Take Control of Your Diagnosis and Disease With Palliative Care Options

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Topics include: Understanding and Self-Advocacy and Empowerment

Palliative care is not for the dying like it used to be 50+ years ago. Palliative care has evolved into a specialized form of medicine that offers you, the patient, the luxury of spending unhurried time with a cadre of healthcare specialists whose goal it is to decrease your stress, decrease your symptoms and enhance your quality of life. Dr. Thomas Smith is a cancer survivor, medical oncologist and a palliative care specialist. Listen as Dr. Smith teaches us how to take control of our lives.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

Hello.  I'm Andrew Schorr from Patient Power.  Welcome.  This program is sponsored by AACR as a service to cancer patients all around the world.  We're joined by Dr. Thomas Smith.  He's an oncologist, and he's Director of the Palliative Care Program at Johns Hopkins University School of Medicine in Baltimore.  Thank you so much for joining us, Dr. Smith.  

Dr. Smith:

Thank you.  It's a pleasure to be here. 

Andrew Schorr:

Dr. Smith, so first of all, palliative medicine, many patients are not familiar with what that means.  We used to think, and I'm a cancer survivor myself, that if I were around somebody like you, that means I was going to die in short order.  What does palliative medicine mean? 

Dr. Smith:

Well, speaking as a cancer survivor, I would hope it doesn't mean I'm going to die in short order.  What palliative care is is a specialized branch of medicine to work alongside your usual care to enhance your quality of life, reduce stress and symptoms, and help you and your caregivers cope, no matter what the illness. And it can be given really any time during a patient's trajectory. 

We have good data that having palliative care involved at the end of life for lung cancer patients makes great sense.  We have also very good data from Marie Jel Juari's group at Mass General that having the palliative care team come in twice a week when you're getting your bone marrow transplant really helps you and your caregiver cope.  

Imagine, if you will, having an entire team, nurse practitioner, pharmacist, chaplain, doctor, maybe other people too, dedicated to improving your quality of life and having the luxury of time to come in, pull up a chair, sit down and say, how are you?  Are you bothered by pain?  Are you bothered by nausea?  How is your mood?  Are you bothered by anxiety?  That's what palliative care is. 

It's not the Grim Reaper.  In fact, most of the data suggests that people who get palliative care alongside their usual care, like for multiple sclerosis or cancer, appear to live at least as long and sometimes substantially longer as well as better. 

It does arise from the legacy of hospice, which was terrific.  It was developed in the mid-1950s by Dame Cicely Saunders as a way to get people out of the hospital and concentrate on them, their symptoms, their family, their spirituality.  But around 25 years ago, a number of people wondered, well, why do you have to wait to be dying to get that care?  Why can't you just move that upstream?  So we've been like salmon swimming upstream ever since.  

So we see a lot of people getting heart transplants.  We see people getting lung transplants.  We see people who are getting heart valves.  We see everyone getting a left ventricular assist device, an artificial heart.  It's not just for the dying patient anymore but really for anybody. 

Andrew Schorr:

And you see people with, if you will, chronic cancer, which unfor—which fortunately more cancers are becoming, not all, but more people are living with cancer, and you're helping them too. 

Dr. Smith:

I would hope that we're helping people who are living longer and better with cancer.  That said, there are a lot of cancer treatments today that continue to have major side effects.  I'm particularly interested in chemotherapy?induced peripheral neuropathy and chemotherapy?induced fatigue, tiredness and cognitive dysfunction.  And those are major bugaboos for the people who have them, can often be disabling. 

The fatigue, the tiredness, the demoralization, the chronic pain, it just wears on you. And wouldn't it be nice if your oncologist, rather than just spending 12 minutes with you thinking about the next chemotherapy, would refer you to somebody who could really sit with you for an hour and flush out, well, tell me about your pain?  Where is it?  What's it feel like?  How much does it interfere with your life?  What is it keeping you from doing that you want to do?  What have you tried for it?  Oh, only tried those things?  Well, here's a list of things we can try.  There's no magic remedy out there, but we have a list of things that we can try over the space of a couple of weeks. 

And, oh, by the way, I really want you to do some mindfulness training.  Here's the website.  Here's the com app for your iPhone or your Android.  I really want you to work on this, and we'll work on it together to try to get you back to where you would like to be.  That's how I would phrase palliative care.  Who wouldn't want that?  

Andrew Schorr:

Right.  Right.  No, it sounds good to me, and I'm a two?time cancer survivor, and you are a cancer survivor too.  And the families watching this too and the people touched by it, I think it's something they need to inquire about.  

But let's take this a step further.  We're all going to die sometime.  Those of us affected by cancer, we worry is that what's going get us, and at some point we may be facing more of an end?of?life or approaching an end?of?life decision.  Now, I understand there's research that shows that very few patients really have an understanding of that situation.  That's really sad, isn't it, because then we don't get to plan how our last days are going to be? 

Dr. Smith:

It really is unfortunate that we don't have more open and honest discussions.  Let me say at the outset that there's no doctor who could tell you you have six months to live plus or minus one day.  What we are pretty good at is saying you have hours to days, days to weeks, weeks to many months, months to years, or perhaps many years. And for some of the illnesses that we're converting to chronic illnesses, it's going to be many years.  

But when people don't approach this they really lose the opportunity to take control, and time slips away.  I can't tell you how many people I've seen who said, if I'd just known what was going to happen to me I would have done things really different—differently.  I didn't want to end up in the ICU.  I wanted to be home surrounded by my family and my spiritual needs met, comfort things around me.  

So my advice would be to anybody probably over the age of 18 is to think about some of these things now.  And what I tried to do is get my patients thinking about them while they're well.  I want people to address some of these difficult issues, maybe at the diagnosis of a disease, which is likely to take their life. 

You mentioned how we often don't know.  In the CanCORS study, which followed 1,200 people with lung and GI cancers, over two?thirds of them thought chemotherapy could cure them, when in fact it's going to be close to zero.  Over two?thirds thought their radiation therapy would have a chance of curing them, when it was palliative radiation designed to control symptoms.  And over two?thirds thought their palliative surgery would have a major impact on prolonging their life.  None of those things are medically true. 

I think as doctors we miss the opportunity.  One of my friends just published a study that audiotaped 64 conversations with the doctor and the patient when they were going over the results of their cancer scans showing that the disease had gotten worse, and only four times out of 64 did the doctor take the opportunity to take a deep breath and say, would you like to discuss what this means? 

Because we know, we know that when the cancer grows your options become more limited.  You're likely to have more side effects.  Your time may be shorter.  So I'd say any time you get a scan and it's bad news or any time that you—your ability to perform your daily functions change it's a really good time to revisit with your doctor some important things, like what's going to happen to me?  What are my options?  

Andrew Schorr:

Dr. Thomas Smith, thank you for all you do in instructing others in the medical field and passing on this important advice to people affected by cancer.  Thank you so much for being with us from Johns Hopkins in Baltimore today. 

Dr. Smith:

You're welcome.  It's a joy. 

Andrew Schorr:

I'm Andrew Schorr from Patient Power and from AACR.  Remember, knowledge can be the best medicine of all.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on April 28, 2017