Abstract
“Research suggests that many patients may prefer to die away from their homes, knowing their needs will be cared for and their loved ones will not have to live with the memory of their final days in the living room.”
Dear Editor:
“Johnny is coming home, he ain't goin’ nowhere else.”
So started my consult on Johnny, a 54-year-old man with widely metastatic colon cancer, too sick for chemotherapy, and too sick to live much longer.
I suggested meeting in a larger room where we could talk much easier, as Johnny was delirious and yelling and picking at the air, and young children were running around the room screaming, but the 15-plus family members wanted to meet in his room, for as his wife said, “We ain't got nothin’ to hide from him.” So we talked amid the yelling and picking and running and screaming. I proposed inpatient hospice for management of the delirium, and then if possible, transitioning Johnny home. Johnny's wife shook her head and tightened her jaw.
“He wants to die at home, he told me that. He's comin’ home, he ain't goin’ nowhere else.”
It was clearly important for the family to bring Johnny home, so I agreed to get him home as soon as possible, with hospice supplying support.
Nevertheless, I worried about Johnny dying at home, in part due to the young children, but also in part due to the caregivers' seeming reluctance to perform even the most basic duties of care. No one offered to respond to Johnny's repeated requests for a drink of water, to get out of bed, or to sit up. Instead, they called for the nurse. In addition, two family members voiced concern about the consequences of Johnny dying at home. It's a legitimate concern, as the haunting memories of death can trouble the bereaved for life. Still, Johnny's wife was resolute—she was bringing him home. That afternoon, a transport ambulance came, placed Johnny on a gurney, and disappeared down the hall, his wife trailing behind.
In my 30 years of medicine I have seen many people who initially go home, only to end up dying elsewhere. The family becomes overwhelmed, there are second thoughts about a death at home, or the plan implodes in a pile of repeated calls to nursing staff who then determine home is not the best environment.
Dr. James Tulsky, writing in Duke Magazine, described a survey that he participated in several years ago. Nearly 1500 patients, family members, and health care professionals were asked to rank nine attributes of a good death. The results were somewhat surprising:
1. resolving conflicts 2. feeling life was meaningful 3. getting finances in order 4. having one's treatment preferences followed 5. being mentally aware 6. presence of family 7. being at peace with God 8. freedom from pain 9. dying at home
1
Remarkably, dying at home came in last, supporting the contention that dying at home does not seem to be a requisite for a good death, and in fact, may not be all that important to many dying patients.
Still, there are patients who want to die at home, and we should honor that request if at all possible. But I think we must also clarify the reality of a death in the home, and ensure the family has the support it needs and understands the demanding obligations of caregiving.
And Johnny?
Just two days after going home, I received a call from his wife.
“We can't do it, Dr. Rousseau, Johnny's on his way to the emergency room. He hit me and our granddaughter. I just can't do it. No one helps me.”
The burden of the living room becoming the dying room was just too much.