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I'm so ashamed of myself

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Specializes in ED, ICU, PSYCH, PP, CEN. Has 18 years experience.

I really get it, families could be so tough to deal with when I worked in SNF.

However, my husband had cancer treatment and major surgery last year and honestly I don't know how he would have made it (emotionally) without me. I was as unobtrusive as possible and was only there to support him, and never mentioned I was a nurse. Every admission (there were many in three different hospitals) the nurses were excellent but extremely busy, and I washed him, managed his tube feeds (after getting permission obviously), held the basin and cleaned him up after the many nights of vomiting all night long, and ambulated him. After his major thoracic surgery the nurses were happy to teach me how to manage all the equipment so I could ambulate him many times a day which I think really helped him avoid complication and get home. They just would not have had time to take him walking more than once or twice a day (it was quite a time consuming ordeal for awhile there).

I honestly have been afraid of him needing to be admitted during this time. It would be really hard not to be able to see him.

amoLucia

Specializes in LTC.

A life-threatening emergency necessitated my hosp stay 5/4 to 5/11. It was stay home and DIE or go to the hosp where C19 was lurking. From a pt perspective, it was the worst experience I've had to undergo so far. I believe I lost brain cells, so I had times I don't remember and times I barely recollect. My 36 years of past nsg experience did little to help the isolated 'lost in the wilderness' feeling.

I just SOLO visited a new service (oncology) this week. Again, the isolation is just petrifying. Trying to deal with all that is going on is beyond all general understanding. Also, I have a prolonged clinical care course experience ahead of me.

What's an alternative??? Why not just designate ONE person as a delegated visitor? Many places already do that for release of information. And yes, STRICTLY limit visiting hours. I have no problems with that. I understand the petri dish environment risks. But having been deprived, and the word really is DEPRIVED, I've felt the situation.

I do understand the burden of visitors, esp the real PIA ones. I experienced that burden during my years of active practice. So I do commiserate and feel for the staff. And for the record, ALL staff I encountered were phenominal.

Under-appreciated and under-recognized, I say TY to them for all their patience.

Edited by amoLucia

On 5/29/2020 at 12:46 PM, gonzo1 said:

I hope new rules will limit the time visitors are allowed in the unit, but we all know that isn't going to happen because we are the Hilton, not the hospital.

IMO the problem is not that a loved one/advocate is welcomed to the bedside. They should be there. Aside from Covid-19 restrictions (to the extent that they have been necessary and reasonable), I don't hope for an end to LO/advocate presence.

The problem has been that the expectations set forth surrounding LO/advocate presence have not been appropriate and have not been consistently maintained within the bounds of reason. Care has been allowed to be disrupted at the the expense of the patient in question and other patients.

If you ever have to use any public services where expectations are upheld (thinking of a recent visit to the DMV), you may be surprised to see that people certainly can uphold them. Allowing a chaotic and abusive atmosphere is not a necessary element of "customer service," it isn't fair to anyone, and in the case of healthcare it is downright unethical because it absolutely compromises patient care.

Expectations for conduct are appropriate and necessary--these should be the goal everyone, including the most staunch of patient advocates, because they are in the patients' best interests.

On 6/3/2020 at 6:22 AM, CommunityRNBSN said:

I have a colleague who works L&D. She said that since the restrictions, their breastfeeding rate is way up and the C section rate is down. She didn’t have any theories for the c-sections. But she said, without granny and auntie there telling them how “the baby looks hungry, you need to give it some formula” and granddad in the room so the mom is too embarrassed to pull her boobs out, is it any wonder that the moms have more success with feeding? The mom can have one support person, just not the whole crew.

Interesting! They should take a formal look at the situation and see what the numbers say.

9 hours ago, amoLucia said:

What's an alternative??? Why not just designate ONE person as a delegated visitor?

I have said this all along since all this mess happened. If a child can have a designated support/advocate so can an adult. There is just as much chance that the person with the child can carry something out of the hospital as someone with an adult. In times of stress, anxiety, pain a rational adult who normally can make logical, clear decisions can have just as many issues making those same decisions and understanding what is being said as a child. They may make a decision that later they regret and realize was the wrong decision.

I have had experience of being alone and scared and facing a terrible decision and it all turned out okay. But almost 40 years later, I still have nightmares of being alone in the dark with no one there.

Also, I have had the experience of having a patient advocate in a family member who stood up for me and stopped a bad decision. If I had been alone things could have turned out differently because the nurses could not stop what the doctor had ordered without someone there to say "No!"

I have also had the experience with my spouse being railroaded into what turned out would have been an unnecessary surgery and weeks in rehab. In this case the nurses were playing along and if I had not been there to witness the demand for a second opinion before surgery, things may have turned out completing different. When the questions were raised to the group of nurses we were reported as being argumentative and noncompliant instead of them getting hold of the patient advocate to straighten things out. I will have to say once we were away from that group of nurses which seemed to be young inexperienced nurses more interested in arguing with the older more experienced nurses, the care was great and my spouse had nurses who were compassionate and understanding. I do know that we will not willingly use that facility again.

