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Artificial Nutrition and Hydration in HPM: When Palliative Needs to be Saying "Yes" to Artificial Nutrition and Hydration

Sara L. Bonnes, MD, MSdiscusses artificial Nutrition and Hydration in HPM. Learning Objectives: When are enteral feedings life prolonging in the setting of serious illness; Under what circumstances should I be recommending TPN to my palliative patients; Is TPN ever appropriate in hospice care

Specialty: Family Medicine & Primary Care, Internal Medicine, Psychiatry & Psychology
Subspecialty: Hospice and Palliative Medicine
Mayo Clinic

  |  Published: 06/2021

* Utilization of this Mayo Clinic online (enduring materials) course does not indicate nor guarantee competence or proficiency in the performance of any procedures which may be in this course.
** This video may contain materials that have been removed due to copyright restrictions.
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Artificial Nutrition and Hydration in HPM: When Palliative Needs to be Saying "Yes" to Artificial Nutrition and Hydration
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Transcript

Thank you, Dr. Feeley, and thank you

for the opportunity to speak about

this topic that is near and dear

to my heart, and we find ourselves

in so many conversations about this.

So I'm hoping this is a helpful

session as I share some of

the things that I have learned over

the course of my career that

has helped guide my discussion with

patients as they are approaching

end of life or needing palliative

therapies.

I have no relevant disclosures

and we're going to divide

this into a couple of sections.

First, I'm going to give just some

background information that helps

frame how I think about this,

these nutrition questions.

But then we're also going to talk a

little more about enteral feeding,

the life prolonging or not life

prolonging nature of those.

When should we be considering TPN

for palliative patients

and should we consider TPN in

hospice care?

So for a clinical case, this

is not an uncommon scenario, we have

a young patient, this one a female

who was diagnosed with muteness

adenocarcinoma or pseudo myxoma

peritonitis.

She's admitted for management of a

malignant bowel obstruction.

She's previously had debulking

surgery and she's had hypercar

therapy.

Her obstruction is at multiple

locations in the bowel, including

Distel.

The surgeons say there's nothing

else that they can do.

Oncology says we've exhausted

chemotherapy options

up to this point in time.

Her functional status has been quite

good.

What would you recommend

when someone asks you what to do

for this patient's nutrition needs?

Would you do I.V. hydration,

consider enteral, consider

parenteral or really focus

on symptom management?

And so we certainly have a mix.

And these are challenging because

there are no great consensus

guidelines for many similar

patients. We have proceeded with

parenteral nutrition if we have a

slow or growing tumor with good

functional status.

And we'll talk a little bit more

about things to consider as we

proceed with nutrition

recommendations in situations like

this.

So as I was preparing for this and

just in general practice, there

are so many different societies

with different guidelines.

This is my attempt at recreating a

scatterplot, because depending on

where you look, you may find

different recommendations.

Much of the work on parenteral

and enter nutrition and end of life

is actually being done in Europe.

And so the European Society of

Parenteral and Enteral Nutrition has

some excellent recommendations.

The American Society of Parenteral

and Enteral Nutrition, or Aspen

is partnering with many other

groups and starting to have more

recommendations.

I came across very specific

recommendations from the Japanese

Society of Palliative Medicine that

I was not previously familiar with.

And the American Academy of Hospice

and Palliative Medicine also has

information.

So no wonder that there is

controversy because we have

many different recommendations,

depending on the group that you look

at.

As we frame this discussion

and even in the clinical case that

we have, it's always important

to determine what the patient's

nutrition goals are.

Are they hoping to have increased

energy or are they hoping to have

increased weight?

Have they been told that in order to

get additional chemotherapy, they

need to get some sort of nutrition?

Are they hoping to prolong life?

Is it a fear of starvation

or dehydration

or is it overall quality

of life?

And when they say they just want

to feel better, which I hear,

what symptoms are they really hoping

that the nutrition will help?

I was thinking about this in framing

this discussion.

Nutrition therapy is covered under

Medicare Part B, under

the Prosthetic Device Act.

And so officially, the government

here considers artificial

nutrition an artificial

gut.

And as we frame the discussions,

thinking about other organ

replacement systems, we don't

usually have a lighthearted

discussion about dialysis or

ventilation or other things.

