MAUREEN CAVANAUGH: This is KPBS Midday Edition, I am Maureen Cavanaugh. Frequently on Midday Edition we highlight the amazing medical advances being made by researchers here in San Diego, those breakthroughs often give hope to those fighting serious diseases but patients don't always win their battles. When a terminal diagnosis is made people ask their doctors what question, how long do I have to live? Recent piece in the New York Times highlighted this dilemma for both doctor and patient, should doctors be more forthcoming about what they know about patient survival and how should patients translate that information into their own lives, I like to welcome my guess Doctor Scott Irwin, and Doctor Sandy Ramos. The opinion piece in the New York Times that I referenced last month was written by a doctor who was a thirty-six-year-old bigger neurosurgeon who received a terminal cancer diagnosis. For most people a terminal diagnosis means you're going to die, what does it mean to doctors? SCOTT IRWIN: I would sort of agree that it means that you're going to die but the question is when and how and with what symptoms and ability to function in life, I mean we're all going to die but is a question of when and how. MAUREEN CAVANAUGH: And when a doctor makes the diagnosis buddy diseases terminal cut is that doctor also have a reasonably good idea of how long the patient may have lived? SCOTT IRWIN: Sometimes it can be difficult and one of the successes of modern healthcare is we have added 20 to 30 years of life to people but we have made it harder to protect what people will die I think the closer that you get to death the easier it is protector to protect, and within the last year of the last six months in particular, because it's easier to predict. MAUREEN CAVANAUGH: Do doctors routinely tell patients how long they have live? SCOTT IRWIN: I do not know that they get routinely, some doctors do and some shy away from it, because it's an uncomfortable conversation, and some I think are not well trained in how to do it. And many are afraid to take away hope from patients and so, they don't do it for that reason. MAUREEN CAVANAUGH: To be concerned about taking away hope from a patient may be one reason why doctors would not do that. One would be one of the reasons that Doctor would do that and share that information with the patient, from what I know this is your life expectancy was for the best information that we have, this is what you might expect, what benefit might that bring to a patient? SCOTT IRWIN: We have an obligation as well. But providers to give patients the information that they want and what they have often asking them what they understand about their diagnosis and prognosis, and asking them what they want to know and at what level, and then sharing that information is best as we can. MAUREEN CAVANAUGH: How much do people usually want to know about life expenses he were the best medical and for information about their life expectancy? SCOTT IRWIN: These days we have internet and most people of often argument for it, and some absolutely do not want to know, because it might take away from hope from themselves God sometimes it is cultural, some cultures you can tell the firstborn son and you can't tell a patient, there are many reasons and if it's patients hundred and patient focused company asked the patients that they want and how they want it delivered. MAUREEN CAVANAUGH: Doctor Ramos, you were diagnosed with stage III breast cancer and this was not by any means but we understand as a terminal diagnosis, but how much did you want to know about your prognosis? SANDY RAMOS: As a position I had the biggest basic understanding obviously of breast cancer and that is am I have area of as per teaspoon I have dealt with it as a physician in training and also taking caring care of pregnant women and I had a good idea, but however I think that in approaching my diagnosis my position the way she framed it was I am my own statistic consider could be statistics about my particular type of cancer, and then stage of cancer and I myself in my own statistic in my survival is based on my biology, and in terms of trying to find out what my prognosis was Really for me was the decision based on what rod of treatment and was going to choose, and about how we frame the discussion, I have to admit that since that discussion we have not put that up again. MAUREEN CAVANAUGH: You think is you consider your kinds of conversations with your doctor, you think that she is told you too much or too little? SANDY RAMOS: I think she was very acutely sensitive, to my needs and she asked me several times what information I wanted to hear and at what point during my treatment, so if I had to summarize up I would say that she gave me some excellent options and really provided information when I was ready to receive it. MAUREEN CAVANAUGH: Doctor what I have heard of a phenomenon called dying for the diagnoses were some people have a terminal disease may just fit away, that something that doctors witness? SCOTT IRWIN: I would say that there is also something called demoralization where people come become demoralized that looks like depression and they have a lot of trouble coping and what I have found from my work is that people often cope with dying or diagnosis like that is the way that they've coped with the rest of the life, those about the fact coped well seem to by and large cope well and it depends on the social factors and many other factors such as personality disposition and those that have not Twelve or struggle to cope with there have been stressful as often struggle to cope with a diagnosis like this. MAUREEN CAVANAUGH: You see many people who are struggling that is part of your psychiatric part with the cancer center, what happens when a patient and perhaps the family are not ready to face the reality of an illness? SCOTT IRWIN: At UC