By Michelle Balani
Rock Center
Originally published: Sept. 19, 2012.
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.”
Click here to watch Harry Smith's full report from Rock Center with Brian Williams.
Leave a Comment:
"Quality time over quantity" is a wise choice. Life is to be enjoyed and should not end in the equivalent of torture. This country should have passed euthanasia laws long ago.
These thoughtful and caring medical professionals are performing such a public service. I hope other health care facilities are following this model. Beautiful story. Thank you.
As a palliative care physician, I want to thank you and the families featured in this wonderful story for bringing light to this important conversation. Many hospitals in the United States have palliative care doctors, nurse practitioners, nurses, and social workers available to help patient and their families with making these decisions and plotting out the road map for how to live the best quality days when facing serious or life threatening illnesses or injuries. If you or your family member is facing such an illness, inquire with your primary physician to see if palliative care supports are available.
Thanks so much for covering this difficult topic on your show this evening. As a nurse in an intensive care unit, I have seen the end of life experience for those who have advanced directives as well as those who do not. I hope this story will bring awareness to the necessity of these documents and help patients make difficult decisions no one else should have to make.
Please discuss end of life with your parents as well as your loved ones - siblings and children. I am so grateful that my parents were realistic with all their children. When my father became ill we never doubted what he would want. Although he lived in a nursing home for 4years. We did nothing to prolong his life - he went when God called him home. This past year my younger sister became ill and was on life support - after testing it was determined she was being kept alive by machines, although it was the most difficult decision of her 5 siblings and mother - we knew it was the most loving.
I am a graduate student who is writing a dissertation on the barriers to Hospice care for the significant others...the ones left behind when the loved one is dying. I can not say enough thanks for making this topic large as life for the world to see! I have walked many loved ones through the end of life and on to what God has in store for them and have felt the pain of the ones left behind. How great it is when the loved one who is dying has made the advanced directives plan out for those that will have to make the decisions in the end. I hope to become connected with some of the researchers who helped create this project so as to replicate the study where I live. See you at researchgate.com Rock Center thank you for taking a tough topic and making it real for real people!
My father, with congestive heart failure, was sent home on Hospice care from Gunderson Clinic, with no medical professionals available.
Gunderson Clinic left inexperienced family to manage at home fully recognizing that he would eventually become unable to breathe and would enter a state of panic.
Following a horrific ambulance transport, He spent days dying at Gunderson hospital - with family members standing by, at great expense, and experiencing failure.
My father died at the hands of Gunderson Clinic. with a hemoglobin of 5 Dr. Gunderson waited 1 full week to transfuse a brain injured patient because "his primary physician was on vacation".
Do not be deceived by this story. It still comes down to dollars and where the most money can be made.
Experienced.
I Believe You!!! I can tell by just reading this story. As a nurse I see trouble all over this story. I want to know what happens when this person that has answered the question they would deny treatment if their condition may leave them unable to talk or needing nursing care 24 hours day,,what happens when they need food or water or need a diaper change or need to be turned over but get bed sores that lead to amputations and ultimately a more agonizing painful death and not palliative more comfortable care that a hospice is supposed to provide and this is what is happening in so many place across our country.
I have been a hospice nurse and currently an RN case manager for elderly and I applaud the coverage you gave to this subject. I wish all my patients had this in place. It is an emotional subject, but it makes the end of life so much better. I have also been on the other side of this caring for dying loved ones. It truly gives the family a sense of peace.
My father died in the hands of Hospice care from Gunderson clinic in LaCrosse. He was sent home with congestive heart failure without in-home medical support. The professionals knew full well that he would enter into respiratory failure and that the family would not be able to manage at home.
A horrific ambulance ($$) transport occurred followed by a lengthy hospital stay ($$). The family was left to feel as though they failed.
The story on MSNBC sounds nice - but then there is reality. My father died a horrific death leaving guilt and failure with the family
I am very thankful for this informative program today. Just because of this, I am hoping families will strike up conversations at their dinner tables. Hopefully they will start asking questions to each other before something major happens in their lives.
My family and I had to face one of the most tragic times of our lives; when dealing with end of life decisions for my Mother. Being a nurse and a daughter I wanted to make her as comfortable as possible in her last days. Unfortunately, different members of the family had different opinions. Though she wanted to be comfortable, she went through a lot of unnecessary procedures just to make those family members happy. Fortunately we had such a great team of caregivers at the hospital she was at. They mediated and made her last days as comfortable as possible.
