Don’t Leave These Questions Until the End: Cancer Questions to Discuss With Your Doctor Now

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Topics include: Self-Advocacy and Empowerment

In this Patient Power program sponsored by AACR, host Andrew Schorr chats with Dr. Thomas Smith of Johns Hopkins Medicine about what questions patients should ask their doctors about end-of-life treatment, issues that should be addressed, ensuring quality of life, hospice/at-home services, and more. This replay highlights the need for open communication, dealing with issues directly, and creating an end-of-life plan. Dr. Thomas Smith is a cancer survivor, medical oncologist and palliative care specialist.

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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:

Let's go over some questions, because I want to give patients and family sort of a toolkit, and some of these are very straight?ahead questions, and get your—we'll put them up on the screen and get your comment on them.  And I know I'm sure in your work you do a lot of medical education trying to have physicians and nurse practitioners and others who are part of the care team feel more comfortable with this and understanding the importance and, of course, palliative care specialists such as yourself being more available to people to have those longer conversations.  

But let's work here in helping the patient and the family get at some answers where that dialogue can happen, okay?

Dr. Smith:

Good. 

Andrew Schorr:

Here we go.  So the first question I guess is a real basic one is, has my cancer gotten worse or spread?  People are uncomfortable asking it, and maybe physicians are uncomfortable speaking about it, I'm not sure, but it's an important question, isn't it, right from the get?go?

Dr. Smith:

It really is, and this discussion about what's going to happen to me, what do I have, what's going to happen to me, what can you do for it, is not one discussion.  It has to take place over time, and I think most of us as cancer doctors are pretty good at saying, you have a disease that can be cured in which case we're going to go for it.  If it can't be cured, it might be treatable, or—but then we don't bring it up again.  And so people get sicker and sicker and sicker, and their time slips away, and their energy to do the important things to fulfill a life can slip away too. 

So don't be afraid to ask your doctor, can you explain what this scan means?  Can you explain what this is going to mean to me as a person and to my family?  It's hard for doctors.  There was a lovely study done in Italy that actually showed it's easier for the doctor to conceal the truth than it is to be up front about it, which is one of the reasons it's hard on us.  But most doctors if you give them a chance and make sure that they know that you're interested, they'll give you their best estimates. 

Andrew Schorr:

Okay.  And then another key question, and you just referred to it, is can my cancer be cured?  Now, all of us have a hope that if you can't cure it, today's medicine maybe there'll be a breakthrough.  Maybe something will change.  But I guess the question is with what we know today is there hope for a cure, but people should ask that, shouldn't they? 

Dr. Smith:

People should ask that. And in my breast cancer practice I would talk about, well, we're going to try to get you six months with this therapy or maybe a year, and hopefully the options will expand.  Maybe there's a new immunotherapy trial that's proven to work or a new immunotherapy trial that is open for you.  Let's try to get you as much time.  

At the same time, I'm a believer in hope for the best and prepare for everything else.  So there are a lot of diseases we're not curing today.  Lung cancer particularly, once it's grown on immunotherapy can't be cured—same with colorectal cancer—same with metastatic prostate cancer.  Once it's progressed through a couple of lines of therapy, most of the solid tumors that we deal with can't be cured. 

Survival is getting better, and you hope a cure comes up at the next American Society of Clinical Oncology meeting in June, but at the same time I think there are some really important issues for people to address.  Any family issues, address them now.  If you're estranged from somebody, try to work on it now.  

Any faith issues.  I've had so—I've had—any faith issues.  I've had people wait until the very end to try to figure out how to be buried in the cemetery of their choice.  That's not the point.  The point is if faith is important to you then make connections with your spiritual community now while you're well, and they can be a support to you, you can be a support to them, but do it while you're well. 

Any financial issues, reasonably common, you can get some help with those.  Any community issues that you need to address, get connected with the people who are important to you.  And what my friend Harvey Chochinov, who is a psychiatrist in Manitoba calls legacy work, how do you want to be remembered?  What makes you most alive?  What are the things you want to pass on to your kids and grandkids and their grandkids?  Why not write that stuff or DVD it or cell phone video it now while you're well and can really have the energy?  

I have yet to have somebody come up and say, you know, that was a stupidest thing you ever told me to do.  I did have one woman come up and say, you know, we met with you three years ago, and we did all that stuff. And now that I'm really sicker, I am so glad to have it done.  I don't have the energy now.  

