Dr. Debi Lynes interviews Janet Porter about palliative care in the home for any stage in life
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Takeaways
Open a dialogue and invite a conversation about aging in place end of life. It may be difficult to open that conversation, but it sounds to me like the rewards are exponential. What is palliative care? How death with dignity and having a quality of life is the most important thing.
Transcript
Debi Lynes: 00:03 Hi and welcome to aging in place for every stage in life. What if you could visit or have a home that would accommodate anyone at any age, any physical ability at any time? How cool would that be? That’s what we’re doing here at aging in place. Why me? Because I’m a doctor of psychology and I specialize in physical spaces in health and wellness. Also, I love designing with intent at any age. Why now? Because we the baby boomers want to age in place gracefully and we want our families around us as much as we can and why you the audience? Because we want you to experience what it’s like to have a home that’s safe, aesthetically pleasing, and that you can live in at any age with any ability at any time. I’d like to introduce you now to Aging in Place Podcast for every stage in life.
Debi Lynes: 01:05 Hi and welcome to aging in place for any stage in life. I am here today with my friend Janet Porter. I am thrilled to have you here with us. I would like before we even began to chat about palliative care and everything we’re going to talk about for you to share a bit about your history. It’s fascinating.
Janet Porter: 01:23 Sure, Debi, thank you for inviting me. I am a hospital administrator by background. I had a guidance counselor in college tell me “you should be a hospital administrator”. And that’s what I’ve been most recently. I was at Dana-Farber Cancer Institute in Boston, but I’ve also been passionate about leadership development throughout my career. So I’ve spent a lot of time as a faculty member at a lot of universities teaching leadership development and I’m most recently been very involved in governance. So I’ve been on the board of AARP. I’m on the board of trustees at Ohio State and relative to today’s topic, I chair the hospice board, hospice care of the low country and Hilton Head because I’ve been very passionate, not only about leadership development, but about end of life throughout my career.
Debi Lynes: 02:11 Well, you know, talking about aging in place at any stage in life, I think we often have a misconception that that is really about older people dying at home. I think the goal for this podcast is to really help people understand what it’s like to be able to have anyone at any time come into your home and feel comfortable. And I think it’s really interesting to talk to you today about palliative care, what it is and really about what it’s like at the end of life to age in place and specific things we may need.
Janet Porter: 02:42 Okay.
Debi Lynes: 02:43 So let’s get started and talk a little bit first about what palliative care is.
Janet Porter: 02:48 Sure. Palliative care is a specialty in medicine, just like becoming a radiologist or an emergency room physician. And you actually get board certified in palliative medicine and it’s really physicians who oftentimes have all different types of backgrounds. They might be a pediatrician, they might be an internist, they might be a radiologist, they might be a nephrologist, but they’re often dealing with complicated patients and end of life patients. So palliative care doctors learn the process of really symptom management and managing the complex illness of patients and they’re often brought in as a referral at end of life because they’re usually very expert at also having the tough conversations.
Debi Lynes: 03:30 It’s really interesting when you’re talking about it. When I think of palliative care, I think of end of life, no more active treatment interventions and it’s more about quality and comfort. What was interesting about what you said is also complex cases, so not just end of life.
Janet Porter: 03:49 Right. So we have patients who get referred because of complex medical problems. They might have GI problems, they might have, you know, serious arthritis. They might have lots of different complicated problems. A lot of contraindication with medicine, met various prescriptions. Sure. And they’ll get referred to a palliative care physician to help them manage the complex care and all their symptom management and may be with that patient for years. It is true that a lot of doctors who specialize in end of life care had been trained in palliative medicine. I’m a faculty member in Harvard’s leadership program in palliative medicine and those physicians in that program and nurses and others come from a whole variety of backgrounds, but at their heart really want to help people die with dignity at end of life.
Debi Lynes: 04:37 So let’s bring that back to the aging in place in your home. Why is that so important to remain at home?
