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Evidence Based End of Life Care - Part 1
Evidence Based End of Life Care - Part 1
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Yeah, okay, great. And so, yes, I am a second year gynecologic oncology fellow now, but after finishing OBGYN training, I spent my first year out as a palliative care fellow. And so took care of men and women with any and all diseases that were life limiting, but certainly saw my share of cancer patients. And so I had a year to not only learn how to help them with their symptoms, but to sort of hone skills and talking to folks about what to do when they're faced with a tough diagnosis or are reaching the end of their life. You know, I think something that's important to say is that end of life is a very culturally based theme, and I very much appreciate that. And so I want to give some of my perspective. Part of this lecture is actually about symptom management at the end of life, but I'll kind of go quickly through that because I would be very interested to hear about how doctors in Vietnam approach this and then around the world approach, you know, tough conversations with their patients and how they, you know, I got to read the email about this difficult decision, but I think that because death and end of life are very culturally seated, it's important to kind of be sensitive there. And I have to say that, you know, I have only an American perspective. So I will go through a little bit about prognostication and its pitfalls. We'll review the dying process and signs of active dying, and then I'll take you through some common symptoms at end of life and give you some good evidence-based interventions that you can use. And so, you know, in the United States, we find that patients and their families are often asking us to predict what we, as their oncologist, think that their survival will be. And this can be at their very first diagnosis, but particularly when a patient has a recurrence, they start to wonder how long that they have. It's an uncomfortable conversation for anyone. And I think particularly in GYN oncology, where we have very long relationships with our patients, it makes it even harder because we're emotionally invested. And when patients ask us these questions earlier, well before we think that they're near their end of their lives, it's actually even more difficult to make this prediction and then becomes even more uncomfortable. I'll say that in the literature, performance status is still one of the best ways that we as physicians can try to be somewhat objective in understanding where a person is on that continuum of, you know, good functional status and then nearing the end of their life. But we are also, it's been shown in the literature, notoriously bad at thinking that our patients are better off than they really are. And then I'll also say that after spending a year taking care of folks with varying diagnoses who were dying, I found in my coming back to gynecologic oncology that these patients can somehow be even more difficult to predict at times. And I found many instances in my short time in fellowship so far where my patients were not only awake, alert, and having a normal conversation, but maybe even still completing many of their activities of daily living within days of their death. So I think one thing that's important when we talk to patients about how much time they have left is that we, you know, the reason it's uncomfortable is because we don't wanna be wrong and it's impossible to be perfectly right all the time. And so in palliative care, we're taught to speak in ranges with patients. In the folks who are nearest to death, we're talking hours to a day, but more often it will be days to weeks, weeks to months or months to a year. There is some good literature around the surprise question, which some of you, particularly in the US may have heard of. And so this is, there's several studies that have been done about it now, but oncologists were asked, would you be surprised if this patient died in the next 12 months? And what they found was if an oncologist was able to say, no, I wouldn't be surprised, then that was a good indicator that they should start involving palliative care because these patients were likely to have less than a year and they were more able to be comfortable and achieve the sort of death and end of life that they had reported upfront as things that they wish to have. And then finally, as far as prognostication goes, we're going to be wrong much of the time because I was coming from an OB background. I often told patients during my palliative year, we're terrible at predicting when babies will be born. And it's the same thing. It's very tough to predict when a person's going to die. And we very much hope that you're going to surprise us and have a longer life than what we're expecting, but we wanna be upfront and also try to share with you what our true sense is based on the information that we have. And so to treat or not to treat, this was the title of the email that came through that I read from you all. And I think it all begins in prognostication, which is why I started there. Oftentimes, this is the question at your crossroads in a patient's treatment. She's done okay and then comes back with new symptoms and you find something new and it's devastating, but it can be an opportunity to have a conversation. And the things that we have to keep in mind are that although we may have two or three more lines of therapy, each time we address a recurrence, the patient's survival is decreasing. And so the teaching that I received is that a recurrence is an opportunity for discussion. And I think a lot of that ends up being directed by your relationship with the patient, what the patient wishes to know. But if you can have already started to think about where you think your patient is in her prognosis, it can help you frame your conversation to her about what could be next. And the most important thing that we're taught is to ask a patient what is most important to her and try to tailor your treatment and your advice on next steps based on what she hopes to have. Because sometimes even folks who have only had one line of chemotherapy may say, I really hated chemo and I'd rather go home and try to live as normal of a life as I can for as long as I can. Even when you might think for yourself having more chemotherapy would be the right answer. And so that, we can pause there. That was sort of the, as far as I went with when to stop treatment, because again, I sort of feel like this is so cultural. We could open it up for discussion now, or I can continue to talk a little bit about closer to end of life, whatever you all think is most helpful to you. Okay. Obviously have some really experienced people in the room today. You know, the person that taught me was AK. AK, what's your views on talking to patients? Because you, if I remember correctly, you do an excellent job with your patients. Well, first of all, that was really lovely. And thank you so much for framing that so beautifully, Lindsay, really appreciate it. One of the things that I struggle with is just what you brought up, which is the issue of meeting people in their particular framework and how they think about their illness and how they think about treatment. One of the challenges is that to stop treatment in many patients' minds and in your family's minds is to give up. And that concept of being given up on is one of the extreme barriers to transitioning from active therapy to best supportive care. So how to navigate that. And I would say I've found particular patients and their families where it's not possible to really go there until they are really on their deathbed because of this extremely important concept of the need for therapy. And when you take away that therapy, you're giving up on them, you're being abandoned. It's very, very complicated. So I would say