Our Way of Caring: The Vantage Hospice Podcast [Episode 3] End-of-Life Nutrition with Our Dietitian

Navigating End-Of-Life Nutrition: Expert Insights from a Hospice Dietitian

In this insightful episode of the Vantage Hospice podcast, host Nicole Knight welcomes Kristen Schwab, a specialized hospice dietitian. Kristen discusses her transition from traditional dietetics to hospice care, sharing vital insights on end-of-life nutrition. The conversation covers topics such as 'pleasure feeding,' the use and limitations of PEG tubes, managing common issues like constipation, and debunking myths around dietary supplements. They also delve into the balance between diabetes management and comfort-focused care, emphasizing the importance of allowing patients to enjoy their favorite foods. Practical tips on fortifying meals, hydrating effectively, and adapting food textures to reduce aspiration risks are shared, alongside advice on identifying muscle wasting. This episode aims to provide caregivers with essential information and support to ensure comfort, peace, and nourishment for patients during their final stages of life.

00:00 Introduction to the Discussion

00:16 Kristen Schwab's Journey to Hospice Dietetics

00:47 The Role of Nutrition in Hospice Care

01:38 Tips for Families on Feeding Loved Ones

03:01 PEG Tubes and End-of-Life Decisions

04:12 Managing Swallowing Issues

05:45 Addressing Constipation in Hospice Patients

07:04 The Role of Vitamins and Supplements

08:02 Diabetes Management at the End of Life

09:36 Challenges of Feeding at the End of Life

11:31 Wound Care and Nutrition at End of Life

12:20 Encouraging Pleasure Feeding

13:31 Understanding the Dying Process

14:27 Managing Food Textures and Diets

19:18 Tube Feeding Decisions in Hospice

23:14 Supporting Families Through the Process

23:47 Conclusion and Final Thoughts

Vantage Hospice & Palliative Care

Our Mission

Vantage Hospice, LLC is dedicated to providing individualized hospice care with services specially tailored to the physical, social, psychological and spiritual needs of patients with life limiting illness, their families and the community, by delivering high quality and compassionate care.

We strive to create a culture dedicated to meeting the needs of our patients, families and employees based on the principles of dignity, respect and compassion.

Hospice recognizes dying as part of the normal process of living and focuses on maintaining the quality of remaining life. It affirms life and neither hastens nor postpones death through a multidisciplinary team approach. Hospice is not a place. It is philosophy.

Chapters

• 0:00 Introduction to the Discussion
• 0:16 Kristen Schwab's Journey to Hospice Dietetics
• 0:47 The Role of Nutrition in Hospice Care
• 1:38 Tips for Families on Feeding Loved Ones
• 3:01 PEG Tubes and End-of-Life Decisions
• 4:12 Managing Swallowing Issues
• 5:45 Addressing Constipation in Hospice Patients
• 7:04 The Role of Vitamins and Supplements
• 8:02 Diabetes Management at the End of Life
• 9:36 Challenges of Feeding at the End of Life
• 11:31 Wound Care and Nutrition at End of Life
• 12:20 Encouraging Pleasure Feeding
• 13:31 Understanding the Dying Process
• 14:27 Managing Food Textures and Diets
• 19:18 Tube Feeding Decisions in Hospice
• 23:14 Supporting Families Through the Process
• 23:47 Conclusion and Final Thoughts

Transcript

Nicole Knight: I'm Nicole Knight from Vantage Hospice. Today we have with us, Ms. Kristen Schwab, who is a dietitian, and we're going to talk about some things related to nutrition at the end of life, but just take a moment, introduce yourself

Kristen Schwab: so I've been a dietitian for a little bit over 18 years. I started out in a hospital like most dietitians do. Around 2013 I applied for a dietitian role with a hospice company. All of my dietitian friends thought I was crazy, and they did not understand where dietitians fit in with that 

Kristen Schwab: I did a lot of reading, and learned that there really wasn't a lot of dietitians out there, and decided to make it my mission to really support that patient. And so it is very different. We're not supporting kind of health and longevity. We're more supporting nourishing the soul. And it's very, it's become a very rewarding thing to work with hospice and helping families find [00:01:00] nourishment and just be at peace.

