I will try and give as many detail as I can. I AM NOT ASKING FOR MEDICAL ADVICE. Only on how to handle this situation. Here goes...
One year ago, my grandmother was diagnosed with Pancreatic Cancer (Yikes!!) She went through chemo and radiation (surgery was not an option due to her badly diseased liver) This February her CT showed that her tumor shrunk. Since then she hasn't done chemo or radiation. Earlier this month, we rushed her to the ER with severe abdominal pain and extreme fatigue. Turn out her hgb was at a 7 and needed a blood transfusion. An endoscopy was done. Esophogeal varices was discovered but there was "no evidence of an active or prior bleeding" She was discharged with meds for portal hypertension. Well she's back in the hospital (admitted 6/28) with a hgb of 5 . They gave her more blood. They were going to perform an endoscopy and a colonoscopy but cancelled it. AND I DON'T KNOW WHY! Instead we got, "we suspect she's bleeding from her tumor" (btw the tumor is in the pancreatic duct not necessarily in the pancreas) and there is nothing they can do. They SUSPECT. I'm sorry but their hunch/theory is just not good enough!! I don't need them to tell me she's terminal, I'm fully aware of that. But do they just discharge patients from just suspecting that the tumor is where the bleeding is coming from?? I'm angry because they do nothing to definitively find the source of her bleeding. Do we just stop searching because she's eventually going to die? By discharging her they are telling me, "hey, she's gonna die anyway, why look for an answer" It's breaking my heart. I just want to know how I can get these doctors to not give up on my grandmother. The cancer has not metastasized and I assure you she's not ready do go. But sending her home with internal bleeding is going to kill her. Please anyone that could advise me on how to handle this situation. I'm beyond desperate
P/S...my grandmother only has medicare which means she's responsible for 20% of her bills. Her chemo,radiation, CT's, blood work etc.. is very expensive and we try paying as much as we can. As you can imagine we owe lots of money. Could that be the reason they cancelled the endoscopy and colonoscopy?? Can they stop treatment when someone isn't able to pay even though she's clearly has internal bleeding? This isn't an broken finger where she can just go follow up with an orthopedist after discharge. SHE'S BLEEDING INTERNALLY FROM SOMEWHERE AND THEY'RE NOT FINDING THE SOURCE!!!
Specializes in Clinical Research, Outpt Women's Health.
I have never seen a hospital NOT run stuff because of only Medicare. The opposite in fact. Even when all involved knew it was futile they would do ever more tests that added nothing to the quality of life knowing that the person is to ill to have any procedures make any difference.
I suspect there are some MAJOR misunderstandings occurring between yourself and the physicians invovled in your beloved grandmothers care.
You need to ask them very directly WHY they do not want to do the procedures. It may well be that the harm is greater than potential benefit. Or that it could cause further problems. Or that she is not a candidate for any surgery to resolve the issue.
You would benefit greatly from a hospice consult. She can still have procedures and stuff, but they will support you both, clarify things, do things to relieve her more distressing symptoms. Studies have shown that with hospice involvement fairly early patients live LONGER and with better quality than standard care.
If it is already recognized by the familily that the patient is terminal then putting her through painful and invasive tests would just be cruel.Better to be focusing on making her remaining days full of love, happiness and a pain-free as possible.
Specializes in Critical Care; Cardiac; Professional Development.
If there is nothing different they would do to treat her regardless of the outcome of the tests, most good doctors will decline to do the tests just to find out "why" type questions. It was a hard thing to swallow when my family member was dying of cancer as well, but now that he is gone, I am glad I didn't subject him to something simply because I felt so out of control. If knowing why won't change treatment, then does the why really matter?
I wish your family all peace and intimacy with one another as you go through this journey and hope you are able to get in good time with your grandmother. I am so sorry for your pain.
Yeah, bad case management by the hospital. You both needed a counselor and an RN case manager to make sure you were taken care of. It is the job of these people to fill in what is missing as well as to hook you up with the better hospices - you do need help sorting hospices out so you can talk to them and see who has the best services for you both.
I am so sorry for what your grandmother and your family are going through.
If her physicians did not explain to you their rationale for not performing the tests, then ask. But please do know that, from the sounds of it, it would not change anything in the long run. It would be putting her through an awful lot just to "have an answer." It is my belief that the doctors truly are looking out for her best interests, even though I KNOW that can be hard to see.
My aunt became extremely ill at the end of last year, and passed away after approximately 3 weeks in the ICU. She did not have health insurance of any kind. My cousin (her son) was absolutely convinced that they weren't doing "everything they could" because of that. I think this was his way of denying how ill she truly was; there wasn't anything that could be done to get her better.
Please also know that it isn't true; her financial situation is not impacting the decisions that they make. It can be hard, impossible, to see the forest for the trees when you're hurting as badly as I know you are. Spend the time you can with her now, that is the most important thing. You will be in my prayers.
My dad was an MD and died of pancreatic cancer. He still slipped into depression when the oncologist said any more treatment would do more harm than good.
My mom was furious at the Oncologist for not being more tactful.
