Understanding clinical nutrition and palliative care, hospice, and comfort care is confusing. Start here for a breakdown on each type of care and the nutritional support you’ll give to each patient you see.
Nutrition and Palliative Care, Hospice, and Comfort Cares
Changes to methods of care
Many of your patients will be managing severe illness and chronic pain.
They might also be actively dying, or might possibly be facing something else that limits their ability to either recover or to sufficiently deal with their current symptoms.
For some people in these positions, this becomes a question of end-of-life support. For others it’s simply about managing and helping to improve their quality of life.
And as you’re thinking about how to support your patients when these changes become a reality, you’re also going to have to consider what this means to the way you provide nutritional support.
This can get even harder to navigate when you’re working with patients who have wounds, are underweight, or who you believe need some kind of extra nutritional support during this time.
This isn’t stuff you learned in school.
And a lot of times, it’s not even something your preceptors review with you.
In this post, we’re going to look at what each type of care means, and go over some examples of how you can provide nutritional support during those times.
Three Types of Patient Cares
Most patients you work with will be receiving total cares.
This means the health care team (you as the dietitian included) will provide all the available support and curative treatments at their disposal to keep your patient alive.
Other patients you work with may have different requests, and their medical care plan will reflect those choices.
There are three common types of medical support you’ll see. They include:
- Palliative care
- Hospice care
- Comfort care
Each of these types of medical care plans cover a different level of support, and each are a very personal decision.
Sometimes they’re built into a person’s advanced directives and written out in the form of a MOLST or a medical orders for life-sustaining treatment.
It spells out exactly what treatments someone wants. And because it’s so personal, there’s no hard and fast rules around making that happen.
But the advanced directives and MOLST form can play a significant role in identifying what kind of care a patient gets adjusted to.
Because of this, nutritional support can change significantly when you’re managing someone with new forms of care in place.
Before we dive in…
Keep in mind, there can be some overlap in the way different facilities use the identifiers of palliative care, hospice, and comfort cares.
It’s not unusual to have different places provide different types of support, despite medical care affiliations.
For this reason, it’s recommended that you always get clarification about what the limitations of care are for your facility when you see one of these types of support identified for the first time.
Medical Cares and Nutritional Support
There are some very specific things that nutritional support will and won’t include when your patient’s cares change.
As a dietitian you’re trained to provide things like:
- TPN and EN support
- Hydration support
- Wound care
- Oral nutritional supplements (ONS) and micronutrients
- Tracking and managing labs, weight status, intake, and dietary needs
But when medical care plans change, your ability as a dietitian to offer or provide all the cares you’d like can also change.
And that means, you’ve got to be clear about what you will provide your patient. And how you’ll justify that recommendation.
Let’s look at each one and what it might mean for your decision making as a dietitian and in providing nutritional support.
PALLIATIVE CARE
What is palliative care?
The purpose of palliative care is to help your patient maintain their highest quality of life when they’re dealing with ongoing illness at any stage of development.
Typically the goal is to limit patient pain, and increase overall support based on the patient’s specific needs.
This is generally not an end-of-life service. It can be provided for anyone and can be maintained as long as needed.
At its core, palliative care adds to a patient’s care plan by increasing access to medical support options that might help with things like pain management and allow for additional treatment options.
The focus is not to remove services or limit access to curative or therapeutic treatment. This includes maintaining or adjusting medications and pain management support.
It might also include adding supportive treatments like dialysis or even a blood transfusion to help someone improve fatigue by managing their anemia or debridement for their wounds.
Nutritional support during palliative care
The addition of palliative care typically includes continuing with all forms of nutritional support that don’t cause your patient increased physical difficulty, emotional difficulty, or reduce their ability to manage other curative treatments.
What Will Continue
Health conditions can be very fluid, and everyone’s response to therapeutic treatments are very different.
Remember, the goal is to improve quality of life whenever and however possible.
Patients can move in and out of palliative care without restriction. And as their illness changes or progresses, what is considered to be optimal for improved quality of life for each patient may also change.
Because of this, palliative care can be very flexible.
