When a patient is dying, am I expecting too much?

[ShayRN]

I had a family the other day that I really just felt bad about. The patient was only 50 and had cancer of the lungs. Two dgters and a few young grandchildren. You can just tell these people really didn't have much. However, the patient was dying, soon. As I got on shift she was still alert and terrified so I asked her if she wanted me to call the Chaplin for her. She nodded her head, eyes as big as saucers. After he left I went to check on her and one of the dgters was in the room. I asked her, where is your sister? She said, she had to go home to get her husband and children. (I knew they lived well over 45 minutes away.) I said, does she want to be here when you mom dies? She looked shocked that I said that...Yes, she said. Should I call her back? Well, yes, right away. An hour later I went to check on the patient and her dgter was leaving, again. I calmly walked over, checked her pulse (none) she had that shallow, ineffective breathing and her heart was bounding. I looked at the dgter that remained and said, did your sister go out for a cigarette? No, she said, mom is sleeping so she went home. I looked her straight in the eye and said, go get her, now. She said, well, you don't understand, her husband got paid today and they need to get the check. Ok, I do understand, really I do. But your mom is dying as we speak. She looked shocked. Ran out of the room and got her sister in the parking lot. They said to me, now what? Umm, you say good-bye. I pulled up chairs to let them sit beside her and stayed in the room in case they needed support in the end. She died with her dgters holding her hands 5 minutes later.

So I guess, the problem I have is this...Both daughters were told by me that mom was dying soon. Both girls knew early in the day that death was soon. No plans were made by them to get the spouse to the bank by a friend or another family member. No arrangements were made for a sitter for the youngest child (a baby that is not yet 1) So, he was in the room when grandma died. No funeral arrangements were made. WTH! When you have a Hospice nurse telling you, your mom is going to die, soon. FREAKIN LISTEN! Am I asking too much?

(OH YEAH! As a side note, when your told you have Stage 4 lung cancer with extensive mets and a cancer center tells you nothing more can be done. HERE IS A THOUGHT! Make some arrangements. Tell your family what kind of service you want. How about put a downpayment on something. THAT way, when you die at 7:30 at night your kids aren't staring at the nurse saying "We don't know what to do. We don't have a funeral home picked out and Oh yeah, NO money to pay for it.) FYI, I found out you can be cremated for 850.00.

[Altra, BSN, RN]

For people who live paycheck to paycheck with no cushion, getting the paycheck & cashing it on pay day is a central fact of their lives. There is no room for adjustment of priorities when your wallet is literally empty.

I know this was an upsetting experience for you, but it sounds like you expected the family to behave in the same way that you would, particularly your admonition, "you need to say goodbye." Not everyone processes death in the same way. "Saying goodbye" doesn't necessarily happen at the bedside.

[Katnip, RN]

I have to go with the majority. Yes, you were expecting too much from them. Perhaps when you had the daughter come back the first time, you could have suggested then that the other family members make arrangements for childcare, etc.

Also, the word "soon" means something different to everyone-minutes, hours, days. Maybe they'd been told the past few weeks that their mother was going to die "soon" without anything more concrete than that.

Please remember as nurses we frequently see death of young people a lot. Most others do not, especially when it's a mother who really is young. Families have a hard time dealing with this. My mother died at 46, and up to the very last, I really, really hoped she'd somehow come back to us. She died about 10 minutes after we left the hospital visit for the last time. I wish someone had said that they expected it to happen within the next hour or two. I really do.

[ShayRN]

OK, first let me clarify! I was NOT angry. Frustrated, but not angry. I had told the dgters twice that mom was dying and not to leave. Both had made it clear that they wanted to be there at the time of death, but then when I said come back it is going to be soon, she still left. I don't care that the baby was in the room, except that they kept walking away asking me to watch him for them. Also, he was frustrating his young mother more than comforting her. Maybe I should have put all that in my original post, but that is all part of my frustration over the situation. Sorry.