Janet Porter: 04:45 Well, you know, one of the things that surprised me because my parents were not like this when I joined the board of AARP, is how, what, how many people want to age in place, aging in place and dying in place is the strong preference. 85 90 95% of people do not want to leave their home. And so this is a really relevant topic because people not only live a fully.
Debi Lynes: 05:11 Correct.
Janet Porter: 05:11 In their home as long as possible, but oftentimes, I mean, mostly patients want to die at home. Also.
Debi Lynes: 05:17 Let me ask you a question. Is this a United States thing where we want to stay? Well, where we typically have older people go to facilities or nursing homes as opposed to multi generational living?
Janet Porter: 05:31 Well as you know, other cultures are in other countries are often much more respectful of elderly elders and honor them and want to honor their wishes and do have multi generational support with families living.
Debi Lynes: 05:46 Yeah exactly.
Janet Porter: 05:46 Close to each other. United States is so large and people are so young. People are so scattered now.
Debi Lynes: 05:52 True.
Janet Porter: 05:52 That it’s very unlikely they’re living close to their elderly parents.
Debi Lynes: 05:56 But with that mind, I think as a baby boomer, someone who’s over 50, I’m not so gracious about being transported to a facility. I think I’m going to really, I want to know more about this. I want to know how to age in place. I want to know today at 60 or 66 how to create a home that I can age gracefully and, or die with quality. And I want my kids to create a home for me that I can visit.
Janet Porter: 06:26 Yes.
Debi Lynes: 06:26 And stay engaged and involved. So it’s really back to everything you’re talking about.
Janet Porter: 06:32 Yes you know, it takes me back to my grandfather who was about 70 years old and in, in a little town called Verona, Pennsylvania. And he said he was having heart trouble and I, when the ambulance came, he was like, I’m not leaving my home. You know, I am fine here. I’m out. And he handed the car tech and died in the ambulance, but he was, he didn’t want it. He was walking down those stairs and he wasn’t going on a gurney, you know, and so many of us, that’s, that’s, that’s what place we found safe. And hospitals are, you know, oftentimes challenging places in terms of infection rates and errors. And so say home is a safe, safer place a lot of times.
Debi Lynes: 07:10 it is a safer place. One of the things we talk about on the podcast a lot is how to create that safer place from a being on the board of AARP, number one and number two, just having an end of life interest, passion and specialty. What are some things that you can think about that are just easy ways to make your home more visitable?
Janet Porter: 07:32 Well, the first thing of course, is to live on one story. I mean that’s the most surprising thing to me is the number of people that I know who choose to live in homes that have many stairs to.
Debi Lynes: 07:44 Show up.
Janet Porter: 07:44 Which is very difficult. So either being on a one story house or a one story house that has a bedroom so that you can be on one floor is the major thing because it’s the biggest obstacle to people being able to stay in their homes is stairs.
Debi Lynes: 07:59 Okay.
Janet Porter: 07:59 Either stairs coming into the house or a second or third story.
Debi Lynes: 08:02 Let me ask you a question about going back to palliative care for just a moment and ask at what point do do palliative care physicians or even the process of palliative care come into play? In other words, as a patient who has a chronic disease, at what point would I perhaps call in a palliative care physician.
Janet Porter: 08:25 At any point you can ask your physician, your primary care physician, just like you could ask to go to see an orthopod or an ophthalmologist.
Debi Lynes: 08:35 Sure, sure.
Janet Porter: 08:36 Or you can say, my symptoms are so complex and require such management, I’d like to be a referral to a palliative care physician. Unfortunately, we don’t have a lot of them around the United States. The big cities have them, but it’s tough to find outpatient palliative care. We’re getting in terms of producing more people who have this interest, but it’s tough to get them when you’re an inpatient. It usually happens because the family insists we’d really like to talk to a palliative care doctor. And that oftentimes then leads to the tough conversations about what really mom or daughter or sister wants at end of life.
Debi Lynes: 09:14 And I think that those are the two questions I want is what does palliative care really look like, number one. And then we’ll take a break. What does it look like and then come back. And I think during the second segment, I’d love to talk about, having tough conversations.