During palliative care support, you’ll continue to track and manage a combination of any or all of the following:
- Weight status
- Support wound healing
- Monitor PO intake
- Recommend alternative feeding options like enteral nutrition and parenteral nutrition support
What Might Change
Here’s where your professional opinion becomes crucial.
Because the focus of palliative care is about supporting your patient’s ability to continue with curative treatments and improving their quality of life, it’s going to be up to you to decide how much nutritional support you feel comfortable providing.
You might decide to make some changes to patient on palliative care that include things like:
- Liberalizing diet orders
- Honoring food preferences
- Recommending alternate feeding methods
- Providing small, frequent, nutrient dense meals or reducing expected intake goals
- SLP evals
- Providing nutritional support for wounds
There’s no wrong answer. It’s a very individual decision.
This will be based on the current mental and emotional state of your patient, their physical ability to complete certain tasks, and reasonable expectations that what you’re recommending is helping and not reducing their quality of life.
For one person, this might mean you recommend pleasure feeds by liberalizing their diet order and honoring their food preferences despite a therapeutic diet recommendation.
For someone else this might mean recommending a PEG when your patient is no longer able to manage their weight and nutritional status through adequate PO intake.
But whatever you decide, you should include your patient in the final decision and make sure the rest of the care team understands your recommendation so they can also provide support.
Addressing palliative care limitations in a nutrition assessment
No matter the level of nutrition support you decide to provide, stating clearly WHY you’re providing it is always essential.
Some of these might sound like PES statements. And that’s sort of the point.
All PES statements do is state clearly why you’re doing what you’re doing.
But when it comes to things like nutrition assessment summaries and writing your interventions, you might be looking for other ways to explain your recommendations.
You might use phrases like:
- Diet liberalized with palliative care in place to support improved intake and allow patient to meet nutritional needs.
- Consider PEG placement as patient with pharyngeal cancer and inability to meet nutritional needs with PO intake
- Patient agrees to Ensure TID to support meeting nutritional needs on palliative care.
Or even just simple additions to common statements like:
- …per palliative care order.
- …palliative care in place.
- …per RN [DATE] palliative care note.
But whatever you do, make sure you’re identifying your interventions and what you’ll monitor, make sure to include palliative care as part of your justification.
HOSPICE CARE
What is hospice care?
Hospice is determined on a case by case basis by the health care team when a cure is no longer a possibility and “the burdens of treatment outweigh the benefits”.
It’s an enrollment program that is signed off on by the medical team and is primarily provided to those who doctors believe are about six months away from the end of their life.
Often, there’s even a specialized hospice care team that works specifically with those patients who have been identified as good candidates.
Of course, with the six month or less life expectancy, there’s always the chance hospice care may be extended or even removed to account for ongoing to changes in a patient’s health.
Unlike palliative care, hospice care is primarily about what treatments or levels of care a patient will no longer receive.
There are no curative and minimal therapeutic treatments provided.
You’ll often see specific orders for NO WEIGHTS or NO LABS, and suddenly see a number of medications removed from the patient’s MAR (medication administration record).
Other times, adjustments to care will be implied or you’ll simply have to ask.
These are often considered to be burdens of treatment because they can be difficult for some patients to endure when they’re at the end of their lives.
Here’s an example: you have a patient who’s 98 years old, malnourished and unable to stand independently, with multiple pressure ulcers.
It becomes a significant and painful burden for them to be removed from their bed to be weighed regularly when a goal of care is to make them comfortable.
Because of this, weights and labs often the first things to be eliminated when hospice is started.
What makes hospice tricky?
There may also be times when you’ll have someone on hospice but who’s still receiving all forms of care.
Hospice patients might also continue with medications like diuretics or blood pressure medications or even anti-anxiety medication. Less often, SLP or PT may become or remain involved.
It probably won’t happen often. But there’s a good chance you’ll still see it happen from time to time.
It’s not you. It’s confusing.
And the only way to figure out what’s happening and how you should proceed with your nutrition recommendations, is to ask.
Nutritional support with hospice care
Once hospice has been assigned, your goal is to provide any type of support that can minimize pain and discomfort of your patient. For the medical team this can include all types of physical and emotional support.
Nutritionally, things will likely change significantly.
