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  • Writer's pictureArwen Rasmussen

The Right to Truly Live

By Christine Eggers, Appeal to Heaven




“Life is not measured by the breaths we take but by the moments that take our breath away.” This anonymous quote was a frequent meme in our pre-COVID world. Remember those days? Life wasn’t about “being alone together,” it was about being together. This is something those in elderly care and end of life facilities are seeing precious little of right now.


As limitations have been put on everyone across the world to help prevent spread of the virus, none have suffered so much as the elderly. The rights of residents of care facilities are defined by several different acts: the Center for Medicare Services’ Omnibus Budget Reconciliation Act of 1987, the Older Americans Act of 1965, the Patient Self-Determination Act of 1990, and the Elder Justice Act of 2010. Rights include participating in care decisions, making independent choices, and having visits from family, friends, clergy, etc. On the other side of the coin, some of these acts also define the legal standards of abuse.


Elder abuse can come in many forms including scaring people into submitting to things they would not normally agree to, false imprisonment by not allowing a resident to leave the facility, and involuntary seclusion or separation from other people by confining them to their rooms and not allowing visitors. In our pre-COVID world, actions such as these were sufficient to get a facility shut down for rights violations and abuse. Now they are implemented by government fiat.


One of my clients, upon seeing me in person for the first time in two months, said while sobbing, “I began to think to myself, ‘Is this my life? Am I even still alive? Or have I already died?’”


Is this OK? If we make it legal and say, “It’s for their own good?” Is it acceptable for care facilities to engage in behavior that 10 months ago was considered abuse? What is the goal? What is the benefit of Grandma living to 96 instead of 95 if she’s shut alone in a room for her final year? What logic allows paid care providers to come and go daily but denies visits from family? What has changed because of this pandemic that those rights are being taken away?


Everyone should be allowed to make their own end of life choices. There are certainly some living in residential care who choose to self-isolate and number their breaths. Everyone else, however, has the right to live a life that takes their breath away until their last breath.


This essay is the opinion of Christine Eggers, RN of 30 years in end of life care, owner of Appeal to Heaven: Independent Nurses’ Network and does not reflect the opinion of Senior Review.


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