October 3, 2023
Nutrition in Hospice Care
Dr. Thomas Mouser, MD, is chief medical director with EveryStep. He is dually board certified in internal medicine and palliative care, having completed his residency at University of Iowa – Des Moines and a fellowship at Stanford University. Dr. Mouser has spent countless hours at the bedside of those with serious illness and chronic disease. In his role, he helps hospice, home care and palliative care patients and their families navigate complex medical decisions as guided by the patient’s goals of care. Dr. Mouser’s fellowship training provided for an expertise in advanced symptom management and communication when working with those with high burdens of suffering. He is passionate about helping his patients reach their best quality of life so they can live life to the fullest.
Q: My loved one is receiving hospice care. Should I be worried they don’t seem to be hungry or eating enough?
Dr. Mouser: This issue comes up multiple times a day in my work. I think the thing that causes the most distress is the sense of showing love and nurturing somebody through food. It's been ingrained in us from an early age. Every single time I was sick as a child, my mom would always make me Jello or soup, anything to keep me eating. The reason that we do that for our loved ones is because when we are ill, we often are still hungry.
But when our bodies are ill and using energy to fight an infection, or maybe cancer or a chronic disease, they don't want to use all the energy it takes to digest food. Hunger tends to wane, and though the instinct is to encourage eating, in an end-of-life scenario, that can backfire. The body may not be able to process food, and food can potentially even cause problems.
Q: Would it help if my loved one was given medication to stimulate hunger?
Dr. Mouser: We encourage families not to put a lot of pressure on their loved one to eat. There are some medications that we sometimes try, but in my experience, it is extremely rare that those medications work. Often when we use medications, we either just fail or end up with unintended side effects, so typically my recommendation is to allow the body to set the tone.
Q: How do fluids play a role in hospice care?
Dr. Mouser: Fluids are associated with the most basic needs when somebody is sick. But the reality is that many, many times, those fluids backfire. When a body is sick, the kidneys aren't working as well, so they're not able to get rid of that fluid as easily. The heart often starts having more trouble with those larger blood volumes and pressures, which makes it critical that we pay attention. In giving too much fluid with intent to help, we can cause harm. Often, we not only don't want to give more fluids, but we want to get rid of some of that excess fluid because it helps them feel better. Being mindful of how important and critical it is to keep fluids balanced is important.
Q: What about feeding tubes and other means of nutrition?
Dr. Mouser: There is a time and place for feeding tubes, but most every time, it's a situation where somebody has an illness that we think is time limited and we want to sustain nutrition until their body recovers and can function. An example of that would be somebody who has a surgery and are slow to be able to eat again because of weakness from being debilitated. So, we supplement with the feeding tube. A lot of people who are on a feeding tube long-term don't really derive a lot of comfort or satiety from it. In fact, a lot of them want the tube out and would rather nibble on bites or sips of food and fluid for pleasure. Ultimately the tubes don't bridge people to a benefit when it's in an end-of-life scenario because typically when somebody is in hospice care, we know their body is going to continue to decline towards end of life.
Q: What if my loved one in hospice is not supposed to be eating solid food, but is requesting a favorite item?
Dr. Mouser: It's very common for people to come to us with the term NPO, “nothing by mouth”, where they're not being allowed to eat and feeding tubes have been discussed. When somebody is listed as NPO it can lead to discussions about quality of living. If I'm hungry for something and you're not allowing me to even try because of the risk, that doesn't make a lot of sense. So, what we often will do in hospice is talk to them about ways to reduce the risk of choking. Tucking their chin when they swallow. Trying foods that are maybe a little bit less likely to be aspirated. Things that they can handle. Going low and slow and trying things so that we allow for the autonomy of trying and choosing to eat things that bring them joy. Many times, they don't take that many bites because they literally aren't that hungry. But it's wonderful to have that one bite of pizza or whatever it is that that they're wanting. Ultimately, we balance that desire and those goals of autonomy with the risks. It's about the whole person, not just about the disease state.
EveryStep Hospice is Iowa's oldest and largest non-profit, community-based hospice provider. Since launching our hospice program in 1978, thousands of Iowans have turned to us to find comfort and care when they needed it most. You can find EveryStep Hospice programs based in Centerville, Council Bluffs, Des Moines, Mount Ayr, Mount Pleasant, Osceola and Winterset. When a patient needs around-the-clock hospice care, EveryStep Hospice’s Kavanagh House in Des Moines is available. Kavanagh House provides a home-like atmosphere with private bedrooms, living rooms, a family kitchen, spa room, children's play areas and other family amenities. Learn more about EveryStep Hospice.
If you or someone you know is struggling to find the support they need, please contact EveryStep at 515-558-9946. Or complete the commitment-free, confidential “Find Care.” EveryStep staff will follow up with a phone call to answer your questions and provide assistance.