BOSTON, Mass. (Ivanhoe Newswire) - Medical technology has brought us breakthroughs and life-saving treatments, allowing millions to live longer, but at what point is it too much?
Innovative surgeries, potent drugs and high-tech machines. Today, there are more ways to keep us alive than ever before. Judy Lucas knows; doctors told her husband of 39 years he had fatal pancreatic cancer
"We were shocked, absolutely shocked," Judy Lucas told Ivanhoe.
George tried chemo and radiation to give himself more time, but the side effects became unbearable.
"He finally said, ‘that's it,'" Judy said.
George decided he wanted to die with his loved ones by his side and without harsh treatments wearing him down. It's a manner of death doctor Ken Murray said most physicians would choose themselves.
"These things, I think most doctors don't look at as prolonging life. They look at it as prolonging death," Ken Murray, MD, author of How Doctor's Die, explained.
Murray's blog has become an Internet sensation. In it he writes about how so many of his colleagues, when it comes to their own care, refuse dialysis, ventilators and most commonly resuscitation.
"We know how terrible the results are from CPR," Dr. Murray said. "I've done it hundreds of times, and I can count on one hand the people who actually did ok."
He describes aggressive treatment at the end of life as "misery we would not inflict on a terrorist" but says patients often request therapies to the very end.
"People are sicker now before they die than at any time in human history," Ira Byock, M.D., a palliative care specialist at Dartmouth Hitchcock Medical Center, and author of Best Care Possible, said.
He said dying is becoming harder for patients and their families.
"The fact is there are worse things than having someone you love die. Most basically, it's having the person you love die badly," Dr. Byock said.
Doctor Heidi Klepin agrees some may be treated for too long, but she warns others, especially older patients may be undertreated.
"Don't make an assumption for example that an 80 year old can't benefit and tolerate standard therapy for a given cancer," Heidi D. Klepin, M.D., MS, an assistant professor of internal medicine hematology and oncology at Wake Forest Baptist Health, said.
In one study just 50 percent of patients 75 years or older with stage three colon cancer received chemo after surgery compared to 87 percent of younger patients. A recent British report states "under-treatment" is a contributing factor in about 14-thousand avoidable cancer deaths in patients 75 and older each year. Doctors told 91-year-old Bill Owen not to try any treatment when he was diagnosed with stage four lymphoma.
"The doctor that we had at that time said to come home and enjoy what we had," Barbara Owen, Bill's wife, told Ivanhoe.
Bill got a second opinion and five years after chemo and radiation he's going strong. The right treatment saved his life.
"I still go all day long," Bill Owen said.
For George and Judy, hospice care has made a difficult time a little easier.
A decision about dying we'll all have to face. What will you choose? Aggressive treatment at the end of life is also expensive. It can cost up to $10,000 a day to maintain someone in ICU. By law, Medicare cannot reject any treatment based on cost. In 2009, Medicare spent $50 billion for doctor and hospital bills during the last two months of patients' lives. That's more than the budgets for Homeland Security or the Department of Education.
BACKGROUND: More than 80 percent of Americans who die have a long, progressive illness such as cancer, heart failure or Alzheimer's. According to the Dartmouth Atlas Project, more than 80 percent of these patients say they want to avoid hospitalization and intensive care when they are dying. However, hospitalizations during the last six months of life are on the rise. Treating chronic illness in the last two years of life eats up nearly one-third of all Medicare dollars. The average time spent in hospice and palliative care, which stress comfort once an illness can't be cured, is falling because many patients are starting too late. In 2008, one-third of people who received hospice care had it for a week or less, according to the National Hospice and Palliative Care Organization. (SOURCE: Associated Press article)
TOO MUCH TREATMENT? Guidelines from an alliance of leading cancer centers suggest patients whose cancer has spread should stop getting anti-cancer drugs if sequential attempts with three different drugs fail to shrink the tumors. However, almost 20 percent of colorectal cancer patients with disease that has spread are on at least their fourth chemotherapy drug, according to IntrinsiQ. The same applies for about 12 percent of metastatic breast cancer patients and 12 percent of those with lung cancer. (SOURCE: Associated Press article)
A HARDER DEATH? Many doctors say too much treatment at the end of life can make the dying process more difficult for patients and their loved ones. "People are sicker now before they die than at any time in human history," Dr. Ira Byock, director of palliative care at Dartmouth-Hitchcock Medical Center, told Ivanhoe. "People used to die of things that they now live with for months and sometimes even years … In the quest to keep people alive, we close the doors that nature gives us to die gently."
