Hospice patient is requesting food, but the family denies her

[RNgemini]

I work in home health care as a CNA (I am a new grad RN though, still looking for a job) and I have a new client who is now on hospice. Her condition rapidly declined after she broke her hip and had surgery. She has severe dementia, is incontinent, and is very weak and bed-bound at this point. Here's where I have a problem though. Today she was asking to get out of bed, to eat something, and for a drink of water. She was denied all these things by the family's wishes since her daughter is her POA. She failed speech eval for swallowing, so she is NPO. Something just seems wrong to me about denying someone food and water when they are asking for it. It seem a little inhumane to me. She hasn't eaten in over two weeks and I can actually sit next to her and hear her stomach growling, while she keeps asking me for something to eat. I brought this up with her daughter, but her daughter is adamant about keeping her NPO so she won't aspirate. But why not respect her wishes and give her something to eat if she's going to die soon? If she aspirates, what's the big deal? She is already in declining condition. If anyone has some insight or life experience on this one I would really appreciate it. This has been bothering me for a few days now

[Glycerine82, LPN]

Shortly prior to death a lot of people ask for something to eat (and don't eat it), state they're going to die and have a burst of energy. I wonder if that's whats happening here?

My Dad just passed away in May. He asked for something to eat and I got it for him. We allowed him to try to drink and eat whatever he wanted, which included him spilling about 20 cokes all over the place. (That was his thing - cold Coke, in the can... so we let him do it but he kept having muscle spasms and dropping it)

The family should allow her to eat or drink whatever she wants, or at least attempt it, i'd involve the social worker.

[ChryssyD]

People use denial of food and water as torture techniques. Refusal to provide food or fluid to someone requesting them could easily be considered cruel and inhumane. I realize that sometimes (severe kidney or cardiac disease, for example) patients have to be denied such basic comforts as water, but that's to keep them alive; if this woman is on hospice care, her comfort should supersede her swallowing disorder. I doubt the patient has a living will that specifies rejection of PO, rather than IV or NG/GT nutrition/fluids; most people don't say "let me starve or die of dehydration." It's one thing to put a tube in a patient who doesn't want to eat or drink; it's another thing entirely to deny food or fluids to someone who wants them.

You are right to be concerned about this. Please advocate for your patient--she should not have to suffer like this.

If there is some ethical entity you can appeal to, I would suggest you do that. Denial of something as basic as food or fluids is just cruel and there's no way around it--even if she can only ingest tiny amounts, that would be better than nothing.

[KiruEsq]

I have to agree with most of the responses in this thread; from a legal standpoint if none other. A POA does not permit any unconscionable action. The denial of comfort in this instance would, in my opinion, be considered unconscionable. I would seek out your management for their official policy which was undoubtedly devised under consult with a lawyer.

Even if your company's policy states that denial of comfort is acceptable, please be aware you still stand the risk of personal legal responsibility if you further that policy by any egregious action or inaction on your part.

[blackmamba123]

Is she really concerned about her aspirating or is she trying to hasten death? Sorry for my crudeness, but this daughter has to be aware that keeping her mom NPO without an alternative route for nutrition will result in death.[/quote']

I was thinking the same thing. Could be money involved? Or maybe not even malicious---but just wanting to end the suffering. Maybe even exhaustion with the caregiver role that she's had to take on.

[nutella, MSN, RN]

"now on hospice. Her condition rapidly declined after she broke her hip and had surgery. She has severe dementia, is incontinent, and is very weak and bed-bound at this point."

There are several things - perhaps it will help you in sorting things out for yourself as well as reconciling what is going on. Of course, the information we have is very incomplete and this is just based on the general problem that I encounter frequently.

