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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These issues become moot with the soon to be implemented death panels.
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Go talk to Sarah Palin about her ideas for end of life care and how it should be paid for.
Your an Idiot, Go have another cup of Tea!
I'm guessing you're missing the sarcasm here...
This process has been around a lot longer than obuma care, and it makes sense.
So...you think the patient's wishes should be ignored? Throw every possible medical treatment their way, regardless of the costs - or actual benefit to the patient? What do you think "death panel" means? It's just RW spin on the very issues being discussed in this article - actually having a conversation with patients to see what they want, and then following that directive. Educate yourself.
These types of doctor patient conferences are exactly what the people who coined the term "death panels" were talking about. Just shows how you can take a great idea and twist it until you scare a lot of people.
"DEATH PANELS" What part of life do folks like you understand? Confabulated, twisted half truths and lies put out by the ultra-right, politically driven media and their puppet masters seem to be hard to put to rest. Go for a long hike. Sleep out under the stars. Take a week off from listening to talk radio or watching your favorite "Faux News" program.... I'm hoping your world view will clear up.
Whether or not patients desire aggresive treatment should be strictly up to them and not a 3rd party that will dictate what their plan of care will be.
Even patients that have been accepted on the hospice benefit, still have the right not to sign a "DO NOT RESUSITATE" form and it is not a requirement of the hospice benefit that they do sign this form. They also have the right to change their minds even after they have been accepted onto service by a hospice provider. If these rights are infringed upon in the future as a result of the ACA, then it's another example of the how the Obama administration has resulted in the reduction of our freedoms.
I would rather a publicly accountable government panel decide, then a private insurance company. Which is the so called "death panels" that exist now.
There will always be some kind of decision making process when it comes to what kind of care someone should get, and whether it is money well spent or not. Unless you can pay all cash yourself, that's how it has to be. The question really is, who gets to make the decision. As I said at the start, a publicly accountable panel is far better then a private for profit insurance company panel.
That's pure bull - there's no such thing as a "death panel" - that's something the Republicans made up to scare people.
That's the point...this article is supposed to soften us up for the death panels...they'll provide us with the oh so nice 'end of life planning'.
The big "death panel" standing in the room is the Paul Ryan Budget, that would take 617 Billion from Medicare and give it, in tax breaks, to millionaires, to the tune of trillions every ten years, while killing Medicare by 2016.....Doesn't it make you want to get up out of your hospital bed and smack him with your cane? Touche'
Having a conversation about what you (the patient) want when the time comes, as opposed to being told what you're going to get when the time comes is, I believe, what people fear most from the "death panels".
I agree that the decision for agressive treatment that extends life should be made between the family and treating physician. But, I believe that insurance companies have the right to establish limits at where they are willing to pay.
I understand that there is an emotional decision involved. But, there should be a financial responsibility for everyone over the age of 60.
Michael -
You and I are on the same page. You have to read through this leftist propaganda for what it is. Conservatives want to have these conversations but, we do not want faceless gvt workers making these decisions based on cost, we want a discussion between the caregivers and patients. In rebutal to "Freedoms" comment, I would rather have a publlic company who will be juedged based on their services rather than some Gvt lackey who has no one to be accountable to as you suggested
What is explained in this article is NOT what has been reffered to as the Death Panels! The so called Obamacare death panels are the Independent Payment Advisory Board (IPAB) who will determine who gets what as far as health care goes. They will be appointed, they will exist, they will decide what you get regardless or your personal choice. And they will decide on a monetary basis.
"Maybe she shouldn't get the hip replacement, send her home with a pain pill" Barak Hussein Obama on healthcare.
You can save ObamaCare a lot of money by just dying quietlly.
I work in a hospital. This document is so important. It is important for the family members. There is so much trauma suffered by the families when they are in the position to decide medical decisions for others and to handle their own views and grief at the same time, that the patients wishes seem to be the least important. So many families are split up for the rest of their lives over this.
It is also extremely important for the medical community. We often times only have seconds to minutes to take action. It is important to have this document on file at your local hospital, copies in the family possession as well.
This is also a big financial problem for our nation. If a politician tries to bring it up, people freak out. Death is part of life, yet we as a society refuse to cope with it. Every religion I am aware of says there is life after death, yet we fight death tooth and nail mentally and financially.
I just don't see why insurance companies or anyone should be forced to pay for Pap smears, PSA test, mammograms, routine physicals, etc for people with a fatal disease or are 100 years old for instance. These test-diseases are not going to end these lives. We spend so much money on things that make absolutely no difference in bettering the end of peoples lives. If people feel these things need or should be done, then they should be paid out their pockets. They pay for their beliefs.
The money we throw at the end of life stage is totally out of control. Because of our own fears of death we refuse to do what is best for the person that actually is dying.
Thank you for such a thoughtful post. In the desperation to keep loved ones alive at all costs, sanity often goes out the window. Death IS inevitable, it isn't the enemy, but needless suffering - and wasted medical resources - can and should be avoided. I'm glad that patients' end-of-life wishes are being respected in this way.
