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Every Hospitalized Patient Needs an Advocate!
We 'mericans are so trusting of our doctors and nurses, it never occurs to us that, if we are hospitalized, we need an advocate to help make important medical decisions. That's the doctors job, right?
In a perfect world, yes, that's the doctor's job. Also in a perfect world, they are committed to providing the best care they know how to give above all other factors, including their own well-being.
Unfortunately, we don't live in a perfect world. Here are a few factoids that WILL interfere with your care:
Protocols. These days, there is a standard protocol for every disease. Doesn't matter who YOU are or what your individual needs are, the Established Protocol dictates your treatment. No discussion. And many of these are MANDATED. The doctor can't vary far from that treatment even if s/he wanted to!
Errors. Doctor and hospital error is the 3rd leading cause of death. Some say leading. We don't know for sure because hospitals don't keep close count of the number of people they kill. Bear in mind, too, that these numbers are just the dead. They don't include the INJURED: sponges left in bodies, wrong limbs amputated, open heart surgery instead of gallbladder removal.
Financial incentives. Did you know that doctors and hospitals are financially rewarded for diagnosed Covid patients, patients on vents, use of Remdesivir and Covid deaths? Do a FOIA to see how much your doc/hospital is being rewarded for each. It's literally sickening.
Illness interferes with logic. When you are unwell, you don't think straight. Add anxiety and fear and there's no way you can be counted on to make rational decisions. If you can't count on your doctor to make the best decisions for you (and I am saying with 100% confidence that, during Covid, you can't. In fact, please don't.), you need to have someone there to help you make life or death decisions.
Bulldog. Remember Shirley MacLaine in Terms of Endearment? If I'm ever in a hospital again, wouldn't you want her there looking out for you?
Without a Patient Advocate
Your loved one is lying in a hospital bed, so sick they had to GO to a hospital, alone most of the time, and, if lucid, wondering what happens next. Nobody tells you the schedule. You are completely dependent on the doctors and nurses for TLC and life-saving care.
I've been in the hospital on my death bed. I can promise you that there are doctors and nurses who are cruel as Cruella. The truly kind, thinking ones are overworked and stressed... they are human, no superpowers, charged with the hardest job on the planet: make sick people well.
If you believe your loved one's treatment is NOT benefiting them, you have every right to be an advocate for that loved one and demand different protocols.
What is a Patient Advocate?
Someone, preferably a Shirley MacLaine bulldog type, who can help your loved one make important decisions, or make them for her with the family's input. If they have a medical power of attorney, all the better.
First choice is a family member. But it's gotta be the hard-ass in the family. Otherwise, hire someone. Doctors and nurses don't like being questioned about The Protocol and the situation can be quite intimidating, especially at first. If the hospital can shut you down, they will.
Last choice is the doctor or nurse on staff in the hospital. To cut to the chase, they have other allegiances. Your health is not at the top of the list.
Good to remember that very few Covid deaths are at home. Almost all of them are in a hospital. The exact opposite should be true.
How to Be a Patient Advocate
These notes are from Dr. Bryan Ardis' interview of Patient Advocate Michelle Rowton, MSN. Well-worth your time to watch!
Before Going to the Hospital:
Prepare a folder NOW to take along with the following info:
Your treatment preferences (see below)
Put in writing that you are refusing both Remdesivir and a vent
Print this Remdesivir post and include
Have a medical POA ready to be signed by your Patient Advocate
First decide what you'd like to have happen. Be specific and put it in writing so you are able to be perfectly clear when the time comes (see next section "family conference").
Ardis says demand high dose IV vitamin C. China was using 35,000 mg C a day. Within five days, everybody went home and was fine.
The "Family Conference"
In following the steps below, your immediate goal is to get a family care conference* which will include the nurse, the charge nurse, maybe the manager, social worker, respiratory therapist, and at least one of the physicians involved (if not all of them). This can be on the phone, zoom or in person. You want everyone present, then tell them, "We're not happy with care."
*Family care conference or a patient care conference for the family. Hospitals call it different things, but they'll all know what you're talking about.
This is huge. Once everybody has to stop what they're doing, get on the call, and you have an audience, you have a good chance of getting the therapies you need, over just randomly talking to one person at a time.
"Chain of Command"
Your chain of command (order in which you contact those in charge of your loved one's care) is as follows:
nurse manager of the unit
director of the area
Do not let them direct you to the case manager. The case manager is useless to you, 0% power. The case manager's job is to make sure that things are organized for discharge, everything is charted for insurance or Medicare. If you are connected to a case manager, do not listen to them (sorry, but be rude) and demand to be put in touch with the next person in the chain of command. Connecting you to the case manager is trying to get rid of you!
