Speaker 1 (00:00):

You are a holistic being. And the best plan of care, in my opinion, is East meets West. Not one size fits all.

Speaker 2 (00:14):

I’m Suzanne O’Brien, former hospice and oncology nurse, and now the founder of the International Doula Givers Institute. My life’s purpose is to teach others how to care for those at the end of life. So if you are a family member wanting to learn how to care for someone you love at the end of life, or you are someone who wants to be a professional end of life practitioner, this is the place for you. So sit back, get a cup of tea and relax. This is the Ask a Deaf Doula podcast.

Speaker 1 (00:48):

Hi everyone, and welcome to this episode of Ask a Deaf doula. My name is Suzanne O’Brien. Thank you so much for being here. This is a really important podcast, something that probably will affect each and every one of our lives with somebody that we love and even with ourselves. So this is the top 10 questions to ask the doctor when given a new cancer diagnosis. So we’re going to go over some of the key important things talking about this and educating about what we can do and what we need to know when we’re going through this part of our lives changes the whole entire journey. And I’m going to say this, that because we’re living so very long, a hundred years ago, life was the average age of life was 47. Today it’s 80, 81. That is almost double. And because we’re living so very long, we’re usually going to be having illnesses, diseases, things that happen in that part of the agreement of living so very long.

(01:51):

It doesn’t come without some downside to it. So we want to really get this conversation going and empower you with the important questions when we are in this space of being given a cancer diagnosis because there’s usually a lot of panic that goes with that. Totally understand. I understand that especially when we’re not talking about end of life. But I want to share with you some really great information that can change the pathway for you and your loved one when you’re, if you are in this space. So first I want to say this, welcome to Ask AEP doula, the Ask a Doula Giver podcast. I also want to remind you that we have a free resource center with free tools, free trainings that’s available to you now@doulagivers.com. So please make sure that you visit that site. When you are facing a serious illness, it’s very important to get organized with your doctor’s appointment.

(02:51):

So bringing somebody else with you, taking notes, even recording what the doctor says. And I have to tell you this, when we hear the word cancer, we sometimes shut down and don’t hear anything else. And there’s so many different variables here and degrees of intensity and things. So it shouldn’t mean death and it shouldn’t mean doom and gloom, and it shouldn’t mean that we are in this terrible situation always. Let’s go from an empowered point of view of what we can do, what information and questions we need to ask so that we can make the best subjective decisions for ourselves. So the first thing I want to say to you is bring somebody to doctor’s appointments with you even if you can record the doctor, because sometimes that happens so quickly and they use terminology that sometimes we don’t understand, but a lot of times we miss things.

(03:47):

So making sure we’re bringing a notebook that we can record the visits that we have, a log that we can go back to and refer and we can bounce it off of an individual who’s maybe not in it. So when it’s you in the illness, sometimes yeah, you’re dealing with not feeling well, you’re dealing with the shock of it all. You don’t really absorb the teaching. Your loved one can be in the same space if it’s a loved one that’s very close to you, they’re overwhelmed with fear and things that are happening. We miss a lot of what the conversation and information the doctor’s giving us. So if you can have an actual person come with you who could be an advocate, somebody that can actually be that person holding that space for the information, then you can go through it again after the visit.

(04:33):

So let’s start with this, is that when we’re given a cancer diagnosis, there can be obviously an overwhelming feeling of fear and shock about it. So I’m going to give you questions that you want to be able to ask your doctor concretely and write the answers down so that you can make the best decisions for moving forward for you. So number one, you want to ask the doctor, how serious or advanced is this cancer? What stage of the disease is it? You have the right and you should be asking any and all questions that you need to. Doctors, they don’t have a lot of time right now and it’s very unfair on them, but you have to get the questions that you want to ask and get the answers to them so that you can have this full picture. What is the stage of the disease?