I agree. I've been an ICU nurse for 7.5 years. It is so sad to see older patients who have to go through full treatment even when the doctor explains to the families the treatments are futile. Just so everyone is aware, having an advanced directive does NOT mean your wishes will be honored. I have seen too many times family members who are INSISTENT that we continue full treatment including CPR when the patient explicitly stated they didn't want these treatments. Even a physician's order for life sustaining treatment (POLST) form doesn't always do the trick. I have literally taken the POLST form in the room and shown it to the family of a dying patient and showed them that he communicated with the doctor that he didn't want treatment and the family still insisted we do everything. It's a sticky ethical dilemma, but the hospitals always do what your family wants us to do unless there is a durable power of attorney document designating a SINGLE decision maker. Advanced directives are a guideline, not exactly a legal document the hospital can fall back on if your family takes them to court. Even if some of your family wants to follow your wishes, if others in your family want everything done and they are vocal about it, without a DPOA we end up doing everything. So I always encourage my patients and my friends to fill out an advance directive and a DPOA for healthcare, then discuss with your DPOA your wishes so they will carry them out.
That's great rkaralius, as long as it remains as you stated the "Patients end-of-life wishes" are what is followed. Personal choice of the patient should trump all. For example, if it were you who were terminally ill and you choose to have every medical procedure that a doctor thinks could help you then great. I would never even dream of telling you you couldn't get it.
But the article seems to want to lead you down a different path. Keeping you alive just isn't worth it and your not worth it, it is your duty to accept your demise because you are going to cost too much. So just shut up and die. BTW if that is YOUR choice. Again I have no problem with that either.
Now then, when the Government steps in and forces you to have a meeting with your doctor and that doctor is being paid solelyby the Government what do you think the meeting will be like? Do you believe that doctor or councilor will be looking out for you or will he or she be making suggestion that will save the system money. Remember end-of like counseling is mandatory in Obamacare. I believe it will be their job to nudge you in the direction of saving money. Maybethey will even tell you that the medical procedures you might desire are unavailable to you for whatever reason. Again that person will be in the Government's employ.
When you take time to think about where this movement is headed it scares the hell out of alot of people. And rightly so IMHO.
"It is also extremely important for the medical community" - of course, rockafeller medicine is designed to kill you.
" We spend so much money on things that make absolutely no difference in bettering the end of peoples lives" - theres truth to that, since 'modern medicine' has ABSOLUTELY NOTHING THAT WILL HELP YOU. unless you have a broken arm, doctors are useless, they only 'manage' your problems, NOT FIX THEM. tell me JUST ONE THING THEY CURE???? just one thing???? bet you cant.
Your reasoning is correct. This is the death market
Forces you to have a meeting???
There was never any requirement that these meetings take place. All it did was allow payment to the physician for the office visit if a meeting was held.
Just more anti-ACA propaganda.
"Remember end-of like counseling is mandatory in Obamacare. I believe it will be their job to nudge you in the direction of saving money."
I disagree. You're forgetting that medical professionals practice with autonomy and have a moral and ethical obligation to serve our patients in their best interest. I have worked for both government and private hospitals, yet my practice and hospital policies about end of life care didn't change no matter what the setting.
Also, I think end of life counseling should be mandatory because it's a discussion that desperately needs to occur and nobody wants to talk about it. There is nothing in the legislation that mandates medical professionals to encourage our patients to forgo treatment if it's costly. In actuality, cost is hardly ever part of the discussion about end of life care. We are required to talk about the risks and benefits of possible treatments, which is called informed consent. So are you saying you don't want to have informed consent for the treatments you face at the end of your life? Death is inevitable, and I would rather have the difficult discussion with my patients when they can still speak for themselves instead of waiting for a crisis to occur and nobody knows what the patient wanted done.
Well, Tom, I don't have cancer anymore. That's 1.
Mandatory to be paid for by insurance companies, not mandatory to have.
"Advanced Directives" are for the most part an excellent idea, but what happens when the directive becomes an opportunity for a self indulgent suicide by a mentally ill person...?
This person knows what they are saying. I work as a therapist in nursing homes and see the same heartbreaking stories every day. Cholesterol blood draws at 4 a.m. on a 90 year old that they are too understaffed to take to the bathroom or get out of bed. To what end? All of health care needs a re-adjustment away from profit and prolongation to quality of life and dignity.
I completely agree with you tom jefferson2. I see the same thing at the nursing home where I work. Peaple having expensive and most of the time unnecessary tests done on their loved ones for their own peice of mind. They need to let their loved ones go in the most dignified way possible. Make the time that they have left more meaningful, instead of painful. All they care about is that they are loved and cared for, so love them and care about them. More people need to get power of attorney paperwork done and also the advanced directives so that your family has the peace of mind in knowing what you want and want you don't.
@tom jefferson2 Well... I had something called RVOT (Right Ventricular Outflow Tract Tachycardia). I was having severe arrhythmias that were affecting my everyday life, couldn't even climb stairs without almost passing out. I had a heart procedure called an ablation which caused the issue to TOTALLY abate. No medications for life, no further treatment needed. In other words A CURE!! I've since been able to get back on my bike and ride over 5,000 miles per year and I've lost 45 lbs. That's "just one thing they cure". I'm sure other folks have a hundred or more that they can attest to.
There are ways to evaluate for suicidal thoughts and behaviors. It's our job as medical professionals to differentiate. We have psyciatric doctors and nurses who can evaluate people we suspect are depressed or suicidal. It is our duty to protect these people. I think you're not taking into consideration the highly trained doctors and nurses who are taking care of these patients and can recognize the difference between terminal illness and mental illness.
