Author: Coleen Wright, Madison-Deane Initiative Coordinator, VNA of Chittenden and Grand Isle Counties, Vermont
One morning, I walked into the Vermont Respite House for a committee meeting on the Vermont Hospice Study, a study being conducted to identify barriers to hospice use and come up with strategies to increase hospice utilization in Vermont.
I felt a little nervous and harried in anticipation of my initial introduction to Respite House; I had had a hectic morning. Vermont Respite House is the only in-patient hospice facility in the state of Vermont. Walking in from a cold rain outside, the first thing that hit my senses was the combined smell of bacon and fresh cut flowers. The smell was reassuring. When I looked around, I saw a fire in the fireplace, and a comfortable home-like environment. I was met with a warm greeting from Sharon Keegan, the administrative director, who showed me to the meeting room. I left that day, amazed at how the physical aspects of Respite House had set me at ease. It was clear that this was not
accidental but was the intended effect of the philosophy of the place. Those small, not unusual, sensory experiences evoked a feeling of HOME.
Most of us wish to die at home. There is a primal need to return to our most comfortable, recognizable and peaceful environment. Hospice care values and supports people dying at home, with a quality of life that makes peace, presence, and connection possible in the last moments of life. Isn’t that what we all want in our last days?
My experience of inspired presence and calm at Vermont Respite House reminded me of why Hospice Care and Palliative Care are so important. The experience also uplifted and reinvigorated my inspiration to do this work.
I am the new Coordinator for the Madison-Deane Initiative (MDI) at the VNA of Chittenden and Grand Isle Counties, having recently relocated from the Boulder/Denver area of Colorado. MDI is the education and outreach arm of the VNA that is working to change the “Face of Dying” in Vermont and beyond. A native of New York, I come from a background in Counseling and have an MA in Psychology. I’ve spent a number of years working both in end-of-life care and beginning of life care. I was a Bereavement Counselor at the Denver Hospice and worked for an organization called “Windhorse Family and Elder Care.” I also attended births as a Doula or labor and postpartum support person for families. I am passionate about supporting the dignity of choice to have a “good birth” and a “good death.” Birth and Death are natural transitions that somehow get complicated when we try to control or prevent them.
In my new position, I was surprised to learn that Vermont has the third lowest utilization of hospice in the country; with only New York and Alaska being lower. After my initial experience at Vermont Respite House, I wished I could bottle up what I felt that day and leave a sample at every door of Vermont so as to share the positive reasons why hospice is so valuable. I’ve sat with patients who have died in the hospital, and it is often an incredibly painful experience for everyone involved, wrought with unnecessary suffering, not to mention medical bills. I have also sat with families and patients, who have experienced hospice and it was different. Less fearful and painful, it offered a time for connection and aliveness.
Don’t we all in our last days want the smell of freshly made bacon, the comfort of a homemade quilt made with love, and our loved ones close by? Maybe we want the opportunity to savor life; to have a glass of wine and sip it slowly with full appreciation, or to eat a strawberry with the delicious recognition of the goodness of taste. Maybe it is our wish to make amends and connect with loved ones, to review your life and wrap up spiritual and emotional concerns. Hospice does not prescribe what people should want in their last days. Hospice gives people the dignity to choose to spend their last days how they want. Hospice is an approach to end of life that supports how a person wants to die, not how medical professionals, society or others say you should die. It’s not whether or not there is the smell of bacon, it is that dignity is afforded to you to decide the how and what in your last days.
The VNA is leading the Vermont Hospice Study to better understand the reasons behind Vermont’s low hospice utilization. The findings are due in the fall and we will have a better idea then on the work we need to do to support people in accessing hospice care. I am inspired and hopeful that together we can support access for hospice care in Vermont. I may be a new Vermonter, but I can tell that the smell of bacon and maple syrup, as well as the dignity to choose how you wish to live your last days, is something that is valued in Vermont.