that that for me is where my meditation is. Where are the boundaries and the barriers with the particular person and their family and the patient and the family may be at odds. Patient may be fine to move to a different place. The family cannot let that go. As an example, I cared for a young woman from the Middle East where I have very often learned about the barrier to having a DNR conversation. That culturally, that's very spicy sometimes. You have to be very, very careful how you frame that culturally. I, again, not an expert on that. And this particular young woman was dying of cervical cancer and had gone through lots of rounds of chemo. And her husband became so enraged by the conversation that he threatened to kill us. And he had to be taken out by security. He was so angry that we would bring up in the most tender and tentative manner, the idea that perhaps we really couldn't give his wife any more chemo and she was actively dying in renal failure and stuff like that. So that's an extreme example of tremendous barriers. And so I would say kind of like figure out what the challenges are and whether you can breach them or whether you just have to travel with a patient wherever they are. I don't know. I'm curious what other people have experienced. We have some people here who have traversed the cultures. Joe and Natasha, you practice in Asia as well as in the Western, in the United States. Joe, first, what's your thinking about the differences between the cultures? Yeah, so certainly in Singapore and it's an Asian context, I think the idea that I always pick up on is the idea of dying well, right? We don't specifically talk about dying because it's taboo. The word die is probably not something that you would say because it's just taboo, but the idea of dying well goes down very, very well with patients. So I think the difficult conversation is when we have patients like in AK's case where patients are very young and they expect the full life ahead of them and they're unexpected to hit by a kind of devastating diagnosis, right? But yeah, in general, for most of my older patients at the end of life, yeah, I tend to focus on the whole concept of dying well. I mean, like everybody wants to end well. I always make the point that we're all going to go and we all want to go well and that usually resonates very well with the patients. That's one. And I think the other issue, again, that I'd like to reinforce that Lindsey brought up and then AK reinforced is the idea of abandonment, right? We're with our patients all the way to the end. And I always reassure my patients that I'm your doctor, you know, until either you or I go. You know, we're in it together. And I think as long as patients don't feel abandoned, I always say that there's always something we can do. So the whole idea of not doing chemotherapy does not mean that you're not going to do anything, right? Because that's the whole idea of palliative care. The care continuum continues. It's not an issue of ceasing care. And I think it's very important to make sure that the patient understands that you're not, just because you're not giving them chemotherapy does not mean that you're not caring for them anymore. And I think that's very, very important to keep managing expectations as well as full on. So, you know, it's not an easy conversation, but it can be had and it can be a very positive experience. I mean, that's something that my fellows and residents often remark when they have the opportunity to journey with patients. That's usually a very positive experience for them. Natasha, what's your thoughts from the Thai perspective? Yeah, actually I have like two little issues to address. Number one is sometimes what I have the problem is like the family don't want me to tell the patients. I'm not sure in Vietnam, but sometimes like, let's say like the old women or whatever, sometimes the family don't want me to like, to tell them that they have cancer, you know, like I don't want them to tell the mom or grandma, whatever. So I always tell them like, number one, I respect that decision, but I still think this is the right of the patient to know what they have, right? And number two, sometimes don't you think the patient, they feel or they know that what do they have? And for me, sometimes when we don't tell them exactly what they have, what they thought in their mind is like, more severe than what they have, you know? This is number one. But I think like, after you have like, I mean, you make some bonding with the family, they trust you more and mostly they allow you to tell the patient. And number two is like Dr. Joe said, like in Asia, mostly sometimes we are not comfortable to talk about dying, but the earlier you prepare them, like talking with them, don't have to start with dying, but start with the disease and their prognosis or whatever. And then when you prepare them and at the end, when you have to talk with something that in like, more in depth, it's gonna be easier. Thank you. Linus, what do you do? We all have multiple experiences. What's your experience? No, it's been difficult. I came from China, obviously it's culture, exactly like what it's happening in Thai. Most of our people in China, they would not want to know even the diagnosis of cancer, not even until death. So it's a cultural shock for me when I first started managing patients dying here. And my thinking here in the US is that I have to be respectful from all kinds of different patients that comes to me and AK is certainly the most respected gynecologist that I have in my mind. And it's difficult. And so I think now the incorporation of navigators and palliative care early on, it does help because with the bond that they have with my team here, and I think it's easier to really go into this. I hate the term palliative care. I really like to have a change to supportive care. It's really a good care continuum, supporting them either with chemo radiation or pain medications or other supportive medication. So for me, it's really been learning, crossing two cultures and then still continue to have many different patients, many different backgrounds. So it's really been learning, continue to learn every day. No. Dr. Ngap, what do you think? You've dealt with death and dying before, but more so in the last eight months. And Dr. Nguyen? Oh, we can't hear you very well. You'll have to speak up, I think. And you're on mute. Yes. Firstly, thank you for your recommendation today. Yes. And I know that this is a case-by-case situation, right? And after hearing your advice, I think I will look at the whole situation, like the expectations of patients and their family, their general condition, their financial condition, as well as the life of chemotherapy. Yeah, that's my thing. All right, very good. I think that's it. We're a couple of minutes.
Video Summary
In this video, a gynecologic oncology fellow discusses their experience in palliative care and the challenges of discussing end-of-life care with patients. They highlight the importance of understanding different cultural perspectives on death and emphasize the need for sensitivity in these discussions. The speaker also discusses the difficulty of accurately predicting a patient's prognosis and the potential pitfalls of prognostication. They mention the surprise question, which is commonly used to determine if a patient may benefit from palliative care. The video also touches on the issue of when to stop treatment and the importance of tailoring treatment plans to the patient's goals and preferences. Lastly, the video includes a panel discussion with other healthcare professionals sharing their experiences and perspectives on end-of-life conversations and cultural considerations.
Asset Subtitle
Lindsey Buckingham
October 2020
Keywords
palliative care
end-of-life care
cultural perspectives on death
prognosis prediction
surprise question
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