By Michelle Balani
Rock Center

After being married for 21 years, Paul and Jean Pearson thought they had mastered the art of navigating life’s tough decisions, but nothing could have prepared them for Paul’s illness. Paul, a 73-year-old retired architect, was diagnosed in February with inoperable lung cancer.  Although the couple had talked about their healthcare wishes throughout their marriage, the experience forced them to confront how Paul wants to spend the rest of his days.

“Jean and I have been really open with each other and tried to put as much thought into this,” Paul Pearson said. “It makes you think about, ‘What do I want to do?’ Do I want to go through the pain, the suffering? And it’s not just me, it’s the whole family.”

The Pearsons didn’t want there to be any doubt about Paul’s wishes to put quality of life over quantity. They decided to put their wishes in writing and file a document called an advance directive at their hospital, Gundersen Lutheran in La Crosse, Wis.  It’s considered by many healthcare experts to be the best place to die in America.   

Having this kind of discussion, say health care advocates, not only gives patients and their families greater peace of mind, it can save the healthcare system a lot of money.

A study conducted by The Dartmouth Institute for Health Policy and Clinical Practice found that seven out of 10 Americans die from chronic disease and, as Americans live longer and longer, many families have no end of life game plan in place. The uncertainty over how to handle a loved one’s last days often results in more medical intervention, according to the Dartmouth study. Researchers found that patients with chronic illness in their last two years of life account for about 25 percent of total Medicare spending, much of it paying for repeated hospitalizations.

The Dartmouth Atlas of Health Care found that the costs of care at Gundersen were significantly lower than the national average. At Gundersen, patients in the last six months of life spend half as many days in the hospital as the national average.

“Our approach is patient-centered,” Bud Hammes, director of Medical Humanities at Gundersen Lutheran Health System, told Rock Center in an interview.  “We really focus on what does the patient want, how can we help them live well. Patients and their families want the best care. And the best care happens to be less care at this particular point in their life. Americans don't want to die hooked up to machines.”

The hospital’s program, Respecting Choices, was developed by Hammes and implemented in the early 1990s. It's turned into a national model with Hammes and his team training other medical professionals across the nation.

“Medicine, from my perspective, is the care of humans and it's the care of individual humans.  You know, each human coming through that door is an individual.  And we have to tailor the medical treatment we provide in accordance and in respect of that individual's beliefs, values, and preferences.  And if we're not doing that, we're not really fulfilling the full potential, and the full mission of medical care,” Hammes said.

Gundersen Lutheran’s program encourages patients facing death to have an honest conversation with their loved ones and their doctors about what treatments they wish to have or not have as their health declines. They file a plan, an advance directive, that is adhered to as their health diminishes. The program focuses on having these conversations when patients are healthy enough to have them, not when they are in the ER. 

“This is really a gift that you’re giving to your family because at some point, if they’re needing to make a decision, they can go back to this and say, ‘Yes, this is hard.  This is difficult, but this is what mom, or this is what dad, really wanted,’” said Carrie Lapham, a palliative care nurse at Gundersen.

Lapham has been helping patients with incurable illnesses for more than 20 years.

“I’ve seen situations where there hasn’t been a power of attorney for health care or an advance directive done and I’ve seen families struggle and try to determine whether their loved one would want this,” Lapham said.  “And, wow, you know, a decision has to be made, but family members can live with this for a long time after, wondering whether or not they made the right decision.”

One of the things they’ve learned at Gundersen is that talking about how you want to die can help improve the patient’s quality of life. 

“The cost of care goes down, because we are not taking them back to the hospital and doing all of those expensive things they don’t want. Ultimately we all still die and ultimately at some point, in each of our lives, even the best medical care won’t change the outcome,” Hammes said.

According to Hammes, 96 percent of the people living in La Crosse have some type of written end of life care plan in their medical records. The advance directive process starts with a very tough, very honest meeting called “next steps.” Paul and Jean Pearson allowed Rock Center to sit in on their “next steps” meeting. The emotional and revealing discussion was led by Jacqui Kartman, a nurse practitioner.

“Give me as much time as I can get, but keep me comfortable,” Paul told Kartman of his wishes for his final days.

The conversation took 45 minutes and involved questions ranging from specific treatments to the symptoms Paul worried most about to the bucket list the couple had made for their remaining time together.

