I’m on call for my oncology group this weekend, and I’ve had the situation come up twice in less than 24 hours that a patient is in dire need of home-based symptom management, with plans for hospice just getting initiated in a mad scramble on a Saturday or Sunday. In both cases, the patient is sick enough and far enough from the hospital that just evacuating them with a 911 call isn’t an effective way to solve the problem. And so what could otherwise be a legal urgent delivery of pain medications to a hospice patient is a difficult night of toil and unnecessary suffering because there isn’t a mechanism to get medications or support for someone who will be enrolling on hospice tomorrow, after weeks of the patient and/or family resisting an appropriate and well-meaning recommendation to enroll earlier.
It’s a terrible shame that, in the US at least, hospice care is usually initiated at a point when death is just a few days or even hours away. Too often it’s a race for hospice nurses to get to the patient in time to provide needed comfort and support in the last moments of a person’s life, after the patient and their family and friends have already struggled through the rapid changes and symptoms of dying. If it isn’t “too little, too late”, it’s close. But hospice teams can provide critical value and support if referrals are made long enough for the patients and families to develop a good relationship with the folks from hospice.
This seems to stem from a tendency to want to deny, to wish away, any acknowledgement that a person’s disease is terminal (sometimes by doctors, sometimes by families, sometimes by the patient himself or herself), as if avoiding the subject and the needed action will keep it from happening. But a person will continue to decline, death will unfortunately ensue, and the only consequence of postponing to the point of critical distress and unavoidable recognition of the reality is that everyone experiences far, far more suffering and chaos than they would have otherwise.
It’s understandable that people don’t want to embrace a sad reality when death is becoming close enough to anticipate and plan for. In truth, death is rarely a beautiful experience, but it can often go from being terribly challenging and unpleasant to minimally so when there are people nearby who are equipped and motivated to help, and who have the experience to guide people. I think it’s a very sad, regrettable mistake to not avail themselves of that help until it’s an absolute crisis.