Kristen Schwab: Eating can be very overwhelming 

Nicole Knight: to 

Kristen Schwab: just us as regular day to day. So trying to feed your loved one when they're not. Feeling well, or they're struggling with texture. I find a lot of love and support from the families who really want to know about nutrition. And in return, that really fulfills me as a dietitian.

Kristen Schwab: Awesome. 

Nicole Knight: I think one of the hardest things when, when I was a case manager speaking with families is Just fighting against that urge it's ingrained in us that you have to eat that's the first thing we do when someone comes to our home.

Nicole Knight: It's the first thing that we do You know to make people feel loved if someone sees you Sick. We make them soup. We do all these things. So what do you, what are like some of your tips and tricks about helping a family deal with that?

Nicole Knight: If the family member is you know what, I just I can't eat. What type of things would you do?

Kristen Schwab: We definitely do a lot of education on pleasure feeding. We want to always be up front with our families and let them know that eating should be always a joyous [00:02:00] activity. We don't want to create any anxiety around food because when we're tense, we don't want to eat.

Kristen Schwab: So we really want to make it a relaxing situation. I love to interview families and the patients, see what they love to eat before they got sick. And then work with them on recipes and textures to figure out ways to make it easy to either swallow or to eat. Smoothies tend to work really well and finding fun recipes for families ensure is not always the most fun to want to consume and they've consumed a lot of that in the hospital.

Kristen Schwab: So finding some tricks of the trade for that and then really educating our families on every bite counts. So we do a lot of fortified meal planning with our families, meaning that we add lots of extra calories to the food items that they're already preparing. And that way only one or two bites could be the same as taking in a whole meal.

Kristen Schwab: And so it helps the family feel comfortable. It helps our loved ones feel comfortable and then hopefully continue to encourage them to eat a little bit every hour or two hours until at least they're [00:03:00] getting something in. 

Nicole Knight: So what do you think about G tubes and peg tubes at the end of life? Cause I know that's a really hot topic for hospice patients and families.

Nicole Knight: If they're not able to swallow what are your thoughts on peg tube feedings and getting the peg tube placed? 

Kristen Schwab: So we see a lot more peg tubes being placed in families going home with them. It is a personal decision. I always want to make sure that the family is aware there's no wrong or right answer.

Kristen Schwab: If their loved one would really like one, I would never say don't. I've learned through my years of hospice that shoulda, woulda, coulda creates anxiety. We want to let our families be in the driver's seat. I do always like to explain the pros and cons. Research has shown that feeding tubes do not prolong life.

Kristen Schwab: And they come with some good and bad. Some of the things I do let our families know is that aspiration, GI disturbances, and different things to that nature can cause some ill effects. And the point of hospice is always comfort and relief. But some [00:04:00] families want to try it. And So what I do is I try to get on their level and work with our families to make sure that they understand how to use feeding tubes and to know that they can always turn it off if need be.

Nicole Knight: So if a family decides not to do a PEG tube or a tube feeding situation, there are some, especially if they're having difficulty swallowing which is a, it's a risk. I know that a lot of families get very nervous about swallowing and, you those type of things. What would you do to minimize the risk of choking or swallowing issues or problems?

Kristen Schwab: So we look at it from both sides. I definitely work with our hospice teams to identify those medications that could create difficulty swallowing and increased dysphagia risk. And then working with the families, what food items do they really like to consume? Can we overcook them and mash them with a fork?

Kristen Schwab: Can we add things like gravy to make it a little bit easier to swallow? I get a lot of questions about thickener. And lately [00:05:00] research has shown that thickener in that population actually does a little bit more harm than good by causing dehydration, not allowing medications to work as effective as possible, and causing GI disturbance.

Kristen Schwab: And again, we want to outweigh the symptoms versus the relief. And so just helping families find textures that can meet the needs of the patient. And then also Also offering techniques. So chin tucks, making sure that the patient is sitting upright eating very small frequent meals so that there's not a fatigue and it helps to reduce aspiration.

Nicole Knight: Awesome. I think there's a lot of myths out there that people think of. I think research has proven that a lot of things that we used to focus on weren't always the best choice for our loved ones. One of the. biggest, I think symptoms that we deal with in hospice is constipation which nobody wants to talk about, but it's a, it, it really is a big deal with a hospice patient for a plethora of reasons.

