Unanswered questions - suddenly lost father

[cmd21]

Hi all, 

I'm new to this group and I'm hoping to get some answers.

I recently lost my father to lung cancer - it was unexpected as he never smoked and my family and I never knew just how sick he was.. he just didn't tell us until he was bedridden. I say we recently lost him, but it happened back in mid-March during the height of the COVID-19 pandemic. We will lay him to rest tomorrow. It took a lot of time to get him home in the states because he was working as a civilian contractor in Saudi Arabia. He was tested for COVID-19 while he was still alive and that test was negative. 

My dad was retired air force, and my mom and sisters and I all lived with him in Saudi years ago, so I understand there can be language barriers at an overseas hospital. But I'd like to know about other experiences, whether they were overseas or not. 

My question is - do doctors ALWAYS tell a patient they are dying? Or does it depend on whether or not family is there/contact information for family is available? My dad had been working in Saudi while the rest of us were in the states for the last few years.

Everything happened so fast and we still have so many unanswered questions. I know these are specific, but I would really appreciate any insight:

1. Did they even tell my dad he had lung cancer? According to email exchanges between him and a friend - nurses were telling him he was getting better. He also told my mom the same thing. He thought he had the coronavirus due to similar symptoms. 

2. Why did they move him out of the ICU when he requested it? I can't remember the man's title, but I know it wasn't the doctor, but someone (seems like someone who handles their PR) told my uncle they moved my dad out of the ICU - is this something typically done when doctors know patients don't have much time left in an effort to make them more comfortable? Would this typically be decided by the family IF they had contact info? I know my uncle was told the lung cancer had spread, but we still never heard what stage he was at.

I apologize for the long post, but I'm desperate for answers that might help me understand how everything went down. It's been challenging to get a hold of someone at the hospital, as there aren't many doctors who speak english at the Saudi German hospital my dad was at. It's also been difficult to get detailed answers from the company my dad worked for. I know things may have been different if he was here in the states. 

Thank you!

[Tom Galli]

CMD21,

Very sorry to learn of your dad's loss.

You've posed tough questions. Not many of us have experience being treated in foreign hospitals as expatriates. I know from my career in the Army, overseas hospitalization is difficult because procedures are different and of course there is the language barrier.

Do I understand your dad was in a German Hospital located in Saudi Arabia? If so, that would suggest treatment protocols very similar to those in place in the US. If he was in a Saudi hospital, patient treatment would be vastly different from that available in the US or Germany. With that preface understood, here are my answers.

Would doctors tell your father that he had lung cancer? I can't imagine a reason they would not tell him. The diagnosis process for lung cancer is well understood. A simple guided needle biopsy with tissue examined under a microscope is all that is needed to confirm a lung cancer diagnosis. Why would doctors withhold revealing a diagnosis? Nurses are well intended and during my extensive hospitalizations, they often told me I was getting better. This made me easier to deal with. That might explain the nurses explanations.

Why movement from ICU treatment? There are a number of plausible explanations. Cost is a consideration. ICU treatment cost is 4 to 5 times more expensive than a normal hospital stay. Perhaps your dad was concerned about his treatment cost. When an ICU patient nears death in US hospital systems, a different set of care protocols is often put in place rather than moving to an other hospital location. Those that I am familiar with include a hospice-like care method focusing on keeping one comfortable rather than curative care. Do doctors make these determinations without consultation with the patient or family? No, not in my experience. Doctors provide an opinion on future treatment prognosis, explain the rational for the prognosis, and let family or patients make decisions.

When one learns that lung cancer has spread, it is often reported that it has become wide spread and certain forms of lung cancer can spread quite quickly.

Keep in mind, my answers could be far off the mark.  I've had extensive hospitalization in my treatment history and have attended many lung cancer patients during their hospital stays. These inform my opinions and answers. 

Stay the course.

Tom

[cmd21]

I appreciate your reply Tom. 

