In this insightful episode, Dr. Rachel Jordan is joined by Dr. Sonja Richmond, a hospice and palliative care expert, to explore the sensitive but critical topic of hydration and nutrition at the end of life. They discuss how families and caregivers can navigate the complexities of providing care while focusing on comfort rather than the traditional goals of nutrition and hydration.
Introduction
Dr. Rachel Jordan:
Welcome to our podcast. Today we’re discussing a sensitive but essential topic hydration and nutrition at the end of life and how families can navigate the topic while sustaining comfort.
Joining us is Doctor Sonja Richman, a specialist in hospice and palliative care who serves as the vice president of medical affairs and hospice medical director at hospice of the Chesapeake. So, thank you for being here.
Dr. Sonja Richmond:
Thank you, Doctor Jordan.
Dr. Rachel Jordan:
This is you know, this is such an important topic. We oftentimes talk to families and they’re and caregivers and loved ones. And you know, they’re at an impasse. They’re at a bridge to feed to to give I.V. fluid or not. And sometimes, it’s a little bit of a challenge to explain the complexities that go behind some of the things that we do at end of life. So let’s talk about the importance of hydration and nutrition. To start, can you explain why hydration and nutrition are critical at the end of life?
Dr. Sonja Richmond:
It’s as you said, it’s highly complex and people are at an impasse. Food is life. Life is food. Hydration and nutrition as you approach, the end of life takes on a different role. Oftentimes we associate food with family, with love, with warmth, and with giving and when we are not able to do that, when we care for someone, we have our own internal struggles, much less the struggles that our loved one who is approaching end of life is encountered.
Food and nutrition and hydration take on a different role because as the body is turning off is what I would say and turning down the lights and dimming the lights. It takes on a new approach in its vision of food and nutrition, where it’s not a priority anymore. The body’s getting ready to turn the lights off, and in doing so the necessity for food and nutrition and hydration changes. And when we impact that, when we affect that natural trajectory of decline, sometimes we may bring about untoward effects, the burden of the body having to digest and metabolize this food burden or this fluid burden when the body is no longer in that high metabolic state. And then you deal with left over, you deal with the burden of how to navigate this nutrition and this fluid in this food.
Where can it go? Yeah. And what does the body do? You know, where does it happen. How do we process it.
Dr. Rachel Jordan:
What are some concerns families have regarding hydration and nutrition for their loved one? At this stage, you know, they’re at the stage where they’re not eating or drinking the traditional way. And, you know, it bothers me more to see them not eat because I have the desire to eat and drink, but the patient does not.
Dr. Sonja Richmond:
The patient has lost that desire. And we see that often with our patients who are affected by dementia. The moderate stages of dementia, the later stages of the early dementia where food doesn’t have this, this, central, central world, especially with someone dealing with dementia, they’ve lost the connection of hunger and eating and food. And it’s understanding that and leaning into it.
But as a health care provider, I too have to look through the lens of the caregiver. What am I supposed to do now if I can’t feed my mom or dad? How else can I demonstrate love? And that’s when I share the act of touch. The act of speaking, listening to music. So, finding other ways to engage that may not necessarily include the food and understanding that you may be starving, but your loved one is in a different stage and journey at this point, and the food and hydration itself may actually be a burden for your life.
Dr. Rachel Jordan:
So important because there are so many cultures where the center of the family, especially for events and celebrations and maybe even grieving sad times is centered around food. Right. And so now you’re telling me the one thing that I know that we do when we convene, or we gather doesn’t apply here because the body is not wanting this. Sometimes that’s a little bit of a struggle.
Dr. Sonja Richmond:
It is. And it’s not a onetime conversation. And this is why it’s so important to speak about goals of care, to include the family members and other health care providers in the plan of care. Having advanced care planning so that we can begin the conversation soon, so that we have the conversations over and over again so that we create a safe environment.
The questions and the frustrations are shared with us so that we can guide the loved one in caring for their family member at the end of life. Absolutely.
Dr. Rachel Jordan:
Let’s talk about some of the signs of dehydration and malnutrition. You know, maybe we have a patient who, you know, they have dementia and maybe they need a reminder to eat and drink. They can still do it, but they just are very forgetful. You know, if I’m caring for my honor, my grandmother and they have dementia, what are some of the things that you would tell me as a caregiver to look for that may indicate, you know what, we’re not meeting the nutritional domain. We’re not hydrating. What are some of those things?
Dr. Sonja Richmond:
The first thing I would do is I would recommend engaging with meals when my loved one is most alert and awake and responsive. Aspiration is key. Aspiration is absolutely dangerous. And it can actually, impact in ways of ending up in the hospital and aspiration meaning. Oh, so this is when the food products or the fluid products go down the wrong pipe. There are two competing pipes. One pipe may lead down to the digestive tract, esophagus to stomach. The other pipe leads down into the lungs which pipe is where is the food going to go? We find that many people who have advanced dementia advancing dementia. There is a pathology in the oral pharyngeal phase in the ability to chew, swallow and that food to go down the correct pipe.
Feeding with my loved one is most awake, alert and responsive. Small bites meeting the meal. Consistency. And when I say consistency, some have to engage in putting foods. Some have to engage in short meets. You have to meet your loved one where they are. The other thing to consider is how is my loved one evacuating? How many bowel movements are we noticing? Is the abdomen getting larger and how many times are we noticing a wet diaper? Or is our loved one going and having a urine output? Those are signs of are you getting enough volume and fluids?