[DA314]

Sometimes people think they can delay the inevitable by avoiding it. I know someone who's mother was in a nursing home and the nurse called her and said "come now, your mother is dying." She was at the grocery store, so she finished her shopping, put her groceries away, loligagged around and by the time she got there, her mother had already passed. I think in her grief, she felt like not going would prevent her mom from dying. I know from the outside this seems irrational, but when we are dealing with something as traumatic as losing a parent, our brains don't always work in a rational way.

[pennyaline]

OK, first let me clarify! I was NOT angry. Frustrated, but not angry. I had told the dgters twice that mom was dying and not to leave. Both had made it clear that they wanted to be there at the time of death, but then when I said come back it is going to be soon, she still left. I don't care that the baby was in the room, except that they kept walking away asking me to watch him for them. Also, he was frustrating his young mother more than comforting her. Maybe I should have put all that in my original post, but that is all part of my frustration over the situation. Sorry.

I didn't say you WERE angry. I said you ARE angry. As you wrote your post, your anger was seething and it showed in your choice of words and tone of voice. Let's look again at the last two paragraphs of your original post:

"So I guess, the problem I have is this...Both daughters were told by me that mom was dying soon. Both girls knew early in the day that death was soon. No plans were made by them to get the spouse to the bank by a friend or another family member. No arrangements were made for a sitter for the youngest child (a baby that is not yet 1) So, he was in the room when grandma died. No funeral arrangements were made. WTH! When you have a Hospice nurse telling you, your mom is going to die, soon. FREAKIN LISTEN! Am I asking too much?

"(OH YEAH! As a side note, when your told you have Stage 4 lung cancer with extensive mets and a cancer center tells you nothing more can be done. HERE IS A THOUGHT! Make some arrangements. Tell your family what kind of service you want. How about put a downpayment on something. THAT way, when you die at 7:30 at night your kids aren't staring at the nurse saying "We don't know what to do. We don't have a funeral home picked out and Oh yeah, NO money to pay for it.) FYI, I found out you can be cremated for 850.00."

You have stated in your own words that YOU have the problem. You are angry. You are the Hospice nurse and you know what you're talking about and they didn't behave as though they took you seriously. And that last paragraph... oy!: they didn't do anything, they didn't make any arrangements, they didn't even find a baby sitter, etc, etc... If you are not angry about this and it wasn't an attempt to defuse, you must just be a terrible snot with a tendency to be sarcastic, demeaning, mean sprited and insulting toward patients and family members alike. Your last paragraph speaks volumes. So, how would you rather be perceived: as a skilled hospice nurse who needs to step back for a moment, or as an impatient, sarcastic little complainer with little tolerance for the needs of others? It's up to you.

You persistently blame the patient and the patient's family for being unprepared and irresponsible instead of accepting that they may have already done everything they could. You either have some grief work of your own to do, or you need re-schooling in the bereavement and grieving of others. Or perhaps you need to do both. But you certainly need to do something other than scourge the dead patient and her bereft survivors for what you think was "wrong."

[llg, PhD, RN]

Another thing to consider is the age and life experience of the daughters. By my estimation, they are probably in their 20's -- barely adults themselves. Their lack of life experience and common pattern of being "cared for" by their mother rather than having to "be the adults" and take care of things themselves could be a big factor in this.

How would they know how and when to pick a funeral home if no one ever taught them? etc. Not all people in the 20's have had direct experience with deaths in their families. Their parents' generation may have taken care of grandma, great uncles, etc. and they may not yet have assumed that care-giving role in their families.

Both of my parents died 8-12 years ago, when my siblings and I were in our 30's and 40's. We had to step up to the plate and make decisions, etc. -- It is a significant life transition and it sounds like these two young women were not well prepared for that by their mother. Don't be too hard on them. It can be overwhelming to lose a parent and we don't know the whole story of their family dynamics.

How old were you when your parents died? ... And how prepared were you at that time? As my Mom said when my Dad died, "You think you are prepared, but you never really are."