Nicole Knight: Medications cause constipation, but also just the slowing [00:06:00] down of the GI also contribute to all that as well. So what can families and loved ones do, nutrition wise to help things, 

Kristen Schwab: So I love to do food first with our patients. And so I find that's very important.

Kristen Schwab: So we find food items that either are high in fiber or things that would help them relieve their constipation prior to the medications that they were on and coming onto hospice service. So I always offer things like apple juice, prunes, prune juice. Sometimes I'll offer a prune cocktail supplement to help them out.

Kristen Schwab: Some other tricks of the trader, we do hot to cold. So doing cold water, hot coffee, not only helps hydrate and With that, but also helps them to relieve their bowels because I know that sometimes drinking fiber and with Metamucil is not the most fun. 

Nicole Knight: It is not the best 

Kristen Schwab: appetizing. So sometimes also movement, just, massage and stimulation will help when we're on a lot of pain medication and kind of bed bound.

Kristen Schwab: It is hard to want to go to the restroom. 

Nicole Knight: Absolutely. [00:07:00] So just to segue into medications , every medication has a side effect. And we just talked about deprescribing medications in our last podcast and how important that part is, but what about vitamins?

Nicole Knight: Because, everybody loves their vitamins. So what are you, what are your thoughts on supplements? 

Kristen Schwab: So supplements are great For certain populations, and I highly encourage, especially if we have an active lifestyle, for our hospice patients, again, I really push food first. Because if we're filling our bellies with medication and vitamins, then there isn't any room for calories and all of those other great nutrients.

Nicole Knight: Can we say that one more time? Because that is the truest statement I've heard in a very long time. So that's awesome. I love that. 

Kristen Schwab: Yeah. I really try to work with families to help the, to help understand why they would like to push certain vitamins, vitamin D, vitamin C tend to be some of the ones that come up the most.

Kristen Schwab: And then I offer them a list of food suggestions that are high in those vitamins so that they can not only get calories in, but also get the vitamins that they want. Plus, it saves a little bit of money, [00:08:00] right? They are 

Nicole Knight: very expensive. What about diabetic medications?

Nicole Knight: Because I know that's also one of the things towards the end of life. The focus on diabetic management is it's a huge topic. Because you've been doing this your, whole life or, for the past 20 years, managing your diabetes and making sure everything was perfect, and now we're at a point where, I always say this.

Nicole Knight: If I'm on hospice and I want to eat chocolate cake in the morning, I'm going to eat chocolate cake in the morning. That's my philosophy for that, but, what are your thoughts on managing diabetes at the end of life? 

Kristen Schwab: For most of our patients and this is very particular to each individual patient, I definitely will meet with the physician but elevated blood sugars are not going to cause diabetes.

Kristen Schwab: longevity symptoms. So if we can reduce a lot of the medication, we will try to we really try to manage as whole as hospice is signs and symptoms. And so doing that too with diabetes pricking somebody's finger three times a day to have a [00:09:00] blood sugar of one 50, isn't always the most appropriate.

Kristen Schwab: And it sometimes reduces the patient's ability to eat and want to eat. So we want to get as much food in it for as long as possible, because we know that will decline over time. And so again, helping families just be educated when blood sugar is really elevated, as long as they're not having profuse sweating, confusion and different things like that, it's okay to have elevated blood sugar.

Kristen Schwab: For those patients, especially as the P. O. Intake declines. We never want the blood sugar to be too low. That creates a much more traumatic event for not only the family, but the patient 

Nicole Knight: agreed 100 percent agree on that. So going back a little bit, we had talked about just the challenges of feeding and eating at the end of life.

Nicole Knight: And I one of the analogies that I used with families quite a bit is, if you can imagine eating a huge Thanksgiving meal. And someone comes in right behind you and says, we're going to eat again. That feeling of where the patient wants to. Please you and make sure that they're trying to do everything they [00:10:00] can to eat and, make sure they're eating properly.

Nicole Knight: But physically just can't. So we talked just a little bit about fortifying each bite, which I think is really important. So it's important to know that, like you said, you can add stuff to. meals and things or to smoothies or whatever that can really increase that caloric intake, which I think is more important than volume, right?

Kristen Schwab: Definitely. Definitely. So some of the tricks that I use is height, while hydration is possible using juices and different things, it's easier to drink than it is to eat. Ah, good 

Nicole Knight: point. 

