Please read and tell me if this is wrong

[chenoaspirit, ASN, RN]

I have a patient who is dying....not due to illness but due to the family's choice to withdraw IVF's and TF's. She has been hanging on for almost 2 weeks like this and Im really having a hard time with it. From the beginning.... this patient was at home, getting ready for church when she fell and broke her ribs while getting dressed. The ribs pierced her right lung and it caused a pneumothorax (actually a hemo-pneumothorax). She was admitted to ICU, had a chest tube, was intubated, and a PEG was placed for tube feeds. Later was extubated and a trach was placed. She is now able to breath on her own, with O2 sats in low 90's with O2 via trach.

After months in ICU, fighting for her life, now her family is allowing her to die. She was admitted to the floor and was placed on hospice. They want her to remain sedated with Ativan or Dilaudid. Last night everytime she moved, the son wanted her medicated. I did. I wasnt happy about it. At one point later in the night she opened her eyes and was looking around the room, instantly the son again her medicated. He said she was hurting. But he couldnt decide which med he wanted administered...Ativan or Dilaudid (both are IV). Now this patient has a PICC, with NO IVF's going thru it. I told him that Ativan and Dilaudid are two totally different medications, and asked him why he wanted her medicated. He said that she is dehydrated and is sure she is hurting because of it. He then said "IM NOT DOING ASSISTED SUICIDE!" Of course I assured him that I was not infering that he was. This son seems so loving though, loving on her, kissing her, talking to her, etc. I really do think he loves her, but I just dont understand.

Her husband couldnt sign her to hospice, he sat and held the pen while staring at those papers and just couldnt do it. So the son did it. The husband sat by her side day and night prior to hospice consult. Now his heart is broken and the guilt is keeping him from her. I guess my question is...is this legal or ethical? I mean is it ok to keep nutrition and hydration from a patient. Her illnes isnt killing her, the neglect is. I dont like this situation and feel guilty for starving her like this. Her urine output last night was only 100 ml's and her bp is now dropping. She is only 65 years old. What would you do? :cry:

Oh, also, the son says that she has Alzheimers and her quality of life wouldnt be good if she were to live through this.

[barefootlady, ADN, RN]

I will pray for you and the patient and her family.

[caliotter3]

If you do not agree with the behavior of the family and think this patient's rights are being violated, then you should bring this up to your supervisors and the ethics committee at the hospital. Another person to talk to about this is the lady's physician. Unfortunately, by the time anyone acts, it will probably be too late.

[megananne7]

I'm a new nurse, so forgive me ... but isn't 65 a little young for Alzheimers? At least Alzheimers that is severe enough that her "quality of life wouldn't be good if she were to live through this." ?

But I can definitely understand how this situation would be very difficult. I'm sorry you have to go through this

[Miami NightNurse]

I never feel comfortable with that situation either or the Morphine Drip route. I guess because we are nurses we want to save people not let them die. Why did they let her go through all that to save her and now decide that she has no quality of life????

[justme1972]

I'm a student, but my first question...can a son legally sign a parent to hospice with a living spouse that is mentally competent?

Does anyone know? My first thought was no.

We were told that hospice is about comfort, not getting better or survival. I remember when the Terri Shirvo (sp) case came out...I too, thought it was extremely barbaric to just stop nutrition/fluids, but then I read where drugs were administered for maximum comfort, plus your own body produces it's own anesthesia.

Even an anorexic will tell you...the hunger pains just stop after awhile.

I think you are doing the best you can with a difficult situation. Just because HE labels it an assisted suicide, what you are doing is legal, ethical, and the fact you care enough to post says alot to me, about how you are as a nurse.

[deeDawntee, RN]

Oh my God, this has to be one of the most brutal, horribly mismanaged situations I have ever heard about. I am sooooo sorry that you are having to deal with it.

Is there an ethics committee in your hospital? Of course, they won't be able to correct the mistakes in this situation, but perhaps would be able to educate the Doctors involved. It REALLY concerns me that the husband does not seem to be in agreement with this situation. Does the pt have a HCD or POA? WHy is the son bypassing the husband's wishes??

