making conscious decisions about what you want to happen at the end. A big part of conscious dying is being present for the experience.
Thomas Lynch, a third-generation funeral director in Michigan, agrees that it is important for the living to “show up” for death. He promotes conscious living and dying in his book The Good Funeral: Death, Grief and the Community of Care, co-written with theologian Thomas Long. Although they represent different generations in the funeral industry, Lynch and Long, like Doughty and Wambold, promote a more positive view of death. They encourage us to consider what might be good about death, grief and funerals.
Lynch believes that the best way to deal with the idea of death — which most of us fear and avoid — is by dealing with our dead. Long agrees on the grounds of religious tradition: “We will learn wisdom about how to live when we care lovingly and reverently for the bodies of the dead.” Lynch’s “good funeral” would include the kind of services that Wambold, Riley and Randall promote. It brings people together and reminds us that death is one of life’s “most teachable moments.”
Riley, the Boise death midwife, illustrates this point by describing the things she has learned from participating in home funerals, not the least of which is overcoming her own fear of death. “There are so many gifts that come from showing up,” she says. “Anywhere can be a good place to die if you’ve done everything you possibly can to plan a good death.”
The views and opinions expressed here are those of the writer and do not necessarily reflect those of Boise State University, the Center for Idaho History and Politics, or the School of Public Service.