My mom is frail, 88, chronic dementia and 95% bedridden. She has been at a CA licensed residential Board and Care for a few months, many weeks of which she was away in hospital or SNF. Her Physician Orders for Life-Sustaining Treatment (POLST) has been in place for three years, indicating her wishes of DNR and Limited Medical Treatment, the details of which are included in her advance directive. On Monday, she was found unresponsive and without a pulse. The caregiver called 911 and then called me. I later discovered through the admission report and the EMT statements that the caregiver had administered chest compressions prior to their arriving. Mom is not doing well and is in a lot of pain, the entire attending hospital staff knows what happened and is astounded, as am I. I called the owner of the facility to ask why this happened. He denied it, stating that the staff is not allowed to touch the patient, just to call 911 when there is a DNR in place. He called me back after a few minutes, following an inquiry to the residence. His story changed and said that the caregiver had started the chest compressions at the instruction of the 911 dispatcher. (since when do these instructions override a legal document?) I have filed a complaint with the CA licensing board, what else can I do?
I am glad that you have made arrangements for your Mom to receive hospice care at a new facility with private pay caregivers and that you have arranged that the caregivers will NOT call 911 if something happens with your Mom.
I think that you need to focus on your Mom as she is today and not worry about what "might have been". You cannot change the past, but you can make your last days and weeks with your Mom as happy and memorable as possible. Look at old photos, ask her about the stories behind the photos. Do a audio or video history with your Mom. Ask her if there are special items or belongings that she wants to give to a specific person. Enjoy the time that you have with her.
In regards to the ALF staff stating, "Don't worry, if she falls again, we'll call an ambulance like we always do" when you were at the ALF and found your mother trying to stand on her own. The ALF staff might have be quoting the policy and procedure for "What to do when a resident falls." Our ALF staff are NOT allowed to assist an resident off of the floor, the rescue squad has to be called every time and they have to assist the resident off of the floor. (Sounds stupid, right?) BUT that is what their POLICY is.
Talk to the Nursing Supervisor or Director and ask her what the policies and procedures are for assisting someone off of the floor after they have fallen. That way YOU will know WHAT TO EXPECT if your Mom ever does fall at the ALF.
Sometimes what we expect the nursing staff TO DO or NOT DO for our loved ones, is not the same as what the facility's Policies and Procedures are. As a result, the nursing staff is put in the middle between family members who want certain things done a certain way and the facility; because legally the nursing staff are required to follow the facility's Policies and Procedures (and if they do not, they can get into trouble with their State Board of Nursing for NOT following the P&P.) So how does the nursing staff serve "two masters" while also taking care of the resident??? Something to think about.
As has been discussed here. When you are under Hospice, you do not call 911, you call Hospice. When 911 is called, they have to try and save the person's life. It is the law. Otherwise, why call them? To me, this is why you want to get your loved one on hospice. If they are in a facility, get them at least on Palliative care. I just went through this with my Aunt. Thank God she was still coherent when she was admitted and she told them herself she did not want to be resuscitated, and get the oxygen mask off her face. She was admitted to Palliative Care and when she died, we held her hand as her heart stopped and she quit breathing.
My father died at my house back in 1974 before hospice. We knew he was terminal, when he died, we called his doctor who came out, pronounced him dead and we called the mortuary.
The American Heart Association (AHA) developed "Hands--Only CPR" in response to people refusing to perform the mouth-to-mouth breathing portion of CPR because they are/were afraid of getting an infection or illness from the person who is lying on the ground. The American Heart Association along with fire departments and hospitals throughout the US are promoting this version of CPR.
According to the AHA website: "Hands-Only CPR is CPR without mouth-to-mouth breaths. It is recommended for use by people who see a teen or adult suddenly collapse in an “out-of-hospital” setting (such as at home, at work or in a park). It consists of two easy steps:
1. Call 9-1-1 (or send someone to do that).
2. Push hard and fast in the center of the chest. "
See the American Heart Association website for more information: https://cpr.heart.org/idc/groups/ahaecc-public/@wcm/@ecc/documents/downloadable/ucm_493890.pdf
In regards to a tattoo that states "Do Not Resuscitate" or "DNR". IT might NOT be HONORED!! In the 1980's or 1990's, a RN got a tattoo on her chest that stated: "DNR" or "No CPR" (I don't remember which) with her signature copied onto her chest. She was told by the EMTs at the Fire Dept. and by the Hospital ER Dept., that if she collapsed and wasn't breathing and had no pulse, they would STILL HAVE TO DO CPR, because the TATTOO was NOT A LEGAL DOCUMENT--the tattoo had NOT been "Notarized"!
I just had to place both my Mother/Step-father with an assisted living group home.
They require this information and are legally bonded to follow the directive.
Your Mother is MOST LIKELY being taken to a hospital that the facility has contracted, so they're making money billing Medicare/Medicaid and any other health insurance you may have for your Mother.
You may want to find another facility. This one is being negligent to your Mother's wishes as well as scamming, but people are too afraid to stand up to facilities caring for a family member because that could create Elder Physical Abuse, not giving needed medication etc.
Go to the hospital where they are taking her. Go to the Director of Patient Welfare, give the Director a copy of the Directive. Then inform him/her that IF they do not follow this Directive they will be changing the name of the hospital because YOU as your Mother's agent have the right under HIPAA to SUE THEM.
I would also ask to see the records as to WHO has signed her into the hospital, the attending doctor(s) AND DEMAND A MEETING WITH THE DIRECTOR OF THE HOSPITAL NOW!
You'll get the run around, but screw that; go to his/her office start out politely to see the Director, do not take NO for an answer. As this goes back/forth become more agitated until you get what you want. Get the phone number of the Hospital Board Director and go to him/her. You may find that information in a brochure. It will provide you with the name, occupation AND the name of the company he/she works. Just go down that list.
