Update: A Lesson in Family Ethics and End of Life

As some of you have read our family is going through a rough time with our matriarchal Grandmother. She is the glue that binds us and the sass that keeps up laughing through our troubles.

For more on her recent admission to the ICU read here: A Lesson in Family, Ethics and End of Life - Nursing for Nurses

Well at this point of time we are really at a cross-roads. My Grandmother is now trach-vented and is neither improving or declining. She has good and crabby days, but overall is described to me as sassy and competent. My family is currently looking into an LTAC facility for her. This was something I was dreading. Though now I am not so sure what to think.

My conceptions of death and end of life are so challenged right now. In the end it is not my decision, however after a long heart to heart with my Uncle, I realized how terrified he is to have to make that call.

She cannot survive off the ventilator. However nothing much spectacular is going on in any direction. I keep wondering, what is end of life like when you are being held together with band-aids and hope?

If anyone has any suggestions for any books that might be of use to our family, or websites please feel free to post them here.

I am treading deep in unfamiliar territory and am not sure how to help support my family right now.

Thanks for listening (reading),

Tait
{{{{{{{{{{{{{{Tait}}}}}}}}}}}}Your struggles with your grandmother sounds very familiar. About this time last year I went through something similar with my grandmother. She started in with pneumonia from chronic renal failure to pneumonia again to sepsis, dialasis, to hospice.The only words of support that I can give you is be there for your family, and know that when she passes, she will be in a better place.You are doing the best that you can.....and that is all that you can do.Again....lots and lots of hugs to you....

My grandfather went through this for an entire year, and that experience combined with my nursing knowledge is the reason I refused to let my dad go through it...we had him extubated and let him go with dignity (and 55 mg of morphine in his system, wooo baby!) I believe in a higher power and I know that wherever he went had to have been better than the limbo he was going to live in down here. This is purely a matter of opinion though, and no one can tell you what to do or make up your mind for you. I can tell you from my experience as a tech in LTAC and from watching my grandfather, that these patients generally suffer, medically and in spirit. They get infection after infection and bounce back and forth between acute care and LTAC until they are consumed by pneumonia or sepsis, or family decides to withdraw care. From a medical standpoint, it sounds like she's dying. Her heart and lungs are damaged to the point where she's vent dependent. She's living on and off drips. She can't be extubated. Her body is trying to go, but it's being kept alive artifically. Questions you have to ask yourself...how is your grandmother's quality of life? Will she regain her strength and be able to get up and move around on a vent? From your years with her, what does living mean to her? How does she value life? Would she want to be kept alive for the sake of her body being present with you? I know my questions seem pointed, but they're important questions. It's clear you love your grandmother by your description, but at some point everyone passes away. The hardest part is loving them enough to let go, to think beyond the here and now. With the exception of hospice patients, every patient I've taken care of at end of life had family that hoped and prayed for a miracle. I currently have a patient who is a toddler and brain dead and his parents are keeping him alive because in their faith they genuinely believe he will be spared and come back to them. His MRI showed many holes in his brain, but they don't care about the medical science of it, or that he's in a constant state of seizing. They see him as the normal baby he was, not for what he has become. It sounds like you have a little of that going on, and it's normal. No one wants to lose a loved one, especially one that has played such a pivotal role. No one likes to make life and death decisions either. I had to make the decision to end my dad's life when I was 24 because my family couldn't. They were grateful that I took the weight off their shoulders and that he got to go peacefully. I like to think he's in heaven with my grandparents eating homemade ziti and playing cards every night. But that's me and I deeply believe in quality of life over quantity. No matter what you decide it won't be easy, but the right decisions usually never are. You will know when it's time to say goodbye. No matter what, you've had 83 years of love and wonderful memories with her that will stay with you long after she has passed.

Quote from RN4WeeOnesMy grandfather went through this for an entire year, and that experience combined with my nursing knowledge is the reason I refused to let my dad go through it...we had him extubated and let him go with dignity (and 55 mg of morphine in his system, wooo baby!) I believe in a higher power and I know that wherever he went had to have been better than the limbo he was going to live in down here. This is purely a matter of opinion though, and no one can tell you what to do or make up your mind for you. I can tell you from my experience as a tech in LTAC and from watching my grandfather, that these patients generally suffer, medically and in spirit. They get infection after infection and bounce back and forth between acute care and LTAC until they are consumed by pneumonia or sepsis, or family decides to withdraw care. Questions you have to ask yourself...how is your grandmother's quality of life? Will she regain her strength and be able to get up and move around on a vent? What does living mean to her? How does she value life? Would she want to be kept alive for the sake of her body being present with you? I know my questions seem pointed, but they're important questions. It's clear you love your grandmother by your description, but at some point everyone passes away. The hardest part is loving them enough to let go, to think beyond the here and now. With the exception of hospice patients, every patient I've taken care of at end of life had family that hoped and prayed for a miracle. I currently have a patient who is a toddler and brain dead and his parents are keeping him alive because in their faith they genuinely believe he will be spared and come back to them. His MRI showed many holes in his brain, but they don't care about the medical science of it, or that he's in a constant state of seizing. They see him as the normal baby he was, not for what he has become. It sounds like you have a little of that going on, and it's normal. No one wants to lose a loved one, especially one that has played such a pivotal role. No one likes to make life and death decisions either. I had to make the decision to end my dad's life when I was 24 because my family couldn't. They were grateful that I took the weight off their shoulders and that he got to go peacefully. I like to think he's in heaven with my grandparents eating homemade ziti and playing cards every night. But that's me and I deeply believe in quality of life over quantity. No matter what you decide it won't be easy, but the right decisions usually never are. You will know when it's time to say goodbye.