Andrew Schorr:

Amen.  Amen.  I agree with that.  And then people always have to ask what their treatment options are, and I would guess that that also includes not just treatment for the cancer as best you can but also helping me with my quality of life, limiting suffering.  It's the whole ball of wax, right? 

Dr. Smith:

Right.  It's more than just what are you going to do about my lung cancer?  It's I'd love to have a good treatment for my lung cancer, but the thing that bothers me most is tremendous fatigue.  I'd give it a nine-and-a-half out of 10.  Just like that pain score you made me—made me do, what can you do about my fatigue?  What can you do about my queasiness and my nausea?  And I'm just getting really discouraged.  I don't think I'm depressed, but maybe I might be. 

Those are the sorts of things that we ask of multi?dimensional symptom assessment every time we see the person.  Are you bothered by pain?  Are you bothered by nausea?  Are you bothered by constipation?  Are you bothered by diarrhea?  Are you bothered by depression, anxiety, insomnia, right down the line?  Those sorts of things, there are often fixes that palliative care people know and can instruct you on to go right along with your therapy, probably make you tolerate your therapy a lot better too. 

Andrew Schorr:

Dr. Smith, here's a key question I think for anybody where treatment has been suggested but certainly when maybe we are approaching this end?of?life situation, and that is having the healthcare team explain to us where the risks and benefits of treatments that are available are being recommended.  Certainly there are people who say, I know you're recommending that, but that may be toxic therapy, I don't want to do it.  I mean, it seems like it's a key question to ask when quality of life, what time you have, versus what may be good therapy or may be just tox—more toxicity. 

Dr. Smith:

Mm?hmm.  If it's great therapy, like trastuzumab (Herceptin) for breast cancer, it's a no?brainer.  You're going to do it, and it's not going to make you that sick.  It's going to make you live longer. 

Other than that, there are a lot of therapies where it's really weighing the risks and benefits, and don't be afraid to ask your doctor, you're recommending this based on a clinical study, in that clinical study how long did people live on average?  Were there any people who got a really big benefit, or is it most people get about two or three months?  Oh, okay.  I understand that now. 

What are the top four side effects that people saw in that clinical trial?  Can you write them down for me, because, you know, with this chemo brain thing I don't remember stuff so good anymore?  Can you write down the top four side effects and what we can do about them?  And can you make sure I've got the number of your office and nurse so that we can help manage those side effects together?  That's going to help me weigh the risks and benefits in a very concrete way by understanding what the risks and benefits are.  

Don't be afraid to ask, is there any chance of me being cured?  If the doctor says, oh, we don't need to discuss that, he or she is not very comfortable with it.  If you can't be cured, then that means—as you said earlier, all of us are going to die at some point.  We hope to keep it as far away for as long as possible as long as our life is good, but do some preparation. 

Make sure if you're getting sicker that you meet with hospice before the eleventh hour.  In my own practice, I ask myself the surprise question.  I'm looking at you and looking at your family and say, would I be surprised if this person were to die in the next six months?  It sounds like a goofy question, but it it's actually got a lot of validity. And if the answer is, no, I wouldn't be surprised based on what I know about lung cancer, pancreas cancer, then I'm going to ask, would it be okay if I have the hospice people from blank hospice come out and meet with you?  That way, you'll get a chance to interview them, see if it's a good fit for you, and then if and when we need hospice, I'll know who to call, and it will all be arranged.  

As a doctor I'm trying to make sure it's an orderly transition and not scrambling around when the person is suddenly bed-bound and has bleeding problems or blood clot problems trying to scramble around and find hospice to take care of them for the last two days of life out of the ICU.  I want it to be a planned transition. 

Andrew Schorr:

And that's really a key point.  So I have a couple of other questions I just want to fire at you.  So you're approaching maybe an end?of?life decision.  Isn't it a fair question to say, doctor, what will my best days be like, what will my worse days be like, to help me know what could be coming? 

Dr. Smith:

It's a perfectly fair question.  Your doctor may not be able to answer specifically for you, but a lot of times when we do clinical studies we have data on how frequently people's pain was relieved, how frequently their shortness of breath was relieved, how sick they got with diarrhea or nausea. And your doctor should on reading the clinical study on which he or she is basing your treatment should be able to say, you know, people got really sick from this.  About 20 percent ended up in the hospital with diarrhea, and they—the average amount of time that people got wasn't that great.  It was only 2.3 months.  I think we may want to rethink where we're going with this. 