And I realize risks and benefits

are different.

But I think it's also important

to consider that we truly are

bypassing a large organ system

when we're doing this.

And a discussion about this can be

very important and insightful

as well.

The coverage under the Prosthetic

Device Act also makes coverage

for artificial nutrition quite

complicated in many of

our patients who are covered by

Medicare and many insurances

in the U.S.

do follow the Medicare guidelines.

So looking to the European society

for guidelines, I think

they have some of the best and

they're usually in cancer patients,

but I think that they apply to many

other patients who are facing

terminal conditions or looking

at.

Conditions that are leading to end

of life and their goals

in these patients are preventing

and treating the undernutrition or

cachexia,

enhancing compliance with antitumor

or other treatments,

controlling some of the adverse

effects of antitumor therapies,

and overall improving the quality

of life for these patients.

As we talk about that, the European

guidelines do highlight that

every patient diagnosed with cancer

should have a nutrition screening

done really at the time of

diagnosis.

Many times this may be that at

that time they are doing fine and we

feel that they are not at any risk

of malnutrition or nutrition related

issues.

However, if that initial

conversation raises concerns

that they're not able to get

adequate nutrition or having

difficulty with GI function,

it's important to get

the assistance of a registered

dietitian or other nutrition

professional to do further

evaluations by

branch point. From there is can they

eat or can't they eat

if they can't eat?

We need to figure out where

nutrition falls in the scheme,

where we can utilize what they

have to continue to meet their

needs.

And if they can eat, then

the SGA is the subject

of global assessment, which is a

frequent nutrition screening tool

that's done all highlighted a little

bit more on the next slide.

Those who are at low risk or with

a score of a maybe

it's dietary counseling, monitoring

that intake.

But as treatment pursues

or as treatment continues, we

need to continue to reassess because

as disease progresses,

that risk for nutritional issues

can continue to change.

If we have some concerns,

calorie counts or dietary

counseling, looking at those

and if they truly are not able to

meet their nutrition needs early on

in the course of their disease,

considering oral supplementation

or supplementing with enteral foods.

So looking at the subjective global

assessment, there's a variety of

components and

one of the challenges is that some

of them are subjective.

So it truly takes a trained

professional to really utilize this

tool effectively, things

that any of us can do looking at

weight and weight trends, as Dr.

Verdian mentioned in his last talk,

that weight loss of greater than 10

percent in six months or

others are greater than five percent

in one month.

Those are quite concerning.

What are their dietary intake

patterns?

Are they just not eating and

drinking?

What GI symptoms do they have?

What else are you being asked to

assist and manage?

What's their functional capacity?

Dr. Verdian talked about frailty and

that correlates so well with some

of the things that we are looking at

with can they take care of

themselves? Are they able to walk?

What is their handgrip strength?

What are nutrition related

comorbidities, diabetes or

other issues?

And then nutrition focused physical

exam does look at muscle

wasting as well as fat loss.

The overall scoring for this is one

to seven, one to two, a severely

malnourished, three to five

moderate, and then six and seven

are very mild risk to of

being malnourished or being well

nourished.

I would also encourage all of us to

start this discussion early.

There is literature to suggest that

if I have to make the decision for

myself on what I

want, artificial nutrition or

artificial hydration at the end of

life, I would make a different

decision than if I had to make that

decision on behalf of a family

member.

And so looking at the University of

Munich a while ago,

almost 40 percent of patients

or they asked family members also

if you were choosing for yourself,

would you want artificial nutrition

or hydration?

And 40 percent said no.

However, if they were asked to

make that decision for a family

member or a loved one,

much fewer, many fewer of them

said no, that they would not

want, that they felt more compelled

to continue with the artificial

nutrition and hydration

for their loved ones as opposed to

what they wanted for themselves.

There was even more discordance when

they were looking at artificial

hydration alone.

When we look at the advanced

directive data that we have, it's

actually quite poor as well.

This is in our patient population,

the patients that I take care of,

those who are already on home,

parenteral nutrition, only 30

percent of them had an advanced

directive and less than half

of those dressed parenteral

nutrition, which they were already

on.