Pat - Advance directives do not allow you to request euthanasia - I wish they did! - only to refuse artificial interventions to extend life or the dying process, and they are considered only if you are too gorked to say what you want at the time. A person who is legally competent and able to speak does not need any paperwork to refuse invasive procedures if he desires, for whatever motives, to let himself die of some illness or injury; his word suffices. Refusing, in advance, to be kept alive on tubes and machines if you should end up comatose or demented is never a self-indulgent act, unless caring for one's own dignity as a human being can be termed indulgence.
Yes, indeed, and WHATEVER IS MEANT BY "SELF-INDULGENT" SUICIDE, at any rate? Just what about being willing to die, is "self-indulgent". Should this not be self-determined" or "self-asserting". If not the "self", THEN JUST WHAT OR WHOM IS IT THAT SHOULD BE "INDULGED"? No authority for your life is higher than yourself!
I see MSNBC is promoting Obama's death panels again.
Quality is trump over quanity everytime. Why stay longer just to be so sick you cannot enjoy being alive with your loved ones? Makes very little sense to just prolong just to be as sick or sicker during this time.
My first wife became ill with many things. At 45 she was told she would not live beyond 50. We began to discuss things like end of life choices . She expressed she did not want any out of the ordinary attmpts to save her when the time came and I agreed. We were married for 37 years when that time came. She put up a strong fight and lived until she was 55. When we put her in the hospital for the last time with congestive heart failure and went into a coma I had to do as she wished because she would never want to go on in the conditon she was going to be left in. So I made the most difficult choice of my life. I allowed her meds to be stopped and all forms of support stopped. She lived for about 12 more hours then softly went. I caused me so much pain to make the call to end her life and our life together but it was her wish and my duty to her. Today would hve been her 59th birthday. Sometimes we have to let go to loved ones because not letting go would just be wrong.
AKM RN,
I don't necessarily disagree with you that such counselings are a good idea. But I do disagree with you that the Government should be able to make them "Mandatory" as you stated you support. If a doctor believes such a meeting is called for he or she is free to speak up at any time and advise their patient.
I guess I need some clarification from you about what you mean by mandatory.
Do you mean that it would be up to hospitals and doctors to implement such a policy? Or do you mean Government has the right to tell the doctor and the patient how it is going to be with impunity?
Sorry for your loss Avenger. I too had to make the same call with my wife for our15 day old son. And the doctors had no problem counseling us. As a matter of fact they brought in the entire team that was caring for him as well as the hospital Chaplin to inform us of our options. The did not pressure us in anyway to make one choice or the other. But their medical opinions did of course help guide us in our decision. We knew in our hearts it was time to let his suffering end and allow ours to begin. He would have been two this year. We miss him and love him dealry. So I can very much sympathize with you.
Sometimes life just isn't fair.
Shadowofself53,
I can't disagree with you much there either. But is it your decision to make for a stranger that you do not even know? Would you want someone you don't know making those decisions for you? Are you in favor of the Government making those decisions for you? Do you want a say or not?
Just asking.
End of life counseling is not mandatory in the ACA....it is offered as a free service to Medicare recipients.
I see saving money is the bottom line of the article. It is good that that hospital doesn't look at it that way. They just want what is best for the individual. Obama care is different. I spoke to a guy from New York where they have implemented some of that mess. They wouldn't pay for a treatment for his mother because it wasn't cost effective. He paid for it himself.
According to this article, money is the bottom line. When my father was first diagnosed with cancer, he was given 6 months. When he went back to the doctor 11 years later, he was told he could die any day. He was in the hospital less than a week. We had his funeral 9 months later. Had we followed through on what this article suggests, he would have been killed 12 years early in order to save a few bucks.
Personally, I don't agree with this sentiment, but there are millions of people who believe that while there is life, there is hope. Who are we to deny these people a basic life belief for the sake of a P&L Statement.
@ 2.24
"Obama care is different. I spoke to a guy from New York where they have implemented some of that mess. "
I'm afraid that you've been lied to. The only parts of the ACA that have been implemented so far are mandates on what insurance companies MUST pay for- like coverage for dependent children until age 26 or free annual mammograms. What this "guy" told you was pure bs.
@ 2.22
"Would you want someone you don't know making those decisions for you? Are you in favor of the Government making those decisions for you? Do you want a say or not?"
If you don't think that that's not already being done by insurance companies then you had better read your policy real closely and do a little research. Would YOU rather have a company driven by profits making the decision?
My parents both signed a DPOA for medical care and financial matters listing me as the person who should have the final say in medical situations and to step in and take care of them if they became incapable of making financial decisions. It is a heavy responsibility, but they knew that someone had to be the final word. This was after I called every member of my family in February 1999 to ask everybody what their wishes were in terms of end of life care and what to do after they died... my then-husband's stepsister had been murdered by her husband and it prompted me to ask the hard questions because SOMEONE had to know. In May of 1999 my brother died and I was the one who advised my parents what he wanted ... which was backed up by his widow. When Mom died in May of 2002, it was with my Dad and me at her side as they stopped the medication that was maintaining her heartbeat.
I think that end of life issue discussions (to include cremation or burial wishes) are very important to have BEFORE it gets to an end of life situation. You should have these discussions with your family while everyone is HEALTHY and then again if there is an illness or situation where there is time to review those wishes and make decisions. In both my mother's and brother's cases there was no time to review. My brother was dead at the age of 32 before his wife came home from work and my mother collapsed suddenly at the age of 55. So if we hadn't had those discussions, we would have been at a loss as a family to know how to proceed and what they would have wanted. As a society, we fear death when it is a natural part of life. We want to avoid talking about it as if bringing it up will hasten our own demise or the demise of a loved one. We shield our children from the fact that EVERYONE will die.