Thank you again Mr. Williams. Palliative care options are something that families need to know about. Early decisions can provide peace to families. You are making a big difference in the lives of people.
Fine presentation about a very important topic. I wonder why hospice care was not mentioned?
NBC, Rock Center & Harry Smith, THANK YOU for doing this wonderful story on my very dear friends Paul & Jean Pearson. They are very important to a lot of people and their story is extremely heart-wrenching, but also very beautiful, showing the love they have for each other during this difficult time. As part of their "chosen" family, I can only hope my husband and I can find the same courage if we are ever faced with making those "end of life" decisions.
Thank you very much for presenting this information and in such a thoughtful way. My husband and I have had an advanced directive for many years. I was very grateful that my mother had one. We knew what she wanted in her last days and we were able to allow her to die as she wanted. Every family needs to have this conversation and everyone needs an advanced directive. It truly is a gift to your family.
Thank you for handling a difficult subject in a sensitive and informative manner. Suggestion: gather friends around tables that otherwise host raucous dinners in order to have this conversation. Drink fine wine, great beer, or hot chocolate with vanilla ice cream and a salted caramel swirl. Eat yummy stuff. We will fix this tragic fear associated with the end of life. It won't be easy. We'll cry. We'll laugh. We'll deal with it because the option (scared, unprepared, alone and out of the control we would otherwise exercise in right mind) is far more scary than simply dying in comfort. We are born to ultimately die. I miss everyone I've ever loved (and some aren't dead). They are alive in me as long as I (or you) remember them. Personally, I want no pain, my favorite music, the sound of laughter, and everyone to know that I chose this for myself.
Please join in the death and dying conversation at www.deathis.com
My beloved spouse had an advanced health care directive and had made some clear choices that he and I discussed extensively. However, he became delirious (maybe from pain, maybe from medications, or maybe his cancer spread to his brain) and began to express confusing change of heart decisions about his final care. To this day - 18 months after his death - I sometimes question myself on decisions I had to make on his behalf in the final two weeks of his life. I think I chose the right path but will never know for sure. Thank you for this story.
Thank you for this story. My beloved spouse had an advanced health care directive that we discussed at length. However, he became delirious (from pain, or medications, or his cancer possibly spread to his brain) and he became confused and expressed changes he wanted in his final care. I will never know for sure if the care he received in his fianl two weeks was accoriding to his true wishes or not but I made decisions based on our extensive pre-illness discussions for end of life decisions for both of us.
I am grateful that NBC urged this important conversation about end-of-life wishes. Perhaps the neutrality of referring to a TV program will enable family members to discuss death and dying. Sometimes it is the parent, sometimes the child who is reluctant to undertake this conversation. In addition to the discussion guide used at Gunderson, there are other programs that can help a family discuss this sensitive, important topic such as Five Wishes A range of legal, medical, and ethical issues is presented using questions. Dying is a difficult process for the participant and the observers, refusing to plan will not prevent death, only add stress.
Please join in the death and dying conversation at www.deathis.com
I love that this segment was done. I am in the process of starting a initiative whose mission is to, enhance the end of life journey by building awareness and inspiring conversation on the topic of death and dying. If you'd like to check out what we have done so far go to our facebook page at www.facebook.com/deathisorg or go to www.deathis.com
I hope to see more available on this topic soon. So important, but little access for everyday people who will eventually face this reality for themselves or their loved ones. People NEED help with this process and the difficult decision making involved. I have a sister with stage IV metastatic cancer of the pancreas. She and all her family learned at diagnosis (6 mos ago) that this was terminal, with prognosis measured in months rather than years. We are all still coming to grips with this new reality, including her. She is completely withdrawn, does not want to "talk" about it.
Suggested reading: Elizabeth Kubler-Ross. Author of many great books; dedicated her life to patients with terminal illness.
As a Board member of Compassion and Choices in Boulder, CO, I truly appreciate the Pearson's incredible gift that allowed us to witness this most profound conversation. Having frank conversations about one's wishes at the end of life is something we need many more role models for. Thank you, Jean and Paul, for your generosity. For letting us see that the conversation was difficult, but also necessary and life affirming in so many ways. Bless you both.