Any advice on caring for dying and family?

danu3 · Apr 12, 2005

Hi everyone!
Any special thoughts on caring for the dying and family. If you were face with death in your own life, how would you have wish the nurses and mds acts with you.
I am collecting ideas for my new bereavement commitee. Any suggestions? How does it happens in your hospital, institution? Any panphlets, guides...
Thanks for sharing!

http://www.billwilsoncenter.org/thecentre/

Take a look at the resource, it might have something that might be useful.

-Dan

danu3 · Apr 12, 2005

http://healthlibrary.stanford.edu/resources/internet/bodysystems/mental_misc.html

Take a look at the grief section, maybe some of it might give some ideas.

-Dan

ps. Do you have a chaplaincy? If so, are they involve also?

*LA* · Apr 12, 2005

Hi everyone!
Any special thoughts on caring for the dying and family. If you were face with death in your own life, how would you have wish the nurses and mds acts with you.
I am collecting ideas for my new bereavement commitee. Any suggestions? How does it happens in your hospital, institution? Any panphlets, guides...
Thanks for sharing!

Hi there. Im an RN and this is my very first post. I found this site by accident, I was looking for white clogs and this place came up on google? Im about to return to work after having been "at home fulltime" for 3 1/2 years. Im an operating room RN, since 1990.

ANyway, long story short, being in the OR, I have dealt with death almost never. and I liked it that way.

So being painfully ill equipped to deal with death, and happy t be so, I had a crash course when my mother called me to tell me that she had metastatic Ca.... After dozens of tests, over a period of six months, she was told that she had approx 6 mos. She actually had 6 days. My birthday.

well, not only was the whole ordeal a shock, but it was on ethat I learned to deal with in a baptism by fire kind of way.

Shortly before she died, she also revelaed that she had been keeping it somewhat a secret (she lives in another state) but she told me that my father had Alzheimers disease. (was much further along that we had realized) Well, when she died, he came to live with us (me , my husband, our 3 kids, 2 cats and 2 dogs).

He was physically fine otherwise. He died almost extactly one year later after a very brief case of pneumonia.

OK, so I wanted to write this to help you but Ive ended up babbling on and on and have probably put you into a coma or made your eyes bleed and still havnt gotten to the point.....

Anyway, I am going to gather my thoughts and come back to this topic because I think its a good one and I think that I might have something to comtribute, since Im an RN, who had to be on the other end..

( nice meeting you guys, by the way)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

look forward to talking to you guys again on a happier note

Nice to meet you all !

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ps I dont usually talk this much

Nesher, BSN, RN · Apr 12, 2005

Is your committee for patients/families or nurses?

Teachchildren123 · Apr 12, 2005

Hi there. Im an RN and this is my very first post. I found this site by accident, I was looking for white clogs and this place came up on google? Im about to return to work after having been "at home fulltime" for 3 1/2 years. Im an operating room RN, since 1990.
ANyway, long story short, being in the OR, I have dealt with death almost never. and I liked it that way.
So being painfully ill equipped to deal with death, and happy t be so, I had a crash course when my mother called me to tell me that she had metastatic Ca.... After dozens of tests, over a period of six months, she was told that she had approx 6 mos. She actually had 6 days. My birthday.
well, not only was the whole ordeal a shock, but it was on ethat I learned to deal with in a baptism by fire kind of way.
Shortly before she died, she also revelaed that she had been keeping it somewhat a secret (she lives in another state) but she told me that my father had Alzheimers disease. (was much further along that we had realized) Well, when she died, he came to live with us (me , my husband, our 3 kids, 2 cats and 2 dogs).
He was physically fine otherwise. He died almost extactly one year later after a very brief case of pneumonia.
OK, so I wanted to write this to help you but Ive ended up babbling on and on and have probably put you into a coma or made your eyes bleed and still havnt gotten to the point.....
Anyway, I am going to gather my thoughts and come back to this topic because I think its a good one and I think that I might have something to comtribute, since Im an RN, who had to be on the other end..
( nice meeting you guys, by the way)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
look forward to talking to you guys again on a happier note
Nice to meet you all !
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ps I dont usually talk this much

So sorry for your lost!