Janet Porter: 09:30 Okay.
Debi Lynes: 09:30 So let’s talk first about what palliative care looks like to the patient.
Janet Porter: 09:34 To the patient who let’s say a patient is an inpatient and the family says we’d really like a palliative care consult that involves a physician who’s understanding the full scope of illness of the patient and what the treatment plan has been, but is also really focused on symptom management and what symptoms are they trying to get under control, whether it’s end of life or not. It’s oftentimes the symptom management that’s critical to get the patient home, which is where they want to be. So palliative care can be helpful with the symptom management so that the patient can go home and then home care or if it’s end of life, hospice care can care for them, but have palliative care. Also good at having the conversation.
Debi Lynes: 10:14 Exactly.
Janet Porter: 10:14 Tough conversation with the family at end of life.
Debi Lynes: 10:19 We’re going to have a take a quick break. We’re going to come back and I’d like to talk about what those tough conversations look like, how we begin to have them. And then I’m also very interested in the component pieces of those conversations. What just popped into my mind was what about do not resuscitate? What about who is the executor of my estate? I’m thinking all at once. Things that my mind is like too much to comprehend. So stay with this. We’ll be right back here on aging in place.
Debi Lynes: 10:50 Hi, I’m Dr. Debi Lynes design elements are psychologically and physically supportive and conducive to health and wellness. To learn more about what Lynes on Design can do for you, for more information on certified aging in place and facilitative and supportive design, look for us at lynesondesign.com. That’s L-Y-N-E-S on design dot com.
Debi Lynes: 11:16 We are back here on the Aging in Place Podcast for any stage in life. I’m here again with Janet Porter and we’re talking, we’re somewhat all over the board, but the focus is on palliative care and that has sort of morphed in and something that you’ve taught me in preparing you and I talked about this at lunch one day about asking the tough questions, having to tough conversations. So I’m going to turn this over to you. This is pretty interesting.
Janet Porter: 11:42 Well, in the United States…
Debi Lynes: 11:47 Okay.
Janet Porter: 11:47 The legal field has legalized dying, which is then you really declaring where want your assets to go. People understanding where to where do your assets go through a will through other documents. But the other thing that’s happened is the medical establishment has medicalized dying has made it about what procedures you do or do not want. Do you want to feed into it? Do you want to be put on a ventilator. What do you want to do if you’re in a vegetative state. And while those things are important, and we’ll talk about the documents you need for both of those, that’s important. The truth of the matter is what we want when a loved one is dying is we want to honor their wishes. And that is, that does not just mean whether they want a feeding tube or where they want their, you know, precious, you know, figurines. But instead is knowing not what’s the matter with you grandma, but what matters to you.
Debi Lynes: 12:42 Wow.
Janet Porter: 12:42 And it’s about having that conversation about what matters to a 19 year old and 89 year old. That is really important because what we want to do is honor what matters and.
Debi Lynes: 12:54 How do you even begin that conversation.
Janet Porter: 12:55 Well actually there’s a great resource. It’s called the conversation project conversation project.org very easy to find.
Debi Lynes: 13:05 Perfect.
Janet Porter: 13:05 On the web. And Debi, they have toolkits that are little, little forms that you can go through where you reflect on the conversation you want to have with your spouse or your 19 year old son is not road riding around without a motorcycle helmet on.
Debi Lynes: 13:20 Right exactly.
Janet Porter: 13:20 Yeah and that document, that little toolkit kind of walks you through how to prepare for that conversation. When do you want to have it? Who do you want to be there? What questions do you wanna ask, etcetera. You know, the conversation project has done a lot of research on this and 92% of people say if they were seriously ill, they would want to have a conversation with their doctor about their wishes. 32% have chosen to do that. But more importantly, 80% of people say that if they were seriously ill, they would want their loved ones to know what their wishes were. 18% of people who’ve seriously ill have done that. I mean the statistics are overwhelming. The 21% of people say they’d like to talk to a loved one about what they want, whether they’re healthy or what, and yet they haven’t done it.
