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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I wonder with the population at 7 billion and climbing, is extending lives into the 80s and 90s a good thing? How soon before food and water shortages pop up? I know it sounds harsh, and I don't want to be "that guy", but surely that question has been pondered. What will the world look like in 50 years if another billion people are on the planet fighting for food, water and adequate housing? Or will a massive drought be on the horzion, leading to wars, starvation and disease? Is mankind foolish enough to believe that there are infinate sources on Earth for food and water and unfettered population growth?
The fleecing of america continues. They fed the baby boomers to the stock market with 401Ks, then raped them. Now they are preying on the baby boomers fear of death. Guess what? You have a responsibility to die. Get over it. No one deserves three open heart surgeries, no one. You should die, nature said so, not a panel denying you your needless surgery. One open-heart surgery costs more than anyone paid into the system, but we are entitled to live as long as possible. We could send 20 kids to college for the cost of an open heart surgery for an 80 year old. Get over it.
but but but, Dickhead Cheney just got a heart, so this is his first operation... sorry, I could not resist
Went through 22 months of chemo with my mom for her stage 4 lung cancer. After seeing what happened to her, and what I went through, keep me comfortable, and let me go with dignity.
Never understood why people would want to live longer in todays society. I would just not like to suffer. The real issue is health care cost. I wasn't asked if I wanted to be in this world, my parents brought me here but if a patient wants to try and prolong their life they should be able to and afford it. I wouldn't care to live longer, just as long I don't suffer to my last breath.
A soon as you enter a hospital the first question is "What Insurance do you have?" Then they call in all the people they can and do everything they can to justify the existence of all their testing equipment. The best thing to do is to sign a Do Not "Attempt" Resuscitation. DNAR order. Otherwise they will bring you back from what should be a normal death so they can bilk the insurance or medicare of every dollar plus all the money you have and when they have made you into a pauper, ship you to a county nursing home to be paid for by medicaid and that won't last long. Even the county homes want all your assets first, and when they are exhausted they will take medicaid.
Health care like any other service, is provided based on one's ability to pay. When it is defined as an unfunded human right, it is still provided based on one's ability to pay, since the government cannot provide the service. This being the reality, people are compelled to make end-life decision based on their ability to pay, unless of course, they want to do it as a freebie and end up in the ER, without a personal physician. The decision will then be made for them by the so-called "Death Panel'" irrespective of treats of lawsuit. Why? Because the resources are finite and the provision of medical services as an unfunded human right is unsustainable.
So the ficticious "death panels" that Malamute Barbie said were part of the Obama health care plan are actually part of the existing healthcare provider's and healthcare insurance company's phylosophy! Wow am I shocked!
None of us has control about our coming into this world, but we may have some control about how we make an exit when the end looks like it could be a tough one to swallow if we apply what we know. Extraordinary medical measures can do a lot, but on someone else's terms. Knowing death is inevitable for every one of us at some point in time, we are given the opportunity to live and then die and each of us can choose a final path to follow. I have much respect for this guy; he really does reflect how I see my future. I'd prefer to be master of my own ship until the end.
Living wills are one thing, but assisted suicide is a slippery slope we should NOT get into. I know some states have it already, but assisted suicide + government health care could easily lead to cutting someone's life short just because the government wants to save $. Patients, families and MDs should discuss end of life plans without having to consider costs to either big government or insurance.
I'll shoot myself rather than end up a vegetable in a nursing home, as will my husband. This essentially means that if we suffered a progressive illness, we would have to act sooner than necessary, while we still had the mental and physical ability to do so, and therefore probably some quality of life left that could be enjoyed. I would like to be able to sign a document that says if I no longer recognize my loved ones, say, put me to sleep and spare me years of indignity. Then I could get as much as possible out of life, knowing that when my life was over, my existence would end shortly thereafter. Treat me as humanely as a pet cat or dog is treated.
Until last year my father cared for my mother at home. After a hospital stay the state jumped in and ordered her into a nursing home, they didn't believe he could care for her, even though she was clean, well fed and made as comfortable as possible. Shortly after her admission the nursing home discontinued her meds, they said it was for the best as the meds no longer helped her. Without her meds she began an ugly decline. No one will ever convince us this decision was made in Mom's best interest, it was nothing more than a cost saving factor. Recently she passed away and it was a horrible and painful death. Our pleas to make her comfortable were ignored.
For weeks my aunt screamed out in pain because they diden't want to give her "too much pain medication". She was dying but they didn't want her to OD.
My mother in law had oxygen, etc disconnected, this was also a terrible death. I will never forget the wild eyed look on her face while she was straining to breath. This was beyond cruel.
I might have a little respect for Obama's Ethics Panel (death panel) if it was comprised of doctors as well as the business men currently appointed. I don't believe business men look at what is best for the patient, they look at the bottom line. Death should never be a "bottom line" issue, the issue should concern quality of life and comfort, what is best for the patient!
twotx, I am sorry about the loss of your mom n relatives, n all the bs, of course, surrounding them... just one thing, I could write a novel, my mom lived w/ me n had hospice 'care,' n after my mom passed away the sheriff n a nurse came, n the nurse made what was clearly a snide, judgmental comment when she asked for the meds back, re the liquid meds for my mom's 'comfort>> well, you sure did not bother to use this, the morphine... a lot of poor healthcare is about ppl who should never be around other ppl, let alone ppl who are in need... yes, I could write so much more, as I am sure you could... I hope you find something nice in your day
There is a point life is a burden to individual and detrimental to long term welfare of the society. There is time to say, my life is burdensome plus I am not contributing anything and taking away from others.
Universe is bases on death. Stars in the sky have to die.
I hope we can have enlightened decision making in this country and all over the world.