He said he worried about not being able to breathe, didn’t want to be a burden on Jean and was scared of the possibility of needing to go to a nursing home.  Both Paul and Jean said that they wanted him to have quality time over quantity.

“What I am going to do now is read through these situations [and have you tell me your wishes],” Kartman told Paul during the meeting. “I have a serious complication from my cancer or treatment for my cancer, so that I was facing a prolonged hospital stay, and my chance of living through the complications is low. For example, only five out of 100 patients would live.”

“I would deny treatment,” answered Paul.

“It was expected that I would never either walk or talk or both and I would require 24-hour nursing care,” continued Kartman.

“It would be the same answer,” Paul said emphatically.

What happened in the meeting seemed as important for Jean as it was for her husband.

“He is my soul mate, and the thought of losing him terrifies me,” she told Kartman. “But he’s not going to get better, and we know that.”

Planning ahead has also brought peace to the couple’s six adult children. It was hard to hear about their father talking about his wishes for his last days, but now that they know what he wants, they have accepted it.

“You know, it does put everybody at ease,” said Ryan Pearson.

“All of us can be prepared for each step as it comes,” said Eric Pearson.

The Pearsons don't feel like victims of their circumstances. In fact, it’s just the opposite. The process has helped Paul decide how he wants to live the rest of his life. On the schedule are more fishing trips and historical re-enactments, a favorite pastime of the couple.

“Life is a gift,” Jean Pearson said. “None of us have a guarantee that we’re going to live forever here. This gives us that advantage that we don’t have to be second-guessing.  What should I do?  We’ve already made those decisions. And they’re hard decisions. But we’re OK with them.”

By Kate Snow, Sarah Koch, Deirdre Cohen and Jessica Hopper

Rock Center

Fifteen-year-old Allison Kasacavage, once a rising soccer star in Pennsylvania, is slowly recovering after suffering debilitating concussions while playing the game she loved.

“It’s almost like I need a sign on my back saying, ‘My head is broken.’ And you can’t see it. It’s like not visible and it’s like not many people understand, “said Allison in an interview with Rock Center’s Kate Snow.

Allison, who lives with her family in Chester Springs, Pa., has had at least five concussions.  She is only able to attend school four hours a day.  Her room is lit with soft blue light to ease her headaches and her family now eats dinner by candlelight. 

She is one of hundreds of girls across America each year who suffer concussions while playing soccer. 

“People who think of concussions as only being present mostly in guys and mostly in the sport of football are just plain wrong,” said Dr. Bob Cantu, who is chairman of the surgery division and the director of sports medicine at Emerson Hospital in Concord, Mass. “Soccer is right at the top of the list for girls.” 

With the steady popularity of youth soccer, more girls are playing the game than ever before.  Girls make up 48 percent of the more than 3 million kids registered in US Youth Soccer leagues.

Cantu said that the country is in the midst of “a concussion crisis” and that studies show girls are reporting nearly twice as many concussions as boys in the sports they both play.

‘Concussion Crisis’ impacting girls’ soccer

The number of girls suffering concussions in soccer accounts for the second largest amount of all concussions reported by young athletes, according to the American Journal of Sports Medicine.  (Football tops the list.)

“What’s happening in this country is an epidemic of concussions, number one, and the realization that many of these individuals are going to go on to post-concussion syndrome, which can alter their ability to function at a high level for the rest of their lives,” Dr. Cantu said. 

Allison still remembers when she suffered her first serious concussion in October 2008.  It came when she collided with another player on the field. 

“When I like got up, my head was like pounding,” Allison said. “There was, like, a pulse in my head. It was like the strangest thing.  There was a heartbeat in my head and I had no idea what it was and why it was there.  I have never felt that before and I was just so confused,” she said.

Click here for more on concussion symptoms

After Allison had apparently healed from the concussion, she returned to soccer.  She’d been a star player since she was six years old, working her way up to one of the top teams in Pennsylvania.  She said that her identity had been wrapped up in the game and she felt pressure to please her coaches.

Allison said that she was nervous about heading the ball, but continued to do it. 

“If you didn’t head the ball, you were like the weakest link,” Allison said.

When heading, players attempt to use their foreheads to direct the ball, often jumping with opposing players, a move that can lead to collisions between players, bumped heads and strained necks.  Dr. Cantu says that the act of heading is one of the most dangerous parts of soccer because players often collide.

