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.”
Leave a Comment:
Wonder if administration at the local hospital would be open to a program like this here.
There are always hospice programs. Hospice programs give the right for people to die as home with dignity and quality of life not quantity. By choosing this you elect to stop medicare part A benefits which pay for hospitazations thus saving the government money and allowing you to not die in a hospital hooked up to machines.
All so called " Preventive" medicine testing should be paid for by the individual. these tests should not be paid for by insurance. they cost billions and most often tell you nothing is wrong. If you have any of those problems medical symptoms will present. If you have symptoms you go to the doctor, if you don't you are wasting millions of dollars. It is really " White Collar Welfare" . Put a stop to it yourself. As a consumer just don't do it.
With 7 billion + on this planet, medical care should NOT be provided. Statistically speaking we are all pathetically mediocre. Me. You. Anynoe that will read this, we are the surplus masses. Our greatest contribution will be the amount of pollution we create in our life.
Quit extending the lives of humans.
PERFECT PROPAGANDA for ObamaCare Euthenasia Death Panel.......
Leave it to NBC to put forward a POV that is in DIRECT CONFLICT with the Hypocratic Oath that each and every medical doctor takes prior to practicing medicine.
I guess if NBC can give our lawmakers a free pass when they foresake their OATH to protect and uphold the U.S. Constitution, they can do the very same thing with the medical profession as it is "viewed" by progressive leftist extremists.
When my husband was 47 he was diagnosed with Lung Cancer that travelled to his bones.. When the doctor told him to go home and enjoy what time he had, it was devastating. They asked him to sign DNR "do not resusitate" he looked at me to do it. I begged please just do that for me? I can't sign papers that will allow you to die.. I felt like I was killing him. I did everything else, I told his mom, family, even our kids.. I couldn't do that... We had all the necessary paperwork filled out and it was a big help to me the survivor. I think it made him happy that the plans were made for his end of life. Everyone do your family a favor... Sign papers saying what your wishes are. They will thank you later..
The last thing a person wants to do is the last thing he does-die.The worst is to die of a broken heart.It is smart to have a plan there are many option today to think about. I hope we all have a better place to hang our hat.regards
Every situation is different. My mother had lung cancer, diagnosed in 1981. After a miserble year of chemo and radiation treatment she succumbed to pneumonia. My mom was a fighter, but I am certain that she would have gladly traded one healthy month for that year of misery, I know I would. Today's treatments are more advanced and the awful side affects have been reduced; still there is a practical side to this decision, how much pain for how much time? Each of us must decide for ourselves. I fully support having a plan with legal authority to execute my personal decision. I am adamantly against having the government, the insurance company, the medical community, or my family's decisions override my choice.
When the time comes I'll blow my brains out at a Blackjack table in Vegas!
That'll wipe the Smirk off that Dealers face!
"Good Luck!"
Jerry, your right on the money!! If your a Christian (believer in Christ teachings) you know dying is stepping from this life into the next one! Like walking through a door! No one wants to die! We are all born with the will to survive God has inplanted that into all of us. I do agree that we all should have a plan that takes all the ugly choices out of our familys hands. And funerals are money makers for funeral homes. 8 to 9 thousand dollars to bury someone in a plot? how stupied is that! Your spirit and soul is not there! nothing left but an empty vessel. Peter calls it a tent! So im with you on creamation about seven hundred dollars on average. If i go before my wife she will keep my ashes until her death then she too will be creamated. The girls then will combine our ashes and spread them all over Arizona which we love so dearly. Now, They dont have to put flowers on a grave or visit someone who isn't there! I'm 64 soon to be 65. I'm a Vietnam Combat Veteran struggling with Agent orange exposure. I dont know how much longer i have left in this world? I'm blessed to have four wonderful daughters and six beautiful grandkids. I will miss them dearly and know they will miss me and my wife But they wont have to make the tough choices about our last days.
