"Right to Die" Vent.

[DawnCt1]

My SIL's mom has an ultimately fatal blood disease,lung cancer (which hasn't progressed) and she is 78 years old. That said, she is not much weaker this year than she was last year when we took her to WDW and she had a wonderful time. She was on "pre hospice" but outlived the parameters, and was taken off. Her medical care consists of blood transfusion about every three weeks. Just prior to her transfusion she is weak, tired and occasionally, depending on the HCT, intermittently confused but when she is confused she knows she is and corrects herself. In other words, she is mostly on the ball.

Tonight she had a nose bleed that wouldn't stop. She was admitted to the hospital, her crit and platelets are low. She is being transfused. During this the nurse who knows her comes in and says; "I know that it is getting difficult for you to come in when you are feeling this way, and you must be getting tired of it. Anytime you just want to not come in, we can have the VNA come out and pursue hospice". I can't remember what else she said, but my SIL felt that she was definitely try to steer her mom towards hospice.

My SIL, I think, is overreading the situation and assuming that they know something that she and her mother do not know. In reality they don't because all of the blood work isn't back, and what is back is consistent with her history. The unit she is on is directed towards oncology/ hospice. IMO, when someone has a hammer in their hand, everything looks like a nail. My SIL is naturally upset over this. When her mom is blood deficient, she is depressed and tired. When she isn't she is 'fine', at least emotionally and has a decent quality of life for a 78 year old.
My feeling is, my SIL who is a nurse,knows the "options". Her mother, who is also a nurse knows the "options", and for "just staying home" with hospice to be offerred so much makes my SIL feel that she isn't doing the 'right thing'. I also wonder when the patient begins to feel that the "right to die" becomes the "duty to die". I told her that my response would be, "Don't call me, I will call you, We know the options, we don't need to be reminded every time we come in to the hospital, don't mention it again". What are your thoughts? They were pushing hospice last year before we went to Disney and she ate two entire servings of Tonga Toast on two separate occasions.

 

[Judy from Boise]

I am a huge right to die proponent ( so glad i live very close to oregon ) I think your guess that when you are an oncology nurse you naturally frame things in that context is probably correct. No maliciousness....just a little tunnel vision based on the small piece she sees.
But, your response would also re-frame her view in a good way.

 

[maccagerl]

You will know when it is time for hospice- until then don't let what the nurse said bother you- she is seeing your SIL's mom at her low point, not at any of the better times, so that is what she is going on.

 

[Cindyluwho]

I am a huge right to die proponent ( so glad i live very close to oregon ) I think your guess that when you are an oncology nurse you naturally frame things in that context is probably correct. No maliciousness....just a little tunnel vision based on the small piece she sees.
But, your response would also re-frame her view in a good way.

I agree. The nurse doesn't know the situation as well as your family does. That being said, she was trying to be helpful....as they say, "the road to hell is paved with good intentions".
Hang in there!

 

[DawnCt1]

Thanks everyone. My SIL is easily intimidated and so I am encouraging her to stand her ground and understand that she knows her mother better than they do. Her mom barely weighs 100 pounds. She reminds me of my own mom and is very sweet.

 

[imabrat]

I know what it's like to deal with the transfusions frequently, and you're totally right. Before the transfusion I felt like death, but half way through, I felt like I could shop the whole mall walking! Even though I was in a wheelchair.
I am a FIRM believer in everything happens for a reason. You're SIL's mom has been through such a horrible monster and is STILL here! SHE will choose when she is ready to go, the hospital shouldn't be interfering. (sp?) Tell her to stand her ground, if she doesn't feel ready, she's not ready to go.

I think your guess that when you are an oncology nurse you naturally frame things in that context is probably correct.

Are you an oncology nurse?
Thank you. From the bottom of my heart, I truly mean it. Without you guys, I don't think I would be alive.

 

[agnes!]

I agree. The nurse doesn't know the situation as well as your family does. That being said, she was trying to be helpful....as they say, "the road to hell is paved with good intentions".
Hang in there!

This is off-topic, but have you heard the other version?

"The road to hell is paved with committees." (Usually muttered under the breath while dealing with church &....committees .)

agnes!

 

[Disney Doll]

You know, as a nurse, one is sometimes in a very precarious position with regard to patient and family interactions. While it is part of the job to "treat" the whole family, include everyone in the plan of care etc., our obligation is to the patient, and part of that obligation is making sure the patient is aware of ALL options with regard to their health status and their care. Informed care is paramount, IMHO, and an ethical obligation that I carry as a nurse.