My grandfather was in a Luthern home in the same community in WI. The medical team sat down with him and us to do exactly what this article is talking about. Never was there a mention about cost. It was only about what he wanted in his end of life. Never did they make recommendations. It was very much a "if this happens, what do you want to happen?" Tell us what YOU (meaning my grandfather) want. It was also about comfort and peace. His death was peaceful and his end of life wishes were fulfilled. This made it easier on not only him, but also the family.
Ironic that I only live < 1 hour from Gundersen Lutheran - and have two of their clinics within 10 miles - but I use Mayo Health Care for my wife and I. And on this 'advanced directive?' We've both had those in place from about 17 years ago. Amazing enough, 11 years ago, my wife suffered a tragic accident and lay in a non-responsive coma for 22 days and came out of that with a traumatic brain injury, but even with the advanced directive in place, it wasn't like I 'had' to let her go - even though family members were encouraging me to do so because her expectancy to survive was so low. I insisted that she be kept comfortable but at 39 years old, 'unplugging' wasn't an option. She had the will to live and I bucked the family's intervention and 22 days later she came out of it. Disabled as she was/is - she has a much simpler life and I dedicated my life to caring for her. We have a good life and our medical directives are still in place, but these directives are like this article says; They are for chronic illness and not necessarily a traumatic event. As our families showed, it can be confused as a tool to end someone's life when there is certainly still a very good reason to keep fighting. My wife is glad I did and we are estranged from our families today because of it. But thanks to that - our stress levels are practically nonexistent.
Wow! So your respective families cut you both off because you chose to wait and see if your wife got better? I would think they'd be overjoyed you didn't 'unplug' her and that she woke up! I'll never understand people.
Reading this article, and your comment, has definitely put in my head that my husband and I need to sit down and have this discussion and write out our wishes. We never know when our journeys may come to an end.
Every thing you say is right on.entell the libs have to go do it there self they cant see the truth,
What the h3ll to "lib" have to do with any of this?
Didn't you know? According to folks like "old guy" and his ilk, "libs" are the whole reason we have death to begin with. Yup. The Grim Reaper is definitely a Democrat. (sarcasm)
In July 2009 I was diagnosed with Tongue Cancer.The poster person is a middle aged man who smokes, drinks, chews, and never has taken care of himself. I am the opposite; I have been intentional about food, exercise, massage, meditation and even my dogs have organic cotton beds. The prognosis was bleak because both my dentist and primary doc missed the 4cm tumor at the base of my tongue. I came home and prepared to take my own life. Imade all of the arrangements, Advanced Directive, Living Will, Health POwer of Attorney, Last Will and Testament, gave my body to the medical school in Chapel Hill, planned the celebration of life, put post it notes on favorite paintings and, at the urging of friends, began the extensive treatment of powerful chemo therapy, 7 weeks M-F of radiation, and surgery.
I am alive and doing well. Mostly because I did the legal work. Everyone close to me knows my wishes including making sure my dogs get back to Briard people.
I am three years out and now 73. I am prepared for whatever comes and feel great about that for myself, my family and friends.
During the treatment months I kept a journal which I self-published on Amazon and Barnes and Noble: Tongue Cancer and My Organic Cotton Socks. I hope it will help others know they have a voice in healthcare and in dying.
We all have a voice and now we might be learning how to talk about dying and death. It is part of our journey.
Thank you for this opportunity to comment.
I have had a DNR (do not resuscitate) on file since I found out I had cancer two years ago. My family knows exactly what I want to happen when my final days come. I have spoken to each family member about it and they fully understand and support my wishes.
I'm OK for now two years after treatment, but we all know what happens later. It will be back and with a vengeance. My particular type of cancer has a track record of 53% survivability at 5 years, then 31% at 10. There are statistically no survivors at the 15 year mark.
I fully accept the fact that I may be in the 47% that die in the first five years. That's OK with me. I have lived a full life and if it's my time then adios amigos. What I DON'T want is to be kept alive by artificial means while the meters runs on my health care costs for my family.
what you need is hemp oil, drinking water with a 10 ph level, NO SUGAR, NO GRAINS, NO COOKED VEGTIBLES, NO DAIRY. a raw vegteble diet, and all 90 vitimans, minerals, trace elements, (infowarsteam.com) and plenty of vitiman d from the sun. (it takes 48 hours for the oil in your skin to turn it to vitiman C, so no soap in the shower for a few days after sun bathing, AND NO SUNSCREEN. ...that is if you want to live, instead of 'accepting' what the croc-docs tell you.
But, Tom, is that a life worth living? Even if there was a word of truth to any of that... I hate to break it to you, but you can have all the magic snake oil you can get your hands on and you will still ldie someday. It is inevitable.
Okeeboy...
Having recently moved my mom into assisted living/nursing care and knowing that she also has a do not resuscitate order which she signs at every hospital admittance. My siblings and I have agreed to honor her request as well.
When I get around to dying, I just want to be comfortable. If I need large doses of morphine, then I should be able to get it and not have a doctor worry about getting into trouble. I guarantee that I will get addicted, but it won't be for a long time since I will be dying soon. I do not want to be cut, diced, poke, prodded etc. to get me to live another 2, 3, 4 more months.
People need to make their desires know to many people, including their doctor, friends, spouse and their CHILDREN. Children want parents to live forever, but its not going to happen and they need to come to terms with the idea that their parents are tired and may want to just go quietly.