Looking at the same cohort in

Munich, only 18

percent of their cancer patients had

an advanced directive and

a quarter of those did not have a

decision on artificial nutrition.

So we are not we have significant

room for improvement at

having these discussions early and

documenting these decisions.

So when should I consider internal

nutrition or when should I advocate

for internal nutrition?

There's no clear answer.

Each patient is different.

Each situation is different.

What are key things to consider

as you're having this discussion?

What is the indication?

Can they swallow?

Does the gut work?

I love to have patients eat if

they can't eat.

That's not always an option.

And sometimes they simply can't eat

enough.

But that does impact my choice of

how I help meet their nutritional

needs.

What are their goals again?

What are they hoping to get from

this artificial nutrition?

How long do I think they need it?

What is their life expectancy?

And will get in a while to

a little more information on life

expectancy data.

What's their performance status?

Are they able to

tighten the connections and open

the cans and do all of the cars

that are necessary, or do they have

family who can assist with these

tasks?

Psychosocial evaluation is also

important, these patients

do have a higher risk of getting

depressed or having other issues

when we have all of these

significant changes going on in

their lives.

It's also important to consider are

they safe at home?

We have patients who unfortunately

don't understand the risks of tubes

or a tube gets dislodged and

they don't know how to appropriately

care for it.

What support do they have?

And do we think that they will be

able to complete these tasks

safely at home?

As I looked through the literature

to see the evidence on a life

prolonging with internal nutrition,

these are some of the key conditions

that came up.

I think we're familiar many times

with the stroke patients.

If they're having dysphasia, usually

we start with a nasogastric tube in

the short term and hope

that dysphasia improves.

If it does not improve,

then a percutaneous tube can

be beneficial.

We generally don't need to place a

post pyloric tube in these patients.

However, it can be considered

if the patient has significant

enough deficits, that they're going

to be mostly supine.

Malignancy is a common

situation where we are asked about

internal nutrition, and

it really does depend on the

location of the malignancy and the

anatomy, sometimes with even

a proximal obstruction, we're

able to place a tube distal to that

and continue to use the gut.

Life expectancy is also important

in this.

If life expectancy is less than a

month, it's generally not

recommended.

But a venting tube could be used

if needed for comfort.

For neurologic disorders, I

can't emphasize enough the

importance of that patient

discussion and knowing to some

extent the trajectory of their

disease in our patients

with ALS, we do have

those discussions early

and nutritional or enteral

nutrition may or may not have a

survival benefit.

I anticipate that as time goes on,

that question will be answered with

a little more clarity.

I was surprised a little bit with

the multiple sclerosis data.

But in patients with multiple

sclerosis, where it primarily

impacted swallowing,

it was associated with longer

survival.

Again, these patients did

not always have many other

deficits, but in those with

dysphagia, it could be helpful.

I'll be honest, I have not cared for

a patient with prion disease in many

years, but the literature

suggests that it is associated

with longer survival.

Advanced dementia is a question that

comes up quite frequently, and it

is important to remember that

internal nutrition, once patients

have really stopped eating, is

not associated with a survival

benefit for those

of us who are internists, this

is an American Board of Internal

Medicine Choosing Wisely initiative

to really make sure that we're

having important discussions with

these patients and being honest

about the disease

course in progression and

lack of benefit of enteral

feeding,

persistent vegetative state.

Again, I don't know that the data is

the best because it's very difficult

to truly get survival data

in patients where there is concern

that withholding nutrition or

withholding a therapy would lead to

adverse outcomes.

The data that we do have has

not demonstrated a survival benefit,

but I think that that remains

probably a more controversial area.

Regardless of the condition

for which this is being recommended,

what is going into the tube?

I am surprised at what people try

to put through some of these enteric

tubes.

Many patients across the U.S.

are going away from utilizing

the Canda feeds, and

sometimes family members are

blending up the table food and using

that through the tube, which can be

done safely and adequately.

But the family needs to know what

they're doing.

Many medications are able to be

safely administered through the

tube, but not all of them.

And like consent for any

other procedure and enteric tube

does require a procedure.

We've had patients with significant

complications of aspiration or

perforation.

Again, patients who are already

malnourished don't necessarily have

the best outcomes after a procedure.