Certain types of nursing lend themselves to developing a relationship with patients...oncology is one of them. Oncology nurses often care for patients over the course of several years, or they may care for them frequently over the course of a few months. In either scenario, one generally cannot help but develop a relationship. I have had patient tell me things in the quiet of an evening or night when no family member was around that would curl your hair....about their life, about choices they made...things that they made very clear to me that their family did not know about them. It's funny, but when someone is getting close to dying and they know it, they feel the need to "finish" things, to tell their story. I have always considered it a privelege to be that person that my patient shares things with.

I know you and her daughter think she is doing pretty well, and perhaps she is. But neither of you know what she may have said to a nurse in a quiet moment, neither of you know what she might be feeling every minute of every day, neither one of you know if you might not be projecting a bit of your desire to not want to lose her which is coloring your vision of "how she's doing". That is very easy for people to do when someone they care deeply for is ill.

Rest assured, her health care team is not (and cannot) keep any information from her. So if a nurse is reminding her that she can stop treatment whenever she wants, she is doing so because that is part of her obligation to make sure her patient has ALL the information, not just the parts that well-meaning family or friends want the patient to have.

I never think anyone has a "duty" to die. But I also don't want anyone to think they have a duty to live if they are tired of fighting their "battle".

With regard to your particular situation...I am going to look at the information you posted with my "clinical" eye:
~78 year old female - objective information
~weighs 100 lbs. - objective information
~has lung cancer and an ultimately fatal blood disease - objective information
~requires a blood transfusion every 3 weeks and becomes hypoxia and confused as a symptom of her need for blood -objective information
~emotionally fine when her bloodwork is OK - subjective information
~decent quality of life - subjective information
~not much weaker than last year - subjective information
~admitted with nosebleed due to abnormal blood levels -objective information
~was able to go to Disney last year - objective information

For me, her objective information is painting a picture of a relatively compromised individual.

Her subjective information:
~"emotionally fine when her bloodwork is OK" - how do you really know that? Because she says so? Maybe she says so to her family so they won't worry or be sad. Maybe when she is alone with the nurse, she tells her how depressed she is and how much she hates being sick.
~"decent quality of life" - in your and her daughter's opinion, but perhaps weighing 100 lbs. and needing to be transfused every 3weeks is not a decent quality of life as far as she is concerned. But, of course, she doesn't want to say that because she doesn't want to upset the family.
~"not much weaker than last year" - how do you know? How do you actually know how she really feels? Because she tells you? Maybe she tells you all she feels OK so you all don't worry.

Truly, my purpose with my post isn't to pick on you. It is to point out the thought process behind what I, as a nurse, might say to a patient, and why I might be saying it. Every patient deserves to know all their treatment options, even the ones family and friends might not agree with.

 

[bumbershoot]

Dawn, I'm sorry your SIL is in this situation. We had something along those lines with my FIL, and they didn't let him make it out of there. They caused a situation, caused more of a situation, continued causing it, and then switched from letting a 79 year old man who couldn't walk around the nurse's station get into a heart health program that's meant for otherwise healthy 50 year olds (who can walk well and quickly) because he conned them, to end of life stuff and would NOT hear what we were saying. They even stopped talking to me, even though I was on his charts to talk to (had been from the beginning b/c I speak English unlike MIL, speak basic medicalese unlike the family, and will ask questions if I don't understand anything unlike the family), and wouldn't explain to anyone, even my MIL, why they wouldn't talk to me anymore other than privacy stuff (which shouldn't have come into play b/c I had been added by FIL and MIL repeatedly).

Anyway, it sucks.

My stepmom is a NICU nurse and sees every baby-arrival as an emergency. The woman had three all natural births but her training, which happened after the 3rd, has obliterated that from her head and heart. All she sees are the difficult situations, so she now refuses to believe that ANY births are fine and normal and result in truly health mom and babies where no one has had surgery....

And I bet that oncology nurses get those same blinders. Sorry Dawn.

 

[PADISFAM]

Dawn is a Nurse as well as the SIL & the patient..........clinically, objectively.......Mom needs to decide what she wants, simple as that. I agree with telling Nurse in the hosp, 'thanks, we'll call you when we're ready'.

 

[Disney Doll]

Dawn is a Nurse as well as the SIL & the patient..........clinically, objectively.......Mom needs to decide what she wants, simple as that. I agree with telling Nurse in the hosp, 'thanks, we'll call you when we're ready'.

In this case Dawn is a family member and SIL is a daughter and Mom is a patient.

I've been the family member of sick and dying people. The nurse thing takes a back seat when it's a loved one.

 

[Judy from Boise]

I know what it's like to deal with the transfusions frequently, and you're totally right. Before the transfusion I felt like death, but half way through, I felt like I could shop the whole mall walking! Even though I was in a wheelchair.
I am a FIRM believer in everything happens for a reason. You're SIL's mom has been through such a horrible monster and is STILL here! SHE will choose when she is ready to go, the hospital shouldn't be interfering. (sp?) Tell her to stand her ground, if she doesn't feel ready, she's not ready to go.



