A Caring Community: Preserving Dignity at the End of Life

Too many times I've had patients tell me that dying makes them feel "worthless" and "undignified". They feel like their life has lost it's meaning. Everything that defined who they were as a person has changed or disappeared. They've transitioned from being a contributing member of their community - a spouse, a parent, a banker, a construction worker, or maybe a caregiver themselves - to now depending on others to care for them. These feelings are especially strong in patients who depend on others to bathe them and help with their toileting needs, whether it's helping them to the bathroom or changing their diaper.

Our society honors and respects youth. We view young, strong bodies as possessing dignity. Unfortunately, we forget that we are human and that our bodies will eventually begin to fail us. Even with advanced medicine and top notch science, we still haven't figured out how to cheat death. Yes - we will all, one day, die and no one should have to face their death feeling like an undignified burden to their community.

Does being human mean being undignified? Humans need to be cleaned and cared for. We urinate and defecate and sweat. Being unable to clean up our own messes doesn't make us undignified any more than being an infant does.

The dying patient often has it all wrong. Parents, family members, and even strangers delight in caring and doting over an infant who is completely dependent. We would never consider an infant to be a burden, would we? That would be immoral and unethical. So, too, is it to think of the dependent, dying adult. Believe it or not, most family members consider it a pleasure to care for their dying loved one, even though it's hard work. Health care workers who care for the dying aren't just doing it for a paycheck. Trust me, there are easier ways, physically and emotionally, to make money. We do it because we want to - because it is an honor.

Dr. Ira Byock, author of The Four Things That Matter Most said it well in his book Dying Well. "Interractions like this, caring and being cared for, are the way in which community is created. I believe that community, like the word family, is really more of a verb than a noun. Community comes about in the process of caring for those in need among us....in allowing yourself to be cared for, and being a willing recipient of care, you're contributing in a remarkably valuable way to the community."

So, whether your a patient who feels like a worthless, undignified burden to your family and your community, or whether you're caring for someone who does, remember this: we, as a community, as humans, need to care for they dying just as we care for the newborns. It's the circle of life and there's no way to circumvent the process. Allow yourself to be cared for and don't let your illness and dependence on others rob you of your dignity. Give yourself a break! You are, after all , only human.

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