(05:28):

It goes in a one to four stage of cancer. How serious or advanced is it? You want all the details that’s going to dictate how you decide what you want to do moving forward or if you want to do anything at all. So ask them that question. And then number two, if chemotherapy is advised, ask the following questions. And chemo is a type of medication that you have to understand. It’s very toxic and it kills the bad, but it also kills the good. So it can be a very difficult course to endure. So you want to ask if chemotherapy is advised, ask the following with the type of cancer and staging I have, are there clinical studies that show how the chemotherapy worked? Be an advocate. Ask questions. Do not just take this at face value if somebody says you have this type of cancer and this is the treatment.

(06:27):

And again, I think it’s very interesting the language we use in the medical profession because we use things like therapy and treatment, and I understand a little bit of the therapy part of it, but treatment, there’s such a positive connotation to that. And it is not always a treatment, it is not always a treatment. So we want to base out if this is the right decision for us. So again, ask for clinical studies that show how the chemotherapy actually worked for the type of cancer you have, the staging that you’re at. Then ask the question, how much more time would I likely have if I choose to do the chemotherapy? I’m going to be very honest with you right now that it’s not just always a foolproof direction. I am a former hospice and oncology nurse, and oncology is a cancer nurse. And I had many patients that have died within their chemo treatment or had the chemo treatment and gotten so very sick in addition to it and weak and died anyway after enduring all that.

(07:38):

So you want to ask the question with how much time would I likely have if I choose to do chemotherapy? And here’s the other thing that’s really important, not just the amount of time that you have but the quality of life that you would have. Would I have quality of life? Because again, I’ve had many people go through chemo and be so very sick and it breaks my heart when I think about these patients that they had no quality of life or their quality of life was so diminished and they were so nauseous and just sick that they could not do anything but really be suffering at the end. How long would the treatment be? So how long is this chemotherapy treatment during the treatment time? What are the side effects I would be subjective to? So again, chemotherapy. Remember, it’s a poison that not only kills the bad and that’s what it’s meant to do, but it kills your good as well. It kills the good as well. So all of your blood levels usually go down. Sometimes you have nerve pain, nausea, weakness, the list is long. So again, it’s going to be different for each chemotherapy and each different cancer. So you want to ask these questions to get to the root of what is best for you with this treatment with the chemotherapy they’re recommending, what are the side effects that I could be subjected to? So that’s going to make me decide if I want to go through it or not.

(09:15):

And then the next question is, what would my overall quality of life look like during the treatment? Will I be sick most of the time? Weak most of the time, nauseous, most of the time. I want to share with you a story. I knew two men that both had lung cancer and both got diagnosed with it a month of each other. They’re both 80 years old. One lived in New York, one lived in Boston. So both in these great areas of teaching, hospitals, medical hospitals, the top of the level of what they could have access to. And one of the men said, well, I’m 80 years old, I have lung cancer. I’m just going to go home, go on hospice care garden and just live out my days. And the other man lived in Boston and immediately went into treatment again. I stopped when I was going to say the word treatment because it really just, it doesn’t want to roll off my tongue.

(10:11):

Started chemotherapy and radiation the following week. And I have to tell you that I saw and heard about both of these men during the year of their next year of their life. The man who decided to go home on hospice was gardening, making jokes up until the very end laughing. And the man in Boston, I actually saw him at events and he was very weak and very sick and very pale and guess who lived longer. I want to ask you if you know who lived longer. Yeah, the man that was on hospice care lived about two months longer, but his quality of life was dramatically different. So what happens when we get usually and understandably so a cancer diagnosis is that fear, right? That fear of death, that lack of our conversation about end of life and knowledge allows us to go right into the medical treadmill and the default.

(11:10):

And you’ve got to stop and you’ve got to breathe and you’ve got to get your bearings together. And I hope that you’ve already thought about your advanced directive and quality of life to you before we ever get to this place because it’s so important when we’re not faced with it to be able to make really good decisions for ourselves. But these are the questions that you want to ask. And I wanted to share that story because I think it’s so important to understand that end of life is a part of our journey and it can go well, it can go well. And a good end of life is you deciding ahead of time what quality of life is to you, and then what do you need to put into place to make those things happen. The man in New York, he had a caregiver. He was happy to be on his land, he got hospice care.

