“Life is a balance of holding on and letting go.”–Rumi–
She’s 66 years old, she lives in a group home, she has cerebral palsy and MR. She’s been in and out of the hospital this past year several times, each time declining physically. She doesn’t speak, she just points to what she wants and makes hand gestures. I’m only 5’2″ and when I help her to the bathroom, I tower over her height-wise. She is tiny, but her personality is huge. We nurses know her normal by now–she’s happy, grins ear to ear, wants to give everyone hugs. If only all of our patients could be that way, right? Today she is back in the hospital. They have placed a peg tube because she can no longer pass a swallow study. She is hurting, despondent–not her normal self at all. Her mouth is dry because she can no longer eat or drink. Her stomach is trying to get used to bolus peg tube feedings, which is stretching her stomach more than it’s used to. The canned liquid we give as total nutrition is causing her gas. Not only are these things causing her pain, but also the new peg tube site itself is still quite sore. She’s never been on pain medicine before, but the need for it is there now. So she sleeps a lot more than normal, is much less active. This leaves her wide open to a variety of complications–bed sores, pneumonia, blood clots in her legs, etc. However, at least she is now hydrated, and getting the vital nutrients she needs to stay alive. She doesn’t have to choke on her medicine, food, or drinks anymore. And she no longer needs to worry about aspiration pneumonia every time she takes a swallow.
Making the decision for end-of-life care is never easy. Nurses have the luxury of an objective point of view. Meanwhile, family members are torn by the possible consequences of their decisions, no matter what that decision might be. Nurses have seen the same scenario enough times to guess the most likely outcome, whereas family members are dealing with uncharted territory. It’s a tough call to make, and I’ve been on both sides of the equation. As for peg tubes themselves, I have seen some people thrive and regain health with them, while others just sort of wither away regardless. Are we giving loved ones another shot at life? Or delaying the inevitable while their quality of life further declines? I don’t know…there’s definitely no easy answer to that. Every situation is different, every patient, every family group…All I can do as a nurse is provide information and be as honest as I can be when difficult questions arise.
As for my little peg tube patient, I hope she’s doing well again back at her group home. I never got the chance to see her smile return before she was discharged. I do know she was surrounded by love. Her caretakers and other residents often visited her, and she seemed to have a great support system. If anyone has a chance at returning to a better quality of life, it would be her. I hope she gets her smile back.