Anne Kenny – Making Tough Decisions about End-of-Life Care in Dementia

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Anne Kenny, MD
Anne Kenny, MD

Anne Kenny, MD, author of “Making Tough Decisions about End-of-Life Care in Dementia”, is a Professor of Medicine with specialty training and board certification in Geriatric Medicine, and Palliative and Hospice care. She has been a practicing physician for over 30 years and has been recognized by her peers as a “Top Doc” in Geriatric Medicine. She has been honored with a Brookdale National Fellow and the prestigious Paul Beeson Physician Faculty Scholar awards.

Dr. Kenny has worked clinically as a geriatrician in nursing homes, assisted living, rehabilitation and clinical outpatient settings. Dr. Kenny has found joy in her work with
individuals and their families managing issues related to the diagnosis of dementia. Her experience in partnering in the care of these families touched close to home when her own mother was diagnosed with dementia.

Dr. Kenny joined with her mother and her brothers and sister to provide the best care for her mother during the early and middle years following her mother’s diagnosis. Her expertise, coupled with her mother’s playful spirit and her sibling’s openness, support, intelligence and compassion, allowed for the highest functioning and independence of her mother for several years.

Dr. Kenny’s expertise and experience in inpatient and outpatient Palliative and Hospice care were called on when her mother reached the final stages of living with dementia. The Kenny family worked together for their mother’s graceful exit from this planet.

In addition to her clinical practice, Dr. Kenny lectures to both healthcare professionals and the public on aging related issues including navigating dementia, exercise, nutrition, hormone therapy, death and dying, and frailty. She is an educator of medicine and research skills. She has over 100 scientific publications and presentations focused on improving the care and functioning of older adults.

Dr. Kenny is the author of “Making Tough Decisions about End-of-Life Care in Dementia”, published by Johns Hopkins University Press in September 2018. The book outlines care and communication issues at endof-life in dementia. In addition, she hosts a blog focusing on issues common to Alzheimer’s and related dementias and caregiving.

Hanh Brown: [00:00:00] Today, I am so excited to welcome Anne Kenny to Burma living podcast. Thank you Anne. For joining me today.

Anne Kenny: [00:01:19] Thank you for having me here.

Hanh Brown: [00:01:20] It’s good to have you. So would you mind telling our audience where you’re from, where you are now from a career standpoint and how you got here?

[00:01:31] Anne Kenny: [00:01:31] I currently live in Connecticut.

[00:01:33] I’m a Midwestern girl from way back. I have been in. Geriatric and palliative care medicine for the last 33 years or so. I spent most of my time at the university of Connecticut doing research education and clinical care. I on this journey, I. Took care of my mother who was living with dementia for several years, did that from a distance for many years because her home was in the Midwest.

[00:02:01] But as she neared the end of her life, I moved her out to Connecticut to help in the last years of her life, because of my expertise in palliative care. At that time, I looked for something to help my siblings. As I come from a family of six centers as she was changing in her journey and no longer living with dementia, but beginning to die from dementia.

[00:02:23] My siblings were having a hard time and I looked for a resource to help them. My mother did end up passing and I, I semi retired after that due to an illness. And the year I sat on the couch, I thought I’m going to use that expertise both as a clinician and as a care partner and my experience in palliative care and try to fill the gap was a book.

[00:02:45] So I wrote a book about end of life care and dementia. As I started feeling better, I started volunteering at an institution that specializes in dementia care, and it just really launched much more into. Dementia care end of life care, and doing that both clinically, a little bit of writing.

Hanh Brown: [00:03:11] Congratulations. So why did you find it rewarding to work with older patients?

Anne Kenny: [00:03:14] I, I have loved working with older patients since I think I actually knew when I started medical school, I had an amazing mentor. One of the first things she did is have us go visit. Somebody was healthy aging and it was wonderful.

[00:03:32] I had a grandmother that I loved dearly and had a very. Warm and loving connection with. So I saw aging as a positive thing. My grandmother seemed wise to me, my grandmother seemed caring to me and fun and so much fun. And then that was reinforced in medical school where I had already started to see some people with an agency slash that the care of the aging might not be so important, but this one mentor was amazing.

[00:03:57] Jane Potter from the university of Nebraska and she had to start with healthy. Cognitively intact engaged individuals. And from there, she then had us interview somebody who was not feeling as well. And I just found it. I find the individuals real. There’s not as many worries about where you are in life or.