THE COST: In 2009, Medicare paid $50 billion just for doctor and hospital bills during the last two months of patients' lives. Experts estimate that between 20 percent and 30 percent of these medical expenses may have no meaningful impact. It can cost up to $10,000 per day to maintain a patient in the intensive care unit. Some patients stay in ICU for weeks or even months. In fact, nearly 20 percent of Americans spend their last days in an ICU. (SOURCE: CBS News)
Ira Byock, MD, a Palliative Care Specialist at Dartmouth-Hitchcock Medical Center and Author of "Best Care possible", talks about at what point is living just too much?
How would you say the "The Business of Dying," has changed over the last 20 years?
Dr. Byock: Things have changed so rapidly even in the last 20 years. Medical technology has marched right along and even though hospice and palliative care have also grown, movement in our field has been dwarfed by some of the clinical advances in the science and technology of disease treatment. America has a "disease treatment system," more than a healthcare system. That is not entirely bad, but with the sole focus of treating disease, we often make it harder for people to actually die. It sounds strange when you first hear it, but in fact, people are sicker before they die now than at any time in human history. In fact, even during the middle part of the 20th century, people used to die of things that they now live with for months and sometimes even years. Congestive heart failure used to take people away quite quickly. The first time a person had pulmonary edema, he would die. Nowadays, the first episode of pulmonary edema is actually just a bump in the road that starts the process of taking care of people with serious congestive heart failure. Many people live quite well with this illness for years. That is a good thing. In the middle part of the 20th century, people used to die of kidney failure. Nowadays, there are 2 types of dialysis and kidney transplantation, and people often live for years with renal failure.
The problem is that even as we celebrate the advances in medical treatment for disease, and the fact that we are now living longer with diseases that used to kill us, we have yet to make even one person immortal. What we have done is make it harder to die. As a culture, we have mis-learned that more treatment for disease equals better care. For many of us, that is true throughout most of the course of our lives. But because we have not made anybody immortal, at some point in time, more treatment for disease is not better care for the person living with illness. At some point, the focus must shift to balancing disease treatment with quality of life.
Often, I will meet somebody who is seriously ill and being offered a new treatment for their cancer or for their congestive heart failure and, of course, they want it because it represents being able to live longer. But when I say ‘I understand that you want any treatment for your disease that can help you live longer and live well, but is it also true – would it be right to say – that when your time eventually comes you would like to die gently?' Well, virtually nobody says No to that! Unless we ask that question, it looks as though people will take treatments at all costs; even if it diminishes their quality of life. In fact, that is not true.
Not only doctors, but also all who love our parents and anyone who is ill in our families, have to acknowledge that most people want to die gently, and we have to make plans for that contingency too. That involves balancing the potential benefits of treatment against the known burdens and risks of a treatment. Sometimes treatments can actually erode our quality of life, and the fact is that when we or someone we love is seriously ill, the worst thing we can imagine is that we might die or that our mother or father might die.
The fact is there are worse things than having someone you love die. Most basically, it is having the person you love die badly, suffering as he or she dies. Maybe even worse than that, is later realizing that much of their suffering could have been avoided, was unnecessary. As we go forward, as a healthcare system – but really as a culture – we have to acknowledge that we are mortal. We are not going to get out of this one alive. We need to use all the medical technology available to fight disease and live longer and live well, but also not ignore how we die. We need to make plans so that people can die with relative comfort, not worried about dying in agony, and that they can feel somewhat complete before they leave this life.
Is there such a thing as living too long?
