End of Life Nutrition

End of life nutrition and end of life eating habits are the most important but least talked about aspects for Dietitians. I think that every Dietitian needs to be educated on how to have these conversations for the benefit of their patients and their loved ones. 

Before we get into today’s article, I will share about an eBook and video that you should definitely have to educate yourself on!

End of Life Nutrition Guidelines

If you’re looking to really invest in learning about end of life nutrition, here’s the latest eBook that you need!

Click here to go straight to the book and course video!

In the newest eBook you will learn:

The Essential End of Life Nutrition Guidelines

What are the End of Life Hydration Benefits and Burdens?

How to Start Tough Conversations about End of Life Nutrition and Hydration with loved ones

Should your patient be tube fed at the end of life?

How do I tell a family that tube feeding is or isn’t the right choice?

Is weight loss and not eating at the end of life normal?

End of Life Nutrition and Hydration – Side Effects, When it’s appropriate, and more!

By the end of this eBook on End of Life Nutrition and Hydration you will feel more confident to talk with loved ones about:

What Happens with End of Life Nutrition and Hydration

How to Prepare Loved Ones for What is Coming Nutrition Wise

and so much more!

The benefit of this eBook is it comes with a teaching video too!  I go through a broad overview of the book and include case studies to help you understand how to have tough conversations!

Click The Picture To Buy!

What is End of Life Care?

End of life can extend from days to months in some cases.  A Doctor will typically give a timeline of the length of life expectation1.  The timeline is typically 6 months or less.  

An end of life declaration doesn’t necessarily mean death is imminent or that you will see a rapid decline in health.  It will look different for every patient.  It means that the team will now focus on comfort care.  

You will also hear hospice and end of life care used interchangeably3.  

End of life care for Dietitian’s starts with educating the loved ones of what they can expect.  Nutrition is a huge indicator and noticeable effect when the end of life is coming.  

If you aren’t comfortable having this conversation, then read on to find out where to start! 

The Essentials of Nutrition Care at the End of Life

End of Life Care Vs Palliative Care

Yes, they’re two very different things.  

Palliative care is a patient being diagnosed or living with a condition that will result in their death2.  An individual can live in the state of palliative care for years.  Think of cancer, COPD, etc.  A Dietitian’s involvement in palliative care will vary depending on what the diagnosis is.

Palliative care’s approach will be to improve the quality of life of the individual diagnosed.  Both end of life and palliative care focus on providing optimal comfort and reduced pain for the duration of their lives.  

The difference between the two truly lies in the length of time.  Palliative care cannot always give a timeline of life, end of life care is typically given at 6 months or less.

End of Life Stages Timeline

Talking about the end of life stages timeline each case will look different.  Each individual has SO many different diagnoses, health and physical history, medications, lifestyle habits, physical ability, and much more. 

But there are some typical expectations that are observed in end of life care.  

As you can see from the timeline below4, A LOT of these are end of life nutrition related. 

The End of Life Stages Timeline

Preparing loved ones and the patient for the end of life is essential to helping them along their journey.  We look for end of life nutrition steps that can direct us on our nutrition interventions.

A Dietitian providing education can ease the burden at the end of life.

Let’s delve further into what end of life eating habits look like.

End of Life Eating Habits

End of life eating habits will look different for every patient.  We cannot with 100% certainty predict what end of life eating habits will look like.  But we can look at what may form their habits.

There are a few different questions that arise at end of life nutrition care.  End of Life Nutrition and hydration has been found in research to be the top concern of loved ones5!  Research also shows that loved ones think that without nutrition and hydration a patient will have greater suffering 5b. 

End of life eating habits will largely depend on:

How close they are to end of life
The symptoms they are experiencing related to end of life
Level of daily consciousness
Dysphagia signs and symptoms
Pain level management
Are preferences for foods being accommodated?
Level of eating assistance needed and being offered
Loss of appetite (if you want tips and tricks to help with appetite in the elderly, read this article)
Level of hunger/fullness

You cannot force feed a patient at the end of life.  End of life nutrition eating habits are up to the patient to determine.  Their choices need to be respected.

A  patient’s eating habits at the end of life fluctuate day to day.  Some days they may want their full meals and other days they will not eat much more than a few bites.  It is up to them and how they feel that day.

If a family is insisting on feeding a patient their whole meal, provide some gentle education on end of life eating habits.  You will want to focus on:

Respecting a patient’s right to refuse
Respecting a patient’s hunger and fullness cues
Respecting the end of life process
Respecting their basic human right not to be force fed

At the end of the day, the focus on end of life nutrition and hydration needs to be on comfort.  The comfort of the patient that is.  

End of Life Nutrition Guidelines

So what does it mean to focus on comfort at the end of life?

All Dietitians and loved ones of a patient at the end of life need is provide the patient with what they are willing to accept essentially. 

A patient will continue to be provided with full meals and regular snacks until they indicate that they no longer want it.  This can be through a variety of both verbal and non-verbal cues.  I go further in depth about this in the eBook, which you can find here.

Focus on giving the patient their favourite food and drinks throughout the day.  If they have snacks, drinks, certain meals that they truly loved, offer those.  A family is allowed to bring in these items during the end of life time as well!

Ensure that they are in the upright, seated position when eating and drinking.  We always want to be cognizant of aspiration risks, and be cautious.  

As a patient is at the end of life they may also require increased levels of eating assistance.  Dietitians and staff should take note during meals of the progression and adjust the care plan as needed.

And lastly, families should always be kept in the loop about changes.  A family needs to be prepared for when the end of life is coming to a close.  Staff providing updates and good communication is essential. 

If you want to learn more about how to talk to loved ones and patients about end of life, I highly recommend watching the video attached to the eBook.  