Kristen Schwab: And so it's still hydrating while also getting calories in and really focusing on not how large the meal is, but how frequent.

Kristen Schwab: the patient is consuming. So making sure that they're at least trying to eat one or two bites every moment that they're awake. Cause as we know, our patients tend to start to sleep more and more. And so we want to capitalize on just getting those bites in. We know that nutrition isn't going to prolong life, but we do want to just make sure that the patient doesn't [00:11:00] have a feeling of hunger.

Nicole Knight: I think one of the difficult things about hospice and trying to shift your way of thinking from that curative, aggressive, we've got to do all of these things and check all these boxes to a more kind of laid back approach, right? So we're just looking to see what feels good.

Nicole Knight: So my philosophy on hospice and eating is if you want to eat it, if you don't, that has always been my philosophy. But a lot of our patients and families are coming from aggressive hospital based system. So when they're going home, they're used to hearing like wound care, for example, like you got to eat your, all your protein and you got to eat, you got to use zinc and you got to do all these things.

Nicole Knight: What are your thoughts on wound care and nutrition towards the end of life? 

Kristen Schwab: I know that we push a lot of protein for wounds and that's definitely out there in the media. What we've seen is just eating in general. Is better than nothing. Carbohydrates tend to digest a little bit faster than protein.

Kristen Schwab: And so we want the patient to feel hungry a little bit more frequently. So we [00:12:00] don't want to overload the system so that they do go a really prolonged period. We always want to encourage a little bit of protein, of course, but really, I always, it's one of my joyous things to be able to tell a patient that they can't eat chocolate cake for breakfast and see their eyes light up because their whole life they've heard fruits and vegetables or 

Nicole Knight: no salt.

Nicole Knight: That was the other thing. 

Kristen Schwab: No salt. The one great thing about, 

Kristen Schwab: Reaching that part of their journey in life is being able to give them the freedom to really it's really about pleasure feeding at the end of the day, we want them to be happy and we want them to be relaxed because we noticed that our patients tend to eat a lot better when they are comfortable.

Kristen Schwab: And so that's the main thing is really just to encourage pleasure. 

Nicole Knight: Exactly. I think also an important thing to, to remember with, especially with nutrition is. There's no right or wrong, like you had said earlier, like you can't, you can't really do it wrong, right? 

Kristen Schwab: Not really. The only thing that we really encourage is if their loved ones do start to choke or cough while consuming meals, the family just takes a break [00:13:00] anywhere from 15 minutes to an hour.

Kristen Schwab: We can always restart the feeding process. We never want them to ever feel like they're grasping for air. But other than that, it's really about pleasure. And I can't stress that enough for families, finding things that their loved ones like to eat. It's okay to have a blood sugar of 500.

Kristen Schwab: It's real, they're not gonna develop certain diabetes issues when they reach that spot. And if chocolate cake makes them happy, by all means. 

Nicole Knight: Let them have it. Chocolate cake and ice cream.

Nicole Knight: So one of the things, other things that we wanted to discuss a little bit is about how dying is a process and that process may begin, up to, 12 months before, you actually see some tangible signs of, oh my gosh, death is imminent, or we're actually at a point of no return.

Nicole Knight: So what type of things are they looking for and like the difference between just muscle wasting and atrophy, or is it truly weight loss? And how do you determine the difference between those [00:14:00] two? 

Kristen Schwab: So we always look for muscle wasting in the temporal of the head, in the head, neck and shoulders. Typically as our patients become less mobile and more bed bound, it's really more of just atrophy and not always weight loss. A good sign is sometimes how our clothes feel.

Kristen Schwab: fit. And one of the things that we always look for too is how the dentures fit. As the body starts to lose weight, our dentures tend to get looser and looser. And so that sometimes makes it even harder to eat. 

Nicole Knight: Absolutely.

Kristen Schwab: So some of the things that we do is we encourage the families just to remove the dentures and do gum strengthening exercises if they do choose to stay on a regular diet. But if that is too painful for the patient or the family wants alternative, then we go through different types and textures.

Kristen Schwab: So the first one we start off with is mechanical soft, and I typically describe this as using more ground types of meats. You can easily put them in a blender. Overcooking our vegetables so that when they put it on a plate they can use the fork to press onto the plate and mash, mash the [00:15:00] item.