What Will Continue
During hospice the focus is turned towards ensuring patients are provided as much therapeutic leniency and comfort as possible.
You’ll usually continue with:
- Any ONS or special foods provided prior to hospice
- Adjusting diet orders based on preferences
- Providing pleasure foods, possibly even with those with limited PO intake
- Liberalizing therapeutic diets
- Discussing changes in dysphagia recommendations
For many patients, this means simply changing nothing.
You’ll continue with whatever dietary interventions had been previously provided in an effort to allow your patient to remain as comfortable as possible.
They might not be meeting their nutritional needs with their PO intake, they might develop wounds during the course of their hospice care, they might be excellent candidates for SLP evaluation.
However, adjustments you make during the course of hospice care need to always be decided through the lens of limiting the burden of treatment you’re imparting on your patient.
What Might Change
During hospice, interventions that are oriented towards sustaining or lengthening life are typically not being provided.
This means, you might either limit or avoid things like:
- Increasing ONS
- Recording weights and evaluating weight status
- Monitoring medications
- Recommend stopping or limiting wound support
With palliative care, there’s often a lot of negotiations around what makes sense for your patient and the needs of their illness.
With hospice, it’s usually a lot more straightforward.
The level of care and support provided by the entire healthcare team is significantly limited. And this includes the nutritional support provided by you, the dietitian.
Hospice and Nutritional Support: An ethics question
This sort of decision making brings up a number of ethical questions.
When adding a PEG will not improve your patient’s quality of life, or when recommending a protein supplement will not lead to wound healing that will lengthen life, ethics becomes a personal and difficult decision.
However when the objective of hospice care is to “ minimize food-related discomfort and maximize food enjoyment”, there’s a very specific conversation that needs to then happen with the patient’s health proxy, the care team, and the attending physician.
COMFORT CARE
What is comfort care?
Comfort care is the one thing on this list that is fairly fluid and can shift between both palliative care and hospice.
It’s not uncommon to see comfort cares pop up both alongside the words palliative and hospice.
You’ll likely also see it used as a stand-alone identifier to describe a patient’s status.
Like both palliative care and hospice, comfort care is meant to support people moving towards the end of their lives or dealing with difficult to manage illness, by providing as much overall relief as possible.
It’s also commonly considered to overlap significantly with hospice. In this case, the emphasis is in making sure the patient has as many opportunities to achieve and remain comfortable as possible.
However, like palliative care it is designed to allow for opportunities for healing and curative support options to be involved.
Nutritional support with comfort cares
There’s no exact way to know what kind of nutritional therapy you’ll be providing your patient who’s been assigned comfort cares will be receiving.
For this reason, the only way to have true clarity about what kind of nutritional support you’ll be providing your patient is to ask.
You can follow up with the primary care physician directly, ask during interdisciplinary care rounds, or get clarification during team meetings.
But whenever you do it, it’s a legitimate question that deserves a clear answer.
What Will Continue
Comfort care might mean nothing changes to the care plan provided to your patient.
Comfort cares might be provided to help justify ongoing therapeutic options that aren’t specifically curative but provide some level of therapeutic support.
You might see continuation of all cares including:
- Weight and labs
- Medication adjustments
- Pain management support
- Wound support
- SLP and PT evaluations
Maybe your patient isn’t ready for hospice but doesn’t qualify for palliative care because they have no specific condition to be assigned.
At this point comfort cares might be put into place.
What Might Change
The nutrition support you provide to a patient on comfort cares will be specific to each patient and highly individualized to their current situation.
It will also depend if comfort cares is combined with palliative care or hospice, or if comfort measures are being provided to simply ensure your patient feels their best during a difficult time.
Depending on the patient, you might decide to recommend:
- Pleasure feeds or small frequent meal options
- Liberalized diet changes despite ongoing treatments like dialysis or wound care
- Adjusting EN support to meet new weight goals
There’s no wrong answer. It’s all about your patient and what you see their specific needs are.
It’s not easy, but it’s a big part of your job as the registered dietitian to make these final decisions.
And That’s It!
Have more questions about end of life care, and managing quality of life when a patient’s status changes?
Here’s a few great resources and places to start reading:
Want even more to help in clinical?
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