As individuals in our family we were all cycling through the whole Elizibeth Kubler Ross stages of Grief sometimes switching from acceptance to denial in the space of a sentence! (as one character said on Law and Order "there are four stages of grief, try not to go through them all at once.")
On some level, we all felt like we were just giving up, and turning our backs on him. It felt like walking away, sort of a "Now What, we sit around and wait for you to die?" Those lab tests, transfusions, held hope, and despair. One point better "Victory" worse "now what?" I'm sure you relate.
The hospice nurse said it was not about quitting, winning or losing at this point, it was about letting go so we all could do the emotional work of dying.
Because when someone we love dies, we all die a little inside too. Saying goodbye is one of the single most sad and loving acts a person can do.
I really didn't want to hear that, none of us did, but it was true.
We were able to give my dad support in choosing to say "no more."
He did not want to leave my mother alone (he hated being alone in the house when she was gone even when he was healthy) so this was the hardest for him. They spent as much time together as possible, and he slept a lot in the last days. (The one gift of a low crit, is bleeding out is not painful)
I'm grateful we didn't prolong the medical stuff, just to avoid dealing with the grief we would have had to feel no matter what. I hope he felt less alone being able to talk about it directly with us.
If anything in this post is helpful take it with you. If anything feels harmful or wrong, leave it here...(take what you like,leave the rest.)
thoughts n prayers. jeanette pm me if you need to talk
So few people with pancreatic CA even make it to a year. My dh died in 3 1/2 months. He was fully involved in all decisions. So my question is, did they offer these tests to your grandmother, and did she refuse them?
Sometimes a person is approached in private so they feel free to say what they want, without pressure from family or "disappointing" anyone. The staff will take the heat for the patient.
I am so sorry. It is a horrible thing to have to go through. My Grandmother died a year and half ago. Her doctors believe she had colon cancer. Her previous PCP did not ever have her get a colonoscopy, and by the time her last PCP had her she had so many other health problems like CHF, and he was concerned it would do a lot more damage than good. I had the utmost respect and trust in her last PCP.
With that said I was a new grad nurse who had not had a hospital job at that point. I was so focused on her symptoms, tests, labs, and medications that I realized I missed out on time with her. I wanted her to fight, and have everything done, as did my Mom. I was in complete denial. I was convinced that there had to be something we could do for her. At that point I had stopped thinking like a rational nurse, and acted like a concerned loving family member who did not want to lose her Grandma. I was human. Even healthcare/medicine has it limitations, and that is easy to forget.
The lesson I learned is to spend as much time with her as you can. Do not leave questions unanswered. I know my Grandma loved to travel, but after she was gone I realized I wish I had asked her where her favorite place she ever went to. I would have liked to known, and visited there myself. I wish I had asked more questions about her family in Europe. I have to live with knowing I did not make the most of my time with her, although I was there almost every waking moment the last two weeks of her life. Thankfully the morning my Grandma passed she was still lucid, and we know it was a matter of time. My whole family got the oppurtunity to say goodbye, and have private conversations with her. I am thankful we did have that. She passed with all of her family at her bedside holding her hands surrounded by love.
I wish you the best. I hope that you make the most of the time you have with her. My thoughts and prayers are with you, and your family.
Cancers are well vascularized and thus, bleed. The differential diagnosis is logical. If it has already been determined that she is not a surgical candidate, further workup is futile as it will not alter treatment course. It will be uncomfortable, expensive and yield nothing useful. The outcome is not going to change.
Your best course is to request a hospice referral.
She went through chemo and radiation (surgery was not an option due to her badly diseased liver) This February her CT showed that her tumor shrunk. Since then she hasn't done chemo or radiation. Earlier this month, we rushed her to the ER with severe abdominal pain and extreme fatigue. Turn out her hgb was at a 7 
and needed a blood transfusion. An endoscopy was done. Esophogeal varices was discovered but there was "no evidence of an active or prior bleeding" She was discharged with meds for portal hypertension. Well she's back in the hospital (admitted 6/28) with a hgb of 5 
. They gave her more blood. They were going to perform an endoscopy and a colonoscopy but cancelled it. AND I DON'T KNOW WHY! Instead we got, "we suspect she's bleeding from her tumor" (btw the tumor is in the pancreatic duct not necessarily in the pancreas) and there is nothing they can do. They SUSPECT. 
I'm sorry but their hunch/theory is just not good enough!! I don't need them to tell me she's terminal, I'm fully aware of that. But do they just discharge patients from just suspecting that the tumor is where the bleeding is coming from?? I'm angry because they do nothing to definitively find the source of her bleeding. Do we just stop searching because she's eventually going to die? By discharging her they are telling me, "hey, she's gonna die anyway, why look for an answer" It's breaking my heart. I just want to know how I can get these doctors to not give up on my grandmother. The cancer has not metastasized and I assure you she's not ready do go. But sending her home with internal bleeding is going to kill her. Please anyone that could advise me on how to handle this situation. I'm beyond desperate 
Whispera, MSN, RN
3,458 Posts
What followup care does the hospital recommend since they're discharging her?