Comfort feeding end of life is a very important topic to discuss for Dietitians. It’s during these times that the resident’s loved ones need arguably the most education on the end of life process to bring a sense of comfort. Read on to find out how to comfort feed at end of life and how to address hard conversations.
Learning About Comfort Feeding End of Life
One of the first educational seminars I went to out of internship was one focused on Comfort Feeding End of Life conversations. I was sent by my workplace having never been exposed to the topic before. I didn’t realize that this would be the most important topic I could ever learn about as a Dietitian.
Most of us don’t realize how important the role of an RD is in bringing comfort to the family members of our residents at the end of their lives.
Take a moment to think back to a resident that you lost recently, or may be currently in this process, and how their nutrition changed? What were your interactions with the family members like? Were you involved in any of the end of life conversations?
What is the Dietitians Role in End of Life?
As a nutrition care expert, we are understanding of how important food is. Food isn’t just there to fulfil a physical need, it’s a part of our social life, plays a part in many cultures, bonds loved ones, provides comfort, certain foods hold memories of our past, and so much more.
These are key factors to remember when a family member comes to you saying that their loved one is starving and we NEED to feed them. Even when this seems to go against medical recommendations.
I’m not saying we go against medical recommendations, but all of those factors should bring about some compassion when you have discussions with their family.
As the Dietitian, you are responsible to have the conversations surrounding comfort feeding. You should be the one to discuss end of life nutrition with the family and patient.
Talking Points for Comfort Feeding End of Life
Start with the basis that families may not understand that there are irreversible nutrition changes that occur as a result of aging/decline in health.
This is a natural process that occurs as a result of the dying process. It is the body’s way of preparing itself and the eventual slow down/shut down of body processes.
The body keeps essential functions going, and metabolism progressively slows down, meaning that providing a high amount of food and drinks may actually cause increased discomfort for the resident.
I have had experiences where family members have a very difficult time seeing a resident’s intake go from 100% at most meals, to 50% down to 25%. They may be spending increasing time in bed, sleeping more, not getting up for meals anymore.
This is VERY difficult for most family’s to see.
Before you begin to initiate the end of life conversations you need to discuss with the Doctor and the Nurses in charge of their care. You all need to be in agreement that the resident is having a decline in their overall health, and you all believe that this progression will likely continue.
If the Doctor does believe that nutrition interventions will likely not result in increased quality of life, extension of life, or provide any additional comfort, you can then progress with end of life conversations.
Meet the Family Where They Are At Emotionally
Next you need to gauge where the family is at when you begin to have the conversation.
Some family members you can be very direct and honest with from the beginning. Some family members you need to slowly overtime plant the seeds about the end of life. What I have found is that each family needs a different approach, the message you deliver is the same, but the way the conversation is delivered is different for everyone.
At times you will have family’s that push for nutrition interventions to continue, some examples include:
Getting them out of bed for every meal even though the resident prefers to stay in bed
Wanting to increase the oral nutritional supplements delivered or initiate these
Questioning if tube feeding needs to be introduced, asking for admission to hospital to provide IV fluids
These are ALL conversations that the RD should be at least involved in, or take the lead in. I recommend that you establish your role within the team, once you are knowledgeable and comfortable in this area, take the lead on nutrition at end of life conversations.
Find a Conversation Location
Find a good place to have the conversation with the family.
I recommend having some type of privacy during a conversation like this, as it is difficult to hear, even if the family is aware and accepting. This may be in the residents room, or an empty dining room, a private meeting room, just ensure that you find a private space.
If you think that a family is not quite ready for the full conversation, I like to just have a casual talk in the residents room. If I think the family is ready for the conversation, or that they would benefit from more information, I will schedule an official meeting with them.
Sample Conversation Starters
Here are a few things that I have found helpful to talk with the family’s about:
- Food is an emotional thing and I understand that it is hard to see your loved one not taking in what may be perceived as ‘not enough.’ As we age and the body starts to slow down, the amount of food and fluids we need to take in decreases.
- Hunger signals are not as present and ‘starving’ is not something that occurs as we are dying. It may be hard to accept, but studies have shown that hunger pains are not experienced as the body begins to slow down/shut down. It’s a process that the body enables to provide comfort to itself, it is not the way we experience it as a younger individual.
- We want to focus on food and drinks that the resident enjoys and would like instead of the typical 3 meals per day. As long as the resident is still accepting, awake and aware, we can provide foods that they would like. We will take our signals from the resident. If the resident is increasingly fatigued, falling asleep during meals, we will stop, as it is not safe for the resident to be eating at that moment.
- During the dying process the body is functioning for essential purposes, heart, brain, etc. For this reason the digestive system isn’t necessarily ‘essential’ anymore. This can mean that if we provide too much food and fluids, it can actually cause increasing discomfort to the resident. Their body is exerting energy to breakdown food, can cause bloating, discomfort, increasing negative effects.
- Swallowing can become a difficult thing when a resident is in bed, fatigued, and the body slowing down. We do not want to increase the risk of choking, aspiration, or silent aspiration, as this can cause difficulty and health risks for the resident. We need to be incredibly careful about providing any food or drink.
- It may seem as though tube feeding and oral nutritional supplements can provide a way to increase comfort or length of life, but when an individual is dying, studies have shown that this does not increase length of life. This would be one thing you would want to have the Doctor involved in, as introducing tube feeding is a medical decision. But we as RD’s can educate on what we know about it.
- We can provide mouth care for the resident during this time, the family’s can be provided training on how to do so. This can be a way for the family to feel like they are providing fluids and comfort for the resident as they spend time together.
- When you spend time with the resident you may feel like providing food and drinks is a way to comfort the resident, but we can instead shift our focus to bonding in other ways. This may be simply holding the residents hand, playing music, reading to them, this may provide greater comfort to the resident than providing food. Though this may feel like a hard adjustment, it is a great way to spend time with their loved one.
Closing Thoughts on Comfort Feeding End of Life
I know that the first few times that you have conversations surrounding the end of life, your confidence is shaky, mine certainly was. I felt as though it wasn’t my place to be talking about the end of life with a family, but over time I have realized that it most certainly is!
As you have read in this blog, nutrition is such a huge source of comfort and bonding, but it is also a significant indicator for the end of life. Family’s can have high anxiety and stress when their loved one isn’t eating, and we can be the source of comfort telling them that it’s okay.
It’s okay for them to feel that way because anyone in their position would likely feel that way too. But knowing that their loved one isn’t suffering is a way of easing their pain, and allowing them to enjoy their time with their loved one.
Lastly, know the resident and their family. I can’t stress enough that each situation will be different. You need to know the best approach with the family and that comes with knowing the resident and their family.
Maybe you haven’t had time to get to know them super well, so in that circumstance, talk with the Nurse because they will likely know the way that would work best.
Having end of life conversations is a very important skill to develop if you’re going to be working in LTC, because this is the last stop for people. Over time I promise you will get better at the conversation!
You can find the best resource to educate you on EXACTLY how to talk to family members about End of Life Nutrition here:
Have a great day as always!