1. What is the medical situation? The pat has dementia and fell - broke her hip. It is very common that dementia and general functional abilities decline more rapidly when somebody with progressing dementia undergoes surgery. Hip fractures usually put the surrogate decision-maker in a difficult spot. Oftentimes, the surgeon will tell the health care proxy that if they decide against surgery, the patient will be bedbound and unable to ambulate because the fracture will be unstable. What is often not talked enough about is that although theoretically the patient should be able to get out of bed after surgery, it might not happen especially when the dementia was already progressed. What we often see after surgery for hip fractures in somebody with dementia is that they usually have a delirium in addition to everything else, are unable to follow commands or instructions, are unable to self-report pain or discomfort in the usual way, and often do not go back to their previous functional baseline. Perhaps somebody was able to swallow with a lot of cues - now after surgery the person fails to swallow.

If somebody cannot follow commands, is confused, disoriented, restless, often in unrelieved pain (because they cannot self-report sufficiently and staff is not trained enough and the MD only orders tylenol after hip surgery ...), and "combative" - the chances that they actually can work with PT and get out of bed are slim. And the longer they stay in bed, the slimmer is the chance the person will regain some functioning. Pain is a huge issue - and in somebody with dementia it might not be able to get them OOB or work with PT if the pain is not relieved. Only, that a lot of times families ask "not to give strong pain medication" because they are concerned about sedative side effects and so on - catch 22.

Now if somebody fails speech and swallow evaluation they usually get re-evaluated but if they remain unable the choices are to give artificial feedings through iv or tube or decide on a different goal for care because not everybody would want tubes and it does not makes sense for everybody. Of course decision making is usually complex and may be different for patients in other situation or with different goals.

In your example, the decision maker decided to change the goals for care to hospice care - which basically means that we focus on maximizing comfort.

2. What does hospice care / maximizing comfort mean?

Typically, it means to really relieve the discomfort because we accept in this case that the physician has estimated that the life expectancy is less than 6 months and any disease modifying treatments are not beneficial at this point. It comes down to evaluating if the positive trade-off of doing additional interventions and treatments (the burden of treatment) at this stage of illness and overall functional state will outweigh negative "side effects" and is goal congruent with a patient's wishes, preferences, values.

Example : if the patient in your example always said that she would never want to have a feeding tube and that walking is very important to her, that is an important consideration.

There is also the question "does that make sense?" - Let's say the family does not know much about the values, preferences and such. The patient has surgery, fails swallow and the MD tells them that they have to make a decision "where to go from here"

If somebody fails swallow eval because of progressing dementia, all research shows that a feeding tube does not prolonge life or increases the quality of life. First of all, the person will continue to aspirate saliva, which is a very contaminated fluid so to speak. Lots of bacteria in your mouth/nose etc. Even though you might be able to give fluids and nutrition, the person will continue to get pneumonias, which are infections and of course cause other problems.

If somebody cannot eat and drink especially with dementia, the decision against a feeding tube basically by default means hospice when the patient is hospice appropriate. The reason is that even if we accept that death is the natural consequence of the progressing dementia that has caused other problems, we do not want the person to suffer in the dying process and we want the support to relieve symptoms and for psycho-social companionship.

3. Ok - but what about eating???

This is where it often gets complicated.

Most healthcare proxies decide against a feeding tube in progressed dementia because there is no evidence that it prolonges life when the cause for the not swallowing is the progressed dementia. If it prolonges life is some cases you worry about the quality of life - patients with progressed dementia tend to pull out the tube.

When somebody is on hospice, and the goal is to relieve suffering and to relieve symptoms we allow for "comfort feedings". It is very unusual for somebody with progressed dementia to ask for food. In most cases, the person is not hungry or thirsty because the body/brain forgets those things (which causes the other typical problems in progressing dementia...). But if the person would like to eat/drink they can have pleasure feedings while on hospice. With a risk of aspiration it is a bit of a judgement call of how to proceed - sometimes a sip of thickened fluid or some ice cream or mouth care is all that is needed to make a person more comfortable.

If somebody is generally restless through and more on the agitated side there can be other reasons for that (besides being hungry). Pain is always a concern for people with progressed dementia who have undergone hip surgery. They may not be able to verbalize their pain and it can be expressed through aggression/ restlessness, crying out etc..

Obviously, somebody who is restless agitated is not comfortable and hospice usually addresses those symptoms.