Are you an oncology nurse?
Thank you. From the bottom of my heart, I truly mean it. Without you guys, I don't think I would be alive.

I actually started my RN career as a pediatric hematology/oncology nurse, but then went on to do almost every type of nursing you could do (Cherry Ames syndrome....I wanted to try everything she did LOL ) and for the last few years have been a CNO (Chief nursing officer) and noe Director of Clinical services....but I thank you for all nurses ....I love nurses and nursing.

Good luck to your family Dawn.

 

[yeartolate]

In this case Dawn is a family member and SIL is a daughter and Mom is a patient.

I've been the family member of sick and dying people. The nurse thing takes a back seat when it's a loved one.

I totally agree.

I would like to add that being in the critical care end of the nursing business, many of our worst tragedies occur because of lack of education, exposure, and understanding of the options, One thing leads to another and a patient who should have been on hospice is stuck in critical care hell with lines and tubes that will never ever come out. What starts off as a decison that should have been made by a patient ends up being a family fighting over medical ethics and miracles. I am not sure if that particular nurse made an over reach, but it clearly was not malicious, and I think the patient will likely hear similar comments again. Out of compassion and understanding, not of wanting to go against the patient's will.

 

[#1MMFan]

You know, as a nurse, one is sometimes in a very precarious position with regard to patient and family interactions. While it is part of the job to "treat" the whole family, include everyone in the plan of care etc., our obligation is to the patient, and part of that obligation is making sure the patient is aware of ALL options with regard to their health status and their care. Informed care is paramount, IMHO, and an ethical obligation that I carry as a nurse.

Certain types of nursing lend themselves to developing a relationship with patients...oncology is one of them. Oncology nurses often care for patients over the course of several years, or they may care for them frequently over the course of a few months. In either scenario, one generally cannot help but develop a relationship. I have had patient tell me things in the quiet of an evening or night when no family member was around that would curl your hair....about their life, about choices they made...things that they made very clear to me that their family did not know about them. It's funny, but when someone is getting close to dying and they know it, they feel the need to "finish" things, to tell their story. I have always considered it a privelege to be that person that my patient shares things with.

I know you and her daughter think she is doing pretty well, and perhaps she is. But neither of you know what she may have said to a nurse in a quiet moment, neither of you know what she might be feeling every minute of every day, neither one of you know if you might not be projecting a bit of your desire to not want to lose her which is coloring your vision of "how she's doing". That is very easy for people to do when someone they care deeply for is ill.

Rest assured, her health care team is not (and cannot) keep any information from her. So if a nurse is reminding her that she can stop treatment whenever she wants, she is doing so because that is part of her obligation to make sure her patient has ALL the information, not just the parts that well-meaning family or friends want the patient to have.

I never think anyone has a "duty" to die. But I also don't want anyone to think they have a duty to live if they are tired of fighting their "battle".

With regard to your particular situation...I am going to look at the information you posted with my "clinical" eye:
~78 year old female - objective information
~weighs 100 lbs. - objective information
~has lung cancer and an ultimately fatal blood disease - objective information
~requires a blood transfusion every 3 weeks and becomes hypoxia and confused as a symptom of her need for blood -objective information
~emotionally fine when her bloodwork is OK - subjective information
~decent quality of life - subjective information
~not much weaker than last year - subjective information
~admitted with nosebleed due to abnormal blood levels -objective information
~was able to go to Disney last year - objective information

For me, her objective information is painting a picture of a relatively compromised individual.

Her subjective information:
~"emotionally fine when her bloodwork is OK" - how do you really know that? Because she says so? Maybe she says so to her family so they won't worry or be sad. Maybe when she is alone with the nurse, she tells her how depressed she is and how much she hates being sick.
~"decent quality of life" - in your and her daughter's opinion, but perhaps weighing 100 lbs. and needing to be transfused every 3weeks is not a decent quality of life as far as she is concerned. But, of course, she doesn't want to say that because she doesn't want to upset the family.
~"not much weaker than last year" - how do you know? How do you actually know how she really feels? Because she tells you? Maybe she tells you all she feels OK so you all don't worry.

Truly, my purpose with my post isn't to pick on you. It is to point out the thought process behind what I, as a nurse, might say to a patient, and why I might be saying it. Every patient deserves to know all their treatment options, even the ones family and friends might not agree with.

Couldn't have put this any better. I'm a doctor and am often in this situation. I don't think "duty to die" is the correct phrase at all. Over here, my local hospice will do top-up transfusions for terminal patients so perhaps they also do that at the OP's hospice? Certainly it is not about pushing a patient in to submission and death.

