Dr. Angelo Volandes is a physician as well as the author of the new book The Conversation: A Revolutionary Plan for End-of-Life Care. Angelo is also the co-founder of Advance Care Planning Decisions, a non-profit foundation that aims to improve quality of care for heath care patients. Jason Hartman invites Angelo on the Holistic Survival show to talk about how to make the end of life process easier and why you should have the conversation with both your physician and family members about how you would like to be taken care of during the last moments of your life.
Key Takeaways:
1:50 – Most patients prefer to die at home with their friends and family around them.
5:00 – When CPR is performed on people suffering from a major illness, although they may live, very few regain back full heart functions.
8:40 – Doctors often assume you want everything unless you otherwise state so.
11:20 – Angelo has provided a short video to help people prepare themselves with the right end of life answers and to bring the conversation up with their doctor.
15:10 – Angelo explains why the health care system has done a horrible job with hospice.
17:05 – There’s a shortage of government funding in the palliative and hospice fields.
“When it comes to how the health care system deals with hospice, it’s done a horrible job.”
Mentioned In This Episode:
The Conversation by Dr. Angelo Volandes.
TheConversationBook.org
AngeloVolandes.com
Transcript
Jason Hartman:
It’s my pleasure to welcome Dr. Angelo Volandes. He is a physician and researcher at Harvard Medical school and Massachusetts General Hospital. He’s founder of Advance Care Planning Decisions and author of The Conversation: A Revolutionary Plan for End-of-Life Care. Angelo, welcome, how are you?
Dr. Angelo Volandes:
I’m well, thank you for having me.
Jason:
Well, it’s good to have you and you live in beautiful, but very stormy and snowy Boston, and you’re coming to us from Hawaii right now, is that correct?
Angelo:
I am, aloha. I’m sure my colleagues in Boston are not pleased with me.
Jason:
Yes, I bet they’re very envious right now. Well, tell us a little bit about what you noticed in dealing with end of life care issues and how people can make this usually very sad process go better.
Angelo:
You know one thing I’ve noticed as a physician for many years is that although when asked, most patients prefer to die at home surrounded by their loved ones and focused on quality of life and comfort. Most people in America are still dying in hospitals often tethered to machines and then a good deal of suffering. So, that really bothered me as a provider, because as a doctor who works primarily in a hospital, I started to ask myself, are we doing the right thing when we are performing CPR on patients who have an advanced illness or performing these interventions on people who are pretty sick with a terminal illness and where the benefits of these procedures are really marginal if any.
So, a group of colleagues and I started asking ourselves, “Well, what’s causing this?” And all of us agree that it’s because the health care system really doesn’t focus on having the conversation, which is the title of the book. So, in the book, I talk about seven patients whose care at the end of life hinged on whether or not they had a discussion with their doctor about their preferences, about what was important to them, and whether or not they started this conversation with their loved ones.
So, I think one way to really take back your own health care and be at the center of health care is to start having this discussion years before you become critically ill, years before you’re diagnosed with a disease, and to make it a routine part of what it means to have a patient/doctor relationship.
Jason:
Well, why would you say CPR is marginally effective. I mean, the person if they live, how is that ineffective?
Angelo:
Yeah, that’s a great question. When I ask most patients or anybody I ask on the street, so, you know, what are the chances of survival CPR? A lot of people tell me, “Well, isn’t it all the time?” And that’s a real problem, because for the average person, yes, CPR has a good chance of bringing you back to life just like we see on television, but if you have an advance illness, if you have advance cancer or advanced dementia or if you’re a frail elderly person with multiple diseases. The chances of CPR actually working is actually quite work. So, when people are making decisions assuming that CPR always works, well that’s a problem. So, what we have to do as a health care system is to make sure we educate people about what the chances are of surviving some of these procedures, but also understanding the complications and the alternatives to aggressive life prolonging interventions.
Jason:
For give my ignorance though, but if CPR works, what’s the problem? I mean, are you just saying saving a sick person is going to die two weeks later anyway or what’s your point? Are you making them worse by performing CPR? It kind of seems like it doesn’t hurt to try, if you will.
Angelo:
Yeah, that’s a great question. First up, you are absolutely right. All we do for patients with an advance illness is prolong the dying process. So, for instance in one study that looked at, I think it was close to a 100 patients all with advanced cancer, they looked at when they received CPR, how many survived and what they found is that about 20% actually regained function of their heart, but when they looked at the question of how many actually survived to the time that they were able to walk out of the hospital, it was zero.