(12:02):

Sounds like he had a great time. He was really happy. The other man who went right into treatment with pressure from doctors and his family and the fear had a really, really challenging last year of his life and died regardless and actually died sooner than the other man. So this is not always going to be the case, it’s all individual based, but that’s what I’m saying is that the individual is you and you need to make subjective informed decisions that are best for you, not anyone else but best for you. And these are the questions to ask to be able to do that. So you want to ask again, what would my overall quality of life look like during the treatment? Will I be sick most of the time? Weak most of the time because to me, if I’m nauseous and I’m weak and I can’t do anything, what quality of life is that to me?

(12:50):

I’d rather have the last six months year of my life being able to have some fun, do some things, enjoy time with my loved ones, not the opposite. So ask those questions. And then how likely the next question, how likely am I to be hospitalized for chemotherapy complications? So many times in the oncology unit, we would have people that would come in through complications, through chemotherapy. Their blood levels were so low, they were intractable. Diarrhea, nausea. I mean, can you imagine you’re not feeling well and now you have no control over your bowels and you just are having this crazy diarrhea because everything in your body is being plummeted with this medicine. So we want to be careful and we want to make sure it’s the decision that we want to make. So again, there’s no right or wrong, it’s just informed decisions. And the benchmark really should be those top questions.

(13:51):

With the type of cancer and staging that I have, are there clinical studies that show how the chemotherapy works if it’s above a 50% and a high probability that yes, I tough this out, I go through this regimen of chemotherapy, then I come out on the other side and I get back to my life and I have years to living, that’s great. If there’s a slim chance of that happening, then I might not opt for that. So you want to be able to ask that and then say, how likely am I to be hospitalized by the chemotherapy complications? Ask, will I be able to do the things I enjoy? Is this a regimen that people are able to enjoy life during it? Next question is, do you add in any adjunct therapies to the chemotherapy such as reiki, nutrition, vitamins, mineral supplements? We are holistic beings.

(14:50):

You are a holistic being. And the best plan of care in my opinion, is east meets West. Not one size fits all. So not only a medication that’s recommended, but what about other adjunct therapies? And I will tell you, the people that have adjunct therapies, they’re thinking outside the box, they’re thinking holistically, they’re looking at the big picture. And you want a practitioner who’s looking at the big picture for multiple reasons, multiple reasons. It really just says a lot about them. And then you want to know what alternatives are there. So what alternatives are there? Are they only giving you this one choice? Are they giving you plan A, B, and C? Are they giving you, and this is what I would always recommend from a good doctor and how we should do things and you should what you should be asking for. If I do plan A, which is what they’re going to recommend on their first go round, great.

(15:55):

Is there an alternative? Maybe there’s a hybrid plan, maybe there’s a wait and try something more conservative plan. And then is there a C plan? So we should always have an A, B, and C, and we should look at all facets of them. And that’s where you’re going to want to get a second and even a third opinion, don’t just take the first one. A lot of times there’s a bit of we need to start right away Monday. And of course the fear that goes along with cancer, we all tend to just blindly follow that. And once you start that process, it is very hard to reverse. It is almost impossible to reverse. So ask what alternatives are there to that. Maybe ask for a plan B in a plan C. And then the last question that is really important for you to ask them is, what would happen if I choose to do nothing?

(16:49):

And I can almost say what the doctor’s going to say to you right now. They don’t usually like when we question them, this is your body, this is your life. You have every right. And you have to know what is available to make the choice that’s right for you, not for them, not for your loved ones, for you. So ask them what would happen if I did nothing? And they might give you a little curt answer, but I don’t want fear to be the thing that propels you into doing something that you don’t want to do, which I’ve had many people go down that road. We don’t think about this when it shows up. It’s scary. So just ask them. And it may be, well, we’ll wait and see. We’ll watch it and we’ll see what happens. So I want to give you a few pearls for this area of care.