Now to bring up a very serious discussion -- MONEY. We ( USA ) has a finite amount of money and resources to SPEND on health care. An 80 or 90 year old person should not eat up so much that children and younger people are unable to get the service they need.
I am 64 years old and I stronger believe life is precious, but I have lived a good life and need to pass things along to the next generation.
It's a popular misconception that morphine given for pain leads to addiction - actually it doesn't. In the case of pain, it binds with the pain receptors - not with the receptors that cause addiction. It should NEVER be withheld from people in pain.
I agree that expensive treatments to prolong the lives of the very old should be carefully considered, especially when it does them no real good. On the other hand, the overall situation should be examined - my father had surgery to remove a brain tumor at age 84 - he's now 90 and in good health. For him, it made sense. It wasn't cheap, but he and my mother are still able to live independently, which in the long run costs much less than being in a care facility. Overall, it was a good decision.
What is old, though? My husband is 51, but men on both sides of his family rarely reach age 60. I'm 50 and women on both sides of my family live to be nearly 100 if they do not have an accident or die in some other violent way. When he reaches age 59, it would seem that expensive health care options would be a waste for him, but when I reach age 59, I still have 40 years left. Who makes that decision if the patient cannot?
very true about addiction, n wth, who cares if someone is chronically ill and/or moving towards dying... n morphine is also given to help w/ heart rhythm, again, 'med' ppl are often so lazy n ill informed
Advance directive and a living will can be two different documents. Combining the two based on circumstances whether it be a person's health situation or a traumatic event will help to distinguish which route the medical team takes on behalf of the patient. Although I am only 40 years old, I do live with a disease with a shortened lifespan yet I am passing the median age. I have a career, work full time and lead a social life but on any given day my health can take a turn for the worse. With that in mind I had a living will drawn up with my attorney to take the burden off family or direct loved one from making such decisions. My living will includes an advance directive and instructions should I be in a car accident or other traumatic incident unrelated to my health. I don't care how old or young a person is these days. Once they hit 18 years of age, they should consider a living will and change it when life's path changes such as marriage, children and career advancement.
My former husband had prepared explicit written advance directives and had "forced" my daughters into talking about these issues over the past several years. In April he became terminally ill after complications from "routine" surgery, and lost the ability to verbally state his wishes, so the girls were faced with deciding whether to continue medical treatment for him. It was a relief to them to all ready know what he wanted, and to have it in writing. Though they didn't want to lose him and miss him terribly, they are at peace because they were able to allow him to determine for himself how he would die. I will bless his memory forever for giving this gift to our girls.
People forget that the real benefit to having an advance directive is just as you said - peace of mind for loved ones who aren't forced to make that painful decision, and then live with that decision. Your husband had a great deal of unselfish foresight to do what he did, and I'm sure that everyone involved - including he himself - is more at peace as a result.
My brothers and I lost our father in May, and we wish we had had his instructions, we had to make the desicions based on what we thought he would want, because he refused to talk to us about his wishes even though he had been diagnosed with small cell carcinoma a year earlier. If you have a chance to do this, DO IT!! Save your children or spouse from having to make these desicions for you.
As an ER nurse I have been amazed at the number of times chonically ill, severely debilitated, or even catatonic, 90 - 100 year old patients are brought in via ambulance from a nursing home only to have the relatives rush into the room saying "Please don't let Momma/Daddy die!" My first thought is "What did this patient do to you that would make you torture them this way?" I truly believe that a large portion of the resources we spend on restorative care for patients with NO chance of recovery is due to the inability of the relatives to come to terms with death. We should absolutely be providing palliative care. But there comes a point where we need to take a step back and ask "Are we really doing what this patient would WANT or doing this only because we feel guilty for not trying to 'cure' them?" Quanity does not necessarily equate to quality where life is concerned.
You are sooooooooo right my friend!
And WHO makes that decision ? The hospital ? A panel ? The government ? (those so called death squads) ? Or do I get to ?
Of course I understand about "advance directives"....but, if I for whatever reason, dont have one, WHO gets the right to choose ?
I mean, here we are, with the 43% on some type of government assistance, i.e., the Government decides the standard of LIVING of many of us - do we then give then the right to decide how and when we die ?
Don't get me wrong - I agree with much of what is said on here re quality of life and diminished returns - it's just that it gets a little nerve racking when you advocate a rule to be enforced by someone else when it comes to my death.
OhwOw....Ditto! Well said...your statement echos the reality of what we as ER/ICU nurses face every day.
Jeff-573598,
As long as you are of sound mind, you get to choose. Always has been, as far as I can tell always will be. Problem arises when you haven't told anyone what you want and you show up in my office or in a hospital emergency room and can't speak for yourself. Then your "next-of-kin" get to decide. If you have a spouse, they come first in the hierarchy, then adult children, then parents, etc. I actually have the "substitute decision maker hierarchy" for the State of Illinois as a tag on my ID badge, which is what we use unless you have named a power of attorney for health care. If you haven't any next of kin, and if you haven't expressly chosen someone to speak for you, you get everything done in this state unless someone is willing to spend the money to have a guardian appointed for you.
The state never, I repeat never, makes these decisions. I have been a practicing physician for over 30 years and that has never been suggested to me by any government or hospital official. Period.
