Is dying at home overrated? That’s the provocative subtitle from a New York Times article that first came to our attention a few years back. In survey after survey, most Americans say they prefer to die in their own homes, and conventional wisdom says that the familiar environment of home and family is the optimum place to pass away. But what if conventional wisdom is wrong?
As the article points out, when it comes to the end of life, both home and hospital have their drawbacks, so perhaps it’s time for families to feel more freedom to choose the option that’s best for them. This is such an important topic for families to talk about that we’re bringing it back on the AgingOptions blog for another look.
Dying at Home Brings Complex Realities and Unintended Consequences
This New York Times article that appeared in 2019 was written by Dr. Richard Leiter, who works at Dana-Farber Cancer Institute. We’re not certain we agree with everything the article says but we think it raises some critically important points. Dr. Leiter writes, “As a palliative care physician, I regularly ask my patients, or their family members, where they want to die. Having asked this of hundreds of patients, I have come to expect most will tell me that they want to be at home. But recently I have struggled with the complex realities of dying at home, and the unintended consequences of our making it a societal priority.”
Leiter’s observations about where people prefer to pass away is borne out by research. One fact sheet from Stanford University School of Medicine says that 80 percent of people would opt to breathe their last in the familiar surroundings of home, but only about 20 percent do: the rest pass away in hospitals (60 percent) and nursing homes (20 percent). As the New York Times article suggests, “It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment.”
The Reality of Caregiving Leaves Families Unprepared
But when the reality of caregiving sets in, many families of those in their last days find themselves unprepared. “Informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll.” Dr. Leiter calls this “the unacknowledged caregiving burden for family and friends.”
Dying at Home: Doctors are Discovering the Importance of Quality of Life, Even at the End
There seems to be a subtle shift in how the medical community treats dying, Dr. Leiter’s article implies: doctors may be getting wiser about the value of keeping terminally ill patients alive at all costs, largely because dying patients are starting to insist on a better quality of life during their last days. “While there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors and patients now prefer a less intensive approach when time is short,” he writes.
Hospice enrollment is on the increase, but hospice is not a panacea: doctors can’t predict how long hospice care will be required, so family caregivers are often still required to take significant time away from work or other family duties, a burden that can be physically and emotional taxing, and even financially prohibitive.
Some Terminal Patients Find Institutional Care “More Comforting”
In spite of the generally accepted view that “everyone prefers to pass away at home,” Dr. Leiter’s New York Times article suggests that view is not entirely accurate. “I frequently detect ambivalence in patients who tell me they want to die at home,” he says. Some patients find hospital care more comforting, because reliable nursing care is close at hand and medications and IVs are quickly accessible, unlike with home care.
There are also emotional reasons people may not want to breathe their last at home: they may want to protect children from the experience, or they may have difficult relationships with family members that makes “home” less appealing. “We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital,” Dr. Leiter says. “And yet we in palliative care often view these cases as failures…Did the family panic? Something must have gone wrong.”
Dying at Home vs. in the Hospital – Each Has Its Own Trade-Offs
Dr. Leiter’s New York Times analysis may cast doubt on the universal wisdom of dying at home, but he’s quick to point out that dying in the hospital has its own trade-offs. “As much as we try, it’s nearly impossible to alter the health care system’s usual rhythms,” he says. “Overflowing hospitals often lack the flexibility to give dying patients the privacy of a single room. We cannot guarantee that they will not be woken up by the squeal of a malfunctioning IV pump or the chaos of clinicians scrambling to help another patient. Family and friends may live hundreds of miles away, preventing them from being with their loved ones at critical moments.”
He adds that inpatient hospice facilities, which represent a third option between home and hospital, may feel more homelike, but insurance providers including Medicare generally restrict eligibility to patients in the last few days of life or those with “severe, uncontrolled symptoms that would otherwise require hospitalization.” In other words, families of those in life’s final stages face limited options.
Planning for Death is Part of Planning for Life
Dr. Leiter’s article concludes with the observation that how someone dies may be just as important as where they die. “When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience for many of our society’s sickest and most vulnerable.” While doctors need to honor their patients’ preferences whenever possible, they also need to be more forthcoming about the difficult trade-offs each choice entails.
This is yet another example of the need for families to plan ahead, and even have heart to heart conversations about topics that can get emotional. We suggest you talk to an expert in home care to see what services are available. Also, we urge you to contact us at AgingOptions and ask about having us host a family conference for you in one of our offices. These can be a powerful way for families to better understand one another concerning a wide range of topics related to aging, caregiving and estate planning.
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(originally reported at www.nytimes.com)