Is Dying at Home Overrated?

Summary from Hospice News Today, 9/3/19.

Is Dying at Home Overrated?
By Richard Leiter, M.D.
New York Times
September 3, 2019

“If time were short, where would you want to be?” As a palliative care physician, I regularly ask my patients, or their family members, where they want to die. The specific language I use depends on what they know, what they want to know and how they process information, but the basic premise is the same. 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. It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment. … Rates of hospice enrollment have increased and the home has re-emerged as a place to die, not only preferred by patients and families but also heavily recommended by clinicians, especially in my field. … The system is imperfect, though. Unless a family has the significant resources necessary to hire aides or nurses, 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. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members. Complicating matters, I frequently detect ambivalence in patients who tell me they want to die at home. Some are comforted by the reliability of the nursing care and easier accessibility of IV medications in the hospital. For others, dying at home may not be their top priority. … We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital. And yet we in palliative care often view these cases as failures. … I wonder, though, if we’ve adopted the wrong approach. … To be sure, dying in the hospital has its own trade-offs. … While an inpatient hospice facility, which represents a third option, can provide hospital-level care in more of a homelike environment, Medicare and other insurance providers have set a high threshold for the few available beds. … The quality and consistency of end-of-life care are not where they need to be. To ensure that all people receive the same compassionate care that my grandmother did, we need to focus not only on where, but also on how 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. Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest—with ourselves and our patients—about the difficult trade-offs these choices entail.

[Editor’s Note: The author is a palliative care physician and researcher at the Dana-Farber Cancer Institute.]