On the upper note, very nice to read you, talk to you again.

Teachchildren123 · Apr 12, 2005

Is your committee for patients/families or nurses?

It's for all! Any ideas?

Thanks!

*LA* · Apr 12, 2005

So sorry for your lost!
On the upper note, very nice to read you, talk to you again.

Thank you.

My mother was at home, and had had one visit from the hospice nurse , before she died.

My father had been at home prior to his hospital admission and died unexpectedly, after one week in the hospital.

The hospice nurse was great even thought it was only one visit and it was a meet and greet type visit (since we expected my mom to last for six months)

ANyway, off the top of my head....

1) even when the family members of the patient are RN's, dont assume theyre thinking clearly ( I wasnt) and it helped to be treated like I had forgotten everything I had known.

2) TRY to be a little light hearted. everyone that comes to see the patient has this very grave mood and while Im not suggesting that the staff go into a jay leno type routine, just try and be light. these patients get enough death and dying looks and gloom and doom talk that they can use a littlecheer to change from the usual.

3) keep things in the present. with my mom, I tried to say things that staye din the present tense and focused on the positive (unless my mom felt like "talking death and plans for after etc..."

ex> how did you sleep (vs how are you doing) I cant verbalize why exactly, but when people asked my mom how she was doing, she sometimes said "how do you think, Im dying, Im doing terrible", BUT if you ficused on things like " did you sleep" or "anything hurt worse today", it didnt confront her with the honest answer shed need to give.

4) with someone like an alzheimers patient, I would ask the family, to make plans for what they would do, if an unexpected ilness came up (which it often does), that way when confronted with it, they arent forced to think on the spot, which would be awful and most people (me) dont think clearly when in a stressful acute situation.

Ok,

probably I can come up with more later on

sorry to skip around but Im going with what come soff the top of my head.

Oh, one more thing, when dealing with a terminally ill patient, in a hospital, make sure EVERYONE that comes into that room introduces themselves and explains their purpose for being there. I mostly ran into this with docs ( and my mom was at a major cancer treatment center when sh was hospitalized) but I was shocked at how many people came into the room and didnt even introduced themselves (residents on rounds for example). This room is the patient home for the time being andits incredibly intrusive to not say "Hi, Im so and so and Im here for etc..."

I had to point this out to many people who came into my moms room and said nothng, but just stood there ready to take notes, as if she was non hearing, non seeing entity. ( its almost funny to observe, we used to make fun of them)

ps> sorry to babble

but I hope this helps some

I'l be back (if I havnt put you to sleep yet,lol)

leslie :-D · Apr 12, 2005

hey conny,

for the dying : the 1st thing i do is to try and establish a relationship w/them so they feel safe, cared for and understood.

- try to encourage them to express their feelings re: dying, pain, family or any other issues

- respect their autonomy- never force anything against their wishes, i.e., pain meds, positioning, being bathed, wanting to be left alone, etc.

- should they be in denial, do not say that they're going to die. just be silent and continue w/your normal nsg care.

i remember having this 1 particular pt. who refused to believe he had lung cancer as he felt fine and that someone made a mistake. he would try to get oob and fell a few times. it was then he realized he could no longer walk so he would sit up at the edge of the bed and stare out the window. meanwhile his legs were blowing up like balloons. i encouraged him to lay down to decrease the edema but he refused: his choice. eventually when i went in there for his meds, he started crying his eyes out, sharing all sorts of concerns and just uncontrollable crying. his denial could no longer be ignored. i just sat next to him, gently rubbed his back and i spoke w/him softly. i asked him if he wanted a priest or someone from his church in. he told me he didn't believe in God..........then he asked me if i believed in God. i shared w/him my spirituality including God and my related beliefs. for some reason, he found that comforting. but boy, this man did so much grieving as he was only 56. he also had chf but all he wanted to do was drink and he just kept on getting more and more edematous. he refused his lasix as he was having trouble using the urinal and refused to wear an adult diaper.

so on the sev'l times he was incontinent, he was beyond appalled.....which leads me to another point......PRESERVE THEIR DIGNITY. i would not assign 2 cna's to change him but it would be me and another cna as i had to ensure that it was done gently, carefully yet quickly (to get it over w/for this pt) and i would chat w/him throughout us cleaning him up. plus he had breathlessness, sob, dyspnea yet he would refuse all his neb rx's. but a fan helped him.

for the family :

often they too are in denial or they're on the other side on the spectrum where they hover.