Debi Lynes: 14:05 Is it fear, blame, shame, embarrassment, fear?
Janet Porter: 14:08 You know what you remember Dr. Ruth?
Debi Lynes: 14:11 Okay, Oh my goodness.
Janet Porter: 14:12 Yeah, yeah.
Debi Lynes: 14:14 I like her.
Janet Porter: 14:14 Yes exactly. So you know, we couldn’t say the word orgasm on television until.
Debi Lynes: 14:18 Exactly.
Janet Porter: 14:18 Dr. Ruth came along.
Debi Lynes: 14:19 I still remember that.
Janet Porter: 14:22 Little German woman saying that she, you know, talking about words that we’d never used before on television. Well, I kinda think we need a Dr. Ruth of death. You know, because talking about sex was a taboo subject.
Debi Lynes: 14:36 Correct.
Janet Porter: 14:36 It’s much less taboo now because of her and others. And death is a taboo subject. It’s not something people feel comfortable talking about.
Debi Lynes: 14:45 Which is ironic that you say that because I’ve got nine grandchildren. I was 10 and my little five and six year. When they’re in the back seat, they’re always talking, what does heaven look like?
Janet Porter: 14:55 Are they?
Debi Lynes: 14:55 What is it they feel like, well they lost a dog. What does that feel like? And it’s really interesting to listen to them be so open to the circle of life kind of.
Janet Porter: 15:06 Yes.
Debi Lynes: 15:06 Where we as adults are like, Oh my gosh, we’re trying to protect you. We don’t want to talk about things that aren’t wonderful and you know, rainbows and butterflies.
Janet Porter: 15:14 Exactly, exactly. When I do, when I do presentations on this, I say to sometimes to college audiences, I’ll say, I’m going to talk to you about my sex life, and they all like sit up and feel uncomfortable and have butterflies in their stomach. I said, okay, I’m not really going to talk to about my sex life, but I’m going to talk about personal financial planning. And they’re like, they’re like, what? I said, you know what? You would feel equally uncomfortable if I talked about sex.
Debi Lynes: 15:37 That’s right.
Janet Porter: 15:38 If I talked about dying or if I talked about personal finance, how much I was net worth because we have these cultural taboos against topics that it’s okay, I don’t know about you but I don’t have any idea what my best friend makes or what.
Debi Lynes: 15:50 I don’t neither.
Janet Porter: 15:50 Not. A, we don’t talk about it and we don’t talk about death. We don’t talk about end of life and what’s important to us. And, and you know, what’s important to people in terms of their wishes is things like I want to reconcile with my brother. I want to know what’s gonna happen to my cats, who’s going to take care of my garden. I mean knowing those things about what’s really what matters to people and what would give them solace if they could resolve before the end of life is really important gift. We want to give those we love.
Debi Lynes: 16:21 And it is a gift. When my mom died last August, we found in one of her calendars from 2004 every year she had written, we had no idea she had written, if she died, you know what she wanted. And to your point, not her assets, but what song she wanted played. She did not want a picture in her just over and every year she’d cross it out and change it or adapt it and then initial it.
Janet Porter: 16:53 Yeah, Yeah, you don’t want my mom, my mom’s was what the color of the tablecloths were going to be.
Debi Lynes: 16:59 Love her. I like that, I get that. And the colors change year to year, but at least we knew it. End of life, which color she wanted. So we’re talking about a taboo subject. Do you and I right now with humor.
Janet Porter: 17:13 Okay.
Debi Lynes: 17:13 With serious subject. But there’s a lot of beauty to it.
Janet Porter: 17:18 There is, you know the, the thing I read a recent, [inaudible] article written by BJ Miller, who’s a national expert tie to palliative care doctors, a national expert in essence, the interviewer asked him, you know, what the experience was like at end of life. And he talked about how many people that he’d gone through the death process with who were really relieved and felt solace that issues had been resolved, that were, that were bothersome to them. So, it’s really an important thing for us to make sure that people live fully the end of life and then die at peace. And I would think of it.
