The UW-Madison PEOPLE Program
Internship at Agrace HospiceCare
The Complexity of End-of-Life
Cecelia Charlan (l-r), Adream Liang, Brenda Gonzalez, Agrace’s Diversity manager,
Vanessa Reyes and Pacheng Vang
Although they signed up for Agrace HospiceCare as an internship, they had a lot of misconceptions and trepidation going into the first day. One of them was what
they thought end-of-life was all about.

“Our misconceptions were that people came here to die or to fulfill any last minute wishes,” said Liang. “It was very surprising to me that Hospice was a lot homier
compared to the hospital. There is a lot of warm lighting. It was also surprising how they focused on your bucket list rather than the fact that you are dying. It was
quality over quantity.”

They also thought that the patients and their families would be consumed by their impending death.

“At first, I though all patients would be grumpy and they would always be in the bed and not move around much,” Vang said. “But then I found out that some patients
are independent and they can still move around. They can still sit up and not just always be in the bed. And they aren’t grumpy. Some are so nice and have emotions
and they are still happy.”

And the actual interaction with the patients changed a lot of stereotypes.

“For me, I didn’t really think that these people here were actually still people,” Charlan confided. “I mean I knew they were people, but it didn’t really cross my mind
that they were so able to have normal conversations and live normal lives even if they are in a hospice center.”

And Reyes felt that Agrace would be a “House of Gloom.”

“I thought that coming here everyone would be sad or crying a lot, but you don’t see that a lot,” Reyes said. “They are usually very happy and caring for the patients.
Most of the patients are actually very calm and they seem to be happy. And they do look comfortable.”

One thing that the interns had to get over was their own fears of death. At their age, death was a minor actor in their lives.

“For me, I was really scared coming here,” Charlan said. “My very first day working at the IPU, the very first room that I walked into, the patient had already passed
on. And that was extremely overwhelming. The first thing I did was walk in a processional for this person. Like I said, it was so overwhelming, but it was a great
experience to be able to honor someone like that. I was really scared from then on, but I think my perception of death has definitely changed. Agrace has really made
it so that you’re not afraid to die. You know that you have the comfort here. You know that it isn’t going to hurt. It’s not going to be painful. And it’s going to happen at
some point and the people here and the level of comfort they provide for you is extraordinary. It’s so different than being in a hospital. And it doesn’t scare you, I
think.”

It took time to develop a different attitude about death.

“Definitely I felt some fear coming here,” Linag said. “I’ve only had one person in my family pass away. On my second day, we had a procession where basically
they take one of the patients out of Agrace. That was a somber moment for me personally. It took some time to get used to it. It was pretty rough.”

Death had been something distant for Reyes.

“I have never had anyone in my family pass away,” Reyes said. “And coming here and actually seeing a patient pass away was kind of hard. But I learned to
manage my feelings. I honestly don’t know who that person was, but just seeing how their family was crying and feeling it really made me feel sad.”

While death may have been something distant in their lives, what the students wanted to be was right in on the action in order to see what nursing and end-of-life
care was all about.

“We were here on a rotation basis so that we got a better, holistic view on the program,” Liang said. “What I enjoyed the most was shadowing the nurses in the IPU
to see their personal touches on patients. There is a lot of comfort involved in the care. There is the misconception that you just give them morphine and then they
die. But it is about decreasing their symptoms and increasing their comfort.”

“What I enjoyed the most was getting to talk with the patients and meeting with them,” Vang added. “I listened in on the conversations that the nurses had with the
patients and how the nurses would make the patients feel better if the patients were in pain. They would help them develop a better frame of mind.”

And Hospiced’s approach made all the difference in how the patients approached their end-of-life experience.

“I figured a lot of the patients here would be uncomfortable because they were in the last stages of life,” Charlan said. “But actually Agrace focuses a lot on comfort.
They have such a large emphasis on comfort. And I just didn’t realize that when I was going into this. And the patients here are in different stages of grief. You can
clearly see what stage of grief they are in. I thought that was strange and it definitely contributed to their attitudes.”

It was such a beautiful moment of comfort that the patient sometime acted as the comforter.

“I think another thing is how much the patients care about their families,” Liang said. “A lot of patients make sure that they are awake when they are talking with
their friends or families. I think what may be the greatest fear is your family doesn’t get the care that they need after you become a butterfly.”

The term butterfly is used to refer to someone who has just passed.

And Agrace made sure that the families felt comfort as well.

“For the families, the families would have grief and they would agree to have the grief counselor. They can help the families to feel less grief and to feel better. Also
with the patients, they know that they are going to be comfortable and the family knows that the patient has moved on to a better life.”

The experience at Agrace had a great impact on the students and their thinking about possible careers they want to go into.

“If I go into healthcare, I better make sure that I am mentally strong,” Liang said. “I really would like to go into healthcare. I think this confirmed that.”

The experience at Agrace also confirmed what Vang wants to do in life.

“I would like to enter healthcare because it is a way to help others and I will become a caretaker just care for them and make them feel comfortable, make them feel
like they are special and important,” Vang emphasized.

The experience totally flipped what Charlan had in mind.

“I walked into this internship actually wanting to be a doctor, a physician,” Charlan said. “I realized here that physicians don’t actually have as much direct patient
care as I thought they did and I didn’t want to be a nurse at all. At the end of it, I realized that nursing is actually where I want to be helping the patients directly and
providing them the care that they need immediately.”

Reyes may be changing directions as well.

“I want to go into dentistry,” Reyes said. “But coming here, it made me realize that maybe I want to go into nursing instead because I really do like the interaction that
nurses have with their patients.”

Agrace challenged the PEOPLE Program’s conceptions of end-of-life care and their own career aspirations. They met the challenge with flying colors.
By Jonathan Gramling

For many cultures around the world, a holistic, circle of life approach is taken
where dying, end-of-life, is seen as the natural order of things. It is a part of life
and accepted.

But it seems to be different in the United States where end-of-life is almost
compartmentalized and removed from daily consideration. It’s almost hushed-
hushed and feared and then all of a sudden, at the very end, the thought of end-
of-life is almost horrifying and consuming.

But at Agrace HospiceCare on E. Cheryl Parkway in Fitchburg, it is again,
treated as something natural and not something to be feared.

For several weeks in July and August, four PEOPLE Program high school
students had the chance to confront their misconceptions of ends-of-life and to
test their desire to enter the healthcare field.

Adream Lang, Pacheng Vang, Cecelia Charlan and Vanessa Reyes are PEOPLE
Program “veterans,” having joined PEOPLE in while they were in middle
school. Now as they approach the end of their high school careers, they are
starting to ask themselves deep questions on what they want to do in life.