So that begs the question - why haven't you filled out advance directives? Why don't you have a durable power of attorney for healthcare? It's free, easy, and will save you and your family a lot of trouble in the future. I signed mine when I was 45; I recommend it to everyone.
We can't choose whether or not to die; we will die. How we die we may actually have some control over.
Jeff, no one is talking about a "rule enforced by someone else" here. The whole point is personal choice and the need to make your choices known while you still can. "Death panels" only exist in the imaginations of extreme right-wing propagandists and insurance companies. There are not nor never have been death panels or anything like that in Obama's health care plan -- only the guarantee that you will have the opportunity to discuss the issues with your doctor so that you can make an informed decision for yourself and be able to convey those choices when the time comes.
Amen, Ohwow,
Anyone who has worked in a hospital (I did for almost 33 years, although not in a nursing capacity) knows that there are far worse things than dying. My father, although he did not have an advanced directive, had talked to us and prepared us for his passing. He said that he was old, and told us he did not want to be kept alive artificially. He was 87 when he had a bad fall and his 3 year decline began. When he had to enter a nursing home, it was with a heavy heart, but with the knowledge that I was following his wishes that I made him a Do Not Resuscitate patient. I visited every day after work, took him riding on weekends, and sometimes brought him home for overnight visits. He was fully conscious and although he had a bit of dementia, he always remembered who I was. I was indeed fortunate to be with him when he passed from this life letting nature take its course as he had wished.
My mother, on the other hand, refused to even discuss the issue. She was struck by a heart attack exiting her car in a grocery store parking lot one evening. Since she was alone, an ambulance was called, and her heart restarted. She never awoke from her coma. I was forced to make her decisions. I made her a DNR based on the fact that she had been an indomitable woman, the doctor had said she had no brain activity, and I did not think she would want to live totally dependent.
The doctor then suggested disconnecting her from the oxygen, and that was my stumbling block; my heart was just too heavy to take away her air. I couldn't do it. The doctor then said they would disconnect the oxygen and if she didn't breathe on her own, they would reconnect. I agreed to that. Mamma did breathe on her own, and then the DNR took precedence when she stopped a week later. I would never want to put my relatives through the agony of making my end-of-life decisions as I had to for my mother.
I signed my own advance directive about a month after Mamma passed away.
Folks out yhere--You may have an advanced directive and you may think yu are ok with your choices, but you need to renew them at times, because the laws change. My experience with this is through a close friend. Her family consisted of one son and a daughter in law, who had very very little to do with her. I did the dr visits and everything for hr. She was admitted to the hospital, I took her when she was admitted. She was ask this question. Who do you want the hospital to get in touch with if something happens. She looked at the woman and pointed to me and said her. You probably won't be able to find my son. I know you can find her. The nurse put my name on that paper. When she had an emergency and ended up having a tubae put in so she could breath, ended up in the intensive care united, they called me to see who was in charge of her health. I told her she had an advance directive with her doctor. I toldher the sons name and gave her his number. I had called them when she was admitted to the hospital, but no respone. When I got to the unit, the son was there. I went into the unit and it seems that her admitting papers were no where in her chart. The social worker came to me and we talked and she told me that the advanace directive was no longer valid, that the laws had changed, since she named me on her admit papers. I was the one who has to make dicisions.She went with me to talk to the son and she told him the same thing. I was in shock to discover that. I told her son that the he would make the choices but if I did not approve I would step in. My friend had cancer in the voice box. Surgury was needed. She is well and happy and productive.that happened 7years ago. She is now 87 and going strong. We have a time to live and a time to die. Only God can make that decision. Yes I do have anvanced directive. My family is aware of it. Some times I wonder about DNR. I also worked in healtcare for many years. I am 77, still hold a job, in fairly good health for my age. I wonder how many lives could have been saved without that. Meaning young. , middle aged people and some elders as well. As I said only God knows when we live or when we die.
You are correct; even an advance directive is no surety that your wishes will be followed. Our baby sister who was in a nursing home after her first heart attack had disabled her insisted on having one as well as a DNR. When she had a second heart attack two months after our mother passed, no one thought to go for her chart; instead they ordered an ambulance, and went to work to bring her back. During the process, finally someone thought to check her chart, and found the DNR. They had to call her doctor to get permission to stop attempts to resuscitate her. She passed away at the age of 34. We were not called until she was gone.
There is no surety about anything in this world, but at least having an advanced directive in place lets all of your loved ones know your wishes. They won't have the agony of trying to make your end-of-life decisions without knowing what you would have wanted, even if they have trouble following it.
And, as Franklin Little suggests above, do keep the document updated as your circumstances change.
In July 2009 I was diagnosed with Tongue Cancer. The poster person for this cancer is a middle age man who smokes, drinks, chews and has never taken care of his health. At 70, I had spent decades learning and practising ways to care for my whole health: organic foods, filtered water, safe paints, no teflon only stainless, no plastic only glass, power walking, swimming, gardening plus I researched and engaged good ways to maintain my health: massage, chiropractor, and meditation. Even my dogs enjoy organic foods and sleep on organic cottom beds. My prognosis was dismal. The 4cm tumor was missed by both dentist and primary doc. The ENT doc said by the time people get to her, "It is often too late". I came home to prepare for my end either by my own hand, the treatments or the eventual progress of cancer. I prepared an Advance Directive, A Living Will, a Health Power of Attorney, my Last Will and Testament, bequeathed my body to the medical school in Chapel Hill and planned a simple and an omni-faith celebration. Briard Rescue was on notice for the dogs (both are rescues) and off I went at the urging of friends to try the treatments.