I am shocked that people view this as a political issue. I am firmly against Obamacare and single-payer health, and I do not support "death panels." However, I do support having an honest conversation with your family about your end of life wishes. Quality of life is much more important than quality of life and, the fact is, a disproportionate amount of money is spend on healthcare in the last year of life. If I am 43 and get diagnosed with cancer - I will fight hard because I have children who need me. If I am 83, while I will still have children and a family that I love and love me, I will value quality time with them rather than quantity time. And I doubt I will opt for any sort of medical treatment. As others have commented, many of these life-extending treatments have side effects that cause other problems. A rationale decision at 43 to choose treatment may not be a rationale decision at 83. Have this conversation with your loved ones, write down your wishes in a legally binding document and save your family the heart ache of trying to guess what you would want.
Sounds to me like an Obama deathboard pushing to make decisions for us. End life instead of preserve it, because its cheaper. Nice PR spin.
The problem is many of us do have this conversation with our loved ones. This is PR push to convince people to do what is cheaper. Very slick marketing.
I am a firm believer in Advanced Care Directives as a means of voicing what YOU want done or not done when your time comes, regardless of what your relatives voice. I want the decision to be mine and mine alone.
These conversations are indeed important. One of the most important things anyone can do is take care of the financial aspect LONG before these convos are necessary. Take a look at what I do for a living:
This is the most important thing you can do for your family, whether you are in good health or ill health, whether you are twenty or sixty. Protect them. Know that if you leave them behind, they will still be able to get what you worked for for them. DO IT. DO NOT DELAY.
I was my mother's caregiver for the last 5 years of her life. My mother was a very active senior, working until she was 80 just to get out of the house. She survived breast cancer with just pills and radiation but had congestive heart failure. She began going downhill the last year of her life. I was able to keep her in her home and only needed nursing care for the last two weeks of her life so I could go to work. She made the final decision on her life when she refused to take her heart medicine. It took her a week to die. Hospice was a great help. I am so glad I was able to be there for Mom and that she died in her home. I hope to God that I go quickly or at least as Mom did, on my own terms.
We are getting softened up to the idea, and the end will be when government policies make the decision for us because, well, it makes sense. (Who wouldn't want to do the right thing, after all??)
My real concern is who would make the decision. if it is the insurance company or the government than I disagree there are already people who are denied life saving procedures because they are over 50 and deemed not worth the cost i.e. (pace-maker) and this is my concern when we allow the gov to run our health care other than that if a person has had a full life or even less if their disease is painful and debilitating to the point where there is "no quality of life" that I think by all means an individuals desire is what should take precedence over anything else even if it where to mean allowing the person to be "Put to Sleep." Life is a choice and how we choose to live so why should we not have a choice over how we die. Again not the government we don't need "Logan's Run" issues.
A local doctor was bragging recently about having replaced a pacemaker in a guy who was over 100. I suppose it's possible that the patient was genuinely pacemaker-dependent and not ready to go (though at his age, he better start getting ready). But I have doubts, because I personally know someone who was coerced into receiving a totally unnecessary pacemaker under false pretenses at that same hospital. Nobody's even suggesting cutting off treatment for retirees, much less 50-year-olds - many of whom are highly productive, insured working people and therefore can be squeezed for big buck$.
make a pledge to go down "swinging"! If enough people are denied care/treatment/coverage and take the course of actual revenge...I'll bet the policies will either change or become so anonomous nobody will take responsibility ha ha...I'm buyin' popcorn:)
Firstly, we are all going to die. So does that qualify all of us when the treatments to keep us alive are very expensive. The article above used survival of 2 years or mentioned the last two years of a persons life. To me two years is a long time. Is the person going to have good days and bad days, like we all have? As we ponder such things as the value of life and the 'cost to health care syste' would ones stature in life not be considered? Certainly an important person like a C.E.O. should be given every benefit every expensive treatment because he is so rich and important. A mill worker however who is close to retireing will only be a drain on the system if he is given two more years of life with expensive medicines and treatments, in other words he's not worth it. I think pondering these things and making them public issues is very dangerous. We all know that to enter the hospital now you will be asked about a living will you can make a decision about living on a tube or not. I think the vast majority of people chose not to live on a tube with no chance of full recovery. But the issues the way they are stated here are dangerous and I already believe our health care system panders to rich, wealthy, celebrity over the common folks. Dick Cheney was given a heart transplant at 70 years old while I watched my father in law a much younger and healthier man die due to heart failure and a transplant was never mentioned. These may be some things that need to be brought to public attention, is there a 'whos who list'?
