It is very common for patients nearing the end of life to say, "I want to be at home." This is not stubbornness. It is a natural and deeply meaningful wish to spend remaining time in a familiar space, beside family and pets. Good care often begins with recognizing this desire rather than dismissing it.
When a patient has several tubes in place, such as an ascites drain, a biliary drainage catheter, and a tube draining urine from the kidney, and also has severe pain, taking them home can feel impossible. But there are established services and methods for caring for people in this condition outside the hospital, so it should not be ruled out from the start.
Home-based hospice care sends a team of doctors, nurses, and social workers to the home to help with pain control, drain management, medication, and family education. In addition, when an inpatient is relatively stable, families can ask the medical team whether a short outing or an overnight leave home might be possible, even for half a day.
Pain, often the biggest barrier, can sometimes be managed more flexibly with long-acting patches or a portable patient-controlled analgesia (PCA) pump that continues to work during travel. Drains can be emptied and cared for at home once a visiting nurse or the family caregiver has been trained. However, when infection risk is high or pain is not yet controlled, moving the patient may do more harm than good, so it helps to plan realistically by separating "staying fully at home" from "a brief visit."
Deciding in advance whom to call and what to do in an emergency gives both the patient and the family greater peace of mind. Crying together in response to the wish to go home is entirely natural. Even if it is not possible to spend all the remaining time at home, a single brief moment, such as seeing a beloved pet again, can bring great comfort to everyone.
This article is for general information only and does not replace medical care for an individual patient's condition. Please discuss with the treating medical team whether temporary leave or home-based hospice is appropriate for your situation.