So, you’re right, you might survive CPR in the sense you have a heart beat, you have a pulse, but we’re just prolonging the dying process and you’re tethered to a machine in the intensive of care unit with a good deal of complications and you’re unlikely to return to where ever you were before having the procedure done. I think it’s also a burden to the family. Do you want the last memories of your family to be of you in the intensive care unit surrounded by these machines with a tube down your throat? I mean, these are what we’re trying to make sure patients understand when they’re making certain decisions. Again, it’s not the health care system or the doctor making the decision for you, it’s you, the patient, being at the driver’s seat and making this decision that’s best for you, but making sure you have all the facts.
Jason:
Okay, so, what is the distinction here between when someone goes and does their living trust and they do the medical directive, you know, there’s like three choices and I remember I did it. Do you want heroic interventions, save me no matter what, do you want no respiration. I mean, you can lead me through that, I can’t remember exactly the choices. Not that it’s unimportant or anything, but you know, what’s the difference between that type of thing or is this that type of thing?
Angelo:
Yeah, you know, the way I start the discussion with my own family members and with my patients is, you know, what’s a good day for you? What gives you joy and happiness and then I ask them, suppose you’ve got a serious illness, what are your hopes and fears in terms of medical care, and then from those few question, then I sort of lead them to – well, generally in health care you have three choices and they are the three choices that you mentioned. The first one is called life prolonging care and this is essentially anything available in a modern day hospital to prolong life even if it means having a good deal of suffering and pain.
The second choice is something called limited medical care. Here the focus is on performing interventions that are able to bring you back from easily reversal things. Things like antibiotics for an infection, but it wouldn’t include things that have a small chance of helping you live if you have a serious illness like perhaps CPR and the third option is comfort care where the focus on aggressively focusing on your quality of life and making sure you’re not suffering. Those are the three options that most people have across the country and it’s the same three options you’ll find on a lot of the forms we find in each state.
Jason:
So, this is that, that advance medical directive, right?
Angelo:
Yes.
Jason:
It’s not something more, it’s just that I guess a lot of people aren’t doing anything, right? They don’t have any advance directive, is that your point and then it falls to the physician to just save them no matter what?
Angelo:
That’s correct and that’s part of the idea behind the book is let me show you what’ going to happen to you if you’re not proactive and start this process of having the conversation of filling out these forms, because if you don’t do anything, guess what, the health care system is designed to do everything, and so if you’re not going to have this discussion, not going to say what you do or don’t want, when you come into my hospital, I have to assume that you want everything. So, it’s a full court press unless I hear otherwise and that’s true across our country.
Jason:
You know, that’s actually an interesting question for you and I don’t know if you know the answer to this one, but how is it done around the world? For example, what do they do in Europe and Asia and, of course, each country is different, but how do they handle this? Do they full court press, it’s gotta be everything, that’s the standard of care or is there maybe so more dignity or consideration toward death that isn’t the Western idea of you gotta do everything or you’re going to have a lawsuit.
Angelo:
Yeah, so, I’m asked this question often and in fact my colleges from Europe and Asia who have read the book email me back and they’re saying, you know, “Why doesn’t this happen in our medical system?” The true is doesn’t happen much in other health care system for a variety of reasons. In the United States, we’re a diverse culture. We want to honor and respect different choices that different people might make, so in other parts of the world, a lot of these decisions have already been made by the community, by governments, and they essentially say, “Well, if you have particular illness, these are the options that you have.” And they’re limited, they’re different.
So, in the United States where we are a diverse community. There are many people with many different options, we want to honor and respect individual autonomy, so we want to hear from patients to know what’s important to them, what their values are, so if no one is having this conversation, then we have also designed a health care system where the default is that assumption that I mentioned earlier – do everything. The rest of the world doesn’t see it like that.
Jason:
Yeah, that’s interesting. Maybe we can learn something from them. What haven’t I asked you that I should have asked? What should the listeners know?
Angelo:
Well, one important thing that I want to encourage listeners to think about is doctors often haven’t had training in communication, haven’t had training on how to have these conversation, many doctors completed residency like I did ten years ago where we weren’t taught any of this. So, this is a really difficult conversation for physicians and so sometimes you have to empower yourself as patient though other means.
So, as part of the book, we made a short video. It’s five minutes long. It’s on YouTube. The link is TheConversationBook.org and what the short video does is walk you through what the questions that you should know are so that you can empower yourself, know your answers, and actually bring this topic up to your doctor the next time you see him or her, because as a doctor, I want to try my best to cure you, to do whatever I can, so it’s difficult even for me to have this conversation.
