“I’m going home. That’s it. I don’t want to hear anything else!”
Mrs. B., breathing through her nasal cannula, looked at me anxiously from her hospital bed. She was in her mid-seventies, plagued with advanced cancer and chronic lung disease and now recovering after respiratory failure and a few days of mechanical ventilation. Our goal was to send her home, but she was still quite weak, unable to manage transfers to the bathroom without assistance, and she was cared for at home only by an elderly husband who was overwhelmed at the prospect of doing all this work by himself. Therefore, we had arranged for her to stay in a skilled-nursing facility where she would receive physical therapy. We were cautiously optimistic that in one to two weeks she would be strong enough to return to her home.
I walked into her room that morning for what I thought was a perfunctory visit to finalize the plan and say goodbye.
“I’m going home,” she said.
“Exactly,” I told her. “This recent hospitalization has left you quite weak, so our plan is for you to first spend a week or two at the rehab facility, and then you’ll be in better shape to go home.”
“No,” she replied. “I’m going home now.”
Hearing the impatience in her voice and seeing the determination on her face, I reached out and said, “I know you’ve been through an awful lot here at the hospital, and I’m sure it’s been hard being away from home for so long.”
“You’re right, it is, and now I’m going home.”
I could see we were approaching an impasse, and I worked to understand more and keep the communication open. I tried to find out what it was exactly that she needed at home. Would it be possible for her to stop by her house, gather some important belongings, and then to continue on to the rehab facility? Every option was met with an adamant “No!” When we had exhausted every option, and she still insisted on returning only to her own bed, her husband relented and said that he would make the best of it. We arranged for the best support possible, crossed our fingers that she didn’t fall or suffer some other serious mishap, and all agreed that we would not be surprised if we saw her soon back in the emergency room.
This scene unfolds daily at Duke Medicine hospitals and across the nation. While some patients may not be as assertive about their needs as Mrs. B., their desire is nonetheless just as strong. It’s easy to understand their motivation. Too many institutional residential facilities feel sterile, lack privacy, and worse yet, do not meet our basic quality standards. However, the draw is much stronger than that. It’s about the familiar, it’s about memory, and it’s about where and with whom we feel most safe.
Therefore, it would be natural to expect this sentiment to reach its peak when it comes to where people want to die. In fact, most people assume everyone prefers to die at home. We were curious whether this was actually true, so a number of years ago we surveyed nearly 1,500 patients, family members, and health-care professionals from across the U.S. to see what they thought were the attributes of a “good death.” Among nine rank-ordered attributes, “dying at home” came in last, preceded by “freedom from pain,” being “at peace with God,” “presence of family,” being “mentally aware,” having one’s “treatment choices followed” and “finances in order,” feeling “life was meaningful,” and “resolving conflicts” prior to death.
What explains this seeming contradiction—that as a society we seem to value dying at home, yet survey results appear to suggest that individuals feel otherwise? Diving deeper into the data, we learned that although people do indeed value home, it is not always the home itself that is so important, but rather how they feel when they are there. Home simply represents the place they most expect to get their needs met. Since there always are going to be people who cannot die at home—their care needs are too great or their resources too meager—we should focus on what it is about home that makes it special.
Twenty to thirty years ago, increasing numbers of women wanted to deliver their babies at home, but physicians feared that they could not ensure the level of safety provided in the hospital. In response, hospitals created birthing suites. Women could now deliver their babies in the presence of loved ones, in a beautiful and comfortable room, with one’s favorite music playing and a warm bathtub waiting. For the overwhelming number of new mothers this was “good enough.” Similarly, we’ve created such experiences for those who die at inpatient hospice. For example, at Duke Hospice’s Hock Family Pavilion, large families can stay with the patient, play music, cook meals in the kitchen, relax in the beautiful garden, and simulate the most important elements of being at home. Unfortunately, many patients still die in the hospital, and in that setting we still have a long way to go.
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. Yet, there also always will be patients like Mrs. B., whether dying or with ample days left, for whom all that we can do outside of the home will never be good enough. We must listen deeply to their requests and work hard to understand what is most important. Meeting their goals may take us out of our comfort zones, require an extra commitment from family and professional staff, and feel risky. Yet, where individuals live and where they choose to die is theirs to decide and, whenever possible, ours to accommodate.
James Tulsky is a professor of medicine and, as a physician, specializes in palliative care at Duke Medicine. His work on end-of-life care is nationally known. In 2014, he received the Duke Clinical Science Research Mentoring Award.