- often they will come to you w/questions, typically how much time left?

the ones in denial, you can be more forthright; explain the dx and why they're dying- but ever so gently. these talks do not take place in the pt's room.

you're in a position to explain the s&s they're showing and explain why; education.

some families never, ever leave the bedside.

and there are some pts who will not die until their families have left.

the patient cannot always rest with 24/7 visitors, even if it is family.

some pts want this, some don't.

my guy with the lung ca wanted his family around 24/7 and they just didn't visit that much. that was heartbreaking. he wanted his wife and i'm sure she was avoiding this whole nocmare.

so my point it that families too, are going to deal with this in different ways.

remind them of the bereavement services available.

personally the hospice i worked at, the bereavement person i found rather distant, which was a shame, so i would be help them through their stages of grief.

yet i cannot emphasize enough the value of the ubiquitous 'therapeutic relationship'....that way you know your pt and their needs.

i had a russian family that would not leave. i could tell my pt was getting tired and anxious, and was ready to leave but would not in front of his family.

i finally encouraged the family to go and come back in the a.m.

after the family left, i gave him some mso4 as he was quite anxious, stood next to him, rubbing his chest as he had his hand over mine and said "thank you"......15 minutes later he died. he just refused to die in front of his family.

in summary, articles/journals can teach you alot about interventions.

but they can never teach you about human nature.

you'll have to take it one pt/family at a time.

but if you utilize your empathy, sensitivity, respect and patience combined w/ gently educating your patient/family, you will do well as a hospice nurse.

much luck to you,

leslie

*LA* · Apr 12, 2005

hey conny,
for the dying : the 1st thing i do is to try and establish a relationship w/them so they feel safe, cared for and understood.
- try to encourage them to express their feelings re: dying, pain, family or any other issues
- respect their autonomy- never force anything against their wishes, i.e., pain meds, positioning, being bathed, wanting to be left alone, etc.
- should they be in denial, do not say that they're going to die. just be silent and continue w/your normal nsg care.
i remember having this 1 particular pt. who refused to believe he had lung cancer as he felt fine and that someone made a mistake. he would try to get oob and fell a few times. it was then he realized he could no longer walk so he would sit up at the edge of the bed and stare out the window. meanwhile his legs were blowing up like balloons. i encouraged him to lay down to decrease the edema but he refused: his choice. eventually when i went in there for his meds, he started crying his eyes out, sharing all sorts of concerns and just uncontrollable crying. his denial could no longer be ignored. i just sat next to him, gently rubbed his back and i spoke w/him softly. i asked him if he wanted a priest or someone from his church in. he told me he didn't believe in God..........then he asked me if i believed in God. i shared w/him my spirituality including God and my related beliefs. for some reason, he found that comforting. but boy, this man did so much grieving as he was only 56. he also had chf but all he wanted to do was drink and he just kept on getting more and more edematous. he refused his lasix as he was having trouble using the urinal and refused to wear an adult diaper.
so on the sev'l times he was incontinent, he was beyond appalled.....which leads me to another point......PRESERVE THEIR DIGNITY. i would not assign 2 cna's to change him but it would be me and another cna as i had to ensure that it was done gently, carefully yet quickly (to get it over w/for this pt) and i would chat w/him throughout us cleaning him up. plus he had breathlessness, sob, dyspnea yet he would refuse all his neb rx's. but a fan helped him.
for the family :
often they too are in denial or they're on the other side on the spectrum where they hover.
- often they will come to you w/questions, typically how much time left?
the ones in denial, you can be more forthright; explain the dx and why they're dying- but ever so gently. these talks do not take place in the pt's room.
you're in a position to explain the s&s they're showing and explain why; education.
some families never, ever leave the bedside.
and there are some pts who will not die until their families have left.
the patient cannot always rest with 24/7 visitors, even if it is family.
some pts want this, some don't.
my guy with the lung ca wanted his family around 24/7 and they just didn't visit that much. that was heartbreaking. he wanted his wife and i'm sure she was avoiding this whole nocmare.
so my point it that families too, are going to deal with this in different ways.
remind them of the bereavement services available.
personally the hospice i worked at, the bereavement person i found rather distant, which was a shame, so i would be help them through their stages of grief.
yet i cannot emphasize enough the value of the ubiquitous 'therapeutic relationship'....that way you know your pt and their needs.
i had a russian family that would not leave. i could tell my pt was getting tired and anxious, and was ready to leave but would not in front of his family.
i finally encouraged the family to go and come back in the a.m.
after the family left, i gave him some mso4 as he was quite anxious, stood next to him, rubbing his chest as he had his hand over mine and said "thank you"......15 minutes later he died. he just refused to die in front of his family.
in summary, articles/journals can teach you alot about interventions.
but they can never teach you about human nature.
you'll have to take it one pt/family at a time.
but if you utilize your empathy, sensitivity, respect and patience combined w/ gently educating your patient/family, you will do well as a hospice nurse.
much luck to you,
leslie

