When a patient develops new symptoms while waiting to be admitted to hospice, families often worry: "We declined life-sustaining treatment, so can we no longer receive any treatment at all?" These are two different things. The "life-sustaining treatment" refused in an advance directive or a life-sustaining treatment plan refers to specific procedures that only artificially prolong the dying process when recovery is no longer expected — cardiopulmonary resuscitation (CPR), intubation and mechanical ventilation, hemodialysis, or chemotherapy in the dying phase. Symptom-relief care — easing pain, helping breathing feel comfortable, and managing immediate problems such as infection or difficulty urinating — is not part of that refusal. In fact, that kind of comfort care continues to the very end.
So if urinating becomes painful, as though being squeezed, or urine leaks unexpectedly, this is not something to simply endure. In a person who has had an indwelling urinary catheter for a long time, causes can range from a urinary tract infection (UTI) to a blocked or irritating catheter or bladder spasm, and many of these become much more comfortable with relatively simple measures such as pain relief, antibiotics, or changing the catheter. These problems do not hasten death and are not "life-sustaining treatment," so it is worth having them actively evaluated.
While waiting for hospice admission, a practical first step is to contact the outpatient clinic or emergency department of the hospital where the patient has been treated, or the contact number you were given. If a hospice facility has already accepted the patient, you can also call them to describe the symptom and ask for advice. Do not hesitate, thinking "we refused life-sustaining treatment, so should we even go to the hospital?" — simply make clear that the visit is to relieve a newly developed discomfort.
The fact that the patient is now taking opioid painkillers freely, without holding back, is also not a cause for alarm. At this stage, adequately controlling pain is one of the most important goals, and using medication promptly when needed is different from dependence or addiction. That said, if there is excessive drowsiness, constipation, nausea, or new trouble passing urine after taking the medicine, let the medical team know so the dose and type can be adjusted.
This article is for general information and does not replace individual medical care. Any decision about new symptoms, medications, or hospice use should be discussed with the attending physician or care team.