When most of us plan for our retirement, we typically concentrate on how we want to live. However, at some point it’s important that we also plan how – and where – we would prefer to die. Surveys shown a very large majority of Americans want to take their last breath at home, in their own bed, surrounded by loved ones. If that’s so, why do so few manage it?
Why Do So Few Die at Home?
This article on the topic appeared last month 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, only about 20 percent actually do pass away at home: most (about 60 percent) will die in the hospital and another 20 percent in a nursing home. There are many reasons for this disconnect between our hopes and the harsh reality, but we at AgingOptions think the biggest problem is the same one that plagues so many aspects of American retirement – failure to plan ahead. We’ll have more to say on this in a moment.
According to NextAvenue, there are a host of issues that make dying at home a major challenge. First, the U.S. is plagued with a severe shortage of professional home caregivers. Then there’s cost: hiring high-quality help in the home is an expense beyond the means of many retirees and their families. Lifestyle also enters into the picture, because people today are often so busy with their own work and family lives that, despite good intentions, they lack the time to pitch in to help a family member provide 24-hour care. But ironically, one of the more surprising reasons why it’s getting harder for people to die at home has to do with the medical advances of recent decades. People are living longer – and as they approach death, they are actually sicker, according to experts quoted in the NextAvenue article.
Multiple Issues Make Dying at Home Challenging
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.
“‘People these days are more ill when they’re dying,’ said Dr. Cory Ingram, director of palliative medicine at the Mayo Clinic. ‘Before, there might have been one [physical] problem; now there are multiple issues that require more nursing care. People have more sophisticated care needs than they did, say, 20 years ago.’” These compounding needs make home care much more challenging, he infers.
(The NextAvenue article didn’t mention it but we suspect another factor making dying at home less common involves shifting demographics. The dramatic rise in two-income households since World War II meant no one was home to care for Grandma, and as adult children moved farther away from the family home to pursue education and careers, they were no longer available to assist. Average family size has also gotten smaller. The notion of the extended family unit providing in-home care to an aging relative in his or her final stages of life became a thing of the past.)
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, 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.”
Is Dying at Home Only for the Well-to-Do?
The conclusion in the NextAvenue article is sobering. Faced with costly alternatives and a shortage of family caregivers – and, we would add, inadequate planning – even fewer people in the future seem 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.” How ironic is that?
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)