Last week here on the AgingOptions blog, we ran this story based on a NextAvenue article describing a damning statistic. According to surveys, roughly 80 percent of Americans say they would prefer to pass away in the familiar comfort of their own home, yet only about 20 percent actually succeed in taking their last breath there. The rest die in a hospital or nursing home.
Because this is such a provocative topic – not to mention a textbook example of the general failure of most people to plan for the future they desire – we felt it would be a good idea to revisit the issue of dying at home. In doing a bit more research, we did find at least one state, California, where the statistics regarding dying at home are seeing marked improvement. But before we share that news, and hear from Rajiv Nagaich on the subject, let’s review why the NextAvenue author claims this situation exists in the first place.
Why Do So Few Die at Home?
The original article that was the source of last week’s story appeared here on the NextAvenue website. It asked the question, “How realistic is dying at home?” According to the article, a 2018 Stanford University School of Medicine study confirmed the fact that about 80 percent of Americans would prefer to die at home. Instead, most (about 60 percent) will die in the hospital and another 20 percent in a nursing home. The NextAvenue piece says there are a host of issues that make dying at home a major challenge:
- A severe shortage of professional home caregivers
- The prohibitively high cost of hiring in-home workers
- Busy lifestyles that rob people of the time to help provide 24-hour care
- Medical advances that allow people to live longer, but become sicker as they age, making home care practically impossible.
Dying at Home Was the Norm Until Fairly Recently
As with childbirth, which in the past almost always happened at home, there was a time in our recent history when dying at home was the norm, not the exception, says NextAvenue. “In the course of human events, dying in hospitals or nursing homes is a relatively recent phenomenon.” Paradoxically, it was the medical advances of the 20th and 21st centuries that helped change this picture. In the words of one health care educator, “all these new [medical] developments created an expectation that doctors could fix anything. So more people went into hospitals because they wanted something fixed.” Advances in medical science kept lengthening human life expectancy, and as our years increased, so did the extent of our ailments. Dying at home became more and more complicated and less and less possible.
Other Cultures Support Dying at Home
As Rajiv Nagaich of AgingOptions has frequently noted, this decline in home care for the dying doesn’t seem to be as notable in other countries. NextAvenue spoke with a Harvard expert on palliative care who recently traveled to Japan and New Zealand. “I get the sense that in other countries, the resources that are available at home are larger [and] more extensive,” she said. Great Britain, where the hospice movement started in the 1960s, also offers much more robust services than the U.S., assigning case managers and several nurses to home visitation teams. By contrast, hospice care in the U.S. can be costly and services restricted. (Among other limitations, Medicare’s hospice coverage is limited to those with no more than six months of life expectancy.) According to the Stanford University report cited earlier, “Hospices may refuse to admit a patient if there is inadequate support at home to provide care. Hospice was developed to assist families to care for patients, not to provide 24-hour, around-the-clock care at home. Hospices vary in their willingness to care for patients with limited home support.”
Hopeful Signs of Change from California
The Golden State tends to be something of a national trend-setter, and it seems that applies in the area of where people pass away. This article from the Sacramento Bee reported in late December that “the proportion of elderly Californians dying at home has jumped sharply over the last two decades.” According to statistics from the CDC, “About 36 percent of California’s elderly who died last year did so at home, up from less than 25 percent in 1999. At the same time, the proportion of inpatient deaths at medical facilities and nursing homes has fallen.” Besides personal preference, the Bee article credits the rise in the number of home health and personal care workers, which are among the fastest growing occupations in California.
But although the numbers are improving, the bad news remains: thousands of Californians who would rather end their days at home are still unable to do so.
Is Dying at Home Only for the Well-to-Do? No, Says Rajiv!
The conclusion in the NextAvenue article really set our teeth on edge. Faced with costly alternatives and a shortage of family caregivers, the author says, fewer and fewer people appear destined to experience a peaceful passing in familiar surroundings. As one expert quoted in the article put it, “It seems like we’re getting to the point that dying at home is something only privileged people can do.” According to Rajiv Nagaich, that’s simply unacceptable.
“The article is a reflection of the defeatist attitude professionals take,” he says. “On one hand the author concludes that boomers in America will not be able to pass away in their own home. On the other hand, the author cites England as being a country where hospice provides more robust services aimed at helping people age at home. The obvious missing piece, therefore, is the robust set of services.” But instead of waiting for “the system” to come to its senses, “Why not do our own planning and include those services?”
The Challenge: “You Have to Plan Differently”
Here at AgingOptions, we say emphatically that it is very definitely possible for you to age, and eventually to pass away, in your own home – but you have to plan differently. “Traditional planners will caution you that it is NOT possible,” says Rajiv, “but we will challenge you that not only is it possible, it is already happening in many homes in America. We just do not talk about it.” First, your plan to age in place will necessitate that you have money available in the estate for in-home help, either utilizing long-term care insurance or funds from VA or Medicaid programs (unless your estate is worth $2 million or more). Second, your plan must require your personal agents to work with home care and hospice providers to ensure you receive the services necessary to allow you to spend your last days as you wish.
Our view at AgingOptions is that, like retirement planning, the question of how and where one wishes to pass away is an issue that involves finances, medical care, legal preparation and housing, not to mention your family. Money alone absolutely will not guarantee that your wishes will be honored – just consider the celebrities like the late Casey Kasem and still-living comedian Tim Conway, and others whose late-in-life care became such a tragic spectacle. We hope you’ll use this article as a catalyst to do two very important things in 2019: contact AgingOptions about scheduling a family conference, and bring your adult children to a free AgingOptions LifePlanning Seminar, where Rajiv Nagaich will open your eyes to a better way to plan for all aspects of your retirement future. You’ll find a calendar of upcoming seminars here, along with convenient online registration. It will be our pleasure to meet you!
(originally reported at www.nextavenue.org and www.sacbee.com)