There can be bleeding at the site,

infections at the site, poor

healing.

And I always encourage a trial of a

nasal feed prior to placing

a percutaneous tube, because

if they don't tolerate tube feeds,

then I want to avoid a procedure

that just puts them at increased

risk without a significant benefit.

It's also important to consider

where they're at and what their

schedule is like, as you know, in

the hospital.

We are very guilty of stopping and

starting tube feeds given upcoming

procedures.

For patients with recurrent

aspiration, it's important to have

this discussion because there are

many risk factors that contribute to

this enteric feeding is

actually associated with higher

aspiration. Rates in

oropharyngeal secretions are

frequently the culprit.

We have to remember to have good

oral hygiene, use

head of bad precautions with better

elevation.

And the data indicates that post

pyloric feeds may not be any

better than gastric feeds for

aspiration risk.

So truly use some of these

with caution, particularly

if your patient is supine and has

a gastric tube.

We strongly discourage use of

pump feeds because we can

expand that gastric volume and

then increase the reflux and risk

of aspiration.

Still, if you have patients

with recurrent aspiration, it

requires thoughtful discussion

because enteric feeding may not

be the answer and may not

help decrease their aspiration risk.

When should I be thinking about PN

for these patients,

the European guidelines, again, are

for incurable malignancy, but I

think are relevant to many areas.

They recommend considering

artificial nutrition if

death is not imminent

and it's expected that artificial

nutrition can stabilize or

improve the performance status of

quality of life

andrle nutrition is recommended to

minimize weight loss before

that dying phase has started

and consider parenteral nutrition.

If enteral nutrition is insufficient

or really not feasible, given

anatomy or other complications,

expected survival is

longer than two to three months.

It's thought that PDN can stabilize

or improve performance status of

quality of life, and

the patient desires this mode of

nutrition support.

I think it's really important,

again, to have that discussion and

understand what patients are

interested in.

I have patients who have told me

they don't want machines running

their life and that is part

of their hesitation with nutrition

or patients who just

feel that this would detract from

the things that they want to do.

The key topics when discussing

TPN are similar to N,

what is that indication

again, TPN is considered

a prosthetic GUTTE and

so also insurance coverage

can be an issue here.

What are their goals?

Duration of need, life expectancy,

usually that two to three months and

I'll show you some data shortly.

What's their performance status and

their ability to administer the pin?

What about family support

and the psychosocial evaluation

as well?

Are they safe at home?

And particularly before we

were discharging patients with a

central line?

Do they have a history of drug or

alcohol abuse or do they have

a history of recent suicide

attempts?

We have, unfortunately had patients

who have misused central access

to complete tasks of self harm.

So it's important to consider before

you send them out of the hospital.

Unfortunately, insurance coverage

can certainly be an issue

without insurance coverage,

home parenteral nutrition usually

costs about one hundred and fifty to

two hundred thousand dollars a year

in the U.S.

and that's generally not financially

feasible for my patients.

What does it look like at home?

You can certainly see here on the

left, the I.B.

pole with the bags and the multiple

pumps at home, are patients

actually get a portable backpack

like that on the right, the pump

fits in it, the TPN fits in it,

and they can take it with them.

The key differences in the hospital

the nurse administers at

home, we train patient our family

members to administer.

So particularly in patients with

poor functional status or

who are heading towards a more

palliative phase.

We need to have someone who can

assist when they are no longer able

to provide that care for themselves

in the hospital.

It's generally a 24 hour infusion

at home. Our goal is a 12 hour

infusion, but we're not always

able to get that depending on the

patient's physiologic tolerance.

And it's much more portable in

a backpack at home.

Looking at the survival and quality

of life for patients treated

at the Cancer Treatment Center of

America 2009 to 2011,

they had cachexia and compromised

function.

Anticipated survival was greater

than 90 days, but only

15 were really analyzed at that

three month period.

Many, unfortunately,

who dropped out did so because

they passed away or because they

entered hospice.

Of the thirty nine patients who had

one month follow up, they did have

improved performance skills,

improved fatigue, nausea and

constipation.

And twenty two of those patients

made it to two months, 15

to three months, and they continued

with the improved performance

status, physical function and

fatigue.