 

[soonerlpn]

As a hospice nurse the one thing that I see on a regular basis is patients that are referred to our services WAY too late. Sometimes we admit patients and they are on less than 48 hours. That in no way will allow the patient and the family to receive the true benefits of hospice care. Perhaps the nurse was trying to be proactive. I agree with the other posters above that the nurse would not have been doing her job if she failed to bring up options. The patient is well within her rights to refuse hospice but I believe the nurse was not trying to be malicious. She was trying to help.

Hospice is not the end of life. Hospice will help both the patient and the family make the most of whatever time is left. As stated above quality of life is subjective. What one may see as an OK quality of life others may shudder to think of living that way.

In the end I hope your SIL and her mother are blessed to make the most of life. It is precious and we are only allowed a little time in the grand scheme of things. Thoughts and prayers to you and your family!!!

 

[DawnCt1]

She was actually pre hospice last year and they had to take her off because she was doing so well. She is a DNR. She is having no treatment beyond blood transfusions and Procrit type drugs. I think she could benefit by a low dose of antidepressant, as does her DD. I honestly do see both sides of the equation, but after she is transfused, she usually has at least two good weeks of quality life; according to her and her DD. My concern is that "these questions" or issues are raised when she is at her lowest point; a bit hazy, a bit confused, needing admission. She rarely stays for more than a couple of nights and it isn't that often. I just don't think "end of life" decisions are best made under that fog. She has expected to go for a long time so all of her affairs are in order. No one expected her to live this long.

 

[Disney Doll]

I guess I misunderstood your OP Dawn, because the statement you said the nurse made... "I know that it is getting difficult for you to come in when you are feeling this way, and you must be getting tired of it. Anytime you just want to not come in, we can have the VNA come out and pursue hospice".... didn't sound to me like there was any pushing a person in a "fog" toward making a decision. It sounded like a reminder of options. But I am speaking of the perspective of the "outsider" not from the perspective of the family member who is watching a loved one "fade". I remember that position, when caring for both my in-laws. It's a difficult place to be in.

In any event, it sounds like she has a very loving & involved family who will not let anything happen before everyone is ready for it to happen, and that's what really matters.

Best wishes to all.

 

[soonerlpn]

She was actually pre hospice last year and they had to take her off because she was doing so well. She is a DNR. She is having no treatment beyond blood transfusions and Procrit type drugs. I think she could benefit by a low dose of antidepressant, as does her DD. I honestly do see both sides of the equation, but after she is transfused, she usually has at least two good weeks of quality life; according to her and her DD. My concern is that "these questions" or issues are raised when she is at her lowest point; a bit hazy, a bit confused, needing admission. She rarely stays for more than a couple of nights and it isn't that often. I just don't think "end of life" decisions are best made under that fog. She has expected to go for a long time so all of her affairs are in order. No one expected her to live this long.

Hi Dawn! Quick question, what is pre hospice? Is that something that is local to you? I just have never heard of it! TIA and I hope all is well!

 

[okeydokey]

She was actually pre hospice last year and they had to take her off because she was doing so well. She is a DNR. She is having no treatment beyond blood transfusions and Procrit type drugs. I think she could benefit by a low dose of antidepressant, as does her DD. I honestly do see both sides of the equation, but after she is transfused, she usually has at least two good weeks of quality life; according to her and her DD. My concern is that "these questions" or issues are raised when she is at her lowest point; a bit hazy, a bit confused, needing admission. She rarely stays for more than a couple of nights and it isn't that often. I just don't think "end of life" decisions are best made under that fog. She has expected to go for a long time so all of her affairs are in order. No one expected her to live this long.

Could they do the transfusions every two weeks then instead of three?

 

[daisax]

I remember when my father had cancer and it was clearly getting worse instead of better, we asked about hospice (my mom is a nurse and I work in healthcare) and his doctor looked horrified and said "Who told you about that?! It's WAY too early for that!"

He took a turn for the worse the next week and was dead 3 weeks later. I mentioned the oncologist's reaction to one of the nurses and she said that as a specialty it attracts the "never give up" personalities, which is good in many ways. In my life I've found nurses to be far more sensitive to the patient in a holistic way, instead of just looking at the disease on its own.

From what I hear, hospice has really evolved over the past 10 years, a lot of the "time" barriers have been eliminated (used to have to have a life expectancy of <6 mos). There may very well be home care options given through hospice that the nurse felt she was offering, but you're looking at it from the "old" framework of hospice where it was basically palliative measures and "giving up." Might be worth asking what services they provide -- and if they can provide the services she's currently getting in a home situation and she's feeling better as soon as she gets them, does it matter that it's called hospice if it improves her quality of life?