My family, my friends and neighbors all knew my decisions and supported them.
We could talk about them. Being open and direct helped me and them. Most of them have had discussions with family and have their plans set.
We live together, we care for each other, we celebrate life and honor each other's wishes.
I would hope that we can learn to be a culture that learns how to talk about dying and death. I was given a great and precious gift.
I now work as a volunteer for Hospice. I am 73, doing well and have just updated all of my preparations and will; I also renewed my passport.
Thanks for the opportunity to comment.
Lynnsy Logue
Author Tongue Cancer and My Organic Cotton Socks
A journal/memoir, self published Amazon and Barnes and Noble
Your posts sound more like an advertisement for your book than a comment on the story. Do you look for stories you can post this on, and then always post it twice so no one can possibly miss it?
Opportunistic commenting at its finest! (just in case you didn't see it, that was sarcasm dripping from my keyboard)
Carefully read the Obamacare bill/law (which Pelosi has not done). You will note the 'panel' that will be politically appointed, which will determine treatment policies. Make no mistake about it, this decision will removed from the patient's and family's pervue. This panel will have the ability to determine which tests and procedures are allowed/paid-for by the government. That simply means the decision will be taken from you and your Doctor and placed into the hands of politicians.
We are already seeing this process play-out with PSA tests, colonoscopies, pap smears, and mammograms. Our brilliant government, using and quoting poorly designed studies, are causing Doctor's to decrease the frequency of these tests.
In truth, if you die earlier than later, the government will save money. Which way do you really think the government is going to choose???
So the truth is that Obamacare is not really proposing anything new. "Treatment policies" already exist in Medicare and private insurance (especially private insurance).
But just think how much better this would be! Imagine the reduction in Social Security and Medicare costs. After all, isn't this exactly what the GOP wants?
Aren't the insurance companies doing this now? I have had two treatments that a doctor prescribed which were very expensive and discovered that my insurance did not cover it, so I could have the treatment if I pay for it myself. Why do I have insurance?
granpuppy---The medicare and the supplements we buy are already doing that, I have been refused 3 tests my dr wanted me to have. The answer was no thank you, cannot do. These were things that medicare had always paid for years, until bamacare was law.
You can ask for any test or treatment available as long as you sign off knowing that YOU will be billed for it. I've had different insurances throughout my life and not one of them will pay for everything just because you want it or because the doctor says you need it. They all have rules and limits. I'd be more shocked to learn that the government was nicer than the private insurances.
I just don't understand people thinking it is something new to be allowed or denied treatment. your doctor or hospital isn't denying you, it's the health plan you choose. If you have choices at your work place or go out and buy your own-- you choose the plan you want and can afford. of course the more you pay for premiums the more options you will have. If something 's not covered in your plan than you make the choice of it's necessity and if have to , work out a payment plan --Wisconsin medicaid is a great program-- i have never needed it, but glad its there for people who need it. But yes Amanda, I have seen people get things covered who are on medicaid that I would choose not to do because of the expense and it not being neccesary for my well being, but because medicaid covers it they do it. After all its only fair that they get the same opportunity as everyone else and because its "free" why not.(Yes I say that with sarcasm, there are people who really need medicaid and then there those who make sure they qualify for coverage because its easy doing nothing ) regarding the end of life issue-- if I am fortunate to live to 80 and then become critically ill, I don't feel the need to have hundreds of thousands of dollars spent to keep me alive for a few months-spending most of the time in the hospital. I 'd rather spend all my remaining time being with family , doing the things I love to do. but that's a choice I will make. everyones situation will be different. I definitely agree that it helps the whole family to sit down and talk about it and to have people help you with that discussion. I will die -- hopefully later than sooner- what happens;happens
I am 78 and have had the same MD for 54 years. Mom passed at 97, so I sort of can go with the odds. I have no ex-wives, no kids, and my nephews and nieces have not spoken with me for 5 years. (That's great !) All they ever want is money.
My neat neighbor asked me not to make him my executor. "You got too much stuff, Ray. I don't want to clean it up."
I tried setting up a scholarship. The campus wants 8% to administer it. A trust fund, the same. So, I'll likely outlive any current friends and this makes finding an executor a bit difficult.
Most likely I'll find some animal fund and give it to the dogs and horses, etc...
Not a fortune, but enough to haggle about.
rt
buddy, you are just an IDIOT!
Now why do you say that Amache?
Why is he an idiot? He has no family and no one who can handle his last requests. It's a bit sad, really, I feel for him.
Dear Ray, I'm sorry you are alone, no one should ever be alone. The animals will appriciate your kind jester,but it would be nice to see you have a companion or family member as well. Not everyone only cares about money, give someone a chance.
Ray,
I believe there are kind folks out there who would care for YOU, not your wealth. We are always rescuing dogs—I love your decision. But there is no substitute for good people at your side. Glad you have a neat neighbor!
Ray, you have to make sure that you state in your will the names of the relatives that you specifically want to exclude and why. Otherwise, they can contest the will saying you were not of sound mind when you executed it.
Yep if the Republicans and Tea Party have their way, you will have no choice to extend anything if you are poor, elderly, or disabled.
take a basic biology course.....ever here of Darwin? Boo hoo, too bad, so sad.
We are all going to die.........most people have made their own fate but dont want to 'live' with their circumstances.........
But it's much better if you die sooner rather than later because it will save everyone else the cost of your treatment. That's the GOP plan.