[00:04:20] Impressing someone, but really just being genuine and so open to allowing people into their lives, that deep connection that people will get to so quickly again with, I think that wisdom of aging just sucks. Should we write in? And I’ve been there ever since, and I don’t imagine that I’ll ever work in any other way.

[00:04:41] Children are fun, but yeah, it’s not the same. It’s so much better to be with somebody who’s had such full life experiences and love to tell about it.

Hanh Brown: [00:04:50] Yeah. I share your sentiment, the wisdom, the stories, the attitude, and even the spunkiness the unfilter of their thoughts and assure that they do care, but they care less of what all those things, the whole presence of all that.

[00:05:09] So I appreciate it as well. So what areas of aging or dementia care do you feel that need more attention?

Anne Kenny: [00:05:19] I feel that we definitely still stigmatized dementia far too much. Luckily there’s been a bit of a movement like your podcast showing so many different positive aspects, the dementia friendly movement where we’re trying to get.

[00:05:35] In, uh, society to be a little bit more dementia friendly, but right now, so many people with dementia feel they have to hide that they have dementia or not accept that they have dementia because they’re told immediately after getting a diagnosis, leave my office in six months, come back, get your affairs in order.

[00:05:55] And that is not true at all. There’s they may need to adapt in different ways, but don’t we all, we’re all adapting all the time. Yes. But purposeful, meaningful engagement with the community with themselves, with their family continues for. So many years, upwards of 15 years, but a lot of people feel that they have to cry.

[00:06:19] And there’s a bit of a shame in the society that if you’re not cognitively intact, you have nothing to offer. That is not true. Your cognition stays in tech for a long time and it expands. I mean, we often say that if somebody loses their sight, their hearing may be enhanced. If someone loses their hearing, their sense of touch may be enhanced.

[00:06:40] If you lose some of your cognitive function. Other aspects of you may be enhanced. I, in dealing with my mother, we dealt with each other less and less. Brain to brain and much more heart to heart. And that lesson to me, it was one of the best. My mother taught me so many things throughout my life, but that heart to heart connection, I feel like I used to live in this emotional range about this.

[00:07:03] Why? And after living with my mother with dementia, it’s much broader. I have much higher highs and much lower lows, but I’m so much richer for that experience.

Hanh Brown: [00:07:15] Everything that you were saying, wow, it touches dearly because I share your sentiment and yeah. Everything about it. I don’t think I can say it any better.

[00:07:25] So I agree with you sadly, but I agree with you as far as not able to relate mind to mind or head brain to brain speak, but heart to heart.

Anne Kenny: [00:07:39] I think we’ll get there. I think, I think. More and more people living with dementia are starting to be courageous and starting to show us a way much like other human rights movements in our society.

[00:07:54] People with cancer used to not want to be told they had cancer. And now we have cancer survivor issues. People with AIDS were often. Shunned and shamed, but now that social movement is huge. I think there’ll be a similar dementia movement. There’s so much to be offered by these changes early, make be seen as disability changes, but there’s always the human rights aspect.

[00:08:23] And I’m excited that piece, maybe not in my lifetime and I hope in my lifetime, but at least I’m seeing the movement begin. And I’m happy for that. Probably the secondary is that the end of life dementia is that it’s a long chronic disease, but it’s also a terminal disease. And so I think we live well with dementia for a long time, but then there’s a flection point and we begin to die with dementia.

[00:08:47] And I don’t think our society or our medical society for sure. Accepts that. Is real that there’s this dying from dementia. So we continue to push the medical interventions when they’re no longer appropriate or fruitful.

Hanh Brown: [00:09:03] Certainly a long goodbye.

Anne Kenny: [00:09:05] It certainly can be. I think when I, again, 33 years of practices, I’ve dealt with a lot of people and a lot of families and most want to live.

[00:09:17] Well with dementia for as many years as they can. But once they begin the dying process from dementia, most people say, I don’t want to stay in the dying process. I want to, I want that period to be much shorter and we don’t allow that yet. And the approach in the book that I wrote was to say, it’s okay at the end of the moderate, the early beginning stages to start modifying.

[00:09:44] The medical approach to shift away from the medical approach and go more towards palliative approach. So rather than things I have to treat my blood pressure, I have to treat my cholesterol. Why that’s those are prolong life. And if you’re at a phase in an illness, much like a cancer patient who lives very well with cancer for a long time, but once the cancer turns to terminal.