Allison suffered a third concussion in her final season of soccer and another two off the field, the latter because her spatial awareness had been impacted from her previous concussions and she hit her head on a table and other furniture, her mother said.

Her parents said that they knew about the danger of concussions in sports like football, but it wasn’t until Allison had her first serious head injury that they realized what a big problem concussions can be in soccer.

“I think that we were blind to what was going on around us because, yes, it was about the team.  It was about the winning. It was about all the, it was almost like a routine of, like I said, an awful lot of practices and you just went through it and really your lives rolled by with soccer being the most important thing,” said Lex Kasacavage, Allison’s father.

Sports psychologist Richard Ginsburg says that enthusiasm for the game and the kids by parents and coaches, while well-meaning, might be making the concussion crisis worse.

“We get wrapped up,” said Ginsburg, the author of ‘Whose Game is it Anyway?’  “We want success for them and so sometimes we get, we lose perspective.  It doesn’t make us terrible people. It just makes us human. “ 

NBC News

Kimmie Zeffert

In Allison’s town of Chester Springs, about 30 miles from downtown Philadelphia, she is not alone.  She has bonded with at least five other 14 and 15-year-old girls who have suffered concussions while playing soccer.  

“My main friends are actually people that have head injuries,” said one of the teens, Kimmie Zeffert, 14.  “I’ve become so close with them because I can relate to them.  They understand what I’m going through.”

Kimmie had her first concussion when she was 12.

“I took another head ball and then I don’t even remember,” she said. “The next thing is I got, apparently, got elbowed in the back of the head. But (when) the coach asked me if I wanted to come out, I was like, ‘No, I’m going, I’m going to stick it through.”

Those hits -- heading the ball and being elbowed by a player in the head -- ended her soccer career.

Kimmie’s teammate Jenna Rohr made the same choice to continue playing in her game after getting hit in the head.

“I didn’t want to quit,” she said. “I didn’t want to let my team down because, like, so many people already had concussions on the team.”

Both Jenna and Kimmie have been unable to make it through a full day of school for almost two years.  They still suffer from intense headaches, dizziness, nausea and vision problems. 

Along with their physical ailments, several of the girls NBC News spoke to have struggled with depression since leaving soccer. Some have taken anti-depressants. One teen soccer player, who is returning to the sport after suffering a concussion, said that she felt so terrible at one point that she even thought about suicide.

Despite their experiences, the teens still love soccer and say they don’t discourage their former teammates from the sport.

“I think like speaking for all of us, like we would do anything to just be able to play one more game,” Jenna said.

Should heading be banned from girls’ soccer?

Dr. Cantu has made the bold proposal that heading be eliminated from youth soccer under the age of 14.  He said girls, because of their anatomy, may be especially vulnerable to concussions.

“Girls as a group have far weaker necks,” Cantu said.  “The same force delivered to a girl’s head spins the head much more because of the weak neck than it does the guys.”

New research suggests some body types may be more at risk than others.

“We believe that individuals with very long, thin necks may be at greater risk,” Cantu said.

With this evidence, Cantu said, “I would hope it would not only make parents look at their daughters, but make every one of those parents insist their daughters are on a neck strengthening program if they’re playing a collision sport.”

Brandi Chastain, the Olympian who helped the United States win a World Cup, strongly disagrees with Cantu’s proposal to eliminate heading from girls’ soccer.

“It’s a part of the game and I think it’s an important part and I think it’s a beautiful part of the game, to be honest with you,” she said.  “I would never want to see that go away, but there’s a right way to do it. There’s a protective way to do it.”

Chastain said that girls need to be taught to create protective space around their bodies.  She says heading isn’t dangerous if it’s done correctly.

“I circle back to education and preparation and I put that on parents and coaches because the kids don’t know any better,” Chastain added. “You know, they just want to go out there and play, but if we can educate them in a fun environment that’s safe, that teaches them the skill and gives them the confidence to try it and then they can put it into practice in the game.”

Back in Pennsylvania, the girls and their families are trying to educate people based on their own experiences.  Despite their concussions, though, they say they don’t want to discourage girls from playing soccer.

“Please don’t go and not play soccer because it’s such a great opportunity for the girls to just prove themselves and challenge themselves and make friends and travel,” said Wendy Zeffert, mother of Kimmie.  “But be aware.”

Editor's Note: Click here to watch Kate Snow's full report, 'Contact Sport,' that aired on NBC's Rock Center with Brian Williams on May 9.