AFTER HOURS CHAIN OF COMMAND
On nights or weekends, it's charge nurse, then house supervisor. Bear in mind that house supervisors are the busiest people in the entire hospital. If someone is coding, they have to be there. Give them a solid 90 minutes to call back. If when you call back and the charge nurse says house supervisor is detained, say, "I'll call back in 30 minutes if I haven't heard anything. Thank you so much. I know you're busy."
The charge nurse can also call their manager at home. Charge nurse will have her managers phone or pager.
Steps in getting to a family conference
Keep detailed notes: what time you called, who you talked to, what message you left. Record your calls if you can. GIVE DEADLINES TO CALL BACK.
#1 Call the unit and ask for the charge nurse. Say, "I am calling to let you know that I'm not happy with my [loved one's] care. He is not lucid. He shouldn't be making his own medical decisions. Nobody is calling me from the medical team for updates or asking for my permission. And I feel like he is being medically neglected because you're not doing everything that you could be doing to make sure he gets better."
If the charge nurse is not immediately available, leave a message, saying the above and add: "I need somebody to call me back within an hour to let me know how we're going to rectify this situation."
It's the charge nurse's job to handle problems and YOU are going to be a problem. You want them to understand that. And be a big bulldog problem!
#2 Set your alarm. Right at an hour, call back and say, "It's been an hour. Nobody has called me back. I need to speak to your nurse manager. I need the manager to call me back in 30 minutes. Otherwise I'm going to come there and we're going to do it in person. I respect that you're busy. I respect that there are a lot of patients, but I'm telling you that, right now, I don't feel like my family member is safe, and you're not responding to me."
#3 Keep going thru the chain of command until you get to admin.
Always go through the chain of command to show you're being respectful of the hospital system. Then, if you've had no satisfaction, when you finally get to administration, you can say, "I called the charge nurse at this time. Nobody called me back. I called again, asked for the nurse manager, nobody called me back. I called again and asked for the director. Nobody called me back. Now I'm calling you."
If you feel you have time, you can back up to the previous person in the chain, give them a second chance to call you. Let them know you will keep going. As long as you're giving them timelines and staying with it, you're going to get somebody to call you back.
#4 When you get to the administrative office, start using words like lawyers, families, team of lawyers, tell them you'll hire your own private advocate.
#5 Demand the family conference. Be prepared to ask questions then demand the treatment you want your loved one to have.
What if the Doctor is an A-Hole?
Sometimes you get a doctor who poopoos everything you're saying. You can say, "Hey, you're not being a very nice person right now. I'm going to hang up. I'm going to call the manager back and say, that was not successful at all. Now I'm more fearful for my loved one's life than I was before."
One option is to fire that doctor, which you can do. Doctors may "know the protocol" but they still work for YOU. If your loved one is not improving, you call the shots.
The Hospital's Patient Advocate
Hospitals are supposed to provide you an advocate. Most of us think that person will simply side with the hospital, but that's not always true. Demanding an advocate is a trigger to a hospital's admin. You say, "Hey, we need an advocate assigned to the situation because it's ugly over here. We're very, very unhappy." That is a trigger that this could turn into a legal situation, and nobody wants that because it's expensive.
The same is true when you hire your own patient advocate: it's a trigger. Now you're going outside the system for advocacy. To the hospital, this means the next person you're going to call is a lawyer.
The biggest thing is informed consent. When someone is on 50 liters of oxygen, that's hypoxic. They're not lucid enough to give informed consent. Hospital staff should be going to next of kin, have had the patient sign a medical power of attorney when they walked in.
If you have to drop someone off at the hospital, immediately ask for a medical power of attorney form and have the patient sign it over to their patient advocate: either hired or whoever the hard-ass in the family is.
Patients who are held hostage without visitors have been medically kidnapped. And it's not okay. They deserve visitors. They deserve an advocate, especially if they're that sick. They should have an advocate there with them period.
In some states, you may not limit visitors to less than one. I'm not sure what the law is in KY but I will find out.
I will also find out about clergy. Are clergy allowed to visit patients in KY? If so, can our clergy deputize other people to do their work for them in a time of emergency?
In TX, a doctor can write an order stating that, for safety purposes, a patient cannot have visitors for 5 days at a time. Michelle says, "If you write an order saying I can't come in, I'm probably going to turn you into the Texas medical board for emotionally abusing your patients, just to be clear. That's going to happen."
Patients have rights.
Your loved one has a right to an advocate so that they can be safe and so that their care is HELPING them, not HURTING them.
Call me. I am an excellent bulldog patient advocate.