4. What to do?

Since the patient is admitted to hospice, hospice directs the care plan and provides all guidance for patients and families. You should reach out to the hospice case manager and if after hours or nights/weekends call the on call nurse. Share your observation and concerns with the hospice case manager nurse.

Oftentimes, the family need additional education and support to manage ok at home. Perhaps they do not know how to do pleasure feedings safely and need some hands on demonstration by the hospice nurse. Perhaps they did not report symptoms to the nurse and you reporting the symptoms will prompt the nurse to come out and address the restlessness / asking for food. Perhaps they do not understand to give medication scheduled to make sure the patient does not have pain.

By sharing your concerns with the nurse, you can talk it through and get some more input. The patient may not be able to get OOB despite surgery but then there needs to be a plan in place to deal with restlessness/agitation through medical and non medical interventions.

Perhaps the patient aspirates and coughs to badly that the family is scared to death to try pleasure feedings because they have seen the patient choking before.

When I worked home hospice, I was always grateful for CNAs reaching out. It is a team effort to help families to take care of their loved ones at home.

Sorry it is hard for you - hopefully you can reach out to the case manager and get some support.

[Jory, MSN, APRN, CNM]

If she aspirates, what's the big deal? (

I'm sorry, did you really just type this? What is the big deal? Is this the way you would want to go? Gasping for air and not being able to get it? Let's just get her a Big Mac so nobody has to watch her suffer.

[MunoRN, RN]

I'm sorry, did you really just type this? What is the big deal? Is this the way you would want to go? Gasping for air and not being able to get it? Let's just get her a Big Mac so nobody has to watch her suffer.

I think you're confusing choking with the type of aspiration that typically occurs in dementia patients, which is particulate aspiration.

Dysphagia is not uncommon in dementia patients and the aspiration pneumonia that often results from it is a common cause of death in those with dementia. When the decision has been made to allow natural death, which is often reasonable in patients with dementia, then aspiration pneumonia is often the specific symptom of the disease that causes death. As for what it's like to die from aspiration pneumonia, pneumonia in general has traditionally been referred to as the "old man's friend" because as far as dying goes it's not all that horrible.

[NuGuyNurse2b]

As for what it's like to die from aspiration pneumonia, pneumonia in general has traditionally been referred to as the "old man's friend" because as far as dying goes it's not all that horrible.

The proverbial "friend" part is to mean that it often accompanies the geriatric population's death; it does not mean that it's a peaceful "friendly" death.

[MunoRN, RN]

The proverbial "friend" part is to mean that it often accompanies the geriatric population's death; it does not mean that it's a peaceful "friendly" death.

That is actually what the term traditionally refers to, usually in reference to someone suffering from another more agonizing chronic and/or terminal illness.

The term was coined by Sir William Osler in a textbook he wrote where he described pneumonia as the "old man's friend" because it provided for a "quick, relatively painless death".

More recent use of the term keeps the original meaning:

"Pneumonia used to be called "the old man's friend" because it often brought a fairly swift and painless end to a life that was already of poor quality and would otherwise have continued to decline."

No diseases for old men | Opinion | The Guardian

"Pneumonia is called the old man's friend because, left untreated, the sufferer often lapses into a state of reduced consciousness, slipping peacefully away in their sleep, giving a dignified end to a period of often considerable suffering."

Why is pneumonia called 'the old man's friend'?

[JKL33]

I'm sorry, did you really just type this? What is the big deal? Is this the way you would want to go? Gasping for air and not being able to get it? Let's just get her a Big Mac so nobody has to watch her suffer.

A concerned CNA and new RN has posted this scenario - - which most certainly is the ethical dilemma that s/he believes it is! No snark required - and isn't it great that she has recognized the ethical dilemma and come here to learn more about it? The (rhetorical) question you responded to is, actually, THE question at the heart of this matter: Is it that bad that someone may eventually develop an aspiration pneumonia at the end of life - and is it indeed such a "big deal" that we should deny the food that is being practically begged for?

Deny food that an EOL patient is repeatedly asking for vs. risk of aspiration pneumonia.

I'm not certain why that riled you.