[00:10:10] Often people say, I re I choose no longer to have treatment for that. We have not thus far allowed that much in people living with dementia, partly because they lose their own voice to that. And it falls on family members. But I think if we start having conversations earlier in the disease and nobody really wants to talk about death, except maybe me, my kids would say, mom, please stop talking about dying, but there’s something about acknowledging.

[00:10:38] And T and having some multiple small, deeper and deeper conversations. And when that is settled, it opens us up to living more. I think when you’re willing to be courageous and go deep like that and say, This is what gives my life value. This is where I would no longer find it valuable. When you can convey that to members helping in your care, then you’ve spoke about the elephant in the room.

[00:11:08] You’ve put out a potential plan for the future, knowing that it will be flexible. We never know what life’s going to do to us. And so we always have to adapt to it. But if you have an idea of what the person that you’re living with or caring with values are. The decisions become so much easier and we don’t have to give them off to the medical community.

[00:11:27] We can say, ah, my mother valued laughter. And when she could not laugh anymore, that wasn’t a quality of life that she, that she would have wanted. And so therefore, if she has an ammonia, if she has a urinary tract infection, she would want me to care for her. Yes. She would want me to care deeply for her.

[00:11:48] But not necessarily treat that condition because that might be what it allows her to leave this planet and go back to laughing as an energy in some other place.

Hanh Brown: [00:11:58] So, so instead of maybe looking what’s wrong with you and how do we treat you medically? Perhaps just let her be in the moment and whatever it takes its course, because instead of looking at what’s wrong with you, what matters to you, right?

[00:12:16] What is it really matter to you now and forward? And maybe it’s not medicine?

Anne Kenny: [00:12:23] It’s usually love it’s a touch. It’s usually something calming. There’s so many ways to care for someone that has nothing to do with medicine. My grandmother was a licensed nurse. She back in the early 19 hundreds and.

[00:12:44] There was, there really was not that much medicine there was, but there was care. And I didn’t realize how much she had taught me that until I was a more seasoned physician that my grandmother had been so instrumental in me, understanding that care and medicine are two different things. Yeah, there’s medical care, but there’s just care.

[00:13:08] And I think sometimes when people are on the dying process, it’s care that we need not the medicine. Um, I hear it from many family members, but how can I not give a medicine if something’s treatable, but. The condition that we might be thinking about via pneumonia. For example, if the pneumonia is from living with dementia and at the end of dementia, the signals from the brain to the swallowing muscles are not getting through.

[00:13:38] It’s not because the muscles are not there to swallow, but the signals, the neurological signals aren’t evident that pneumonia is from that. Not from. Pneumonia per se, if the pneumonias will be repeated and repeated. So it’s better to care for the individual as a whole, knowing that if you treat this pneumonia, you’ll just prolong potentially their life or.

[00:14:01] Change their quality of life. A lot of studies out of, mostly out of Harvard Susan’s miss Mitchell’s group has done a lot in end stage dementia on what is appropriate care at the end of life. And it’s looked at things like hospitalizations, treating urinary tract infections, treating of pneumonia, and found that the quality of life in individuals who are treated medically versus those who are just cared for.

[00:14:25] Decreases compared to those who are just treated with care. And that’s, to me that just aligns perfectly what I’ve seen clinically from my practice. And I’m so happy that somebody has done the research on it so that we can comfort families and say, Nope, this is the right way forward. Just to back away from the hospital back away from excessive nutrient hydration, but sometimes hydration itself.

[00:14:52] Our bodies know how to die. They know to slow down, they know to sleep more. They know not to take in a lot of fluids because then they won’t choke on them. And so when we push things like fluids, at the point, when our bodies can’t take it anymore, we don’t die as comfortably. So a comfortable death is much easier if we just let the body do what it knows how to do.

Hanh Brown: [00:15:14] It’s tough. Whoever has to make that decision spouse, a loved one daughter or son.

Anne Kenny: [00:15:20] I hear you. Okay. It is probably most of us would make a decision for ourselves easily. But when it’s someone else, it’s probably one of the hardest things ever to do to make a decision because I’m one hand, you’re the daughter or you’re the spouse, or you’re the son, and this is a person you care for deeply.

[00:15:42] Or maybe someone you may not care for deeply, you resent either way. It’s a complicated, it can be very complicated. And then to have to make these life and death decisions. I’m used to that I’m in the healthcare field. I make those decisions, but when it was my mother, it was very difficult and I needed to.