Quote from TaitUnfortunately I would let her go before letting her sit in an LTAC, however my family and in particularly my mother, are no where near that decision. The scary thing about all of this is how easy it is to slip from one level of care to the next, ET to trach vent, ICU to LTAC, cradled by the expectation that everything will be ok. It isn't until I point out "If they take her off the vent she will die." that some of them realize the reality of the situation.Tait

One of the best quotes I have found was on the blog of an oncology RN. She said "What families have trouble identifying is that they don't want treatment. They want outcomes." Getting loved ones to look at the outcomes and the unlikeliness of them is a painful pathway. I am sorry you are having to face such a difficult situation.

"The scary thing about all of this is how easy it is to slip from one level of care to the next, ET to trach vent, ICU to LTAC, cradled by the expectation that everything will be ok."So true, and something that I've always worried about. The only ones who "get" this are in the medical profession, and even we are likely to slip down the slope when we are dealing with our loved ones.I realize that you are at a distance from your family and the situation, but would it do any good to call a family meeting before the transfer and ask for input from a social worker, the doctors, ICU nurses? Perhaps if a realistic scenario is laid out for your family, different decisions may be made?I read your previous post but can't remember - do you know your grandmother's wishes?

I'm only a nursing student, but I have some familiarity with what you are going through from my father (had a subarachnoid hemorrhage due to a ruptured aneurysm and all the sequential organ system issues and varying levels of coma).I supported my mother and encouraged her to not only make decisions with her heart since she knew him best. I think the best thing she ever did was agree to place my father on hospice care 6 1/2 months after his SAH (he passed 8 months later). The hospice nurse case manager was nothing short of fabulous. She ensured his comfort with morphine & other measures, she helped my mother to decide which treatments were futile and which would offer more comfort than harm. She also helped my siblings to comprehend the gravity of the situation. Unfortunately we did have to place my father in a LTC facility, but the hospice nurses were there every step of the way. It wasn't easy watching my father pass (he was only 60 at the time) but I (and my mother) were definitely better prepared, plus we were at his side in the end.Perhaps a palliative care or hospice consult may help your family understand the situation better and come to a decision. I know the hospice nurse was able to empower my mother to make decisions (even with my siblings driving her nuts along the way from a distance). In my experience, hospice and palliative care nurses have unique qualifications to help families comprehend the grave situation and empower them to make the best decision possible for their family member's needs.

I agree that your family should seek out Palliative care folks to guide and educate. I work in a LTC facility and work with palliative/hospice care teams frequently and they are wonderful. Does your grandmother have a living will and healthcare power of attorney? These are important documents and that's where the family should start, if she has these documents. I would ask the hospital she's in if they have a palliative care team and if so, ask to speak with them. If not, I'd call your local hospice, because sometimes they will have a palliative care team or can lead you to one. With most physicians the goal is to keep the patient alive at all costs, otherwise it's viewed as failure to them. So you probably won't get the information you need from them. Palliative or Hospice folks can educate the family on what is physically happening and what will happen each step of the way if treatment is resumed or stopped. Good luck to you.

Quote from roser13I read your previous post but can't remember - do you know your grandmother's wishes?

Quote from leslie :-Dthis is my thought as well...has anyone asked what grandma wants???i truly feel compelled to say this:while i fully understand your family's despair and reluctance, this is nothing short of cruel.this will be the first and last time i say that.i'm sorry tait, on so many levels.:redpinkheleslie

Quote from mjm1979I agree that your family should seek out Palliative care folks to guide and educate. I work in a LTC facility and work with palliative/hospice care teams frequently and they are wonderful. Does your grandmother have a living will and healthcare power of attorney? These are important documents and that's where the family should start, if she has these documents. I would ask the hospital she's in if they have a palliative care team and if so, ask to speak with them. If not, I'd call your local hospice, because sometimes they will have a palliative care team or can lead you to one. With most physicians the goal is to keep the patient alive at all costs, otherwise it's viewed as failure to them. So you probably won't get the information you need from them. Palliative or Hospice folks can educate the family on what is physically happening and what will happen each step of the way if treatment is resumed or stopped. Good luck to you.

thanks for your post, tait.it really did provide much insight.so, it seems that grandma has truly been the family's matriarch...a role that she has likely savored for a great many years?it's no wonder then, family is acting as they are.the greatest gift her kids could give her, is permission to go.i pray that comes, in time.leslie