Medical staff rude to my brother;complicated;advice please

[burberrylover]

This past week was a difficult one for my brother. After caring for a lady with cerebral palsy for 14 years(She lived in), she died. It started on the 21st when he brought her into the ER due to stomach pain. After doing a scan, it was determined that she had terminal cancer and had to have surgery to assess/remove the tumors.

Before the surgery, two surgeons sat down with my brother(who had POA). One doctor was fine, explained the procedure and was very compassionate. The conversation with the other doctor and my brother went like this:

Brother: I want everything to be done for her.

Doctor: You have to think about her quality of life (He was referring to the fact that she had CP and that if she survived the surgery, her life would not be that great anyway)

My brother took offense to this as he felt that her CP should not matter and that the best care should be offered.

The same doctor also raised his voice to my brother when my brother requested that CPR be done if needed, telling my brother that her ribs would most likely be broken and "did he really want that to be done to her?"

Anyway, she made it through the emergency surgery. The doctors and nurses began to pressure my brother, telling him to call hospice as she was terminal. This was on the 22nd, a Sunday, He said that he would call but that he wanted to see an oncologist about her prognosis first. He knew that she was terminal but just wanted these questions answered. He also wanted her to have pain relief but not so much that she could not communicate.

On Monday the 23rd, the breathing tube was removed( her liviing will stated that she did not want life support). By this time, one nurse in particular was acting in a very odd way. Two examples a) A doctor noticed that the lady's oxygen had been removed and the nurse told the doctor that my brother requested that it be removed. He did not. and b) When they transferred the lady to another room, the nurse grabbed the wheelchair away from my brother and said, "I will push the wheelchair and you can be the candleholder". Now, I am not a nurse yet and maybe that is nurse-ese for something, but that comment just sounds off.

By Wednesday the 25th, she was still hanging on. My brother had still not seen the oncologist. Doesn't this seem weird? She has all of these major tumors but an oncologist could not swing by? So my brother stays with her and comforts her. He has still not called hospice. At 4pm, the social worker from the ICU floor rudely hands my brother a piece of paper with the name and number of a local funeral home on it, shakes her head and says in a snotty tone,"I am leaving. Call this number if you have issues. It's too bad you could not have called hospice" . My brother's friend died about four hours later.

I feel that the the first doctor, the nurse and the social worker acted inappropriately. Can I please get some insight from all of you? Were these people acting normal in their world?

[Junebugfairy]

originally posted by burberrylover

"i never said he wanted pain medication to be limited so that she would suffer. must a person be unconscious on pain meds for them to work?"

"sometimes, yes. sorry, but that's the way it can be depending on the pain severity, a person's tolerance to medications, etc"

:yeahthat:

the patient has every right to have adequate pain relief, even if said pain relief causes sleep/unconsciousness.

your brother's statement about wanting the ability to communicate with the patient shows a certain level of selfishness and denial, and this is very frustrating to doctors and nurses. is it really in the dying patients best interest to be awake if severe pain is suspected?

terminal cancer is just that, terminal cancer. no cure, no chance of meaningful recovery. attempts at treatment would be painful, futile, and would only prolong the agony.

death is natural, everyone is going to die at some point. the very best thing we can do is ensure that death is dignified and painless. multiple painful surgeries, cpr, etc, is not painless or dignified for a terminally ill patient.

[cardiacmadeline, RN]

It also seems that the HCP's involved could have done a better job in educating and speaking with this PT' caregiver. I don't disagree that this PT could have had a much more peaceful end, but that might have been a possibility if someone had sat down and really talked with this Pt's caregiver instead of just displaying frustration with his decisions.

Yes, I agree. I believe there should have been some kind of care conference prior to surgery with the doctors (a hospitalist, surgeons, and perhaps an oncologist and a social worker). I don't believe she should have ever had surgery being terminal. She should've died peacefully and comfortably with hospice. It sounds like everything happened so fast, I think your brother needed someone to sit down and speak with him honestly and straightforward about the options (surgery vs hospice care), so he could make an informed decision.

[Junebugfairy]

i am just a nursing student, but i have seen family members of patients refuse said "conferences", and want everything possible done no matter what.

i believe that we need a nation wide initiative to educate the public about death, and what having a terminal illness means to the patient as well as the family.

death has been a topic which has been long ignored in our society, i think it is time we talk about death.

[aileenve, ASN, RN]

This goes to show how staff demeanor can set the stage for miscommunication and bad feelings. I can see your brothers feeling he was not heard and wishes were not respected; however Drs and nurses look at objective as well as subjective facts, you also said she had a living will that prohibits a breathing tube (vent)...a vent goes with CPR; things happen so quickly sometimes that it is hard for families and friends to make these difficult decisons and puts the Drs and nurses in the middle...he could have asked for a patient advocate or an ethics committee consult.

[proudnurseRN]

I'm not really sure what your intentions are, but if it obvious that when you realized the majority disagreed with you that you became hostile and argumentative.

Who is being hostile? I did not say that I disagree or do not appreciate or insights. I have questions. My brother did, too. Having questions or concerns is not a sin.

"Most people when they come to you for advice, come to have their own opinions strengthened, not corrected." - Josh Billings

Your tone comes across hostile and argumentative to me. Maybe it doesn't sound the same to you. Difference of opinion.

[netglow, ASN, RN]

What Cardiacmadeline said!!

If this were a perfect world, all adults might have some sort of informational booklet to read when health is good, things are calm. End of life situations, what might happen and what you can think about and do ahead of time to make that transition go smoothly as possible. When things go bad, often there is no warning, and still, decisions are going to be hard. At least there might be some sort of basic common knowledge to start from.