TRUST ME....you'll get your answers.
I question why there isn't a nurse or other trained medical person at that facility that is called when a person is found unresponsive--doing chest compressions should only come after a proper assessment of breathing & the reality that one person can continue with CPR (not just chest compressions) until emergency services arrives. Your mother's heart apparently was beating, albeit weakly, likely due to the MRSA (which she got at that facility and should be a bigger gripe than the chest compressions, quite honestly--she would have lived with or without those chest compressions because she was still alive). How she contracted MRSA in a non-medical facility is a MAJOR issue---that means that someone else in that facility has untreated MRSA that has been spread to other people by caregiver(s) that have not washed their hands between touching the people there. I would have a much bigger concern about that issue much more than the chest compressions issue. It sounds like this "Board & Care" facility is taking in medically complicated people that they are not qualified or trained to handle. If someone there has MRSA that is not being treated, that is a MAJOR problem in my book. MRSA requires IV antibiotics, isolation rooms, gloves & gowns, very careful hand washing after contact, etc. Since you likely paid quite a bit of money for your mother to be there, you should be very angry about your mother getting MRSA there. That indicates totally inept care, poor housekeeping practices, lack of hand washing between contact with people. For the amount of money you were paying, that should not happen. If it were me, I would have scheduled a sit-down meeting with the administrator/owner of the place to discuss a refund of some of the money you paid---you paid for quality (non-medical) care, but they clearly admitted your mother when it is quite obvious that her needs exceeded what they were/are able to provide. To me, that is unacceptable. These places have money signs flashing in their eyes when they see somebody that can afford to pay to stay there and they will often take people that should not be there. "Assisted living" means that a person needs "assistance"---meal prep, laundry, social activities--someone that is 95% bedridden with severe dementia needs far more than "assistance", they need skilled nursing care.
I am not familiar with "Board & Care" facilities since I live on the east coast, so I looked it up & found that it is the same as what we call "Assisted Living". The way you describe your mother's condition--frail, severe dementia & basically bedridden--she did not belong in that type of facility to begin with. That type of facility cannot possibly have the type of care that she required/requires---just the fact that she is basically bedridden would require staff to turn & position her regularly to avoid bedsores. If she is incontinent, her underwear would require changing frequently.
I do hope that when she is discharged from the hospital that you don't put her back in that "Board & Care" facility. Try to get her into a hospice facility. If the "Board & Care" facility can't get CPR correctly, they damn sure can't get hospice care correctly either. Furthermore, unless she is in the care of family that would sign for responsibility of her care, I am not sure about the legalities of a non-medically trained person administering hospice medications like morphine to her, since that is considered medical treatment & "Board & Care" facilities do not provide any medical care. I would be very leery of any non-medical facility telling you that they can handle whatever hospice orders. People on hospice need more direct monitoring so that care can be provided. I don't think this "Board & Care" facility can meet her needs now.
Anyone just filling out their wishes is not good enough. You have to have a DNR, and some states require 2 medical doctor signatures. So when the wishes - 5 Wishes Booklet or Living Will is completed and signed, you must then talk to the doctor when the time is appropriate to have a DNR. And then EVERYONE needs to know. In hospitals and other places, even at home with aides in and out, there is so much change in staffing that many times, someone could be covering for another nurse/aide while the one is on break, and I'm sure you could understand that in hectic areas communicating that someone is DNR can get missed. Sometimes death can occur quickly and unexpectedly so if someone is unsure whether there is a DNR, the mandate would be to perform CPR.
I had a different but related experience when my Mom went into cardiac arrest.
The senior nurse came up to me to ask me if I wanted to "override the DNR" to have them start CPR. It was an emotional, harried, time when I initially said "yes, go ahead". Fortunately, the doctor pulled me aside and explained the ramifications of compressions on a frail 87 year old woman. She let me rescind my request.
I could have handled the situation smoother if I had recently reviewed my Mom's Durable Power of Attorney for Health Care, or/and if I had a copy of the document with me in the hospital.
This situation led me to make some changes to my personal Durable Power of Attorney for Health Care. I added specific language on when NOT to administer CPR.
My situation also made me realize that having "the talk" about the intent and contents of my Durable Power of Attorney's for both Health Care and Finances.
Notes to others: I have found that every time my mother goes into a hospital, on and off hospice, you name it, her DNR needs to be examined, put in place with her caretakers, AL, doctors - really every six months it should be brought up and procedures gone over WHILE YOU ARE PRESENT. AL tends to go to my mother and ask her medical questions which she has not been in charge of for 3 years. It depends on how they ask the questions as to how she responds. This is one of the "being a pushy daughter" things I have realized I have to do for her care.
khn.org/news/that-living-will-you-signed-at-the-er-it-could-be-open-to-interpretation/?utm_campaign=KHN%3A%20First%20Edition&utm_source=hs_email&utm_medium=email&utm_content=63756297&_hsenc=p2ANqtz--ZmuVv63bCRpuIZhYzBmdt1LfZON6Ihru2I9azdkajXFJjcUYvBw6GtdPJ0N-2CvMphRM1Byz3OOz1rNSj5_Kjvj0wUQ&_hsmi=63756297
When i went to the er a couple years ago i told that to the emt who shrugged like ... so what.
Its a big yes/no decision ... no maybes. But i have heard stories like yours for years and want as good quality of life as possible not bad quality.
I sadly say to all of us ... good luck !
I hope she recovers soon and is able to return either to home or a SNF. I bet she is sore with bruising from going through the CPR and subsequent admission.
Will be thinking of you and she today...