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.”
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Tom, you ask if someone could name one thing modern medicine can cure? Hmm, that's really tough to answer because there are so many things modern medicine cannot only cure, but prevent. And many of these conditions are brought on by lifestyle (diet and lack of exercise). Let's try a couple: 1) modern angioplasty procedures save tens of thousands of people from potentially deadly heart attacks every year. 2) A once deadly type of breast cancer is now completely treatable with a drug called herceptin. 3) colonoscopies actually give a gastronenterologist the tools to remove a polyp BEFORE it becomes cancerous. 4) tPA is a drug that can be given at the first signs of a stroke and it basically stops the stroke from progressing and dissolves the clot altogether. I'll let someone else take it from here ...
We are in our 70's and have also made all these decisions. We don't want our children to have to wonder what to do, What would Mom/Dad want? -- that sort of thing. Funeral notices written, legal papers all in order, everybody knows where everything is they might need, doctors have copies--nothing left to do but us to die and the kids to do whatever needs to be done. Some of our friends think we're a little weird the way we joke about all this sometimes, but why not? Sooner or later, if we live long enough, we'll all die.
The best place to die in America is defending yourself against a corrupt government and their financial Masters.
Back in May my mother called her lawyer and said she wanted to make some changes in her will. After examining her file the lawyer suggested that she update her durable power of attorney, healthcare proxy, living will and all the rest of the documents. A week or so later my brother and his wife, my sister, my mother and I went to the lawyer's office and watched her sign the documents she needed to sign. My brother signed the documents he needed to sign as executor, and I signed the one I was needed for. Mom talked about her wishes, and we all said that we understood. The lawyer said that we were one of the best families he'd ever seen. There were no arguments.
At the end of August Mom had a massive stroke. The doctors made it clear she would never be herself again. Even if she recovered she would never be able to walk or do things. When we met the palliative care doctor the discussion centered around the word comfort. Drugs for pain, yes. Blood pressure? No. No feeding tube. We explained to the doctor what she had said, and what she wanted. Again we were told that we were extraordinarily easy to deal with.
Mom died a week later. We just finished cleaning out her apartment. She didn't live on and on in misery and pain. Since we all knew what she wanted, and understood her reasoning, there were no quarrels or misery.
When people are signing their proxies and the rest of the documents it helps if the family understands the reasoning behind the decision. That can often make the difference when the family is asked for their medical decision. In our case it helped that Mom was old and was beginning to fade. She would never be what she was and we knew it. It made it easier to say good-bye. If it's impossible for the whole family to be there, then at least there should be a letter or other document to explain their thinking.
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looks like the best place to die in america is being the GOPs nominee for president.
My husband is terminally ill... We do not have the advanced directives forms on his charts at this time. They go everywhere with us, literally...
They are in my purse. He is not ready to give up on everything at this time. He is ill... he can't do a lot... but he loves life. Until, either he has a full cardiac arrest, or further treatment would cause only pain, and not quality... that document will stay in my purse. I know it is there... the kids all know it is there. We have all talked about it. We just don't want the doctors and nurses to do nothing, when something reasonable can be done.
Anyone who does not have a medical power of attorney / living will in place is not being very smart. Without this, if you are incapacitated, family members have to make decisions without guidance, and many, out of emotion, will opt for "keep the patient alive at all costs and by all measures". In reality, most people, once there is no hope of recovery, do not want to be kept alive artificially by respirators, feeding tubes, etc. It is pointless; that is not life. As the article says, ultimately we all die. Absent direction, if you must make a decision, ask yourself, would I want to be kept alive in this condition? I remember my parents, in general discussions about severe illness saying "no machines", that is my opinion too, and I don't consider this a difficult decision, because the decision has been made years ago, by my upbringing within my family.
Yeah, saving the "health care" system money is what it's all about. Soon we will all be shipped to the Soylent Green factory at age 70. I guess the idea is that if a person is not working and contributing to the tax system, they have no right to be alive in the People's Republik ov Amerika.
Seems like many decisions are necessarily based on condition of health, age, status of family finances, etc. I believe that is as it should be.
If I were in my 50's, had a loving family and the will to see my grandchildren, I think that I would be willing to do whatever was necessary to live on.
It happens I am in my mid 80's, my loving wife of 48 years died two years ago, my children are grown, educated to the extent they can be, and have lives of their own. All that I can do for them and myselfd now is not become a burden on them and give away their inheritance to doctors and hospitals for a few more weeks or months of "life".
I have had a lawyer prepare iron clad instructions concerning my end of life instructions. I will have my body cremated and my ashes scattered, and I have told my children that if they try to change any of these instructions, I will come back and haunt the because what I have outlined in my instructions is exactly what I want.
I have had a wonderful life and do not want it ruined at the end by anyone attempting to extend it with excessive medical treatments. I have made this choice for myself and reject any government decision making which might change it.
I truly hope that you get what you wish... my father asked to come home to die. He had lived in a nursing home for 2 years, to be close to dialysis machine. We honored his wish. It was the hardest, and the happiest 6 weeks of all our lives. We watched a father, loved dearly, slip to the next world. We had the chance to sit, and visit... just get to know him all over again. I have a very ill husband... and he won't leave this house... what he wants, he will get...
Already trying to get people used to the idea of ending life. And people say Obamacare will be a good thing.
I had cardiac arrest and died last year, and after all the surgeries because of it, and complications since, it's been pure hell on me. Do I wish they'd brought me back? Hell no! Now I've got my living will done, and my DNR in my wallet. Besides, it's not fair for family members to make decisions on that scale. It's your life, your responsibility. I just wish I'd taken care of mine sooner!
Trying to understand where the conversation went from a choice between family members, to Obamacare death panels. Have you people no shame? Better yet, do you have no brains?
Paul and Jean Pearson are my grandparents. I love my grandfather very much. Knowing that this is how he wants the end of his life to go is comforting in dealing with his loss.
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