Debi Lynes: 17:52 And what does that mean? I hear that a lot die. The quality of life and death with dignity. I hear that from hospice a lot. What does that look like? Is it just encompassing everything that we’re talking about? And then what?
Janet Porter: 18:04 I would say the number one thing is it looks like a lot of listening. It looks like really listening to the patient and the family in terms of what matters to them and honoring that. And hospices across the country are expert at that. They’re expert at really going in and helping not just the patient, but the patient and family deal with this major life transition. You know, Debi, that we’re all gonna face. And what I say to people is giving the gift of the conversation to people is a wonderful thing. When my mother passed away, she had had a serious stroke and I had three sisters and she was in the hospital and my mother had been very clear about what her wishes were and we got on the phone one day, they were doing all this stuff in the hospital and I knew she was really in bad shape and we got up one phone call on the with a palliative care physician and in an hour the palliative care physician said to us, are you clear about what your mom wants? We said, absolutely. And they said, then you need to honor her wishes, whatever. That if we took her off all medication, we took her out of the hospital, we put in our hospice care. She ended up living in other full year, which was big surprising to us.
Debi Lynes: 19:16 But alongside of that and kind of the underlying CMI here is four girls, right?
Janet Porter: 19:23 Three girls,
Debi Lynes: 19:24 Three girls. There were three girls and it was less about individual points of view about how to manage your mother. But the doctor basically said, you will take you and put you here. This is about your mom’s wishes.
Janet Porter: 19:37 Yes.
Debi Lynes: 19:37 So in some ways that helped avoid a lot of potential because we all, we all see through our own lens and have ideas of the way things should be for the people we love.
Janet Porter: 19:49 You can’t ask anyone, what do you want an end of life and have the person to answer. I want my children to be fighting over what should be done.
Debi Lynes: 19:57 Right.
Janet Porter: 19:57 No one wants that. Right? And so how can your children do what you want if you don’t tell them and tell them together. Not just Susie, the oldest daughter, right. And leaving the boys out of the conversation, which happens, but in fact being clear about it both verbally with them and in writing so that they can then have unanimity about what’s the best thing for mom.
Debi Lynes: 20:21 It’s so funny. Bernay Brown who is a psychologist and she’s really an inspiration. I was like clear is kind and I.
Janet Porter: 20:29 Exactly.
Debi Lynes: 20:29 Say, yeah, and this is the perfect place to do that. I know we’re going to take a quick break. We’ve got a couple of things to come back and talk about. We’re going to talk about some of the tools within those toolkits, paperwork, documents, things like that that will be helpful and I also would love to have you share an anecdote about your favorite book. I’ve been looking forward to this and I thought it would be a great way to exit the interview.
Janet Porter: 20:50 Okay yes.
Debi Lynes: 20:50 So stay with this will be right back here on aging in place.
Henrik de Gyor: 20:55 For more podcast episodes, links, information and media inquiries, please visit our website at aginginplacepodcast.com as we transition through life with the comfort and ease you deserve. Discover how you can create a home that will adapt to you as you journey through life and the changes it will bring. Please follow us on Facebook, Twitter, and Instagram as our host Debi Lynes and her expert guests discuss relevant topics to creating a home for all decades in life. Don’t miss our weekly episodes of Aging in Place Podcast for every stage in life.
Debi Lynes: 21:32 We are back here on aging in place. Again, we’re here with Janet Porter and we are talking about aging in place. We are talking about palliative care. We are talking about having an end of life discussion. And what resonated with me was what I think you probably see all the time. You’ve got the emotional one, you’ve got the stoic matter of fact buttoned up. Here’s my list, here’s what you want to do. And everyone is so different. How do you guide someone through this process?
