MUSCATINE — Dawn Reber saw her mother’s death in a bowl of unfinished oatmeal.
Her mother always loved oatmeal so when the dish went uneaten, she knew something was wrong. When Reber was a little girl, she remembered watching her mother stirring in oats above the raspberry counter tops of the house’s kitchenette.
“She made the best oatmeal. To this day, I don’t really know what exactly it was she did to make it like that,” Reber said. “She’d put water in a pan — never a microwave; always a stove top — It never got mushy the way she did it. A little bit of salt, sometimes a little sugar, right as the water was boiling.”
Even in those salad days, Reber said that she knew her mother suffered quietly from stomach discomfort. Her mother was a private woman. She would joke about not having seen a doctor since the delivery of her youngest.
“She didn't want anybody to see her weak; not her joyful self,” Reber said. “She had a personality that people just loved. She was warm and caring and loving.”
When they were older and Reber had her own children, she suffered from similar stomach problems. She was advised by a doctor to have her gallbladder removed.
“Nowadays they just do the four little slits and take it out. Quick as that,” Reber said. “I told her how easy it was. She'd been taking stuff for years for her upset stomach. Finally I talked her into going.”
Her mother’s surgeons began with a laparoscopic surgery, but after some complications, they opted for a larger incision, open gallbladder surgery.
“(The doctor) was trying to get it out that way and couldn't so he opened her up and everything was full of cancer. Her liver. Her gallbladder. Everything,” Reber said. “They didn’t give her long to live.”
She went through an additional surgery and a schedule of chemo, but ultimately, she was told she was not going to get any better. She ended up back on the cushions of her couch.
“It became really hard for her. Food, I mean,” Reber said. “Nothing ever tasted good. The chemo was making her sick.”
It was the fall of 2004 when Reber began taking care of her mother. She said she felt closest to her mother. While some days she could not even swallow oatmeal, her mother could sit with her daughter and watch television: a consistent diet of talk shows during the day and Westerns at night.
Reber said her mother became ever present in the room.
“She insisted on laying on the couch,” Reber said. “She wanted to be around people. I think she thought that if she stayed in (the living room) she wouldn’t die in bed.”
As a person approaches their final day, there is list of arrangements and decisions that have to be made: Burial or cremation? Which funeral home? Are you an organ donor? Who has the power to make health-care decisions if you are incapacitated?
As Reber saw, lucidity waxes and wanes. People slowly lose the ability to communicate what they want the end of their life to look like. If they have not already made arrangements, this often leaves those decisions to the emotionally vulnerable family and friends around them.
“It was terrible sitting there. Just knowing that she was right there at the end,” Reber said. “She was good mother. We all loved her.”
Her mother died December 1, 2004 with her daughters and husband in the room.
“Dad was at the foot of the couch. And she just took her last breath,” Reber said. “She died. Just that easy. Just that quick.”
Other than knowing that she wanted to be cremated, Reber said they had to guess about a lot her arrangements.
Planning life before death
According to Beth Poci, advance care planning coordinator at UnityPoint Hospital, it is common for patients to not have planned for the inevitable.
Primary care physicians will recommend patients to her program. It is her and the other facilitators job to get as much on paper for the patient as possible so if they are ever unable to make decisions, their preferences can be considered.
“Bad things can happen,” Poci said. “It could be an accident that leaves you temporarily in a position where you can't make your own decisions. Nobody knows when a serious illness will strike. Or you have a really bad allergic reaction and wind up sedated on a ventilator.”
Though she said the program, Respecting Choices Advance Care Planning, recommends anyone ages 18 and older go through the process, she tends to focus on those ages 55 and older.
“I try to let them know that the document we are going to complete is more than just some check marks and fill-in-the-blank,” Poci said. “The average appointment time is an hour, but it could be more, depending on what their needs are. Oftentimes, people are just not prepared to do this much talking and thinking.”
She said that it is normally smooth sailing until they get to page for of the health directives application. Titled “My Wishes,” it asks six questions and leaves space for the applicant to write in their answer.
“If possible, I would like the following for comfort and support (rituals, music, visitors, etc.):—” one question reads. Another reads, “The things that make life most worth living to me are:—”
The responses that Poci receives are often intimate. Some people take their hygiene seriously. They will ask to have their hair and teeth brushed daily. Some don’t want to feel claustrophobic; they’ll ask for the care provider to untuck the sheets at the end of the bed.
“We either have a really sad discussion and there are tears, depending on what the discussion is and how recent everything that happened to them was,” Poci said. “But sometimes, people get a little bit squirrelly and we’ll have a conversation that is full of laughter. When the conversation does get tearful, I'm grabbing for the Kleenex, too.”
She said that these conversations take a toll on her. You will sometimes see Poci making a lap around the hospital to get some fresh air, some space.
“Facing mortality — it's just not common for people to say, ‘Yeah I know I'm going to die, and this is how I would like to do that,’” Poci said. “It's a cultural taboo to talk about the end of life even though it will happen to all of us.”
A lesson from Mom
The death of her mother, shook up Dawn Reber. Today she is 70 years old and is getting ready to move near her two oldest sons in Rapid City, South Dakota.
After some goading from her own children, she met with Beth Poci to have her Advance Care Plan written up.
“I just wanted to get it done,” Reber said. “I got a call from my son one day and he just said, ‘Mom, get it done.’ … It’s all written up. My wishes on what I would like done if I’m in a nursing home or assisted living home. The (Do Not Resuscitate) form.”
Beth Poci said that the older people get, the more likely they have experienced a loved one go through end-of-life care. Even though this rarely makes the conversation easy, Poci said it does mean that many of the people she talks to understand the conversation’s importance.
To explain this importance of doing this work early, Poci points to what she would see as a hospital discharge planner.
“I would call to the ER to figure out who can make decisions for this person who came in with nobody and cannot talk to us,” Poci said. “At the hospital, we do everything. Even if you are 95 years old and frail, we're doing CPR, breaking your ribs — without other guidance we always do everything. If you want us to do everything, we need to know that. If you don't want us to do everything, we need to know that, too.”
It is a free service that Poci offers to the community. Though it opened back in 2013, Poci said that it has only been in the past two years that they’ve seen an increase in numbers. She hopes to see that continue.
To get the word out, the Muscatine County Advance Care Planning Initiative will celebrate National Healthcare. There will be a screening of a documentary about end-of-life conversations and care. Afterwards, there will be a discussion and opportunity to schedule an appointment with a planning facilitator like Beth Poci. The event will run from 2 to 3:15 p.m. on Monday, April 16 in the Trinity Muscatine, Board Room, 1518 Mulberry Ave.
“In the end I know the outcome is that we are making sure their wishes get honored. We are writing down what they want; what's important to them,” Poci said. “It's important work. Somebody has to do it.”