So, be able to have a patient brings this up really open the door to us. So, I would encourage people to see the video, learn their options, talk to their doctors about it, and even at the end, suppose you have a serious illness and you had this discussion with your family and with your doctor, go ahead and use your iPhone or your iPad, record yourself. Make a short minute three minute video and saying what’s important to you. What’s would you want or not want if you’re seriously ill and go ahead and email that to yourself, to your family, to your doctor, and hopefully they’ll have access to it should the situation arise where you’re not able to speak for yourself.
Jason:
But don’t put it on Facebook.
Angelo:
Well you know, I’ve had patients do that. That’s okay! It’s your personal information, it’s your video, you can do what you like with it, but please don’t fill out these documents and hide it from people. I had one patient tell me, “I filled out my medical advance directive and I put it in my safe.” I go, “Well, that’s not helpful when I need to access it.”
Jason:
Yeah, it’s interesting too because on the newest iPhone, the medical data doesn’t require a password. So, if you have a password on your phone and I was kind of wondering, you know, do all doctors know this, do all ER type people know that they can just look on someone’s phone and open ad get the basic information, allergies and so forth and contact next of kin and so forth.
That’s kind of interesting, but I think it would be fair to ask you your position on euthanasia, on assisted suicide, on Jack Kevorkian, you know, that kind of thing. I would assume by the way you’re talking that you’re probably in favor of that, but that may not be a fair assumption. I don’t know.
Angelo:
Definitely not a fair assumption. First to be clear in terms of this issue, which is been referred to as physician-assisted suicide or euthanasia or death with dignity, you know, my book is not about that. My book is very different and I really would like to focus on something that affects everybody in our health care system, which is preserving and honoring their wishes within the health care system that we’ve created and I think unfortunately in our society today, we haven’t given enough resources to palliative care services and hospice services to help people not have pain and suffering and I think if we did do that, I don’t think we would have this issue of physician-assisted suicide or death with dignity. I think we need to focus much more on making sure we have the resources to help everyone when it when it comes to end of life care so that they’re not in pain or not suffering and I think that would address a lot of concerns of advocates of what you’re describing.
Jason:
You pointed out how the system is broken in some ways, definitely at like the pure hospital level, but what about all the other levels. You know, you mentioned hospice, for example. Are you satisfied with the way that works or maybe talk for just a moment before you go about sort of the different areas in which these kinds of issues are dealt with.
Angelo:
Absolutely. When it comes to how the health care system deals with hospice, it’s done a horrible job. Let’s be clear, hospice is a benefit provided by most private insurances and medicare for people who have less than six months of survival and it provides things like equipment and pain medication, social workers, but unfortunately, it’s a horrible choice that my patients often have to make, because part of the agreement when you choose your hospice benefits is that you can’t pursue some of the other interventions in medicine. What a horrible choice to put people at. What a horrible thing to force people to decide whether or not they could pursue interventions simultaneously.
I’m proud to say that there places around the country that are saying, you know what? This is a bad decision, so why don’t we let people have something called supportive care where they can get all the benefits of a hospice, but still be able to pursue aggressive interventions like certain chemotherapies or other things that are available to people who do not choice hospice. You know, I am in the state of Hawaii where the non-profit here, HMSA, Hawaii Medical Service Association offers that benefit to its beneficiaries and I think it’s a wonderful program. So, I think, as a health care system, we’ve done a horrible job of giving the resources for people to choose the benefits of hospice while pursuing other aggressive interventions.
I also think we’ve done a horrible job in giving enough resources to our palliative care colleagues. Just to be clear, palliative care is about living life as well as you can for as long as you can and it’s not just for those who have a life limiting illness. We need tens of thousands of palliative care doctors and unfortunately we only have a few thousands and no one in the governments is giving enough money to train these wonderful physicians, nurses, physicians, social workers, psychologists and chaplains to really meet the communication needs of our patients, but our governments is more than happy to pay hundreds, maybe billions of dollars for chemotherapies and other interventions where an advanced illness they offer very little benefit. I think we have sometimes, I wouldn’t call it derange system, but a perverse financial health care system where we don’t value things like communication, making sure patients aren’t suffering, and really supporting our colleagues in palliative care and hospice care. So, that’s one thing I would revolutionize and overhaul in our health care system.
Jason:
Very good point, very good point. Angelo, give out your website.
Angelo:
Sure, it’s TheConversationBook.org and also AngeloVolandes.com.
Jason:
Excellent. Thank you so much for joining us today and bringing us up to date on some very important issues here. We really appreciate it.
Angelo:
Thank you so much. I really appreciate it. Have a wonderful day.