San Diego we want to meet the patient and family where they are, so what are their needs as Doctor Ramos pointed out? At what time points that they needed? Working with the team to help them with that, denial can be a very protective defense mechanism for people and care providers often struggle with that kind if the patient would only understand the realities But we don't necessarily want to break down people's defense mechanisms that a time like this but work with them and meet the way they are to provide the information and treatment that they are ready to accept. MAUREEN CAVANAUGH: And how are Doctor trained to give a terminal diagnosis patients? SCOTT IRWIN: I would say by and large especially in the past that they were not, that death is viewed as a failure and that a lot of physicians are not taught communication skills were taught how to take care of dying patients This is dramatically changing and palliative medicine is the newest subspecialty of medicine and is taken upon itself to train doctors and how to make it about these things in addition we're exposing trainees at all levels so that people who are fellows and residents and medical students are now getting exposed to this type of information and training where as I had never even heard of hospice or palliative medicine and those never exposed to cancer care and when I was a medical student. MAUREEN CAVANAUGH: Doctor Ramos did you get any training in how to break a thing such as this to a patient? SANDY RAMOS: At the UC Irvine for medical school and we had a specific module will reset them with patients gave different scenarios and we discussed ways to offer that Davis and one of those scenarios was discussing a terminal illness with the patient. MAUREEN CAVANAUGH: And have you as a doctor had to do that as well? SANDY RAMOS: I have had to do that with my specialty, take care of the risk pregnancies I take care of those patients that are pregnant which may have poor baby prognosis, and maternal process and have traded had to do that as he well in my current practice. MAUREEN CAVANAUGH: Am wondering if one experience that you have gone through that you have learned about breaking this kind of information to a patient? SANDY RAMOS: I think it's very important especially now after going through what I have gone through in terms of my treatment, being very aware of what the patient is ready to hear I always encourage patients to bring a family member and we're having an important discussion like this Because they look even from my own experience of the information that was provided to me I was so busy trying to process it one step at a time that I missed certain key elements and I was always thankful that I had my family members with me. I think being sensitive about what the patient is willing to hear and providing this information on a very clear and concise manner is very important. MAUREEN CAVANAUGH: We care a lot about ways that patients were facing a severe permanent illness or terminal diagnosis can help themselves psychologically to embrace and deal with this particular issue, and I'm wondering one of the options that people have to deal with that? Are people in groups? Is that a good idea? Was it one-on-one counseling that works better? SCOTT IRWIN: I think again it depends on the patient and the family what they have used to help in life and in the past they recently had a patient who is seeking individual and couple's therapy through her church and we offer individual psychiatric care and diagnoses and medications at UC San Diego Moores Cancer Center we also offer psychology centers to individuals or groups and they can be focused on couples or marriage or all sorts of things, people with sleep issues and we also have social workers that are great with crisis in for interventions, as well as some of the supportive counseling and also hooking people up with other community resources that they might be valuable and what we do at UC San Diego as well as we merge with the palliative care team so that together we are so focused on the relief of suffering be it physical or psychological, and the promotion of dignity and so together with our palliative care colleagues we can offer the entire package and really is about providing patients with a menu to choose from when they are ready when something resonates with them and the more that we can have the better. MAUREEN CAVANAUGH: Isn't there a controversy about medication for people going through mental difficulties or emotional difficulties because of the diagnosis? The person who perhaps needs medication for depression and someone who is going through the natural stages of trying to come to terms with a terminal diagnosis? SCOTT IRWIN: Often I've seen patients put on an antidepressant because they have cancer and really there is a whole spectrum of emotion, we all get sad and down from time to time that is part of the normal human experience, and when we're faced with something like cancer that might have been more frequently and that is also part of the normal process. It's when someone has trouble coping with that sadness or that is taking over their lives or they can't function because of it that counseling or psychotherapy may be helpful and then when they meet criteria for clinical depression that is when we want to intervene with medications and medications are very effective and Billy the point I want to make is that people said of course they are depressed they have cancer That is not true because only 15% of people with cancer get clinical depression and 85% to not, and in those 15% to medications can be quite effective and they can be life-changing, people can reengage in their lives and reengage with their family and depression itself can make the prognosis worse or make it hard to treat physical symptoms and can increase or shorten prognoses and even as a risk factor for death itself. MAUREEN