[pattymac]

As much I hate to admit this openly, I will share. When my father was dying, I was the only family member there. I knew it would be that day (a few hours only) and I sat there thinking that I was doing him some good by being there even though he was not conscious. So anyway, it got to be around noon and I was hungry. So I left and went to McDonalds...brought the food back and watched TV while I ate. After I ate, I sang to him and he quietly passed. So what is the story here? I looked back later and was horrified that I had done such a thing! I would have been devastated if he had passed while I was gone and I would have thought terrible things about any other family member that did the same thing. What I realized later is that I have always gone to food for comfort in times of stress and that was the ultimate stress. So you may ask how I could have been hungry or eaten anything during a time like that, but I guess I see it as an addition of sorts. So I cut myself some slack about it now, but strangely enough I haven't ever eaten there again. It's so hard to explain our actions sometimes.

[catlynLPN]

Here's what I'm thinking....maybe the family just didn't "see" the dying process.

I went in to work one day and checked on a patient.....I could see that death was close.

I told the nurse I was relieving, "He's dying now." She said, "No, he's not. He's been like that all day. His family has been here and they've visited all day."

I said, "No, he's dying now."

I called the family and they got there as quickly as they could but he was gone by the time they got back.

Even that nurse could not see that he was dying. So I would think that people who are NOT nurses may not realize either......you said in your post that one daughter said "Mom is sleeping" and she left.

Some people just don't see it, especially lay people.

I am still amazed at that nurse I relieved who did not see that that man was dying right before our very eyes.

Maybe she had never seen someone die before and could not see the look of death that comes over the person.

[psalm, RN]

Was this in a hospital setting? I would find it difficult to attempt to watch a baby not quite a year old when my hospice patient is dying...and would it be in my scope of practice?

Perhaps the mother did everything for her kids and left them ill-prepared for life. I see that all the time...mom does everything and her adult kids can't or won't do anything for themselves. Add denial to that and it becomes very difficult for all concerned.

I am sorry you had to go thru this. I am sure you were compassionate and kind for the daughters and kept your frustrations to yourself, as so many of us must do.

[closetoyou21, CNA]

I agree with pennyaline and mama d.You can't expect the family to respond how you want them too...

[flightnurse2b, LPN]

sometimes grief can shut off any kind of rational thinking that you may have had. maybe they thought they had more time... or maybe they were trying to cope and subconciously ignoring the situation and distracting themselves from it. i'm sure it's hard for anyone to watch their mother die of anything, let alone cancer.

i have seen so many different reactions to death that nothing surprises me anymore and i don't hold expectations towards anything--because i am not that person, that is not my loved one, and i don't know their story.

one of my patients last week had lung ca, renal failure and candida of the respiratory tract, BP 70/40, oxygen sats 80% on 100% bipap, in and out on conciousness. the wife had not been up to visit, so i called and told her what was going on, asked her about any wishes she had re: advanced directives, and really all she said was "ok, i'll get there when i can". he coded twice right after and died. it took me three hours to finally get a hold of her... and yes, in my head i was like "what the heck, lady, i told you your husband was dying, and now he's dead and you're not picking up your phone"... but i don't know their story, i don't know her or their relationship... i was just there to care for him. her not being there is on her conscience. she may not have come for a reason, and whatever that reason was, wasn't my business.

when my boyfriend died in a car accident, i was a paramedic... and no part of my rational thinking was present. i was histerical, screaming, yelling, and i fainted a few times. he was DOA and he was gone and i wanted to do something. i wanted someone to fix him and if they couldnt damnit i was going to. i knew so much better than that, because of my training.. his neck was broken.. and i had handled those injuries in the field... but at that time, all i could think of what that some drunk driver had taken him from me and i was angrier than i have ever been in my entire life. the person that i became that night and afterwards, until i came to terms with the truth, that he was really dead, was an irrational, grieving mess. my thoughts were flying and my words were garbled. i even kept calling his cell phone, because i thought sometime he might pick it up. no one could have prepared me.

so i guess what i'm saying is that yes, maybe they were ill-prepared.. but expecting them to handle a death in the way you think they should have is asking alot. people hurt in their own way, and im sure if those daughters had missed their mothers passing it would have been very sad for them---but maybe they didn't want to believe you when you told them it was time.....

[LHH1996]

oh my goodness flightnurse2b...i am so sorry you had to go through that...."Hugs"