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?

[pennyaline]

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?

Yes, but why? Why bother once the extent of the condition is known AND it is known that the patient wants nothing done to extend life?

Moreover, it is possible that the obstinate caregiver would reject the specialist's conclusion and seek second and third opinions to support his own assertions, move the patient to another hospital, etc (it's not as though none of us has seen this syndrome before, after all). At that point, it's all about what the caregiver wants and the patient may as well not even be there. Also at that point, the third party will have stopped paying.

[Ayvah, RN]

Your brother was in shock, was unprepared for this, and had great difficulty with this. He cared for this person for a while and to suddenly lose someone you care about would be terribly hard for any of us. Your brother sounds like a good man on the inside who tried to work through an unexpected situation to care for her until the end.

I do agree with most of the posts here. Healthcare workers see this type of shocking situation happen a lot, and they understand what this means for the patient. They are there to help the family try to see things from the patient's perspective, and try to help them understand what is likely to come next. None of us were there as 3rd party unbiased observers so none of us can really say what did or did not happen. I'm sure the docs have a completely different version of the story than what your brother presents, for example. However, from working with patients and families who have gone through this, (such as Leslie), we have see things about the dying process that sometimes the family has not thought about yet or does not know or does not understand. Sometimes bluntness is in order especially when time is of the essence.

I'll give you an example. I have a very young family member who unexpectedly went into the hospital. One of the doctors told my family that she could have a stroke or a heart attack at any moment. Months later, in a conversation, I found out that my family hated that doctor for putting things on the line like that so bluntly. However they stated that they now understood why the doc was so blunt, and that it wasn't that he was being un-compassionate, but that he was trying to prepare them. They stated that they therefore now realized that they liked that doc the best because he was so straightforward with them, even when the truth hurts.

The truth is that CPR is very violent, and ribs breaking is common (many people do not realize this). The truth is that your brother's friend had terminal cancer, and while it was your brother's right to state he wanted surgery, the other doc did good in reminding your brother that if surgery did give any additional time to her life, he needed to assess whether or not adding the pain of surgery was what the patient really wanted. The truth is, that hospice consists of experts on dying, and the family care and pain control that goes with it. The staff knows this and that is why they were trying to have your brother agree to it. Not because they wanted her to die, but because they knew she was dying and wanted to give her as pain free and dignified death as possible. They were trying to advocate for her. The truth is that this situation was shocking and extremely difficult to your brother who had kindly cared for this woman for years, and that is understandable. It is a terrible time but the POA must try to work through the ineveitable disbelief in order to think about what the patient wants, and what is best for the patient. The truth is, when a patient comes into the hospital, while the family is important, it is more important what the patient wants, and what is best for the patient. The truth is, becoming a POA means fully understanding the patient's wishes, including that she had a living will, and talking to the patient about if they do or do not want "everything done" including measures such as surgery would could be deemed as futile. POAs must be prepared at any moment to deal with a situation like this with all information in hand. Your brother did make a mistake as he did not know where the living will was at first, and he apparently didn't know what it said (that she did not want to be intubated). He accepted the job of POA but was unprepared to do it. This is all the more reason why these conversations about death needed to be discussed in length, in great detail, with our parents, our grandparents, our spouses. Denying death exists only leads to more pain when it does inevitably come.

I hope you and your brother can come to peace with what has happened.

[missninaRN]

I've only been in hospice nursing for 2 months, but one thing I know for sure is that terminal cancer is painful; controlling the pain of terminal cancer patients is one of the greatest challenges of comfort care.

The fact that the POA didn't want the staff to "overdo it" and wanted the pt to still be awake enough to be conversant tells me that, if he got his way, this patient died a needlessly painful death. That was terribly unfair to her.

I find it disturbing that the ability to give her a good death was offered but rejected by the person with the authority to make decisions in her best interests. I'm afraid that, if I had been a staff nurse at that hospital, I might have shown my frustration with the POA too.

[burberrylover]

Again, thank you all for your thoughts and insights. Many of you are right....none of us were there to see what happened. All I know is what my brother told me and I know him as a credible person. So,I tend to believe him.

After reading some of the posts and having a deeper understanding as to how things work, I guess I can see what prompted the caregivers' ugliness. Still, acting on that rudeness was unprofessional. Two wrongs don't make a right. In past careers, I have had to keep my mouth shut when I disagreed with a customer or a superior or whatever.