I agree that keeping this woman sedated and pain free while she is dying of dehydration is the kind thing to do. How "with it" is she? Did she have a say in this at all?

You are powerless to change this situation. But to assure that nothing illegal or grossly unethical was done, I would certainly contact your ethics committee. You can do it anonymously. That is really the only power you have. Please don't let this eat at you, get the support you need to get through it. Is your manager someone who you could talk to about it? Take care, my thoughts and prayers are with you.

[jmgrn65, RN]

I just can't help but wonder if there is more to this story. What are the doctors saying. I can't believe that a physician would order hospice for a vialble patient. That part doesn't make sense, and especially if the husband isn't on the same page. Docs are too afraid of lawsuits.

Now that being said, I would contact the ethics committe and have them look into this, something isn't right or we don't know the whole story.

[talaxandra]

This sounds like a complicated situation, and you're clearly distressed by it. There are a couple of elements involved here - the first is withdrawal or withholding of therapy in general, and the second is whether that's appropriate in this case.

Withholding fluids and nutrition is ethically contentious. We associate eating and drinking as integral to basic care and therefore different from more extreme, invasive or extraordinary measures. For this reason, decisions not to hydrate or feed a patient are often seen as being cruel or ethically wrong.

There is research which supports the position that withdrawing parenteral hydration does not, as one might imagine, leave the dying patient feeling thirsty and uncomfortable, providing regular oral care is performed and (if the patient wants to and is capable of it) sips of fluid or ice is provided as required.

Similarly, people who are seriously ill or dying often feel actively disinclined to eat and are not hungry. In fact, food (whether solid or enteral) can cause discomfort and nausea.

Nasogastric tubes can be uncomfortable and distracting, even for sedated patients, and intravenous access needs resiting. Patients who are confused or restless can dislodge either, necessitating reinsertion and even sedation to prevent removal. In patients with poor access, repeat cannulation is thoroughly unpleasant.

Decisions about withdrawing (or not initiating) parenteral fluids and parenteral or enteral feeding is therefore (ideally) made like all medical decisions, on balance - are the advantages of therapy outweighed by the disadvantages? If the patient has good prospects of recovery then short term discomfort and a low risk of complications (or aspiration, phlebitis etc) are worth the long term benefits. If the patient has a poor prognosis and is going to be distressed by the therapies themselves or the consequences of therapy (eg longer life in more pain or discomfort) then hydration and/or feeding may not be in the patient's best interests even if this means her dying faster.

In the case of your patient we already know she has a PICC in situ, so issues around the discomfort of cannualtion or replacement are not a factor. So the question is - will hydration and/or feeding result in her survival?

For some people physical survival in any form is satisfactory - there's a case on Medscape (http://www.medscape.com/viewarticle/408015) of a man who wanted absolutely every intervention, regardless of how poor his prognosis or moribund his condition, and he's not alone.

However, other people are very distressed at the idea of surviving 'unintact' - while what constitutes an acceptable level of function will vary depending on the individual, the fact remains that for some people survival is worse than death if it means being intellectually impaired to a certain degree, or quadra/paraplegic, or demented etc.

You haven't given any information about your patient's medical history, so we don't know anything about co-morbidities that may be contributing to her prognosis, and it doesn't sound as though you're clear on wheether or not she does have Alzheimer's or to what extent this has affected her mentation. Most importantly, we have no idea what her wishes were about medical intervention.

My suspicion is that, if it took her months in ICU to recover from a rib fracture and resulting haemopneumothorax, she wasn't a great 65 to start with - either she experienced significant complications or there were some underlying issues.

Although I'm not in your position, I have cared for a number of patients in similar situations. I lie on the "my life is valuable if I can function in it" end of the spectrum - I think age is less important than prognosis and discharge condition and location. My level of comfort in caring for this patient would depend on what I thought her prognosis was (is her son right? How likely is her survival with full intervention? What kind of life would she be leaving with?), how her family seemed (are they genuinely concerned or do they seem to be more interested in any benefits of her dying?), and any information about what her choice was. For another nurse the salient elements would be different.