Kristen Schwab: We also talk to them about maybe not using harder foods to chew, like bread, lettuce, or rice. And then adding gravies or cheeses, which also add calories, but help the item to stick together so that they can masticate and be able to swallow. If the patient is still not tolerating mechanical soft, then we encourage them to go to pureed.

Kristen Schwab: And pureed is not the most fun for everybody because it does look like baby food and nobody wants to eat baby food, but pureeing may be an important part to reduce aspiration and help our loved ones eat. So just educating them on how to blender rice foods, making sure they use milk or juice or broth in the pureeing process instead of water so they don't dilute the food.

Kristen Schwab: Oh, good point. And reduce the calorie intake. They can also add oils and fats to it while they're making the puree. And that just again helps to fortify the meals and make every bite count because it is sometimes really hard to consume, especially when we're not feeling well. 

Nicole Knight: How do you know when we're at a point, in the [00:16:00] process where it's either no longer safe or effective to continue to try to feed like food like maybe solid foods or how do you determine, going back to the different diets, is that something that you would determine?

Nicole Knight: The nurse would determine how does that work? 

Kristen Schwab: So I always start with any patients that I'm consulted to see because they do get a lot of questions about if the patient stops eating, it's starvation. And I do encourage them that it's not starvation. We have a mechanism in all of us as we start to transition and especially towards the very end of, I always call it our journey.

Kristen Schwab: That the body has this way of becoming in a ketotic state, which is a little bit different than our ketotic or keto diets for you and I, but the body will know when it's time to stop feeding. And so we start to see our GI tract start to shut down. We really start to see the patient. shying away from food, not opening the mouth at all to allow our loved [00:17:00] ones to, to help feed them.

Kristen Schwab: And so at that point, I really just encourage the family to be patient with the loved one. It tends to take a lot harder toll on the caregiver than it does on the patient. And so really helping the family to understand that this is all part of the dying process and that this is natural. I tend tends to really help.

Kristen Schwab: Now, if the patient is severely choking, we do try to do as much with texture altering as possible. But again, we always wanna give the patient that, right? And just let them understand that aspiration may lead to other symptoms and it is their choice, 

Nicole Knight: right? So I think one of the other interesting things is the effect of texture at the end of life.

Nicole Knight: So I don't know if anybody listening has a texture issue or aversion, but towards the end of life, little things like in the mouth that would have not been a problem before may make someone nauseous. So how do you get around those types of problems? 

Kristen Schwab: So really taking a food preference from the family, seeing what signs and symptoms that the [00:18:00] patient has when they do eat certain food, they definitely take that in account.

Kristen Schwab: As they do get towards end of life, chewing does become very difficult and it becomes an incredibly fatiguing task that they do multiple times a day to really encouraging lots of beverage like items, cream soup, smoothies, juices, those kind of things are really important and become very valuable in the diet and helps to reduce fatigue so that they are ready to eat again.

Nicole Knight: So what would you say to a family member that feels like I've got to feed mom because she hasn't eaten in two days. And if I don't feed her, then I'm starving her. What do you say in those situations to families? We 

Kristen Schwab: want them to feel comfortable. And so really working with the family to see what items they think that they might want to try.

Kristen Schwab: And then just encouraging that one to two bites is really a great achievement for them and that they don't really have to eat that full meal and just really explaining to them that this is all a part of the process and just really holding their [00:19:00] hands. I know in hospice, that's one of the things that the collective team does together.

Kristen Schwab: is to really hold the caregiver's hand through the process because it is very difficult. Nobody wants to lose a loved one. And we want to make them feel as comfortable with the passing as possible. 

Nicole Knight: There's a lot, there's a lot of emotion tied to a tube feeding.

Nicole Knight: Because one of the things I used to say when I was a case manager, which I'm not anymore, but I used to be a case manager for a very long time, is, One of the things about tube feedings is once you stop them, it's really hard to stop them. Not pushing the button and saying no more, but emotionally and just surrounding that whole decision making process.

Nicole Knight: It's hard sometimes for a loved one to say, we're just going to stop it. So what type of things do we do in hospice to encourage people to make those decisions when they need to. 