that was a good post Leslie. Im sure that youve helped a lot of people.

leslie :-D · Apr 12, 2005

that was a good post Leslie. Im sure that youve helped a lot of people.

thank you, la.

and i'm sorry about the loss of both your parents.

i just lost my mom in december and one of the links that danu referenced, i looked at the various ways that one grieves. the main one that stuck out for me was not believing it was real, as my mom lived in va and it still feels like she's living there. then of course, the restlessness/sleeplessness, etc.; it's just so diverse on how one grieves and what that list showed me is there is nothing textbook about the nature of human beings and how such losses manifest themselves.

so for example, if the pt and/or family are angry, do not take it personally.

the most useful tool for me, is the bonding aspect- the safety net and establishing trust....and the second most important is empathy- let yourself feel how it is to walk in their shoes.

again, thank you and my heartfelt condolences.

leslie

*LA* · Apr 12, 2005

thank you, la.
and i'm sorry about the loss of both your parents.
i just lost my mom in december and one of the links that danu referenced, i looked at the various ways that one grieves. the main one that stuck out for me was not believing it was real, as my mom lived in va and it still feels like she's living there. then of course, the restlessness/sleeplessness, etc.; it's just so diverse on how one grieves and what that list showed me is there is nothing textbook about the nature of human beings and how such losses manifest themselves.
so for example, if the pt and/or family are angry, do not take it personally.
the most useful tool for me, is the bonding aspect- the safety net and establishing trust....and the second most important is empathy- let yourself feel how it is to walk in their shoes.
again, thank you and my heartfelt condolences.
leslie

Thank you very very much Leslie. I appreciate it

and Im very sorry about your mom.

I think that it almost seems harder when youre the "nurse" of the family. I dont know, people just seem to expect more.

both deaths were difficult, but for differant reasons. my mother and I had had a strained relationship, BUT the good thing about kowing that she was dying was that it gave some time to "remedy" our oil/water way of getting along. My dads death was difficult because it was unexpected.

Also, I felt/feel guilty for being mad at them for being sick . I know thats not rational, but........

what was really hard with my dad was that when my mom died, he came to live with us, and for months afterwards, he would wake up and ask us if my moms had heard about her test results yet....... we had to retell him, almost every day, for the first time, that she had died. it was a very ugly few months.

anyway, Im sorry to highjack the topic but I do apprecaite what you said, I really and truly do.

( I started a topic on the OR section, Im going back to work soon and am nervous, feel free to add anything , suggestions etc etc)

thanks again, very much