I'll write out the—what the name of the drug is, here's a website you can read about it, here's the top four side effects and what we can do about them, and then let's not make a decision today but let's think about—think about it. 

Andrew Schorr:

Now, you mention hospice.  There are a range of services for people dealing with cancer and the end of life if you only ask, so it seems like a fair question would be, doctor, what services are available to me and to my family to help us cope with this situation?  

Dr. Smith:

Sure.  I mention hospice.  I mention the H word, which gives people a shock.  The first question, they'll often—does this mean I'm dying?  Say, no, you look pretty well, but I'm bringing it up now, because we may need hospice services in the future to give you the best possible care and best quality of life, to be at home if that's where you want to be. 

So hospice is evolving.  Hospice in England was an inpatient place where one went, and I'm picturing a house on the coast with the wind blowing the curtains and seashells on the window ledge.  Hospice in the United States is a home?based service.  It's specially trained nurses under the direction of a physician who can come out and help you by assessing your symptoms and then trying to fix them. 

You can do a little bit of physical therapy and occupational therapy, even have the potential to do some radiation therapy and blood transfusions, although it's really hard to arrange in most hospices.  Hospice is paid about $160 a day, and everything has to come out of that, oxygen, nursing visits, all your medicines, so it's constrained. 

That said, a number of companies have expanded?access hospice options where you can get hospice teams helping to take care of you and not yet have to give up your chemo or your radiation or your transfusions.  You may have to ask your insurance benefits manager about this, or you may have to call up your insurance company and say, do you have an expanded?access hospice option?  Because that's sort of the best of both worlds, because you've got your oncologist managing your cancer treatment, and then you've got this other team whose job it is to maintain your quality of life outside of that. 

Medicare is actually doing a big demonstration project with 131 sites right now who are testing this, and if it works, hopefully it will become standard of care in the next 18 to 24 months. 

Andrew Schorr:

And our last question really relates to that, is asking your healthcare team, will I be able to die at home? 

Dr. Smith:

Most of us do.  I talked to the medical students yesterday here at Johns Hopkins, and most of them don't want to die at all, which is the way most of us are, and they'd like it to be a far time in the future. But if they were to die, almost all of us would want to be at home surrounded by our loved ones, our family, our pets.  We would like to have taken care of spiritual issues, existential issues.  We'd like to have taken care of spiritual issues, family issues, financial issues, get that stuff all straightened out. 

The way you end up dying at home is not by waiting till the last 24 hours and then deciding.  You work with your oncologist and say, I seem to be getting sicker.  What services do you have available through your office or with hospice to allow me to be at home, so I don't end up in the hospital?  

What I see happening too frequently is people have a pain crisis in the middle of the night, they don't have anybody who can come out to see them like a hospice nurse, nobody to call 24/7 for advice who knows them. So they end up in the emergency room, may end up even being intubated in the ICU, just the last thing they wanted, but things happened so fast it just moved on. 

Andrew Schorr:

So, Dr. Smith, when we put all this together, it sounds to me like the key here is open communication between the patient, the family and a knowledgeable provider dealing with issues directly.  If there are specialists such as yourself in palliative care, to ask about that and other supportive services.  And then in the end what that gives all of us is a way for us to plan, and isn't that really what it's all about? 

Dr. Smith:

Most of us are planners.  Most of us try to plan our life as much as we can, and there's no reason to give that up just because you're seriously ill.  In fact, there's a lot you can do.  There's a great website called Prepare for My Care that Rebecca Sudore put up.  It's free.  You can do all your advanced care planning on the Web and print it off for free.  You don't need to spend $500 or $250 on an attorney.  

You can do this for free.  You can appoint who you want to make medical decisions for you if and when you can't speak.  You can say, I do want to be intubated and in an ICU.  I want CPR done.  Or you can say, you know, when my time has come just let me die a natural death.  I want to be at home.  You can write all that stuff down and then make a copy of it and take it in to your oncologist.  That sort of planning really works. 

I'm looking at the ads in the flight magazines about you don't get the deal you deserve, you get the deal you negotiate.  It's the same way with the end of a life.  You don't get the end of life you necessarily deserve. You can really help yourself and those around you by doing some advanced care planning. 

One thing I tell my patients is it's better to be discussing this at 4:30 on a Thursday afternoon than it is at 4:30 in the morning in the emergency room when you can't talk, because you're so sick and your kids don't know what to do for you. 

Andrew Schorr:

Wow.  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 May 1, 2017