by Andrea Powell, HPCCR Marketing Manager
When I first started working for Hospice & Palliative Care Charlotte Region (over seven years ago!), I remember that I was pretty much awed on a daily basis. As I started learning about the powerful impact of end-of-life care, every story I heard was groundbreaking (it seemed). The results of every study extolling the virtues of comfort care were worthy of shouting from the rooftops. I realized then (and still believe now) that every single person on the planet should know about hospice. Wide-spread education about this amazing and crucial service is the linchpin to eradicating the fear that so often comes along with it.
The WOW factor is slightly different now at work. Don’t get me wrong, I am still completely awed by the inspiring people around me who work for this organization. That hasn’t, and won’t, change. In fact, I am in tears almost daily from the stories that swirl around me. But over the course of seven years, I’ve heard and seen a lot. So it takes something truly special to bring me back to the doe-eyed, child-like wonder of my first days with HPCCR.
It happened back in December. I was asked to sit in on a palliative medicine consultation at the clinic at Levine & Dickson Hospice House – Huntersville because I’d never had the privilege of watching our palliative nurse team at work. And I have to tell you, it was simply outstanding.
Our patient, Mrs. S, had been seen off and on at the palliative clinic since May for symptoms related to advanced dementia. Since her last visit, Mrs. S had lost significant weight, was weaker, sleeping more, and her appetite had declined somewhat. Her family was obviously concerned because these changes had all happened within the past several weeks. They spent time giving examples and looking at the careful notes they had taken.
Then the magic started. Once the family had finished describing their loved one’s symptoms, nurse practitioner Penny Zimmerman and nurse liaison Kim Driscoll began their gentle and surreptitious question and education session.
Questions asked were along the lines of “What do you want for Mrs. S?”, “What kind of support do you need right now?” , “Could you use more support?”, and “How would you feel if she went back to the hospital?”
Then the education: “We look to see if the brain-to-muscle and brain-to-hand connections are weakening”, “Dementia patients usually pass away from complications, not actually from the disease itself”, “What we want to do is preserve the quality of life”, and “Having a plan will be important for us and for you”.
After listening to the questions and the comments, I pretty much knew what Penny and Kim had in mind in terms of the help they wanted to offer this family. Like I said, I’ve heard and written enough hospice stories to fill a novel. But hospice is a scary concept. It has to be broached carefully and softly, when the time is right. That is, once the minds and hearts of loved ones have opened up just a crack to the possibility. That’s when the transition from palliative to hospice, once tenuous and uncertain, begins to solidify.
Over the course of 90 minutes, I watched a stunning transformation. I watched a scared and rather tense family walk in with their loved one, worried about outcomes and next steps. I watched as Penny and Kim, two masters at work, calmed their fears and offered a new lifeline; one that would give them additional, regular visits from an entire team of expert clinicians and 24/7 emergency support whenever they needed it. This hospice lifeline would largely take the guesswork out of caring for Mrs. S. It would allow the primary caregivers to go back to being a daughter-in-law and a granddaughter. The family left the appointment with relief and smiles on their faces, secure in the knowledge that they were doing the right thing for Mrs. S.
Sometimes caregivers feel guilty choosing hospice. They feel like they haven’t done their job well enough and that’s why their loved one is declining. But Penny and Kim said something that truly struck me. They said, “Sometimes the vehicle starts to fail despite the work of the soul.” Wow. Now, that’s poignant.
You know what I take away from that statement? That our loved ones want to be healthy for us at end of life, but they simply can’t. And it’s not anyone’s fault. But it’s our job to make the very best decisions for them because we love them. We want what’s best for them. And in this case, what was best for Mrs. S was hospice care.
Caring for a loved one is hard. There’s responsibility and pressure and decision-making. And what makes it even more complicated is the enormous, messy love that floods our senses. Once strong emotions get folded into the mix, it’s harder to separate the brain from the heart. And making decisions regarding end-of-life care? Not easy, to say the least. Aren’t we blessed, then, when we find folks who help us through that process? When we can be led, like a trusting child, to the right decision? And then be gratefully awed at the outcome?Explore posts in the same categories: advocacy, awareness, caregiving, dementia, hospice, palliative comment below, or link to this permanent URL from your own site.