Yeah, it’s really, really challenging to keep up with someone, especially if you don’t have the opportunity to be there 24/7. Because as our loved one is navigating through their own dementia, the need and the necessity and the desire to eat may come at different times that don’t that don’t include they don’t correlate with my schedule, lunch or dinner.
Dr. Rachel Jordan:
Right? Right.
Dr. Sonja Richmond:
But a subtle sign to look and see if my loved one is not getting adequate nutrition is what’s how frequent are they making urine output?
Dr. Rachel Jordan:
Yeah. And you touched on this. You know, we’ve often said in the podcast series that everybody’s journey is different. And so, you’ve talked about individualizing the plan of care for each patient.
Based on the type of consistency of food. Is it pureed? Is it thickened and is it minced meat. Right. So, looking at their needs, looking at what they can handle as a medical provider. We oftentimes can say, you know what? I don’t think they can have regular consistency food. Let’s go ahead and change their diet texture.
You know, sometimes they’ve lost teeth. You know, the bone loss with dementia, the weight loss. They can’t put their dentures in. So now we have to switch the diet. Their liquids maybe. I can’t give them thin liquids. Maybe I have to thicken their liquids so that it goes down a little bit slower. So then go down the wrong pipe.
Right. So, you really touched on individualizing, the plan of care to meet a patient’s nutritional needs. And that’s really important. And understanding that it can change over time. Right. So, you know, how does hospice care address hydration and nutrition? Because again, it’s different for every patient. Very different.
Dr. Sonja Richmond:
And it’s a huge topic. And it’s not one that can be accomplished in one sitting. It’s meeting the patient where they are. Yeah. Not necessarily a loved one. It’s education for the loved one. It’s empowering the loved one. And it’s also looking for other ways to provide care and comfort that may not necessarily include hydration and food, because that very hydration and food may actually be a burden for the loved one that may harm them.
Finding that middle ground. And so, you sit down, and you have this conversation. Some people desire a feeding to, sometimes called a tube. That tube is never intended to be a permanent fixture in our lives. It was always to be a temporary or transition. But as we’ve evolved in health care of, we’ve involved in, in, our intervention and care for people.
Many have this feeding tube understanding that you can still aspirate, or the food products can regurgitate and end up down the wrong pipe, understanding that there’s a digestion component. You’re feeding through the tube, you’re no longer utilizing the mouth, which it’s not natural source, and you have bowel irregularity. Stools can become liquid formed hard not consistent. You have the issues of fluid overload where you cannot move the fluid that you’re engaged with because the focus is feeding, feeding, feeding.
But where does quality fit in? Right. Where discomfort fit in. And sometimes pulling back is when you pour in the comfort.
Dr. Rachel Jordan:
Yeah. And that’s where you, you really tune into the conversation with your medical provider. When you look at the risk versus the benefits, you know, what are the risks associated with placing a feeding tube? It’s uncomfortable. There’s a possibility that because your loved one is confused, they may pull it out, right?
You know, I’ve seen in stage dementia patients they can become very strong, and they can pull it out. Yeah. It’s a tubing that’s on you.
Dr. Sonja Richmond:
Yeah. And you don’t realize. Yeah. I think about people and families who want IV fluids and that’s become quite custom, not just. Can’t you just keep giving him fluids? He’s not eating or drinking.
And I often answer the question with a question. One is, would your loved one want this to is where’s the end point? Yeah, your loved one is showing us that eating and drinking is not the forefront for them right now. They’re in a comfort care approach approaching end of life. The continuous fluid is serving you. What is the purpose that we’re serving?
And oftentimes that fluid ends up in places that it that it in the lungs, the tissue everywhere, the puffiness bringing it back to quality of life, comfort, care.
Dr. Rachel Jordan:
And that’s why it’s so important that, you know, patients and their caregivers have that trusting relationship, that that connection. And it’s not just the medical provider could be the social worker. It could be the chaplain, could be the home health aide that’s coming in. And we’re building this rapport. Right. And they understand and they trust that we’re here for their best interest in the patient’s best interest. And it’s the partnership, the open dialog.
Dr. Sonja Richmond:
And it’s understanding that nutrition and feeding is not just a medical component. There’s psychosocial. Absolutely psychosocial component. It isn’t a prescription. It is an up until there is an emotion around it. And it’s important to honor that emotion and to walk together through that change.
Dr. Rachel Jordan:
Absolutely. Well, this has been really insightful, and I hope that this podcast is helpful to our listeners, especially as they meet that bridge, where they start considering artificial nutrition and hydration and, and how they can best support their loved ones.
Thank you again, Doctor Richmond, for being here. I hope this episode provided valuable information on hydration and nutrition at the end of life. And as always, our listeners can go to Hospice chesapeake.org to look at our resources and review and share this podcast as much as possible.
Dr. Sonja Richmond:
Absolutely. Thank you again for having me. All right. Thank you.
Please go to our website. Please engage with the resources. I would say use it every day. It’s impactful. It’s important. And it’s focused on quality of life.
Dr. Rachel Jordan:
I couldn’t agree more. Thank you. Thank you.
