Featured Story
05.02.2024

Compassionate Care Until the End

Story by: SARAH PARSONS WEST 

Community hospitals like NMC are often considered cornerstones of society, providing life-sustaining medical care, sometimes from a patient’s first breath until their last. 

“As a rural hospital, we see people over the course of their life and illness trajectory. The challenge is getting people to remember that none of us get out of this crazy life alive,” says Amy Fox, NP-C, a Hospitalist at NMC.  

“I meet people when they are getting hospitalized due to illness, not generally a good day for them,” says Amy. “We have an aging population with a lot of medical comorbidities in Franklin County. My job incorporates daily conversations, or at minimum, introductions to hospice and palliative care.” 

Amy Fox came to NMC two years ago, following nearly nine years of service at a private oncology office in St. Albans. She says that her love for this community runs deep. 

“The beauty of working in St. Albans and serving a small community is the opportunity to cultivate relationships, the ones built on respect that lead to trust,” Amy says. 

“Death is truly the end point for all of us. Some people refuse to even discuss that eventuality, ultimately leaving painful decisions to their families to make on their behalf,” she says, adding that those feelings can stay with children and spouses long after their loved one has died. “It’s a guilt they can carry for the rest of their lives.” 

Amy says that providing patients and their families with crucial information and the support necessary to make hard choices regarding their care is paramount. 

“I try to always start with the patient themselves, that is the ideal situation. I usually begin by getting the feel of how much they understand about their medical issues.” 

As was the case with Robert [Bob] Neudecker, a patient Amy cared for during the final two years of his life. Bob had been suffering from recurring infections, and as the symptoms increased, so did visits to the ED and time spent as an in-patient at NMC, UVMMC and in rehab, respectively. 

“My father was blind,” says Liz Gamache. “He wasn’t born that way, but a progressive disease left him legally blind at the end.”  

Bob had been living in Burlington, but as his health challenges increased the Gamache’s decided to move him into their St. Albans’ home, to better care for him. 

A self-proclaimed lifelong learner, Bob continued to learn languages including Spanish, German, French, and Chinese while immersing himself in master classes in physics and microbiology. He even pursued his love of music by taking cornet lessons during his final year. 

“One thing we learned through the experience of him living with us, was how diligent he was in keeping his mind bright and sharp,” says Liz. “I think that’s an inspiration to me, and it may help to inspire others that it’s never too late to learn something new.” 

Liz says that her father’s goal had been to live to a hundred. “As he aged, he wasn’t as physically active, but he exercised his mind and that kept him sharp as a tack until the end.” 

It was Bob’s sharp mind, indeed, that allowed Amy Fox to begin the difficult conversation with him. 

“This did not happen during a five-minute check-in. We took our time with each other over several visits, listening and asking questions,” says Amy. 

“Bob and I discussed code status openly and honestly, which eventually led to a discussion on when people pursue hospice versus seeking life-prolonging care. He even held my hand for the code status discussion because he was such a lovely human being. I imagine he was comforting me, as it is not an easy conversation,” Amy says. 

“The care that Amy provided was exceptional. The support she gave to our family – helping us to face the question of hospice care or going to the ICU – it was a hard decision, a hard conversation,” says Liz. “She helped my dad make the decision – and he was able to live his life until he died. I will be forever grateful to her for that.” 

Once a patient knows how they want to proceed, the next step is a family meeting. “I help them explain to their loved ones how they have chosen to live the remainder of their lives,” says Amy. 

“Bob and Liz were open to discussing all the aspects of death and dying which is often the hardest part for people. They made it so easy for me, truly. This was a remarkable man who raised an amazing family. You could feel the love coming off them which is partly why I enjoyed caring for him so much,” she says. 

“My father was treated with a tremendous amount of respect at NMC, and since he’d been there many times, people remembered him,” says Liz, adding that the quality of service extended from everyone who cared for him, even the person who took his food order each day.  

“The professionalism and commitment to him as a patient, and as a human being, was always primary,” she says. 

“The importance of a community-based hospital,” says Liz Gamache, who served as Mayor of St. Albans from 2012-2018, “is what is striking about NMC – and I’ve felt this way for years. Smaller hospitals, where people are closely connected to the community – it really makes a difference – it matters. 

“These rural community hospitals are such important connectors, in bringing partners together and supporting the mental health of the community, not just the physical,” Liz says. 

“We are lucky here at NMC to have a knowledgeable and strong care management team. Usually, the care manager and provider hold the meeting together as we both play important roles in the conversation and planning,” explains Amy. 

“I’ve learned in my time working with providers at NMC that speaking about death and dying openly can be a gift,” says Olivia Markey, MSW, a social worker serving as a part of NMC’s care management team. “When someone can determine for themselves the course of their care and what quality of life means to them, it can bring a sense of peace to both the patient and their loved ones.” 

Care team goals include discharge discussions and options for transitioning out of the hospital, guiding the family, and helping arrange home or facility care. 

“When working with patients and families our goal is to simplify the process of planning, and to take the stress of coordination off their shoulders so that they can focus on being with one another,” says Olivia. 

“My role is to help them realize a plan for end-of-life care that honors the dignity of the patient and meets their needs for quality care,” she says. “I make a point of remembering that every patient and family I interact with is a unique story. Each conversation needs to bear that in mind.” 

Understanding which options are available or which benefits a person is entitled to can be really overwhelming to folks at an already emotional time, Olivia says.   

“We want to create an environment for people that acknowledges what matters to them, whether that means making sure specific music is playing, facilitating a visit from a beloved pet, supporting out-of-town loved ones to have a virtual visit with the patient or simply being there for family to offer words of comfort during a very challenging time,” says Olivia. 

“We are fortunate to have great hospice partners in our community. In my experience, they work very quickly with us to help get people home where they most desire to be,” she adds. 

While some patients prefer to return home to be with family at the end, sadly there are many scenarios when the patient cannot be a part of the conversation due to incapacitation. 

“All we can do is ask what the patient would want if they could tell us. I encourage them to focus on dignity and quality of life,” Amy says. “That is really all any of us can hope for when our time comes. The goal is to add life to days, when days can no longer be added to life.” 

Bob Neudecker, 87 years young, passed away in November of 2023, at the McClure Miller Respite House in Colchester, surrounded by his family. 

“I hope the lesson for everyone hearing Bob’s story, is that being open to discussing the future allowed him to live and finally die on his own terms,” Amy says. 

“He was at peace with his decision which provided solace for his family. And as he made the last, hard choice for himself, no one in his family had to carry the burden of choosing for him.”     —