[00:16:02] Develop a meditation practice. I needed to journal about it. I needed to realize that I needed to evolve into that decision as well. It took time. And that’s why I think the early discussions and the repeated discussions are so important because to articulate it and to almost speak it and see it out there in the world and then say, Does this resonate does what feels true?

[00:16:27] Again, another area that there’s a lot of stigma and shame, we don’t talk about death. We don’t talk about that. It might be better to let someone die. That almost seems. Inhumane, but it isn’t always inhumane sometime. It’s the most humane thing to do.

Hanh Brown: [00:16:44] We experienced that with my dad. My dad passed away about five years ago with the description that you share, it just fits. And my mom has a later stage of dementia right now, and that’s the reason, one of the reasons behind my drive in wanting to bring awareness and educate folks earlier on. And that learn about it in the midst of the crisis and having to make these decisions on top of layers and layers of emotions going on.

[00:17:15] So we both know how hard it is to make decisions for those diagnosed with dementia. So what would your advice be to people whose loved ones have dementia?

Anne Kenny: [00:17:26] So if you’re living with somebody who has dementia and you’re getting to the point, I might, my first advice would be to understand all the stages.

[00:17:35] Sometimes we don’t like to think about it until we’re ready to go into the next stage or kind of go into it. Reluctantly, but to understand the full course of the disease, I think helps us say, Oh, this is normal. What is happening? Because unlike a lot of things, it doesn’t March steadily it. There are good days and bad days.

[00:17:55] And you’re often second guessing yourself because if she could, if my mom could be smiling today, but sleep for the next three days, how do those align? But if more about dementia, that is the way that things can go like a stock market. But unfortunately not a good stock market when that’s going down, but there are good days and bad days.

[00:18:17] So I think first would be to understand the disease more, even the disease as it moves out in time. And then the second I think is to try to question yourself, what would you want? What would your wishes for an end of life choice be so that you can go through the idea of. What would it be like if I were living in her shoes and then once you’ve done that exercise then wonder, but what would the person I’m living?

[00:18:48] You see what you would think? And I did this with my siblings. There were six of us and I just asked what everybody, what everyone would want. And we sat there and heard each other and we heard how different the six of us were. And once we heard what we were like, Then we said, okay, what would mom want?

[00:19:10] And luckily she had spoken to me a bit, but I still, I kept my mouth shut so that I could hear how much we aligned on what we thought she would want. And we were much closer on what she would want. But the nice part of that was that we’ve understood where the other ones were coming from. So that we had more compassion for each other when somebody was having difficulty coming to a decision because there is no one right decision.

[00:19:36] But what I did want my family to know was at the end of the day, we would still be a family and my mother would be gone because there was no way she, there is no, um, here for dementia at this point. There’s all kinds of ways to live well with it. But once you turn that corner, there is no cure for it. And so we wanted to make sure that at the end of the day, we were still at.

[00:20:03] A tight knit family and not torn apart by it. That’s.

Hanh Brown: [00:20:06] so important because what you describe as family members sitting together, having that productive conversation so that their, each of their voice can be heard acknowledged. And, but ultimately, what would mom want? You’re a family of six, but imagine the more siblings that you have, the more input, the more complexities.

[00:20:28] And as you said, you can’t please, everybody. There’ll be folks that will be dissatisfied with the decision, whoever has that power of attorney. And I think the goal, like you said, mom, or dad’s going to be in a better place, but while the ones that are still on earth, we want to still have it in tech, a unified family, as much as they can.

[00:20:50] And at this moment it will either break you or keep you together right ?

Anne Kenny: [00:20:56] there. They can be. Uh, dark times. And sometimes even in my family, I would say there was a little bit of a, a rift and, and we were pretty tightly connected and the risk was more. I want to care for mom. No, I want to care for mom and who was better.

[00:21:15] It was better equipped to do that. And that took a couple of years after her passing for us to really get back together on that. But the nice thing is because we had been. At least openly communicating, we, those wounds healed as well. And we got to come back to realizing we both were doing the best we could at the time.

[00:21:39] Yeah. And again, those are experiences even as dark as they’ve may have been taught me so much about myself. And I think that’s what that does for us. Sometimes I’ve definitely changed my life because of my mother’s death. And mostly positive ways I would say so a lot of growth sometimes going through hardships.

