Go to the hospital with Covid or not?

[Pamer]

I have some decisions to make. In the US can I leave the hospital once in ICU to die at home? Many hospitals are allowing no visitors. I have CLL, COPd, RA, an artificial valve, asthma, hypothyroid and moving into alcoholism. I won’t survive if vented and am horrified at the prospect of dying alone on a vent after having been on one for 30 days 9 years ago and 10 days 8 years ago in which I was not appropriately sedated and hallucinating the whole time. It kills me to think of dying that way alone but I have hopes that bipap can help with breathing or high flow oxygen. Should I go to the hospital if sick? I’m afraid they won’t let me come home to pass if I do??? Scared an isolating with my closest family.

[GMa27]

Well, hopefully none of us has to make that decision. Once you're in a hospital, you will not be able to sign yourself out. Anytime someone is in a hospital, insurance won't pay if you leave. That can burden your family.

So if you feel that way, I guess you will have to stay home. No visitors are allowed. You had a bad experience with being vented. I can't imagine. But doesn't mean it will happen again. I fortunately have never had that happen to me. No one wants to be separated from family, but if there is any chance of beating the virus and you have severe reaction, you won't be able to control what happens when/if you get admitted.

Make sure you stay home. Hopefully you either live alone or anyone you live with also stays at home. Then you will have a good chance of not contracting it.

Sending prayers! 💕

[Jonquiljo in reply to GMa27]

As far as I have experienced, leaving the hospital “against medical orders” - i.e — walking out does not give your insurer a reason to refuse to pay your bills. My wife has “walked out” a couple of times, and insurance pays.

I have been told that this is misinformation commonly given by hospital staff - to keep you in a hospital.

I’m sorry you have to be in this situation- and hopefully you can avoid being infected with the virus. It is a challenge, I know. Good luck.

[DMary]

Hi Pamer. I dont have your medical challenges beside CLL but this has been on my mind as well.

I do have an advanced directive that I've discussed with my family. I do not want intervention to prolong death, so unless the treating physicians believe I have a very good chance of recovery and a quality of life I've discussed with my family, I would refuse isolated care and/or ventilation and seek hospice care.

Several of the patients in nursing homes here who passed from covid19 did so in hospice care or at home, so I know this is possible.

Advanced Directives and patients (or their medical power of attorney) have choice in treatment, including discontinuing treatment. With your history and concerns your rights and wishes should be respected.

(I have no idea about I insurance refusing to pay for care, as mentioned above. The hospital systems in the 2 states I'm familiar with respect choices to decline extraordinary intervention.)

[gardening-girl]

Dear Pamer, your question is one that is being discussed among members of my family right now. None of us have had the experience that you've had being twice on a ventilator, but we realize that we need to make our wishes known to each other in case any of us experience severe COVID-19 symptoms. Do we want to be hospitalized? Do we want to be put on a ventilator? For how long? When is enough, enough?

You Palmer, certainly don't need to read this New Your Times article, but there may be others who could benefit from reading it.

What You Should Know Before You Need a Ventilator

"It breaks my heart that patients who will get sick enough to need them won’t know what desperate situations they face."

By Kathryn Dreger

Dr. Dreger is a doctor of internal medicine in Northern Virginia and a clinical assistant professor of medicine at Georgetown University.

April 4, 2020

nytimes.com/2020/04/04/opin...

[camper2 in reply to gardening-girl]

Thank you Gardening Girl for the article. I had seen a ventilator as a panacea but now feel very differently about what the side effects might be. I would always want to weigh up the pros and cons of treatment and now appreciate that Covid19 doesn’t give you that time - best to think about it now. And I will!!

[virdieblue in reply to gardening-girl]

Valuable if difficult information. I've passed it on to my son.

Virginia

[WinJ3]

You hang in there Pamer! All will be better in the weeks ahead. Best wishes for you 🙏🏽

Win

[schmitthj007]

My goodness that is a lot you have to deal with !!! So sorry. Patient’s autonomy and self determination is regarded very highly in the US and it is important that you think about those issues ahead of time and communicate your wishes to your relatives or better put it down in a living will in writing. There are Do Not Resuscitate and Do Not Intubated options for patients in place if they chose to. The situation is more complicated if you are in the hospital without those orders and you are on a breathing tube. While care can always been withdrawn at any point in time meaning one can take the breathing tube out even if the patient is dependent on the breathing machine it would not solve the dilemma that you would die alone as a COVID-19 positive patient. I think this is truly a very sad and devastating part for those patients and their families.

[E-Lynn]

In normal times, we have choices, like .. I think I will leave the hospital and go into hospice care rather than a ventillator. These are not those times. These times are more desparate. Most hospitals are sending ambulatory COVID patients home to quarantine there and only keeping the most seriously ill. You would never be able to check yourself out if seriously ill as you would be a burden on the system .. how to get you home, who would you infect on the way or once there .. and to be blunt, who will handle your body once you have passed. This is like the old plague, sadly. And as to hospice .. would you want someone to risk their health to care for you? Am I too harsh? As I watch what is going on in NYC and what happened in the nursing homes in Washington state at the start, I realize that I'm not going out at all. I suggest we all do that. Just stay at home and ride this out.

[Hidden]

Hello Pamer: Your desire to die in familiar surroundings is not uncommon. What normally occurs is panicking as your physicality begins to shut-down. If you possess a strong will, are able to maintain your composure and can avoid a friend or a loved one calling emergency services to take you to the hospital, you will likely succeed in realizing your wish. Once you are in the hospital and begin to decline, the hospital and doctors will normally do all they can to keep you alive and will often ignore any written directives you may have submitted. Once in the hospital you become their responsibility and you will likely not be in any condition to execute an escape. I highly respect your position as it is much like my own. When the time comes I wish you a peaceful transition and a glorious reception in a kinder gentler place.

[4Glory]

Hi there, I read all the replies and it appears you should set up health proxy with advance directive specifically relating to Covid-19 and ventilator right away. Just use the internet to get the appropriate forms for your state and you and your family can prepare it. Best wishes! Smart isolation really does work, so hoping you don't need this pre-planning! ~Lisa

[1962jns]

I do not want to go to the hospital if my symptom got bad. I’d rather stay at home and beg for the meds that seem to be helping even though they are letting people die before trying them. What’s wrong here????

[Davidcara]

Hi Palmer, you can always leave the hospital against medical advice. The question is, will you we too sick to do that. You would need to be strong enough to actually leave, and have somewhere to go. In addition, you would need to have someone willing to care for you, while exposing themselves. In normal times, medical staff will help patients go home on hospice, to dye at home with there family. But these are far from normal times. If you go to a hospital that is overwhelmed, the staff might not have the time or resources, to help you get back home.

[Pamer]

Thank you all for your thoughtful heart felt comments. I discussed this all with my daughter and husband. Neither were very receptive to even discussing it. My daughter was very upset. They do not want me to die at home and witness me not being able to breathe and perhaps suffering without being able to help me. As I’ve survived ARDS 2x and sepsis they want me to try and survive this should I happen to be unfortunate enough to contract it. All I guess I will do is make my wishes known to be heavily sedated throughout and pray for the best. At least if sedated appropriately I won’t really be aware of it all I hope. Even though the sedation is like one long nightmare. I’ll make sure the family calls regularly to ensure this. Here’s to isolating. Another post on that argument later, lol. Thank you all again. Gave me a lot to still think about.

[Soundsinamotion]

Hi Pamer just checking in on you a year later after just reading your post, how are you doing? I hope you are well.