From what you've reported it seems as though her son does care for her, which is not incompatable with not wanting to prolong her life. Similarly her husband's hesitation to sign hospice paperwork does not necessarily mean that the decision to palliate is wrong - it may mean that he's conflicted. It can feel as though, by making that decision (even if it's the only decision to make), he's condemning her death, even if her death is inevitable. Guilt doesn't equal culpability.

I hope this helps.

[BrokenRNheart]

Good education about the meds is important. When I worked in hospice it was in it's early stages during the transition with the police and EMT's allowing us to do this in the homes.

Often times palliative services comes in hard and strong about sedation and wants to keep the patient obtunded until they pass. I think things went to far to the other extreme and quality of life has been forgotten.

I really don't know enough about your patient to answer this, but I am assuming that she has some level of consciousness to maybe be able to visit with her family, say goodbye or even state what she wants. They are keeping her sedated for??? Is it severe pain? Is it so she doesn't become awake and know she is dying? Is she confused anyway? What is her prognosis? What are the doc's saying? Why dilaudid? Is she allergic to morhpine? PM me.

With the length of time that this lady has been in this condition, I personally would not put any more decisions on this family. It was hard enough for them to make this decision and you could really cause a lot of stress trying to change their thought process here.

If it were me, I would explain to the family that as long as she seems comfortable and is not anxious or restless that she may not need immediate sedation as soon as she moves or wakes up. But that is assuming that being aware and alert would actually benefit her. Explain to them how you assess if she is comfortable. There is a very fine line here at this point because they have decided to do this and I don't know the overall picture. I am posting this here for others but what I really have to say should be private so I will PM you.

If you think there are too many drugs offered, you can explain what their benefits are, what the consequences are and how to tell if the patient is comfortable and what would warrant another dose. Explain each of the drugs to them so they know what each one is needed for. Educating helps people make decisions. You can educate them without making them feel that they are doing the wrong thing. Make them feel that you are assisting them in being able to make the decisions and that you are not implying they are wrong or that you should be deciding. They will be very grateful with this information and you might hear them say that no one told them. Educating them on how to assess if she is comfortable and what she needs might also help them relax a little and allow her to stir or open her eyes without jumping on those meds. Dehydration and hunger doesn't HURT. It is a natural part of dying. As the terminal phases take their process, the patient or the body doesn't need or want hydration and food. I always made sure my hospice families knew that in the very beginning. It also helps to let them know that they normally can't metabolize food or utilize fluids any way. Extra fluids will end up in the wrong places as part of the natural process of systems shutting down. They are not suffering from dehydration or hunger.

Pain and anxiety are the two biggest issues. Most people are able to find a way to accept and cope with their final days. It is the families that have a harder time. If the patient is coherent and states that they do not want to be awake, then that is best for the patient. I always reassure that there is no right or wrong and this is a very difficult time with difficult decisions so they can try to relax about their choices and not worry about what they should do. Remember that after you educate them, it is their decision and let it go. Do what they ask and know in your heart and your mind that you are doing what is necessary.

I will PM you now.

[SuesquatchRN, BSN, RN]

Why on earth would her son be dictating with what you medicate her?

I do not have problem with letting someone go. I worked in LTC and we keep far too many people alive for far too long.

I would, though, talk to someone about your own discomfort with the situation. Which is what you are doing here.

:)

[leslie :-D]

a doctor must have given her a prognosis of 6 mos or less, to live...

otherwise she wouldn't have been eligible for hospice services.

granted, pts can and do, get recertified over and over again, as the illness lingers...

alzheimer's is a terminal disease.

if she fell at home, i'm willing to bet her alzheimer's is later stage, and she can no longer safely care for herself at home.

i've had too many of these type pts.

and i too, would be curious to see other comorbs.

i'm sure there is pertinent info missing from this story.

i remember the first time i had to stop enteral fdgs.

first thing i did, was to make sure it was legal...

and esp in these type cases, where cognitive decline is the catalyst for death, there are certainly ethical considerations...

many alzheimer's pts end up w/fdg tubes, after they've lost their ability to eat and swallow.

and they deteriorate until remaining functions (no matter how primal) has finally crumbled.

i don't know what is more unethical-

withdrawing fdgs at this stage, or watching someone's mind, soul/spirit steadily die, with only a shell remaining.

tough call, for sure.

leslie