(17:46):

Please remember that making a hasty or fear-based decision can lead you down a path you may not be able to change down the road. And when I say may not be able to, it’s pretty much 9.9 out of 10. And then the other doula givers pearl, and this is so very important to understand, is that quality of life is going to be unique and subjective to you. It’s also your benchmark that you should base all of your decisions on. So let’s give an example. What’s quality of life? It’s going to be different for everyone. So for me, if I can’t recognize my loved ones, if I can’t do anything for myself, if I can’t play with my dog or pet my dog or interact with my dog, I love to go outside once a day. If I can’t do those type of things, then quality of life is not available to me and I do not want to do things, measures, treatments, surgeries, medicines to keep me going if my quality of life is not available.

(18:49):

And that’s going to be my benchmark. So if I’m in a benchmark where I’m at a place where that’s not going to be possible to bring quality of life back, then why would I do this? Why would I do a round of chemo or a surgery or a procedure to keep my life extended, which means breathing. If there’s no quality to it, why wouldn’t I choose the comfort of being at home with my loved ones with good symptom management? Of course I would. And that’s what I’m choosing always. That’s always my choice. But for you, you want to think about what quality of life is for you and use that as the benchmark to make all decisions based around this. So again, every decision should be with this as that benchmark of where you’re going to decide to do something, to try something, to have a surgery or to not.

(19:51):

Quality of life is the benchmark. So again, these are the top 10 questions you want to ask your doctor when given a cancer diagnosis. Number one is how serious and advanced is this cancer? What stage is the disease? If chemotherapy is advised, ask the following with the type of cancer and staging I have, are there clinical studies that show how the chemotherapy you are recommending worked? I want to see it in writing. How much more time would I likely have if I choose to do the chemotherapy? How long would the treatment be during the chemotherapy time? What are the side effects that I will be subjected to? What would my overall quality of life look like during the treatment? Will I be sick most of the time? Weak most of the time. How likely am I to be hospitalized for chemotherapy complications such as intractable diarrhea, weakness, vomiting, pain, whatever it may be.

(20:52):

Even I’ve had patients who’ve broken their bones. It depends on what the chemotherapy is. The next question is, will I be able to do the things I enjoy? Will I be able to still have quality of life? And then ask this question, do you add any adjunct therapies to this chemotherapy such as Reiki, nutrition plans, vitamins, mineral supplements? What alternatives are there? Do you have a plan B and a plan C for me? And then the final question, what would happen if I choose to do nothing? And again, I’m going to ask you this to just breathe. I want you to breathe first and foremost when given a life-altering diagnosis such as cancer and so frightening, stop. And just remember to slow down and breathe. This can be completely overwhelming at this moment. And always get a second and a third opinion. Don’t rush. Don’t rush into anything.

(21:49):

Take your time and decide what is the best course to take for you, not anyone else for you. And I will tell you this, there’s so much support out here that we all are going to be in a space for the most part, that we’re faced with things that impact our lives with quality of life and disease processes. And it’s up to us to decide what quality of life means to us, and then to use that as the benchmark when making decisions on what we are going to do moving forward. And one of the most important decisions you can make at a certain time when you are ready is to make sure that you are supported in that support of symptom management, comfort care, the highest quality of life every single day for as many days as we have end of life, is a natural process. Do not be afraid. I want to thank you so much for being on this episode of Ask a Death doula. My name is Susan O’Brien. Don’t forget there are free resources and free trainings available to you and your family@doulagivers.com. So go ahead to the website and just pick which one works for you. And I want to thank you so much for being here, and I’ll see you in the next episode. Thanks everybody.

Speaker 2 (23:07):

Thank you so much for being part of Ask a Death Doula podcast. Please remember that everyone everywhere has the ability to have the good death with the right education, kindness, and support. See you in the next episode.