Janet Porter: 22:01 Well, that’s one of the reasons that hospice care and palliative care physicians are so important because it’s all about listening, but it’s about helping those disparate opinions come together and reach consensus and it’s very tough. And you know, it’s emotional for people. Some people are more pragmatic and thinkers. Some people are in denial. What’s sad is the number of people who report that they brought it up a couple of times with their children or their spouse. This is what, I don’t want to talk about it. I don’t want to talk about it. Oh my goodness. There’s nothing worse you can do when somebody is ready to talk about what they want an end of life than to shut them down. It’s been, they’ve probably thought about it a lot before they’ve come to you. Right? And so being open, emotionally open to recognizing and you might not be the first time and then you’ll go back and think about it. But when a loved one is ready to have the conversation, the gift you could give them is to be there and really listen with an open heart. Some of the data is that 53% of people say they would be incredibly relieved to be able to have the conversation but have been blocked from doing so. 95% of people at end of life say they’re willing to have the conversation that maybe somebody else has to bring it up. So you know, if mom or dad doesn’t bring it up and you think it’s time, you need to figure out a way to bring it up. And that’s why the conversation project again, conversation project.org is such a great tool. They have tools, they have tool kits for dealing with people with dementia. Because imagine how complicated it is when you, not only a degree, but you really can’t. It’s too late to have the conversation with mom. I mean imagine how tough that is.
Debi Lynes: 23:39 Yeah, I never thought about that.
Janet Porter: 23:41 Oh yeah, they have a car, they have a tool kit for dealing with children, walking children through about what they want and, and they have one for adults so they have different toolkits based on the situation.
Debi Lynes: 23:51 If you could just give us an overview of documents or people that you would like to see involved in the team. Okay. As we have a chronic illness that we need to manage or where at the end of life is there a team you would put together?
Janet Porter: 24:07 Well let’s, let’s say, let me ask you answer the question about documents cause you mentioned documents. There’s another resource I’d like the audience to have. It’s called a Five Wishes, five wishes.org. And it walks you through the five wishes as to what my mom and dad or brother or sister or anybody would want. and prepares you for that conversation. And it’s a document that’s legally accepted as a will in for something like 42 States. So five wishes. It’s downloadable right from the internet. It’s not complicated and expensive and so people say, well, what prohibits them as, they don’t want to go to a lawyer and spend $500 or a thousand.
Debi Lynes: 24:45 Right.
Janet Porter: 24:46 It’s right there available on the web for you to clarify your wit, your medical wishes, your legal wishes and other wishes that you would have an end of life.
Debi Lynes: 24:54 Oh, that’s huge. Five Wishes. I think we’re all going to be on that immediately. What stage? Let’s, let’s go back to the, the palliative piece for chronic illness. Okay. Is that really more about how to keep a person safe and healthy at home with symptom management and what does that look like?
Janet Porter: 25:13 Mmm. Yes. I would say that’s a good description. It’s about helping them to manage their symptoms so that they can live life as fully as possible. Because after all, what we want people is to live fully until they die. And we have incredible stories of people who in their last year of life or six months of life have done incredible things. I think I’ve mentioned to you that my favorite book is this book Driving Miss Norma.
Debi Lynes: 25:38 This is what I’m dying to hear.
Janet Porter: 25:40 And I give it to everybody. I should’ve brought it today. I gave it to you that right.
Debi Lynes: 25:46 I loved it. I read it.
Janet Porter: 25:47 So Driving Ms Norma is a memoir and it’s by Tim and Ramy who are a couple who went to Michigan one year. They were living in the Airstream trailer kind of nomads and they go to Michigan and Tim’s father dies and mom is diagnosed right away with cancer. Mom is 90 years old and they say, mom, you can can’t stay in the house by yourself. We can put you in skilled nursing here, here in Pennsylvania with, or you could hit the road with us. And the next day when they go to the doctor, that doctor outlines the whole treatment plan for cancers, all these drugs and radiation and Miss Norma, what do you want? She said, hell, I’m 90 years old. I’m hitting in the road. And she wanted to go see Mount Rushmore and she wanted to go to New Mexico. They took her all over the United States. She had all kinds of adventures. I recently, I’ve done a lot of speaking on this and I had a physician that group, right. Not everybody’s going to have a big adventure at end of life. And I thought the messages in the book, I’m not about.