People often think that there is complete pain relief that can be given without consequence. This is often not the case.

DNRCC is what the staff wanted for this patient. Actually, this probably didn't come across well, due to stress and the urgency we feel. Got to step back and begin that discussion in baby steps, then be firm. An extra few minutes to get your script down before meeting with the family can make all the difference. I've seen some docs do this well, some horribly.

I think it best to let people know when yes, pt. is struggling ...no, not putting up "the good fight" like people want to think.

[pennyaline]

To the O.P.:

I am very sorry that you are going through this. According to your own posting, you were not involved in what transpired, weren't there when it happened, and are not a nurse. With that said, I will add that I am especially sorry that your brother is putting you through this.

Yes, I said your brother is putting you through this, and it is terrifically unfair and unkind of him to do so.

You are giving us information that you received second hand and asking us to determine if it is fair. There is a reason that courts of law do not admit this kind of information (hearsay) into evidence. It is invariably onesided, and it's often impossible to peel off the embellishments and biases that distort the story at its heart. The more we try to be fair in our assessments using by now third hand information and provide the insight that you specifically sought from us, the more defensive you become. Meanwhile, where is your brother in all of this? He is the one that needs the insight delivered directly. He is the one who should be posting his concerns and questions here, not you.

Further, the information you provided to defend his ignorance of the lady's living will and advance directives is questionable. If she gave him her power of attorney, she must have expressed her wishes. It casts doubt on the veracity of the other things he's telling you...

...or should I say, the other things he telling you to tell us.

My advice is that you subtract yourself from this immediately. If Brother has questions, Brother can ask them in his own words. If he needs to defend himself, he can and should be made to do it himself.

[cardiacmadeline, RN]

he could have asked for a patient advocate or an ethics committee consult.

Nice thought, but how many members of the public know that these options exist?

[HeartsOpenWide, RN]

Yes, I agree. I believe there should have been some kind of care conference prior to surgery with the doctors (a hospitalist, surgeons, and perhaps an oncologist and a social worker). I don't believe she should have ever had surgery being terminal. She should've died peacefully and comfortably with hospice. It sounds like everything happened so fast, I think your brother needed someone to sit down and speak with him honestly and straightforward about the options (surgery vs hospice care), so he could make an informed decision.

The doctor did state that he did not think the surgery was appropriate. Granted Hospice should have been an option, the OPs brother did not even want to consider Hospice until the oncologist gave a prognosis; which is not really reasonable in an emergency surgery situation.

Before the surgery, two surgeons sat down with my brother(who had POA). One doctor was fine, explained the procedure and was very compassionate. The conversation with the other doctor and my brother went like this:

Brother: I want everything to be done for her.

Doctor: You have to think about her quality of life (He was referring to the fact that she had CP and that if she survived the surgery, her life would not be that great anyway)

My brother took offense to this as he felt that her CP should not matter and that the best care should be offered.

Some times the "best care" is not doing futile surgery, but accepting death so that a comfortable passing can start to be planned.

Yes, I find what was written to be very rude. My point is what actually gets said & what is the caregiver hears (both words and tone)is not always the same thing due to their stress with the situation.

I did remind my brother of that and he told me that it was said in the exact same way I wrote and in a nasty, sarcastic tone.

Considering that this entire story is told by the third person; some one that was not even there, I find it entirely possible that your brother may have though what he heard was rude because of the stressful situation he was in.

I understand that family members must be considered during the care of the patient, but so often the death of a person becomes about the family instead of the dying person. I do not work in this area so I do not see it much; but I am sure it makes medical staff see red.

[BigBub1000]

Your brothers friend had already expressed her wishes via her LPOW that she did not want heroic measures taken. Your brother had her prognosis discussed with him by an attending doc, who semed to be expressing the same thing that was in her living will- "she dosen't want to suffer if there is no hope of recovery..." The only activity of the oncologist may have been to look at her OR report and make a note on the chart that the patient is days from death and should be referred to hospice for comfort measures- from what you describe he wasn't involved in her care at all- there was no oncology intervention to be done. From all the staffs' perspective your brother was forcing them to make a terminal patient suffer unnecessarily because he refused to believe the information given him by the attending physician.

I'm sorry I'm not more on your brothers side, but honestly I have to feel for the poor woman who was put through a prolonged and painful dying process that was not her wish. When a family member won't listen to the primary doc and makes my patient go through more pain than they should, I have a hard time not being a little "brisk" myself. We live in a country where people expect every specialist to be at thier beck and call to explain the same thing over and over.

Specialty docs have gotten very busy and depend on the patient's attending physician and the nursing staff to do the teaching and condition updates if they are going to see and treat enough patients to keep thier practice open. If a specialist has time to meet with not only his patients but every family that is related to every consult he gets, whether he treats the patient or not, it isn't a specialist you want on your teem- no one is referring to him for a reason, and he has lots of spare time.

Wouldn't the specialist get paid for coming to the bedside? Not only would he speak with the family but he would also examine the patient. And that exam is certainly billable. Yes?

[wooh, BSN, RN]

I never said he wanted pain medication to be limited so that she would suffer. Must a person be unconscious on pain meds for them to work?

With cancer, quite often the answer is yes.

[leslie :-D]

Nice thought, but how many members of the public know that these options exist?

nothing wrong with ethics reviews except they take time to expedite...

something the pt didn't have much of.

besides, having the opinion of 2 doctors....shouldn't that suffice??

To the O.P.:

My advice is that you subtract yourself from this immediately. If Brother has questions, Brother can ask them in his own words. If he needs to defend himself, he can and should be made to do it himself.

penny, i shortened your response but wanted to tell you-

GREAT post.

leslie