A Deeper Look at Nutrition in Hospice Care

Nutrition in Hospice Care

In our society, there are a lot of pre-conceived notions about hospice care. Often those presumptions stigmatize the core intention of hospice and prevent patients and families from taking full advantage of the services available, sooner rather than later. To provide our community with an in-depth look of the core values of hospice, we have decided to create a series featuring the pillars of hospice. For our third installment, we spoke with Steffanie Blais, RD, to learn more about her role in the hospice experience as a dietitian and the significance to both the patient and the family during this challenging, transitional time of life.

What is the significance of your role as a hospice dietitian in relation to the rest of the interdisciplinary team regarding the patient’s overall care?
A big part of what I do is help patients and families understand what the end of life eating process is all about. I spend a lot of time talking to people about what the body starts to go through during end of life, how the systems start to shutdown naturally, and how when we force feed or force fluids at that time, we’re actually putting that patient in a lot of pain—we start hurting them rather than helping them. It can be a difficult reality for people to understand because we share love with food—for most of our life, that’s what we’ve been taught. People feel powerless when their loved one is progressing towards the end of life, they want to feed them and show love that way, so it can be difficult. That’s probably the biggest significance I put in as a team member and I work really closely with the nurses and together we can usually get people on the same page. Food can be such an emotional topic anyway, it can be really triggering, but we’re here to help the families understand how much better this will be for their loved ones in the long run. The patient isn’t perceiving their hunger and the thirst like you and I would, so it usually takes lots of education, some finesse, and time.

What is your approach to teaching patients and families what this change will look like or how it’s going to evolve over the time they’re on hospice?
I try to prepare them by letting them know the ways in which their loved one can or might progress, so they are aware of the possibilities. I work with the families to understand what swallowing decline might look like and when it’s time to talk about the types of foods that they’re eating and their textures. I explain it very anatomically and work closely with the nurses. Towards the end, as the systems start shutting down, our stomach isn’t working the way it’s use to, the peristalsis or how food is moving through the system isn’t working the way that it used to. Explaining that shutting down process, which is not unique to humans, for instance our pets go through the same processes at the end of life, is very helpful. The phrase “this is what we might see happen and these are the steps we will take if it does” helps to ensure that they’re aware of what it’ll look like before it happens so that together we can help this person progress with as much dignity and as much love as possible.

What is the impact of nutrition in hospice care on the families and patients’ experience on service?
Sometime as much as food can help keep people together and can make people feel like they’re helping, it can also cause a wedge. I had a patient one time, who was drinking smoothies and eating foods that his wife thought would be good for him—she was interested in what was going to help him. He wasn’t in that place, and I could tell that he wasn’t in that place, but he didn’t want to hurt her feelings or make her feel bad. So, he was forcing himself to eat these things she was making, and he was really nauseous and was having all these problems. When his wife got up to go answer the door I just asked him “If you had your way, what would you eat in the morning?” He responded “Well, I don’t know, maybe just a small piece of pie or something.” His wife came back, and I told her that we were just talking and he’d really love a piece of pie for breakfast. She looked at me like “is that okay?” Sometimes people just want that validation that it’s okay. I said “Of course! I don’t care if he eats pie and ice cream for breakfast every day. That’s not where we’re at right now.” He just lit up and you could see them come to that mutual understanding and tell that their quality of life was going to be better.
Some of these older hospice patients grew up in a time where the women didn’t complain, it was their job to run the family and do all these things and sometimes it can be like pulling teeth trying to get them to be honest with me. Are you happy with this? Are you really fine? The men too, they don’t want to hurt anyone’s feelings, it can be hard just trying to get them to be honest about what they want and need.

You mentioned how your role works in tandem with the nurses. Are there any other ways in which your role intersects with other members of the interdisciplinary team?
Probably social work. A lot of times we come together to figure out how to get the patient good nutrition or they see things that they need to tell me about, and also the Home Health Aides. Our HHAs are so amazing and they’re a huge part of the team because they’re with the patient and their family so much more than everyone else and I get so much information from our HHAs because they’ll know a lot of information and a lot of the time people aren’t as honest with the dietitian. I’ve also gone in at the same time with Chris, one of our hospice musicians, and sang with him, or with Berkeley, one of our spiritual counselors, and prayed with him, but I probably primarily overlap with the nurses, social workers, and the aides.

How did you start working in hospice care as a dietitian?
I went through Cal Poly’s internship program to become a Registered Dietitian, I was pregnant at the time, and I wasn’t sure what I wanted to do, but I knew whatever I was going to do was going to need to be flexible with my family life. Therefore, I was looking at hospitals and long-term care because those places were going to be a little more conducive to working while raising a family. I ended up working in long-term care, which worked out great for me. Then one of the preceptors from my internship, who I had stayed in touch with had been with hospice for like 15 years, called me out of the blue and asked if I’d consider coming to work for hospice because they were going to be having an opening. I really did like my hospice rotation during my internship, and I thought it would be a really good fit for me in my career. So that’s how I got introduced to hospice and I love it, it is so rewarding to me! I can’t even imagine doing something else right now.

In addition to working with hospice, you also work with our home health patients. What are the differences in care between home health & hospice?
Home health has a totally different focus than hospice. With home health, we are working towards rehabilitation with patients through their diet. Whereas with hospice the goal is to find comfort. In hospice I spend a lot of talking with families and explaining what’s going on, it is interpreting the clinical progression for people as opposed to coaching patients on how they can use food to heal. While I enjoy the teaching in home health, my heart is with hospice.

Anything else about dietetics in hospice care that you’d like others to know or be aware of?
One thing that people outside of the field might not realized is just how important our job is to help keep patients certified for hospice. If someone is put on hospice for something like cancer, the dietetic notes aren’t as important because the disease progression is known and expected. But when people are put on hospice for diseases such as Alzheimer’s, ALS, or Parkinson’s, those types of illnesses can go on for years and years and the patient can seem stable for a very long time. It can become difficult to keep recertifying them for hospice. However, regardless of their perceived stability, you can usually see some nutritional changes happening whether its swallowing, weight loss, or decreased mid-upper arm circumference measurements that are super important to showing that there has been a small decline that’s enough to keep them certified. Dr. Kevin is always like “thanks Stef for finding that!” He really believes dietetics is an important role in hospice care. I would hate to see people not be able to be on hospice just because they haven’t fallen in a few months. Once when we were not seeing a lot of clinical decline with a heart issue patient, I discovered that they had lost 40 pounds and could make a case for them to need to stay on hospice services.

Do you have a favorite memory or experience working in hospice?
Well, the feisty ones are always my favorites! About four years ago I was seeing someone at Sydney Creek and I was asking some questions, and she walks up to me and says “are you capable of shutting up for two minutes?” I was just cracking up, that was that most amazing thing I have ever heard. I’ve always liked the feisty ones. I have a thick skin and it doesn’t hurt my feelings; I just like older adults like that. Sometimes people, after I tell them that I’m the dietitian, they’re waiting for me to tell them something they can’t do, so when I say, “no I actually want you to have whatever you want!” I become one of their favorite people.

For more information about Wilshire Hospice and the services we provide, give us a call at (805) 782-8608 or visit our