Dr. Byock: If all that we look at is living longer, we are making a serious error because there is suffering at the end of life that we are all prone to and it can be lessened. But dying is hard. It will always be hard. These days, in our sole focus of prolonging life, we are making it much harder than it needs to be for the individual and for their family. In a sense, we are treating people as if they were only biology and we are much more than our bodies. We have people we love. We exist in families. We exist in communities. We have emotions and even a spiritual sense of being connected to something larger than ourselves. It may be God, or for some their family which will live on, hopefully for generations, beyond them. These aspects of the human condition matter to people as they are facing the end of life. If we ignore this and only focus on keeping their hearts and their lungs working longer, then we actually disserve people. We make it harder than it needs to be – and we circumvent or preclude the real value that also is there during these last chapters of our lives.
What are some of the other things that we have to weigh and realize to not make mistakes in our own care or the care of someone that we love?
Dr. Byock: All of this is motivated by love. We love life. We love people – our families, our friends. We do not want to lose any of them. But nobody is immortal. In the quest to keep people alive, and fight disease, sometimes we make things harder and we lose opportunities. People, in general, value having a sense of completion before they leave this life. They want to know that their business and their affairs are in order, that projects that they have been working on have been turned over or completed. People do not want to leave loose ends in their work life, but they also do not want to leave loose ends in their personal life. They want to make amends.
In general, most people would like to make amends with people that they have loved or once loved and from whom they have become estranged or have tensions. When one or the other is seriously ill, it often matters to them to be back in contact to say the things that would be left unsaid. People commonly value a chance to review their lives and to tell their stories. They value having a sense that the legacy they leave to their children and grandchildren are more than just "things". Our stories are the glue that holds families together and give families identities across generations. That often matters to people.
Part of what our team does is help people to be relatively comfortable – we are good at treating symptoms and alleviating the physical burden of late stage disease – but we also attend to the personal aspects of illness. We help people explore and achieve some sense of meaning about their personal life. It is important to acknowledge that illness and dying are not just medical. They are mostly and most profoundly personal for the individual and family. The problem that we have these days is that we treat people as if they are the diseases that they have, and we suppress any of the personal aspects of this very difficult, but very potentially rich time in their lives and the lives of their families.
What I am gathering from you then is, in some ways, there is a real beauty to death or there can be, and we can take that away from someone if we are not careful.
Dr. Byock: I would say that there are opportunities during this difficult time of life we call dying, and if we totally ignore that and think that in service of prolonging life we have to push those opportunities aside, we actually disserve people. The best care possible involves taking care of people's organs and their diseases, but also taking care of them as a whole person – who has a family, who has a personal life, an inner life, and who may have spiritual concerns.
Members of our team are doing this as clinicians — doctors, nurses, social workers, chaplains — but also as friends and loved ones of people who are ill for the best reasons. We love life, we love people. But to be truly affirming of life, one has to be affirming of all of life. All of life includes times of illness, family caregiving, dying, and grief. If we ignore them or hold them at a distance because of disease treatments, then we are actually ultimately failing the people we are trying to serve.
How can our culture make that shift from treatment to prevention?
Dr. Byock: I think we have to make the shift from treatment to care. Caring well for people is more than just treating their physical problems. It is caring for them as whole persons, and frankly, as families. We are not doing a great job of that in America today. It is getting better. The problem is that as medical advances continue, there is a strong pull, a seduction, to continue to focus on treating disease and helping people live longer. That is not wrong, but we have to be able to acknowledge that people are eventually going to die of something.
In the quest to keep people alive we close the doors that nature, or if you prefer God, has given us to die gently. In doing so, we force the body to find other ways to leave this life. Inadvertently, we make it harder to die. I think the real challenge is that we live in unprecedented times. There has never been a time in human history when we had so much power to prolong life. We – as a health system, but also as a culture – have to grow the rest of the way up. We have to factor in that human life is a precious gift, but it is a finite gift.
How can we make use of all the medical technology to prolong life while still preserving the opportunity to die gently? Right now, it is also hard because the majority of the healthcare money goes to prolonging life. What I do and what hospice programs do, is not nearly as well reimbursed or supported by medical financing. People love life. If I have learned anything in the almost 35 years that I have been practicing medicine, it is that people don't want to be dead. It often does not become easier for them to accept their mortality as they become sicker. Sometimes they just become more entrenched in wanting to fight to stay alive. I know that and I honor it. But I also know that in 35 years of doing this, I have not seen anybody live forever.