I'm not really sure if it was a German hospital.. all I know is that it's called Saudi German Hospital, managed by the Middle East Healthcare Company. I feel like things were done in more of a Saudi hospital setting - but I'm not sure. 

Thanks for your explanation of ICU treatment costs - I didn't even think about that and I know he wouldn't have wanted to leave my mom with expensive hospital bills. 

I never actually heard about him getting a biopsy done, just a chest x-ray. I wish I knew more of how his doctor initially began treating him! An autopsy was done on my dad yesterday and we should be getting results fairly soon. 

Thank you so much for taking the time to help me understand this situation! 

[Rower Michelle]

Hello, 

I can share my experiences with you; maybe it can provide you some comfort.  I'm so sorry about the loss of your Dad; particularly under these circumstances with so many unanswered questions. 

Did the doctors tell me I had lung cancer:  upon admission to a very reputable hospital, the doctors and nurses tap danced around a three day hospital stay for atypical pneumonia.  No one mentioned the possibility of cancer.  I was a 51 yo non smoker.  When the biopsy was ordered, it was to rule out a fungal infection.  In looking back at the CT scan, I believe they knew what they were dealing with, but didn't want to say anything,. Even the medical records had a few scant references, with statements like odds of lung cancer are remote.  Upon discharge, the nurses and doctors said I was making wonderful progress, but I didn't feel any different, in fact I felt worse.  I just wanted to go home and busted out two days earlier with a promise to follow up with outpatient care. 

Do the doctors tell you are dying: I was referred to a major academic center following the biopsy.  My oncologist never clued me into how ill I was.  I had no insight.  I had to obtain a copy of the medical records to file an insurance appeal, it was only then I learned how much trouble I was really in, heading downhill fast.   I had to ask my doctor was stage the cancer was.  He didn't volunteer the information.   I run a lung cancer support group in KC, my experience is not unusual.   

COVID vs Lung Cancer and X-Rays:  I've seen a lot of reports at the beginning of the pandemic, that COVID was difficult to diagnosis with an X-Ray.  COVID presents similarly to LC with something called "ground glass opacity".  On the X-ray, it looks like the lungs are covered with fluffy white cotton.   Three months later, the medical community is much better at making differential diagnosis. 

Moving from the ICU:  here in the US, the ICU is typically  a time limited level of care where there needs to be a reasonable expectation of improvement.  Insurance companies will often limit payments to the ICU.     Five years ago, my Dad had near fatal cardiac event, after three neurologists declared him brain dead, we opted to move Dad out of the ICU to a supportive facility. My Dad's hospital stay was while short, over one million dollars.   

Parents with cancer and adult children;  My mom was just discharged from the hospital after a six week stay for a cancer recurrence.  For the last year, my mom has hoodwinked us into believing everything was fine.   I spoke to her oncologist only to find out my mother's cancer recurrence occurred a year ago!  She elected not to share any of this news with us, including my Dad.  I'm sure Mom has her reasons for this, but wow, that was a doozy.   

If you're running into serious road blocks, you might want to contact your Senator and engage the State Department in order to gain some clarity.   

Thanks for dropping in to ask questions.  Let us know if you have any others.  We're here to help. 

Michelle 

[cmd21]

Hi Michelle, 

Wow! I can't believe the process you had to go through just to get your own information. That's crazy to me!

That's interesting with the ICU. I've tried googling general information on that process and wasn't able to find anything helpful. Thanks for letting me know about it being usually limited time care. 

Oh man, what a tough situation to learn about with your mom. I wish parents told us everything when it comes to their health! My dad definitely minimized the problem to my mom over Skype when he first noticed he was feeling sick. Everything happened pretty fast afterwards. 

Yes, my mom is still working through details to get more answers and we will definitely keep that in mind about reaching out to state officials. 

Thank you so much for sharing your experience. Hearing from others has definitely been helpful.