Cute, severed. Notice you continue to repeat it.
Just for the board, please list your facts about the GOP plan.
We need more people thinking like this poor guy. His situation is krappy but it is realistic.
TOO many people think that they need to do EVERYTHING that is HUMANLY possible to survive.......well, WE dont have those sort of resources...........if the individual is forturnate enough to have them, well, be our guess and spend away on frutility but dont bankrupt the next generation because you were dealt a bad hand or WORSE if you smoked, didnt eat reasonably well, get your butt off the couch etc......
Sad. Just sad that this would even be a question?
It is a question that everyone will face. I for one wouldn't want to be kept alive for a few extra months, in pain or unresponsive. No one gets out alive.
Kathy, you should probably wait to see if you even get old before declaring all this daring conclusions.
Kathy, you should probably wait to see if you even get old before declaring all these daring conclusions
I am 63 and was diagnosed with stage three colon cancer 10 years ago, I went thru the chemo treatments but no radiation treatments. I now have incurable COPD and that is because of heavy smoking for 35 years. I am almost possitive the damage was done before smoking was shown to harm you. I also have hypertension. I will not put a financial burden on my wife because of this. When the time comes I want a to be cremated, I refuse to pay 6-8 thousand dollars to the rip off funeral homes aside from the fact of visually seeing what happens to the loved ones at a funeral home. I have told my family as much also. As for dying I am sure that I want to go as most people do, with no pain. I have end of life directives that my wife knows about and if my Doctor tells her that there is virtually no chance of my survival and if I did I would require constant personal care then feed me morphine constanly until I take my last breath. This is not pride but it is because I love my wife to much to put her through that. I believe in God and Jesus and I am ready to go when they say to, I will not put my Doctor in the place of playing God and trying to keep me alive at all cost. I must also admit I am sick and tired of what is going on in the only country in the world that God himself created where he could be worshiped in peace. The evil and immorality that has over taken America is the beginning of the end and as a beat up old man I could not do much to protect my loved ones when America falls. I do not want to be around when that happens. But I also know and except that God is in control and how long I am here is in his hands.
I find it sad that we have two choices for end of life "care": Die a slow, agonizing death trying to live or die a slow, agonizing death trying to die. It is illegal for a health care professional to aid in a "suicide" or advance a "natural death." Advance directives only lead to dying of starvation or a complication, such as pneumonia. If they included a choice to be given an overdose of morphine, then and only then, would the patient have true control over his or her own death. I would also not want anyone else making such a choice for me, no matter how well they thought they knew me.
So if consumers want to interivew their hospital to see what end-of-life options might be available...is there a "menu" us aging adults could ask for?? How could I make this my known opinions & desired services at my hospital? Or would this be something I simply carry on my personal ID chip?
It's is so ironic. The same people who yell, death panels, are so wiling to do draconian fiscal measures on other parts of the American population. Yet, quality of life issues and when we choose to die , has been a growing phenomena that has been present, ever since we started making great strides in medicine over the last 60 years. Before we had a lawyer peeking behind every curtain, a lot of doctors would just leave the sedating drugs available and not give a time limit for dosage, just the instructions, keep the patient comfortable and everyone knew the score. Now, with the fact we can keep the body going with artificial breathing, kidney and even some liver functions, we are faced with living cadavers. I have no wish for the biological singularity of virtual immortality, which is suppose to be within 50 years. To me, life is a sonnet, with a fixed length and measure. I just want to leave on a good note and not a Frankenstein monster, more dead than alive.
Those of you who would force patients to suffer for your own morality are the sick ones here...shame on you for thinking your religious believes should trump anothers wishes...
Where is stupid Sarah Palin and her death panels anyway? Those seniors that are takers need to be taken care of...kmow what I mean?
With the Obama death camps looming over the horizon, we're all in trouble unless you're a homosexual like he is.
another stupid question from the media..
When my father was diagnosed with lung cancer he had a frank discussion with the doctor in charge of his care. The doctor told my dad, because his was more advanced when it was detected, that he could have surgery to remove the tumors (there were 3) which would take a lot of his lung tissue, radiation following surgery which would take more lung tissue, then finally chemo. He told us that he might get two years with these treatments but likely not much more than 1 to 1.5 years but, his quality of life would be poor because of the lung tissue loss. My dad opted not to have anything done and he survived a year, a good year where he was able to do a lot of things he wanted. The last three weeks of this life were the worst because the cancer had metastasised to his spine; this was painful. He was given pain medications through Hospice care at home and passed away after three weeks. He never regretted his decision and was happy to have had his last year of enjoyable life before he passed. I'm not saying this would have been everyones decision, that has to be an individual choice but, that choice needs to be provided to the patient in a clear manner so they can decide.
My grandfather (paternal) made the same decision when he was diagnosed with lung cancer. He puttered around the house for a few months until the pain began to be too much. Yes, the last couple of months were not good, but the only thing that treatment would have done was put off those two months for maybe a year. In the end, would have been the same.
I suspect my father (85) will make the same decision if he has to.
Thank you for this good article! I have worked in skilled nursing facilities and an acute care hospital during the 1980's and 90's (first CNA, then after going back to college, social services). One thing is for sure, I choose quality over quantity any day! And yes, advance directives and living wills surely DO help both the patient and family. Thank you again!
It should extend the life. We need every tax payer we can have
How much do you earn to be a PAC troll on the boards? I'm looking for another part-time gig.