Now I Have to Play God? So Daddy and I visited a lung specialist today who confirmed that there is a mass in his chest. With daddy's advanced age and other conditions, he feels it may be best to just let nature take its course.
The thing is...Daddy didn't make any advanced directives when he was of sound mind, and I'm left with the burden of deciding whether we should keep him alive when this mass rears its ugly head.
I have no support system as many of you know so I feel very alone right now. In a normal world I would discuss with the family but I can't take being railroaded by them right now or being called selfish for a DNR decision.
I'm angry. Why does this fall on me? Why should I suffer because he chose to smoke?
I'm afraid. I don't want this responsibility. I'm sad. I'm essentially left to decide his ultimate fate. I feel like a murderer.
This isn't fair. I don't know what to do.
My personal experiences with ca lung are as follows:
My father wanted to live. He had a lung removed, lived another year until 66. He was able to complete one more tree surgery job.
My mother's husband, with lung Ca, refused even blood transfusions because of his religion, died within 3 months.
That said, skipping CPR for a very elderly person is not always wrong, epsecially if the occurrence is going to signal a heart just going out completely and not a reversible arrhythmia. For example, if someone had really bad pump failure (cardiomyopathy) and they are not a transplant or implant candidate, CPR would make very little sense; if they had a pacemaker failure it would be different. The chance of survival post CPR in the elderly is low, though not zero, and survival to hospital discharge even lower. You can specify defibrillator and drugs only and you can temporarily lift the DNR if surgery is going to be done.
Trust me on this. You want to know what a feeding tube, a ventilator, and CPR, do and do not entail and you want the authority to stop chemo, dialysis, or any other burdensome treatment that is not giving any meaningful survival to someone.
We faced this with my MIL; one niece thought a simple feeding tube in the nose meant you had to stay in bed and could not talk..most people do not know that a PEG tube (simple surgical or even interventional radiology procedure) may be perfectly comfortable and people can still eat what then safely can and want to by mouth; it may not make sense to do even that in the setting of advanced dementia, but for someone who can't swallow due to a brainstem stroke or a neuromuscular disease it is often a different story. They are supposed to explain the medical side to you, and you just have to be wary of value judgments or blanket statements that misapply what is true for one group of people to your loved one's specific situation. Sometimes the most important thing you are going to do is to tell and show them what your loved one was able to do before an illness, so they do not assume that an 80 year old grandma who was working in her garden and playing with the grandkids every chance she got was done with living and does not need to get antibiotics if they come down with pneumonia or meningitis.
Jessie, unless another family member made a stink about it, I really don't think that there's a lot you can do, but if they were to go after the Dr, who went against the patients wishes, I do believe they Could press charges. Now how unfair is That? As in a time of Crisis, when seconds count, and the mistake is made to "do no harm", how could someone actually press charges, for trying to save someone's life?
It's a terrible catch-22, if you ask me! It does happen thou! Imagine being the long lost Son, who hasn't seen nor been involved in their Old aged Mother's care, for donkeys years, then he presses charges against a Dr? Imagine the Judge that has to hear That Case?!!! But they win, and that is why Malpractice insurance is so insanely costly!
Then there's the rib cracking that, from what I understand will likely occur. I've never had cracked ribs but I'm guessing it would be very painful. Add that to the other existing conditions, and I think anyone with multiple comorbidities might be worse off afterwards.
I'm certainly not against CPR; I just think that at some point, keeping someone alive for a questionable if not poor quality of life isn't favorable to the patient.
I know if it were me and I had multiple co-morbidities and a poor quality of life, I wouldn't want to prolong that.
Personally, I think that a Cardiac Arrest at age 100+, is Gods way of saying that their frail body has had enough, and that we should let them go naturally. We can't keep them alive forever.
I have witnessed a situation with a 53 year old patient, who had a sudden Pulmonary Embolism, and even though aggressive CPR was done immediately, and paramedics arrived within 3 minutes, the EKG, and Defibrillator pads were attached, that the Defibrillators are so advanced and Safisticated, that the monitor "Speak out loud", to "Defibrilate", or "Do Not Defibrilate", as ther are instances where Shocking will not work, or is ill advised. DEFIBRILLATION does not always work either.
Its best to have a clear cut plan of action, Before you are faced with this situation. Decisions under stress and duress, are a bad idea.
stacey - you make some very good points. Things can happen very quickly and emotions run high. That's why these documents exist.
I definitely understand your Loving and Cherishing her, as I did my own Mom, God rest her soul. I too take care of my own 87 year old FIL, in my home, and have for the past 13+ years, and I (along with his Son) also am his Healthcare proxy. He and I have had many a discussion about end of life care and crisis care. He has an Advanced Directive which is very specifically completed, and I will abide by his wishes. At any time, should he wish to make changes, that too!
Having worked in Healthcare for 30+ years, including the Cardiac and Pulmonary department, I have seen on many occasions, patients "go down, and go unconscious" and unable to speak for themselves, and this is where those Directives come into play, as there is not a lot of time, sometimes only seconds, between calling 911 and the paramedics arriving, that CPR needs to begin, and checking to see if an Advanced Directive is in place, let alone call around to see if the Medical POA/HEALTHCARE PROXY is available for consultation, to make the crucial decisions to begin Cardio and Pulmonary Resuscitation, is not a viable option, and there could be the possibility that you aren't there with her at the time. Sadley, in some cases CPR was done, when the patient or family would have preffered that it not have been, and long term health issues then come into play. So honestly, "ask me at the time", is not a very smar decision.
I highly recommend that you research THE 5 WISHES. Which addresses Medical, Legal, Spiritual and Personal desires for end od life care, and is clear, consise, and addresses everything that I can think of for Loved ones discussing what is best for them. It also opens up a good family dialog, so that everyone concerned, or involved can understand the desires of the patient. But mainly, these are decisions the patient must make, and we as their Loved ones can abide by them with the confidence that it is what the Wish!
I love that you Love your Mom so very much, to do right by her, no matter how old she is! Age is just a number!
I don't believe Anyone should have a BLANKET Directive, and also believe that Advanced Directives should be discussed and Updated from time to time, as long as the Patient understands the decisions they are making.
Dont put him thru this. You have many here's support --thise who have been where you are or know the pain and frustration of dealing with surgery that turns into long drawn out tumultuous recovery that sometimes never comes...just multi hospital visits to treat infections, woulnds that wont heal, dehydration, weakness when they cant get back in their feet.
Save you and your dad the heartache.
Im my opinion, the Dr wanted to press you on the issue specifically regarding CPR, as they don't always have the time nor resources to find you and discuss whether or not you would wish them to proceed with CPR, and that goes for Anyone, not just your Mom at age 100, and still wanting to live.
IMO, the time when people fill out their Health Care Wishes, is normally a time when they Are of sound mind, are clear thinking, and would want their wishes abided by, even though at the time, it is a Very difficult decision to go along with them.
Our Mom had a very difficult time making those sorts of decisions too, at the end of my Dad's life too, for religious reasons, so I am most certainly not judging you.
Wow, 100 years old! That in itself is an amazing feat, and one not many achieve too often, you should be happy to have had your sweet Mom this long, and also that you come frome a good line of healthy DNA!
In the end, my recommendations to you are to decide on those most urgent decisions that require immediate attention and stick to them, acting as if you were your Mom making them, and if your Mom is still of sound mind, discuss them once again, and update her Advance Directive or 5 Wishes forms, and let them stand, this way, it is taken out of your hands at the time of high emotions. Then, there should be no guilt attached to those very tough decisions during a crisis. It is always tough though!