Frequently Asked Questions

How long can you live without food and water in hospice care?

This is a tough question to answer for Dietitian’s.  The true answer is that every person is going to last different periods of time.  We as Dietitian’s cannot give a definitive timeline.  

What we can say is that you should offer food and fluids under the following circumstances at end of life:

• The patient is awake and alert enough to safely feed
• The patient is not actively pushing away, pursing their lips, or refusing the food and fluids
• The patient is in an upright position to eat and drink

Food and fluid refusal is common towards the last days of life.  If the patient is rejecting the food and fluids, we should respect this.  This is difficult for a loved one to observe.  

Studies 6 have shown that while loved ones have a hard time with a lack of intake, suffering is not increased in the dying patient.  It’s KEY to provide this information to loved ones!  If you haven’t checked out the blog on how to have this discussion, click here.

In summation, we can say that when food and water intake stop in a hospice patient, death is likely very close.

What is the End of Life Dehydration Process?

You more than likely will be approached by a family and asked for your thoughts on end of life hydration.  You will want to provide the family education on the end of life hydration benefit or burden.

End of Life Hydration Benefit or Burden?

The organs during the dying process are shutting down.  Body functions are slowing because the body only wants to maintain enough function to live7.  By offering excess amounts of hydration beyond what the body processes need, can cause discomfort.

The research currently tells us that end of life hydration is not beneficial in a dying patient.  Research 6b actually compared end of life hydration individuals to those who didn’t.  The results showed no extension to life in those with end of life hydration.

We should provide loved ones with the education that research currently doesn’t support that rehydration will extend life or provide greater comfort.  Instead, we want to provide fluids when accepted.  When fluids are no longer accepted, loved ones can be provided with swabs to keep their mouths moist.  

Should We Consider Feeding Tube End of Life?

This is another question you will be asked, should we consider artificial nutrition?  This is a big ethical question and I’d love to get into it.  

First off, you should know the difference between enteral and parenteral nutrition.  But if you don’t, I’ll give you the brief lowdown on both.

Parenteral Vs Enteral: End of Life Tube Feed

Enteral Vs Parenteral Nutrition

There are complications associated with both, but with TPN, there are more complications and risks.  

I have yet to find any strong research that suggests tube feeding results in a longer life8.  The research instead points to the ethical dilemma that happens when tube feeding is selected.

When you have the conversation, should we start artificial nutrition, you are there to educate and inform the family.  Here are some talking points:

What Should You Talk About When Discussing Artificial Nutrition at End of Life?

Stopping Feeding Tube: End of Life

Discussing with a family stopping a feeding tube at end of life is an incredibly difficult decision to have.  If you want tips on how to have this conversation, I discuss further in the eBook.  

But here are some talking points from research that are very important:

1. Won’t Extend Life

• Research at this point doesn’t support artificial nutrition extending life 9.  Nutrition and hydration are essential to live – but at the end of life, the organs are shutting down and don’t need the energy that they used to.

2.  Can Cause More Discomfort

• With the body only supporting vital functions to stay alive (breathing, heart beating, limiting blood flow, etc).  The digestive system takes a backseat.  By pumping in artificial nutrition and hydration this can cause bloating and discomfort.  The GI system isn’t ‘turned on’ as efficiently, and this can lead to the body working harder.

3.  Associated Complications Can Be Serious

• Enteral and Parenteral Nutrition are both invasive procedures.  Anytime you are introducing foreign substances or opening areas of the body, you risk infection.  Parenteral nutrition also requires blood tests to monitor labs.

4. Discontinuation a Very Difficult Decision

• I’m going to get into this one further below, but this is a serious talking point!  

5. What Would the Patient Want?

• All the conversations need to come back to this.  Having an honest discussion about what would the patient have wanted if they were able to make the choice now.  It is obviously ideal if this is in the advanced care directive, but not all do.  

What About Feeding Tube Removal?

I want to get into this a little bit more because I think it’s an important focus.  Artificial nutrition at the end of life will wind up with a feeding tube removal discussion.  Talking about feeding tube removal is tough, so approach with compassion.

Start the conversation EARLY and be honest on the pros and cons, like I discussed above.  When I say start the conversion early, I mean AS SOON AS THE DOCTOR DECLARES THEM END OF LIFE!  

I want to emphasise: Do not avoid telling them that if a tube feed is initiated, at some point feeding tube removal will be a discussion.  

Research 10 points to artificial nutrition being more of an ethical than clinical question for this exact reason.  Families really need to be aware of the heavy impact and emotional distress that is associated with feeding tube removal.  

It is easier to make the decision to keep a patient comfortable and hydrated as best we can, than to discontinue tube feeding.  End of life is inevitable, the goal should be what the patient would have wanted.

So what should our focus be with end of life nutrition care?

Comfort Feeding at the End of Life

In all these discussions, we are not advocating that if we aren’t using artificial nutrition we’re advocating for no feeding.  Research 11 suggests that loved ones think that it’s either one or the other.

I believe that the goal should be comfort feeding at the end of life.  This means that we:

Comfort Feeding is KEY!

This sums up perfectly the focus that we should be going for with comfort feeding at the end of life.

The most important point out of all of this though is to start the discussion early!  If the patient can be involved in the discussion, then it is easier for the family to accept their choice.  Many will say that they do not want a feeding tube.  But family’s won’t know unless they’re asked. 

Ending Thoughts…

It is important if you’re working with patient’s at the end of life, that you’re educated on end of life nutrition care.

Be empathetic with the loved ones that you’re talking to.  If you want to learn more about actual conversation cues, then check out this blog here.  

What are your thoughts on end of life nutrition care?

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• Michelle