I hope my brother's friend was not in too much pain and that people might stop to remember that he cared for this lady for 14 years and gave her a happy life, something that no one else-even her own family-was willing to do...

[leslie :-D]

After reading some of the posts and having a deeper understanding as to how things work, I guess I can see what prompted the caregivers' ugliness. Still, acting on that rudeness was unprofessional. Two wrongs don't make a right. In past careers, I have had to keep my mouth shut when I disagreed with a customer or a superior or whatever.

while your brother described the behaviors as ugly, i'd be curious to hear how the nurses/doctors described his behavior.

what he sees as "ugly", someone else may see as righteous or assertive.

as to you having to keep your mouth shut when disagreeing, nurses are supposed to advocate for their pts, often needing to disagree w/those involved with pt care.

who knows?

maybe it was clearly charted that pt didn't want any extraordinary interventions, and so, nurses/staff became visibly frustrated when they weren't honored.

we just don't know.

and quite frankly burberry, neither do you.

i'm just glad it's over, knowing your brother's friend is no longer trapped in a crippled bodyform, and is now free to dance with the angels.:balloons:

leslie

[WarmBlanket]

Again, thank you all for your thoughts and insights. Many of you are right....none of us were there to see what happened. All I know is what my brother told me and I know him as a credible person. So,I tend to believe him.

I hope my brother's friend was not in too much pain and that people might stop to remember that he cared for this lady for 14 years and gave her a happy life, something that no one else-even her own family-was willing to do...

burberrylover : both you and your brother seem to be caring and helpful and the world is a better place when kindness is a priority and not reserved for special occasions. Although my previous post was critical towards your brother it only reflects my opinion of the event you mentioned. His friend was blessed to have someone who cared for many years . I hope the last days of her life do not cloud his perception of the time that they spent together .

In the frenzy of the moment it can be hard to sort things out . but as time goes by the importance of our actions is revealed . My best wishes to the both of you .

[burberrylover]

while your brother described the behaviors as ugly, i'd be curious to hear how the nurses/doctors described his behavior.

what he sees as "ugly", someone else may see as righteous or assertive.

as to you having to keep your mouth shut when disagreeing, nurses are supposed to advocate for their pts, often needing to disagree w/those involved with pt care.

who knows?

maybe it was clearly charted that pt didn't want any extraordinary interventions, and so, nurses/staff became visibly frustrated when they weren't honored.

we just don't know.

and quite frankly burberry, neither do you.

i'm just glad it's over, knowing your brother's friend is no longer trapped in a crippled bodyform, and is now free to dance with the angels.:balloons:

leslie

While we are not certain that the medical staff meant harm, we are not certain that they did not mean harm either. It could go either way. I do think an apology for their behavior is called for and hope that my brother gets it. Those nurses were the professionals here and more should have been expected from them. I know that ,as a future nurse, there will be times that I will have to be quiet and do my job. That is life. Snidely calling my brother a "candleholder" and sharply handing him a piece of paper with the name of the local funeral home printed on it was not advocating for a patient in a positive or helpful way. All I can say is that if I had been there to witness that, I would have raised holy hell.

I am glad that the end came as well. I mean, I don't want anyone to suffer. I can tell you that after the emergency surgery and once the LW was clarified, there were no heroics after that. She had adequate pain meds. Everything was on the "up and up" so to speak.

And yes, Leslie, I am hoping to is dancing with the angels...I do, however,take offense to your description of her as a person "trapped in a crippled bodyform". She was more than that....she was a person who loved children and animals, enjoyed trips to the beach, had a friendly smile.... she was truly more than just her CP.

[leslie :-D]

I do, however,take offense to your description of her as a person "trapped in a crippled bodyform". She was more than that....she was a person who loved children and animals, enjoyed trips to the beach, had a friendly smile.... she was truly more than just her CP.

maybe you should chill a bit?

no offense intended at all....

nor will i explain myself.

take care.

leslie

[zamboni]

Those nurses were the professionals here and more should have been expected from them. I know that ,as a future nurse, there will be times that I will have to be quiet and do my job.

As someone earlier pointed out, the job of a nurse is often to speak up and advocate for the patient...even sometimes putting one's butt on the line for that patient's best interest. It's not like a retail job, where you have to put up with unreasonable customers because "the customer is always right". It's possible (since none of us were there) that they were attempting to lessen their patient's pain and suffering. You don't just shut up and accept that when it's your patient, just to pacify a family member's discomfort with grief. Sure, it can be handled in different ways, some good/some bad. But in an emergent situation, you advocate for your patient. Period.