Debi Lynes: 26:45 What are the themes?
Janet Porter: 26:46 Well, the first theme I think is too is that people have a lot of life in them at every age and, and that you should honor their people’s wishes in terms of what they want. And she wanted to hit the road. So they had supported her hitting the road. There’s a lot of messages in there about how kind and open Americans were as they traveled around the country in terms of, because of the social media buzz she got, they opened their hearts. We’re here in Hilton Head and you know, when she, they ended up coming here, they ended up making her and putting her in the parade. She was in a car on the parade.
Debi Lynes: 27:19 Oh, I love it.
Janet Porter: 27:21 So, so that’s one of the major themes. And the major theme is about having the conversation with people about what you want. Major theme about hospice care. So the book is really a powerful testimony, I think. And I think also sparks the conversation. So if you want to have a conversation with somebody about end of life, give them the book, let them read it. It’s only a couple hundred pages. It’s a great story. And you can say, and what would be important to you, let’s say it’s your best friend who you’re worried about. What would be important to you and what can I do to help make that possible? There’s a, another book called being mortal, highly recommend.
Debi Lynes: 27:56 I read that about three or four years ago and I thought that was one of the most powerful books and I was resistant to it. And even being a psychologist, I don’t know why, I just didn’t really want, I don’t know. It was one of the best books I’ve ever read.
Janet Porter: 28:09 Yes.
Debi Lynes: 28:09 And how would you describe the theme of that?
Janet Porter: 28:12 Well, a tool. Gawande is a Harvard physician.
Debi Lynes: 28:14 Right.
Janet Porter: 28:14 I know him. He practiced at the hospital where I worked really good. He’s a thyroid cancer surgeon and he basically tells the book through this, through the story of his father who was a physician in Athens, Ohio and he comes home and realizes that his father really has terminal medical conditions and he then goes on to describe in the book what that was like for him personally and also shares a lot of story of his own patients. The PBS special about that, which I thought was terrific, an hour long special. What I thought was tragic and that at one point they had a woman who they were having the conversation with her about that this was the ad and she was sitting up in bed and she said, doc, all I want before I die is to take my children to Disneyland. And she died five days later. You know, and you think about if they had had that conversation with her about six months earlier, maybe she’d been able to do that. And think about what lasting memories that would have given to those grandchildren of their grandmother.
Debi Lynes: 29:12 Who typically in today’s culture and society brings up the, the death or dying, end of life conversation based on your experience?
Janet Porter: 29:23 Well, surprisingly it’s oftentimes not the patient, you know, patients, I worked at a cancer hospital for years and the vast majority of patients listen to what the doctor recommends and don’t really ask and what will be the quality of my life, what the, what’s my prognosis? And oftentimes take patients on a cancer journey a long time because the doctors very much want to keep them alive and are very hopeful about the treatments and you don’t want to take away people’s hope. And so people are often reluctant, both patients and family members are reluctant to say, tell me really what the prognosis is.
Debi Lynes: 29:56 And that’s not saying you have three months to live. That’s just simply being realistic.
Janet Porter: 30:01 Right, right.
Debi Lynes: 30:01 When you talk about a prognosis.
Janet Porter: 30:04 Right, right. I had a friend who came to Dana Farber cancer Institute and they’d been told, they’d been told at another cancer center that they couldn’t do anything else and they wouldn’t give them any prognosis. And he said, I want you to know I have grandchildren.
Debi Lynes: 30:18 That’s right.
Janet Porter: 30:18 I want you to know. And they said, if you stop all treatment, you’ll live six months. If you stay on standard chemo and we think you’ll live a year, but we’ve got a clinical trial for you that we think will extend your life beyond that. And when I went to dinner with them, they were so relieved and they had decided to do the clinical trial. He lived two and a half years and what he wanted was his grandchildren to remember him and he was so pleased with, by the time someone says, I want to know my prognosis he wants to know.