At some point, if I am going to be a responsible physician, if we are going to be a responsive health system and society, we have to make good use of the medical technology, but also, through a process of individualized decision-making, help people decide what the best care is for them, not just the best treatments. After acknowledging what treatments are available for their disease, an individualized process of shared decision-making must follow where doctors and patients and families work together to determine what the best care is for the person who is ill.
Does that include quality of life?
Dr. Byock: Let's consider cancer care. If somebody has a non-small lung cancer, a very common type of lung cancer that has spread through their bodies, it is incurable. Now, it can be treated with chemotherapy, and for some period of time, often the balance of the benefits of chemotherapy versus the burdens and the risks of chemotherapy clearly weigh toward treatment. But at some point, it does not.
When all that we are doing is treating the disease, we can make people worse. We can further erode the quality of their life during the last weeks or days of their life. When I see a patient who is getting chemotherapy and then dies within 2 days of their last dose of chemotherapy with metastatic lung cancer, I think to myself, that is really not good care. We did not serve that person well. Yet, today, in the health system, we pay for it. There is no push back. In a sense, we are incentivizing care that is not good for the person with the illness and I think that is a problem. Within the health system, we have to be mature enough to be able to say: we are not going to pay for treatment that we know is not in a human being's best interest. That is going to take some courage within the health system. It is going to take some courage on the part of the policy makers and the body politic, all of us who vote and write letters to politicians are going to have to support this notion that more treatment is not always better care.
How much money could be saved if we focused more on end of life care rather than the overtreatment?
Dr. Byock: It is not ill motivated. I am not suggesting that there are money grubbing doctors or health systems or pharmaceutical companies. That is not really where it is coming from. It is coming from a love of life, but the problem still exists. What ends up happening, even though it is well motivated, is that sometimes we are giving people really bad care during the last few months of life. Yes, we could save significant amounts of money if we were focused on the best care possible for people, acknowledging that at some point in time the best care has to shift to at least encompass how they can die in a way that meets their values, their preferences – which is to die gently.
Right now, 20 percent of Americans die in ICUs. Very few people want to do that. They want to live longer and live well, but they do not want to die tethered to machines often with their hands tied so they do not reflexively pull out a tube. Most of that could be avoided – but not all of it, because some of it happens in the midst of a legitimate quest to save a life where there is a good shot of doing that. However, much of it happens because nobody – doctors, patients, families – wants to have the conversation and acknowledge that somebody is actually going to face the end of life. We have to get over that resistance first and foremost to improve the quality of care we give people and improve their quality of life as they are dying.
In fact, if we kept our eye focused on better quality, we would save substantial amounts of money. We are not going to balance the budget on improving care, but we could save billions and billions of dollars simply by being truly committed to giving people the best care possible through the end of life. We are not doing that now. We are giving the best disease treatments, but as I said that is actually in tension with giving the best care for human beings.
And, that is why you wrote your book, The Best Care Possible.
Dr. Byock: I wrote, The Best Care Possible because that is the only thing that I know for sure everybody agrees on. When we, or someone we love, is seriously ill, we want "the best care possible" for them or for ourselves. Now, one size does not fit all. The best care today may be quite different from the best care for you 3 or 4 months from now if you got a serious illness. I do know, and I explain through stories in the book, how we can define and identify what "the best care" is for "you" (the reader) in the context of your illness, your family, your ethnicity, and religious beliefs and family traditions. Going forward, as we work together, we can clarify and refine and revise what the best care is at a future time when your condition may have changed either for better or worse. That, we can do.
That is not rocket science. It is what we do day in and day out in palliative care. It can be taught. Part of the reason I wrote the book is to teach through stories and through showing people that the best care possible actually is achievable even today. Hopefully the book will help us scale up the practice of shared decision-making and palliative care. All doctors can be trained in doing this and all health systems can provide the best care possible. We have to simply use disease treatments within a larger context of caring for whole persons and families.