Quality of life really didn't

improve, though, until they hit that

two to three month mark.

Median survival in those with

a Karnofsky performance scale of

less than 50 was four point six

months and those with

a Karnofsky greater than fifty

six point four months.

So overall, functional status had a

significant correlation with how

they ended up doing.

Looking more at quality of life in

patients with a malignant bowel

obstruction median of four

months of TPN, we

again had improved weight, albumin

and performance status.

But quality of life really improved

in those who survived greater than

three months and did not do

so much for those who survived less

than three months.

Again, functional status before

starting TPN correlated with

longer survival

in this Japanese paper,

their median survival and patients

receiving IV hydration versus

TPN was 20 days.

Those who were on TPN

had a survival of 31 days

as compared to the median of 20.

But it didn't reach statistical

significance.

They said it was relatively longer

survival and the changes

in global quality of life did not

differ between those two groups.

So I think it's it does indicate,

depending on what you're trying to

get and that life expectancy.

Are we really aiming for hydration

versus nutrition?

As we look at life expectancy, which

is a common question, patients want

the TPN to keep them alive longer.

Nine of these patients with end

stage malignancy survived

less than two months.

Parenteral nutrition did not

contribute to death to any cancer

patients. And this was an important

statement because

many years ago, the gastro

and the GI societies actually

felt that pain potentially caused

harm in patients with advanced

malignancy.

And the data really is not

supporting that at this time.

Karnofsky, again, higher

than 50, correlated with better

survival, less than 50.

They did have a three month median

survival, but the survival

ranged from days to months.

And I think that's an important

point, is that it's so

hard to predict that survival.

Those who are on TPN longer

did have more complications.

What are those complications?

We can have infection, thrombosis.

They may need a procedure.

TPN may not fix electrolyte

imbalances.

We have patients who do need weekly

lab drawer's in order to maintain

that.

And TPN at home is

mixed usually for a week at a time.

So we cannot easily correct

electrolyte issues.

Lines can migrate

and I am surprised at the number

of dogs or turtles or

other things that have dislodged

a line or bitten off an end.

So be careful with what else

is in the house with that line.

Also, a word of caution.

Midline IVs can be used for many

things.

We have had patients who want to

incorrectly connect their TPN

to their midline I.V.

and that is not safe.

The concentration of the pen

will cause significant vein issues,

so make sure patients understand the

access that they have.

In a similar case, this patient has

done well if she misses a dose,

she gets muscle cramps and

dehydrated.

Unfortunately, she's got

new malignancy.

She plans to enroll in hospice.

And the question is, what do you

recommend about the TPN

again?

There's no clear consensus

guidelines, but when should I

consider TPN and hospice?

We have patients with short bowel

syndrome who get diagnosed with

malignancy. They've been on TPN

20 or 30 years

and they do have significant

symptoms without pain.

So it depends on where we're at in

this discussion.

If we're already at end of life,

it's generally harder to stop pian

than to not initiate pian.

So make sure you have a discussion

about goals of care early on

so that you can be consistent.

Why was the artificial nutrition

started if it is

because of a chronic condition

unrelated to their hospice

diagnosis?

It may very well be reasonable to

continue.

Will symptoms get worse by

stopping the TPN or may

they get better?

Are there additional treatment

options? Again, not necessarily

something as they are thinking about

hospice that they should be

considering other treatments.

But important to clarify,

what is the anticipated life

expectancy and

when is it no longer consistent with

patient goals or is

it causing harm?

And the harms I pay most attention

to are infections, electrolyte

issues and volume overload.

So in summary, artificial

nutrition is important to discuss

early on in the disease course,

it's hard to come up with consensus

guidelines because every patient

and situation is so different,

it may improve survival and quality

of life.

But certainly patients need to be

aware of the risks as well.

And artificial nutrition may not

be able to treat what the patient or

the family is most concerned about.

And we need to be aware and upfront

and honest at the beginning.

Patient wishes and expectations

are important.

It may not remain consistent with

goals of care.

And one of the common questions

is, is it going to feed my cancer?

And the answer is we don't

have data to support that.

Thank you very much for spending

this time with me.

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