But what you describe is our current system, not a dangerous possibility. The CEO already gets gold-plated medical care; the mill worker whose labor helps to pay the CEO's salary already runs a huge risk of bankruptcy if he needs to use much of the second-rate care his company insurance plan allows. If there's any karmic justice it is that the CEO is probably getting a lot more health care than he needs and may suffer for it; at least the mill worker won't end up with cancer from CT screening for every possible disease.
Sounds like Hospice. The words of "Keep me comfortable" makes me laugh. Hospice kept my mother comfortable by killing her sooner than would be with morphine.
If you ever have hospice my friends make sure someone is there to monitor the drugs they give, they dont want to hang around to long so they will drug your loved one to an early death. I know first hand they did this to my mother. google - " IM mad at hospice" and you will see many stories there compare to mine.
my brother's wife (his 5th ha ha:) killed him way too soon with that also...he had a huge insurance policy! Really creepy...the whole family disowned her but she was with another guy in less than 6 months...and rich!
As Bill Maher said the sick care industry makes no money of your well and no money of your dead, it's those in the middle so if they can keep someone alive there is money to be made. It may sound crass but that is the way it is in sick care USA. In other countries they have a totally different approach and it is by far the more ethical.
My father had stage 4 colon cancer and had made the decision to take quality of life over quanity. He informed his doctor of his decision and just asked to be kept free of pain. His doctor refused insisting on chemo and radiation therapy. My father found another doctor who understood what my father was saying and kept him as free from pain as possible. Too bad many doctors don't listen to patients.
Hold the phone!!! You're/we're all being sold a bill of goods now that O'Bamacare is here. We're all volunteering to die ASAP and heaven forbid any treatment that is recently and suddenly viewred as too expensive or inconclusive...come on...don't be stupid! The healthcare/insurance folks want you dead and they'll have incentives built in to see that you do. You're relatives and loving family will want you dead for your insurance and money and the insurance companies will absolutely see that you die ASAP especially if you gave them your life savings for an annuity...wise up! You can't take it with you so spend it all and have a great bonfire and I'll just betch you'll live longer since nobady will "care" when you die ha ha ha...
This whole public forum and mulriple venues is all chreographed by EVERYONE who does NOT have your best interests at heart. Always remember this IS AMERICA and GREED DOES RULE every aspect of your interactions with others...
Try phytoplankton. It supposedly helped cure a person of lung cancer. Not sure if this is true.
It slowly becomes "quality of life" over quantity to the inevitable "why are you still here hangin' round suckin' up our "family jewels" and spending everyones health insurance $$$ that younger healthier people need instead of YOU? Netherlands actually has backed off on euthenasia (slightly) after it became almost socially obligatory...
You already have the right to end-of-life counseling, but many of you don't even know what that means. And after ACA goes into effect, you NEVER have to discuss your impending death with your doc. You are entitled to remain as stupid as you want to be about your prognosis and options. You may refuse any and all care or request any and all. But if treatment won't increase your life but just prolong your dying, is that really what you want to put your loved ones through? If family have to pay for every test and drug in the book to make themselves feel better, they and you are in total denial about life, and death. Do yourself a favor and read the ACA so you won't believe Sarah Palin's lie anymore. Don't you know the Party dreamed up the term "death panel" to scare ignorant folks like you into voting for her? Do you enjoy being lied to by the politicos?Learn about politics so you aren't so gullible - it's all a dirty little liar's game. How can you be so ignorant and still breathe???? Stop being such a dupe and sucker. Learn the FACTS and quit falling for rumors and lies. Your head is more than a place to hang your ballcap.
I totally agree with "Avenger-2464988" What a wonderful, unselfish, and kind action to follow ones loved one's wishes. I had a like time when I had to let go of someone I loved with all my heart. I had to follow his wishes and say "unplug". My selfish self said but he is here and I should do what ever it take. {that was not for him--it was for me} But there was no more that could be done. Machines alone were keeping him of this earth. And I knew he would hate it-we had talked about it. To me, one is morally bound to see to it that ones wishes are followed. It is the last loving thing you can do.