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From the Grace Archives | Originally published August 12, 2012 | By Dr West
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 acknowledgment 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.
One Response to Hospice is HELP: Avoid it at Your Peril
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August 28, 2012 at 3:42 pm
I have had the opportunity 3 times to work with hospice. The first time, it took until we were told that my Dad was in the active dying process. It was very scary at first, but as the 5 days till his death progressed, it turned to be a very comforting experience. The 2nd time, it was suggested by the memory care center that my Mom was living at, that we consider hospice. I was devastated but after speaking with the care team, realized that this was the best thing for her. She lived 9 months after she enrolled and they were able to provide physical, emotional and spiritual support to her and our family that was greatly appreciated. The third time was with my 54 year old husband last year that was diagnosed with stage IV lung cancer. I was mentally prepared to call in hospice right away, but he was willing to try chemo and radiation. We talked about what would happen when he made the decision that chemo and radiation weren’t options any longer. That happened for him after bone mets to his femur and spine were found. He declined surgery and the next day we had hospice at the house. We fully anticipated at least a month of hospice, but sadly he went into the active death process 5 days after and passed away 5 days after that. I can say from my experience that hospice was the best thing that could have happened for my family and me. It is human nature to want your loved ones to be with you longer but it comes to a certain point that we need to step out of that ‘heart’ decision and make a ‘brain’ decision and make our loved ones a comfortable as possible as they progress to the next stage.