CAVANAUGH: And everyone knows that fighting a serious disease can be tough, do you see many people who decide that they don't want to do it anymore and just want to give up? SCOTT IRWIN: I'm not sure I would frame it that way, and you see people that have decided that they had given it the tribe they want to try and they got through surgeries and radiation and chemo and they've decided that they don't want anymore, that the burdens of that is not worth it and they would rather spend their time in other ways. And have a different quality of life and they make it choice for quality over quantity, and I would nudge say that they give up and they make a conscious choice of how they're going to engage in care and that might include the longer getting active cancer treatment. MAUREEN CAVANAUGH: This depression play a role in the decision-making? SCOTT IRWIN: Depression can make a role, people often make this different decisions when they are depressed and when they're not, and again we're only talking about 15% of the cheap patients and it is my job to counsel them to make a decision different decision if their depression goes away and some may allow me to treat it and make a different decision and somewhat allow me to treat it that is their choice to refuse medical care. MAUREEN CAVANAUGH: How you deal with that line between with it patient between positive thinking and hope and magical thinking? SCOTT IRWIN: Again that is about giving honest information. Quite often we don't give honest information patients get false hope and then they might get angry, and so there is sort of the difference between hopes and wishes and we try to run people and hope, with honest answers and what I like to tell patients really is hope for the best book plan for the worst, because when patients don't plan for the worst of the worst happens, there often upset they didn't know that this was coming and they didn't expect it For example of somebody's given 50% chance of surviving to five years What I say is that UC San Diego Moores Cancer Center is going to do everything that we can that you want to engage and to keep in at 50% that will be living in five years, however we cannot predict which 50% it's going to be so let's work on getting you in at 50% that survives but just in case we need to plan that you may be in that 50% that is not. MAUREEN CAVANAUGH: What is your perspective now, you have been through chemo and surgery, do you feel the statistics on survival are more on your side now? SANDY RAMOS: Yes I think I approach the diagnosis says there is no other option but to be on the positive side of survival rates for my diagnosing and I do feel very healthy right now and I'm very strong and eight think that really helps to keep me in that positive and light and I would be lying if I don't think that way and mortality, nobody's guaranteed tomorrow, but at the same time I think most of us live our lives without thinking about that simple fact and that think the author of that article really summarize my feelings about it, now I'm more acutely aware about my own mortality than I was prior to the diagnosis but of course I am exceedingly hopeful that my decisions that I will not need any further treatment and won't need to go down this route. MAUREEN CAVANAUGH: I want to thank you so much for sharing your stories with us, thank you both very much for speaking with us.
Frequently on Midday Edition, we highlight the amazing medical advances being made by researchers here in San Diego. Those breakthroughs often give hope to people fighting serious disease.
But patients don't always win their battles with disease, and when a terminal diagnosis is made, people ask their doctors one question: How long do I have to live?
A recent Op/Ed piece in The New York Times highlighted this dilemma for both doctor and patient.
That editorial was written by Dr. Paul Kalanithi, a chief resident in neurosurgery at Stanford hospital who also has terminal lung cancer.
Kalanithi said in the editorial: "[Doctors] never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics."
"One would think, then, that when my oncologist sat by my bedside to meet me, I would not immediately demand information on survival statistics," he said. "But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for."
Should doctors be more forthcoming about what they know about patient survival? How should patients translate that information into their own lives?
Dr. Scott Irwin, directs psychiatry and psychosocial services for UC San Diego Moores Cancer Center.
Irwin said, in general, doctors are not trained well in communication techniques or in taking care of dying people.
He said some doctors prefer to be vague about a terminal diagnosis because they're afraid of taking away hope.
Instead, Irwin said, many doctors like to quote survival curves.
"What I like to tell patients is we don't know which 50 percent you will be in," he said. "We will do everything we have to offer, that you want to do, to try to keep you in the 50 percent that survives."
He said he also tells patients to hope for the best but to plan for the worst.
Dr. Sandy Ramos is an OB-GYN at UC San Diego. She also has stage-three breast cancer, and completed treatment in December of last year.
"As a physician you have different perspective being diagnosed with something as life altering as cancer," Ramos said.
She said it took her some time before she asked about her prognosis.
"My perspective was, 'no matter what, I'm going to be fine,'" Ramos said. "'I'm going to be my own statistic.'"
Ramos said life has not changed that much since her diagnosis. She's more conscious of the people who support and love her and expresses thanks and love more often.
"Every morning I wake up and think, 'wow, I have stage-three cancer," she said. "But at the same time, I take a deep breath; there's no other option than to keep living."