Kristen Schwab: So I love to do tube feeding education as all dieticians do. And so we start, I usually start with what is their current regiment?

Kristen Schwab: What [00:20:00] did they love and hate about what they were currently doing? Or do they know anything? Did they receive the tube? And three days later, they were sent home, which happens quite a bit. And now on hospice and now. All they can focus in on is 1500 calories, and they don't quite understand what that means, and so really providing education letting them know the different techniques of two feeding, so it could be that they bolus feeding meaning that They take the carton and they pour it through the syringe directly into the belly and letting them know the pros and cons.

Kristen Schwab: And then they can gradually do other different things like gravy feed or pump feeding. Some of our patients really should be on pump. Tube feeding for a little bit because putting large amounts of formula in the belly at one time do cause aspiration. But really helping the family to understand the signs and symptoms of intolerance of tube feeding.

Kristen Schwab: I always say just because you can doesn't mean you should. 

Kristen Schwab: Just because we can put formula into the tube, sometimes the risk outweighs the benefit. Helping them understand. If the patient [00:21:00] starts to gurgle or wheeze, that they're really not digesting, that the formula is sitting in the chest making sure that they check the residuals.

Kristen Schwab: So if they put formula in the belly and, Two hours later, they can draw back up through the PEG tube the same amount of formula. It just means that the body has stopped Digesting and is rejecting it. And so we always want to encourage our family members to reduce aspiration as much as possible Because nobody ever wants to have air starvation It is very traumatic for the patient and for the loved ones to watch And so really a lot of what I like to do is help wean the patient down and show them that it is okay.

Kristen Schwab: Just as if the patient was eating by mouth and their appetite decreases, the same thing can occur with tube feeding patients as well. 

Nicole Knight: I think one of the interesting things because, Like you said, usually they'll get the peg tube in the hospital and they're sent home three days later with not a whole lot of education about what this whole thing means.

Nicole Knight: So all they know is in the [00:22:00] hospital, mom was on the pump 24 hours a day, which may not be the best thing. In the long run for a patient, especially, someone that's on hospice. And I used to, I say this all the time now, we don't eat 24 hours a day. So to have something going into the belly 24 hours a day and just pumping in there is not always the best idea either.

Nicole Knight: So talking about weaning down, how do you do that? 

Kristen Schwab: I always try to, I always try to lend our two feeding schedules to our caregiver schedules. Good idea. Caregiver fatigue is a very big thing. Yes. And so having a pump be turned off and on at four o'clock in the morning may not be the best for anybody.

Kristen Schwab: Agreed. Slowly decreasing their rate. Is a great way to wean and showing that it is okay to wean and that your loved one isn't starving to death immediately helping them to understand as the patient begins to sleep more and they transition from an eight hour sleep to 12 to 16 hours, that maybe they just don't need as many calories.

Kristen Schwab: Can reduction [00:23:00] is also a really good thing because it's hard to understand how many calories are in each can, really having them, it's again, really looking for signs and symptoms is the biggest thing and really encouraging the family that this is an okay process. 

Nicole Knight: That's a hard one.

Nicole Knight: That's, that really is the, at the crux of everything that we do is making sure that patients and families and everyone involved really is, are comfortable with, what's happening and knowing what's coming next and preparing them for what's coming next. 

Kristen Schwab: So I'd love to educate my families as much as possible.

Kristen Schwab: And I feel like giving them the ability to make choices and placing them in the driver's seat really helps to make them a lot more comfortable and reduces anxiety for everybody that's involved in the situation. So we tend to be able to do a little bit more with our families.

Nicole Knight: Awesome. Thank you so much for joining us today. 

Nicole Knight: I think it's important to note that, you are a vital member of the team especially in the hospice.

Nicole Knight: arena. And I think a lot of times people don't put a lot of emphasis [00:24:00] on dietitians and what they have to offer. And it's just, it's amazing just being, just to sit here and watch and listen to you talk about all the things that like as a nurse, I thought I knew, but then hearing you say it just makes a lot more sense.

Nicole Knight: So just so everybody knows Kristen is. contracted with vantage hospice and I mean is available to, to service our patients. So we're very excited and glad that she's here with us.

Nicole Knight: So thank you so much for joining us today. 

Kristen Schwab: Thank you for having me.