It is honoring each individual and at the same time giving them the best possible care and allowing them to live out their final days?
Dr. Byock: Consistent with their values and their choices, yes. If you do not have this conversation, the assumption is that more treatment for the disease is always better care. I am telling you that this approach may lead people to places that they actually do not want to be. Even today, I commonly see people who, having lost a family member in the ICU or died on the cardiology unit, reflect back and say, "Boy, Joe would not have wanted this." That is very common across the country. Outcomes where people feel badly about how their loved one has died can in large measure be avoided -- IF we have the conversations and go through this process of shared decision-making to clarify what the best care would be at this point in time.
How often do you come across somebody that says "Doc, should I be doing this or is this worth it?"
Dr. Byock: Commonly. I meet with people who are struggling with decisions about their disease treatments pretty much every day. Are the potential benefits of this next treatment worth the burdens and the risks? That balance really is key to determining what the best care is. We go through this every day with people. It's hard to know what the best care is before actually talking with people and knowing who they are as a person. I can go from one room to the next and, even though I may meet a person with an almost identical medical condition, the choices and the plan of care may be quite different because the approach has to be personalized. The illness is personal. It is only partly medical. When that is understood, then we are not simply pawns or slaves to disease or the medical treatment complex. We become savvy users of medical technology and disease treatment.
How do you figure out what is best? What specific strategies do you offer?
Dr. Byock: It is so important to have the conversation and I know it is hard to start the conversation. Use this interview. Be able to say to your father or mother today "I saw this guy on TV (or I read this interview on the web) and he says it is important that we have the conversation." That is enough to start the conversation. Be able to say, "I want to make sure that you are getting the best care through the end of life, Dad. I need to know what your preferences would be." "When the end of your life comes, Dad, where do you want to be? How do you want to be cared for? I want to know so that we will do whatever we can to come as close as we can to meet your needs."
Often people will say, "I do not want to be a burden to you, Dear". In one sense we all are burdens to one another. That is what happens. We love one another. You can't stop that. But if I have learned anything in the 35 years I have been doing this, it is that illness and dying are hard.
Does aggressive care for someone who is at the end of life make it harder or easier for the patient?
Dr. Byock: If somebody is seriously ill with a progressive illness and gradually approaching the end of life, at some point in time, aggressive treatments for their disease may actually be poorer quality care for them as a person. For example, if a person with metastatic cancer is on a ventilator in the ICU, on drugs to keep their blood pressure up and nobody is talking about dying, that is bad care. It is just not good care. It may be for the best of intentions out of love for the person, but it is still bad care. We have to acknowledge that the quality of life and the quality of how people leave this life really matter. The way we die stays in the memories of the people we leave behind. Those memories could be better than they are today.
Can you talk about death panels and assisted suicide?
Dr. Byock: I am a lifelong political progressive, but I don't buy that people have to kill themselves to be dignified. I think people are already dignified. They can be made to feel undignified if they are treated in a disrespectful way. My challenge – our team's challenge and I think the health system's challenge – is to help people to feel their inherent dignity and see their dignity reflected in our eyes, even at their sickest, even when they are physical dependent on others. We can do that.
I talk a lot in the book about care being not just competent, but tender and loving. There is nothing unsavory about acknowledging that we love other people. That love is actually still the impetus within the professions of medicine and nursing, social work, chaplaincy. It is okay. It is wholesome.
Loving care often can actually help people feel dignified who might otherwise have felt that they had to end their lives abruptly to preserve their dignity. We are living in a country now where people may worry about their pain being undertreated, may worry that their choices for care may be trampled on, may worry that they are a burden to their families because they are too sick, may worry about the bills that are piling up that are not going to be paid, that they may in fact leave their family destitute having to face medical bankruptcy. In this circumstance, the notion that doctors who are trained, licensed and paid by society would be legally able to write a lethal prescription does not seem like an extension of personal freedoms to me. I do not believe that that is progressive politics. I think it is really a social crisis.
FOR MORE INFORMATION, PLEASE CONTACT:
Ira Byock, MD
Palliative Care Specialist
Dartmouth Hitchcock Medical Center
Author of "Best Care possible."