One thing that I can't get out of my head. You say the patient's Living Will wasn't found until after her surgery. Since your brother was her caregiver for so long, surely he knew where the document was kept. It's quite sad that it took that long for the document to be found.

I'm sorry also that you have been involved in this situation, and that your brother is grieving for his friend. But I am glad that she is no longer suffering. And make no mistake, she was suffering her last days.

[NurseLoveJoy88, ASN, RN]

once again how do you know how your brother was treated not being there. Is it possible that his preception was a bit off due to the stress of the situation?

Last week I had to call the POA of a patient to let her know that the resident her dad was found without vital signs and unresponsive. I told her when I did my rounds that was my assessment and she immediately became hostile at first and asked me "what have I done "? I believe I showed the upmost compassion in breaking the news to her but the stress and the news she heard was too much and she thought she heard something she didn't hear. She percieved me checking on him as detrimental and asked me what have I done?

All I'm saying is that it's all in how he perceived what the hcp was communicating.

[questionsforall]

I work in the MICU where unfortunatly I have witnessed many patients who have suffered much longer and through more hopeless procedures than anyone should have to suffer through.

These are my responses to your original post:

1. Until you are a nurse and witness these situations day in and day out and watch the patient suffering then you may not understand the perspective that the nurses and doctors in this situation may see things. I did not fully comprehend this while I was a student and as a new graduate nurse. What I have learned is that family members and friends when they are in denial and when they are angry (because their friend of family member is dying), will focus on the things that they can control. I have been in situations where me and my coleagues have been nothing but kind to family members and have gone out of the way to help them with their impending loss, but they still get angry with us and feel we are not doing everything we can for their loved ones. They are angry with us because we are their and because sometimes it is easier to complain about us and the things we do and say instead of accepting that their loved one is dying. As a nursing student you learn about the stages of death and dying and how to deal with them, but it never works out the way the book says it will. You learn with experience.

2. I have seen patients being denied pain medication because the family wants them to be awake to communicate with them even if it means the patient should be in pain. Patients being intubated and extubated multiple times. Patients being stuck one more time for another central line or another catheter for CVVHD. We have done CPR on patients with cancer with metastesis everywhere (after they have been on pressors for days) becuase the family wants that done. These people will never leave the ICU and for some that is alright if their wish is for everything to be done. However, I have only heard so many times from patients that they just wish they were home. Hospice can give that peaceful death at home in comfort to these patients, but it is so rarely what these patients get. It is sometimes difficult when we have to deal with families and friends who want to do everything for their loved ones even though we know as health care professionals that it is not what is best for the patient. For myself, if I had the choice, I would want to dye at home in comfor, surrounded by my friends and family. I would want that for all my patients.

3. It sounds like your brother really did care for this women. It sounds like he is going through a difficult time losing her. The best thing you can do for him is be their for him and listen. Do not let him focus on how he feels the other people are treating him, but how he should spend his last moments with and memories he may have had with her.

4. I would like to leave you with two quotes from Elisabeth Kubler-Ross (the expert on death and dying): Those who have the strength and the love to sit with a dying patient in the silence that goes beyond words will know that this moment is neither frightening nor painful, but a peaceful cessation of the functioning of the body.”

" I say to people who care for people who are dying, if you really love that person and want to help them, be with them when their end comes close. Sit with them - you don't even have to talk. You don't have to do anything but really be there with them.”

[nursel56]

Hi Burberry--

Just a couple things- I know you've already seen a lot-- first, it seems that you feel the staff treated the woman as if her life was worth less than an able bodied person with the same diagnosis, which is something that a lot of people fear. I work with a family where all but 1 have the same chronic degenerative disease. I can honestly say that the majority of healthcare professionals see them as an INDIVIDUAL who also has a disability. There is just a gigantic spectrum of cases.

Two surgeons sat down to talk to your brother, while I wasn't there, that action indicates to me that they did care to make sure your brother understood the prognosis, and since she died two days later it seems unlikely they just felt a person with CP didn't have the same right as anyone else when it comes to quality of life.

I am wondering, did your brother's friend have a Primary Care Provider? Did she have regular contact with that person? Having a really good proactive PCP is the best ally a person such as your brother's friend can have. I feel so much empathy for your brother. No doubt he is kinda shell-shocked at the moment-- it all happened so fast. As everybody else has said- the outcome was not in doubt. Hope he gets some help with the grieving process and best wishes to the both of you.