[00:22:04] That crack in the vase, as they say, is the place to go grow.

Hanh Brown: [00:22:07] Yeah, absolutely. Tell us about your book, making tough decisions about end of life care and dementia. What inspire you to write this book, but share with us what.

Anne Kenny: [00:22:20] okay. The book is actually a lot about what we’ve been talking about today.

[00:22:25] It is a caregiver’s guide. It’s really not written for people living with dementia. It’s more written for people. Who are caring for somebody who is at the end of their life with dementia to help them understand. Some of the emotional pieces that we’ve been talking about, how difficult it can be to let go of someone you love so dearly yet, that might be the more humane thing to do.

[00:22:46] It is about the financial family interactions that may happen. Or if you have to make that decision all by yourself, where to go for support in that way, it’s about changes in housing that may come with advancing in dementia. There’s the legal aspects about the powers of attorney and it touches on a lot of the things you may or may not have seen in some of the books in around dementia about meaningful engagement or things like that.

[00:23:15] It’s not about the earlier the middle stages. This is about that shift in. How you shift from the medical aspects. It gives some advice on when it might be appropriate to take some medicines away so that that may be causing more trouble than good. It gives you a taste of what active dying looks like, because it is one of the biggest questions I get from family members.

[00:23:41] If I do this, if I choose to support my family member in leaving this planet. What will that look like? So there’s a chapter on what the last few weeks today’s look like because in this society, unlike a hundred years ago, we don’t usually, sometimes this would be the only death you ever see. And then there’s a little bit about how after you’ve been such, so involved in care, partnering, caregiving, what it’s like after that’s over.

[00:24:14] How, what that period right after someone dies and you’ve been so intimately involved in their care, what’s the emotional impact on you? I know that I, I actually thought about adopting a baby and my oldest son said to me, mom, I think you’ve just missed grandma. And I was like, Oh yeah, that’s probably it.

[00:24:35] I just, you know, to take some time and realize there’ll be a whole. Besides, besides the whole of missing the loved one, there’s a, there was a hole in one of my roles. I felt I put so much time and energy into caring for my mother. That that’s where the idea of a baby came up and he was like, maybe a dog or maybe.

Hanh Brown: [00:25:02] Oh my goodness.

Anne Kenny: [00:25:04] So it’s a little, it’s a lot of practical advice. Each chapter ends with. Things to consider other resources you might want to, if you want to do a deeper dive, but it’s really a lot about the emotional impact of making these decisions. It’s a bit much itself, but it’s a lot about the caregiver and the rollercoaster.

Hanh Brown: [00:25:27] it sounds like a, it’s a beautiful book. I’ll make sure I’m going to get it for myself and then I’ll make sure to send you one. Thank you.

[00:25:36] And I’ll make sure we’ll include that into the show notes too. And I wish that folks let’s say early or young baby boomers who have hair, perhaps that’s in their eighties, plus should take that book and just read it, learn and just be prepared and not be shameful of what’s on the horizon and be resilient.

[00:25:57] And like I said, I hate to use the word, but I’m using it because it fits. It’s a long goodbye. It is along the way. Be resilient, embrace every moment, be in the moment, celebrate it. Find a way to celebrate.

Anne Kenny: [00:26:12] Very tough to do. Some days easier than others. Absolutely. The book is full of stories of people that I’ve met.

[00:26:19] And it, and I have to say that one thing that made my journey with my mother easier is that I’d met all these people through the years. Some who have not handled the journey as well. And some that have handled it beautifully. But I had that experience. I knew that going through a beautifully was possible and knowing that.

[00:26:43] Helped me so much so that I always looked for the better way forward. And so that’s what the book tries to do is show you those stories so that those who are reading it can see that there are good ways forward as well. That it’s not all negative, but it can be very beautiful, not easy, but beautiful.

Hanh Brown: [00:27:04] And I think obviously I believe there’s more and more need for that.

[00:27:09] So that folks can embrace it.

Anne Kenny: [00:27:11] Yeah. I can’t say anything more. That’s

Hanh Brown: [00:27:13] everything that you’re writing about and sharing your journey. It speaks volumes. So thank you. Thank you so much.

Anne Kenny: [00:27:21] Thank you so much for what you’re doing for just the aging community at large. Your podcast is wonderful and it’s nice to see the positive and the real it’s really nice.

Hanh Brown: [00:27:34] Thank you. I appreciate what you’re doing for all of us out there.

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