We are stuck in perception and outdated concepts of things. If we fail to change, providence will change it for us.
lol, the best place to pass away is at home, not in some cruddy hospital, ewwww
if my husband dies 1st, i'm all that's left, i have no other family to say squat , yey!
I have seen hundreds of thousands if not millions of dollars burned up by highly competent physicians prolonging lives of moribund if not totally comatose patients. They have no guidelines other than "family requests". If they don't do everything to prolong a life when it is obvious to even the mailman it is hopeless they are afraid the family will seek out some scumsucking sleezebag lawyer. It is just going to get worse and will only cease if we effectively execute all lawyers or if physicians are no longer paid. Maybe we do need an incompetent gang of idiots like the democrats attempting to administer obamacare.
It'll be great when that obamacare kicks in,..just one less decision that you'll have to bother making for yourselves. They'll run your life and your death.
Like Barry said: "Old people don’t need life saving treatments they can take a pain pill (and be left to die)"
Sorry Aunt Martha.
It is changing slowly but there are still Catholic Physicians and Catholic Hospitals which refuse "do not resuscitate" instructions from patients and authorized relations. I have instructed my Physician on my wishes and insisted that I not be placed in any hospital which refuses to accept my end of life instructions.
The trouble is they don't really give you a choice. I told the Dr My Dad would want the hospital to whatever it took to keep him alive and they tried very hard to convince me that he wouldn't! I think I know my Dad better than the hospital personnel. They tell you that they want to give people a choice, but really they want to convince you that their way is the "right" way. Soon people won't have a choice. The hospitals, healthcare personnel and government will decide who will get the funding to live and who will die.
This is a very good post and one that makes you think about what is best for end of life care. With that said I would feel a whole lot better if it wasn't Obama's Death Panels in charge of making those decisions. In the QARY (Quality Adjusted Remaining Years), chart they are using the seniors are on the short end of the stick. That decision should be made between the patient and the doctor.
This is so sad......people just keep buying into the liberal crap! But then again, like Nobama himself said, "old people will just have to suck it up, take a pill and learn to live with a little pain". I and my son live with pain every day of our lives. Does this mean we just just kill ourselves so we won't use or incur medical expenses?
My finance and I have discussed all of this we are both in our 60's He wants to live as long as he can even with medical help as I want to live only if I'm not hooked up to anything and without chemo or radiation. I'm glad we have had this conversation because if we had not we would have assumed that the other had the same wish as we did, now we know and can carry out the wishes of each other without guilt. We are all going to die and we may as well live and die as we wish.
I am 64 years old. My wife and I have been married for 40 years. I am reitred and my kids are grown and self supporting. This article has brought a light to a dark subject that we rarely speak of. My Grandmother would say, when I was young and she was upset with something in her life, would say ' when my time comes and I can't do or think for myself, just dig a hole and put me in it and cover me over. As old as she was, she was talking about the end of life. Near her life end she was living by herself started a fire on the kitchen stove and was move to a nursing home, which she fought, then death came and took her health and then her. Her quality of life was deminished, as I witnessed. I didn't know that it was the End of Life for her. When time came there was dicussion about treatment and that point we all wanted to hold on to whatever small glimmer of hope that we could find. But death took her anyway. Advance directives are good. Let me decided ahead of time. Lord please, do not let my family decide for me at such an emotional time. If any treatment can have an effect to reverse or stave off dealth, by all means, do it. If it does not give me or the govenrment my money back. JimPtcyGa
It should be your choice made with forethought and time for reflection, rather than someone else (a Panel) making it for you. This way you continue to maintain your rights and dignity.
I was diagnosed with a stage 3 cancer and have been in remission for 7 years..I think of the remission as a hibernation of the cancer and that it will come back. Not as the same cancer ,but in a mastitis-ed form in my lungs. I believe that the decision making process of dieing is much harder for the young than for the elderly..I know for myself I had began to accept death as a part of living by the time I was 55 years old.. A natural process that was meant as a move over for the next generation movement. I have already researched my options and given my Advanced Directives to all my Dr's. and all the different hospitals I was sent to for my original cancer treatments...
Let's not forget that cancer treatments can put you in remission,but they also do a lot of other damage to the body.... It left me with stage 3 kidney failure..recurring urinary tract infections..12 inches of radiation scarred colon.. Most elderly also have more than just one serious illness or damaged organs.
The person them-self is the only person who should be allowed to make the decision of how they want to die.
My body will go to a medical teaching hospital...My family knows when the cancer comes back I only wish to pass on in peace without suffering.
The cost of my self-administered advanced directive is very inexpensive - one bullet.
Unfortunately, I have just gone through the loss of my loving wife of 20+ years. We were fortunate to have known that she was not going to get better. She was diagnosed with stage 4 breast cancer that had metastasized to the brain. She fought for 3-1/2 years and then the cancer got ahead of the treatments and I had to choose to stop the treatments. At the point the treatments were stopped, she was already beyond making a sound decision as to what she wanted to do. We had living wills done and had spent many hours talking about what she wanted if it got to that point. As hard as it was, I had no doubt about stopping the treatments and she passed away a few weeks later. This subject is not an easy one to talk about with your loved one but it is one of the most caring things you can do for those left behind. No second guessing or guilt that you did the wrong thing. Please talk about it with your family.
I'm sorry.you will heal but you will rub it raw sometimes
I lost my Mom in May to metastasized breast and/or lung cancer that went to her brain. She was diagnosed in December and went through radiation for the brain tumor. I wish to God we hadn't gone the treatment route. The radiation gave her seizures and she fell and broke "at least 4 ribs." She passed away a week later. She might be here today if we had chosen quality over quantity. And...she had a mammogram 11 months earlier. Please do breast self-exams- I might not be writing this if she had. It was a fairly large and aggressive lump by the time she found it by accident in the shower.