Debi Lynes: 30:48 What exactly. That’s not the first thing you ask when you’re diagnosed. That’s when you’ve run through a lot of the treatment options.
Janet Porter: 30:53 That’s right.
Debi Lynes: 30:54 I think it’s absolutely fascinating. You don’t realize how interesting the hell in the whole conversation is. And I think bringing it up, demystifying it, and having an open dialogue like this. Oh, I’d like to invite everyone who’s listening to, talk to one of your loved ones. I think it’s a pretty powerful discussion.
Janet Porter: 31:12 Unfortunately, we sort of have a myth that we think doctors are really good at this and doctors are taught to save your life. And so the training that doctors get to really have these tough conversations is modest at best. And it’s not something they’re human beings.
Debi Lynes: 31:31 Sure.
Janet Porter: 31:31 People feel confident, uncomfortable talking about it. Doctors are human beings. They feel uncomfortable too. That’s why you need to ask the right questions for your loved ones and B, get potentially access to these resources and really think about what you can do to honor your loved one’s wishes at end of life. I also want to tell you that my mother was in hospice care and her mother-in-law had died on Christmas day when my dad was 16. And my mother felt really passionate about the fact that you should not die on Christmas day. So we had a minister who was coming to sing with her cams Oh irregularly. And he came to see her on December 22nd and said, Myrna, what do you want to sing? And for the first time ever she said, I want to sing. I’ll be home for Christmas. And they sang the last song they sang together was I’ll be home for Christmas. And she went into a comment and she died on Christmas Eve. And what I said to people is my mother was very religious and so she wanted to sing. I’ll be home for Christmas. And she was and hospice care and Joe rock, the pastor who was caring for him gave her that final moment. And I’m so grateful.
Debi Lynes: 32:42 It has been an amazing conversation and we thank you all for participating with us in that Janet, especially you. Thank you all for joining us here on aging in place at any stage in life.
Debi Lynes: 32:53 I’d like to introduce you to a friend of mine, Tracy. Tracy is naturally curious and always creative. And when we were doing the Aging in Place Podcast, she said, there are so many quick tips that I can think of off-hand. My response? Who knew! She’s going to be with us every week, giving us a quick tip and a hint. That is a practical application.
Tracy Snelling: 33:23 Thanks, Debi. Surround yourself with needs and not one. Sometimes our areas can get a little messy and organization goes a long way. An organized space helps you move more freely. We tell our children to pick up their toys, but yet we keep a stack of magazines next to the couch. Play a game along with your kids. Have them walk around the house with you and let them tell you what you need to pick up or even better. Get rid of it. We get so comfortable with our things be nearby that we actually lose sight of them. I only need one pencil sitting on my desk so the other nine can go in a drawer. Who knew our children can be great organizers of our things.
Debi Lynes: 34:08 Hi, I’m Dr. Debi Lynes and thank you for listening to aging in place for any stage in life. We would like to ask you all to give us a review. Of course, preferably five stars. Thank you again and we hope you enjoyed aging in place for any stage in life. Janet Porter, what an amazing interview and talk about takeaway that you actually can take away and use. First of all, the most important thing I think that Janet taught us today was open a dialogue and invite a conversation about aging in place, end of life. It may be difficult to open that conversation but it sounds to me like the rewards are exponential. Additionally, what I learned and I think many of you also learned is what palliative care and how death with dignity and having a quality of life is the most important thing. Thank you all for joining us here on aging in place for any stage in life.
Henrik de Gyor: 35:09 Aging in Place Podcast is hosted by Debi Lynes and produced by Henrik de Gyor. If you have any comments or questions, send an email to debi@aginginplacepodcast.com we would love to hear from you if you’re interested in advertising or sponsoring this podcast, email us at pr@aginginplacepodcast.com thank you for listening to aging in place podcast.
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