On the other hand having a roomful of family members is not necessary for your everyday run of the mill hospital stay and in this day and age of huge private rooms as long as the advocate is respectful and stays out of the way there is no reason why he/she cannot stay in the room. If they become demanding and putting extra work on the nursing staff then the nursing staff should have an advocate that will step in and address the issue.

As far as what has happened during this pandemic, it was understandable in your huge hospitals and areas that were overcome with the amount of patients with the covid-19 to have to restrict visitors. There still should have been a way for a family member to have been there. But in the areas where the covid patients could be isolated and there was low incidence of cases reported "why?" could not one adult accompany patients for surgery, treatment, visits to urgent care or doctor office? Why did patients have to wake up confused and scared? Why did patients have to make life changing decisions without someone there? As time goes on, in my opinion those questions will continue to be asked....it is really heartbreaking to hear someone say I am afraid to go to the hospital because I don't want to die alone.....

It’s frustrating when they make more demands on me than the patient does, and when they monopolize my time without considering that the other patients need my attention also.

canoehead, BSN, RN

Specializes in ER. Has 30 years experience.

It was a relief not to navigate around crowds of visitors in the hall, and 4-5 at the bedside, but I think patients NEED one person to watch what's going on and remind us of the patient history, or how they are used to doing things. The visitor is thinking about that one patient all the time, and they catch issues we miss.

11 hours ago, canoehead said:

but I think patients NEED one person to watch what's going on and remind us of the patient history, or how they are used to doing things. The visitor is thinking about that one patient all the time, and they catch issues we miss

That is absolutely right! There is no need for the whole family to be there crowded around the bedside in a normal hospital setting. But there is a need for a person to be there who is willing to be the eyes and ears for the nurses and doctors. Who is willing to refill glasses of water and hold urinals or assist where they can. There is a need for the other person who will step in and and say "Remember last time you took that you passed out!" or "Don't give them that they will puke and not just a little!" or to be sure the patient's dignity is respected by helping to keep the patient covered. Or if the patient is too scared, nervous, anxious or under the influence of drugs to say I want a second opinion.

For the patient suddenly they are no longer in control of their environment. They are placed in a hospital gown and feel they do not have the ability to just walk out if needed or to request a different nurse or doctor if their personalities clash.

The same as if a nurse or a doctor has an issue with a patient they should be able to have an advocate as well and be able to switch out of the situation. If the patient's room has suddenly become party central there should be an advocate who can step in and say party time is over only the spouse or significant other stays and the rest need to move on. Some times it is what it is and all have to do the best they can.

But in the majority of cases one family member should always be with the patient if at all possible. Just in speaking with friends and community members this isolation and fear due to COVID has been devastating. To have to leave a family member who needs you to be with them is heartbreaking and in some cases it has been unnecessary or has resulted in patients not getting the care they need because they do not want to take the chance of dying alone.

amoLucia

Specializes in LTC.

4 hours ago, trytounderstand said:

To have to leave a family member who needs you to be with them is heartbreaking and in some cases it has been unnecessary or has resulted in patients not getting the care they need because they do not want to take the chance of dying alone.

"Or not advocating for themselves by asking the right questions." (my thought)

I truly think this was the case with my 79 y/o roommate (1 1/2 day only) who had just been isol-hospitalized in mid-April. Now it was beginning of May and she was back in. And they were discharging her home again (with some home services) that she really wasn't fully understanding. It was NOT my place to be her discharge planner/case manager & not knowing all her details, but I could just bet money and see her being RE-ADMITTED late May/early June.

Wish there were some way to prove my suspicions! Talk about high cost of health care as r/t to unnec readmits. She would have been a 'flagged' pt had she been a NH resident. NHs and hosps gets zapped for readmissions of same diagnoses. For her to have had her niece present to advocate for her just might have been able to forestall readmissions and obtain better care solutions.

Such a classic textbook pix of HC falling through the cracks! My heart went out for her. Fortunately, I didn't fare too too badly for myself, but only because I fought to get my providers to tele-communicate with my sister.

As society seems to be moving towards re-opening activities, a SUPER STRICT limited visitor policy should be in order for all HC facilities & providers. I think most staff would be generally accepting of a 'new norm' of visiting privileges without any understandable twinges of guilt.

2 hours ago, amoLucia said:

Or not advocating for themselves by asking the right questions."

Many times when a patient is alone they may not advocate for themselves sometimes out of anxiety and knowing that they do not have back up. Sometimes the anxiety causes them not to be thinking clearly or if they have been any kind of medication that can be the cause. They are alone in a room partially or completely disrobed and no one there to stand up for them against a wall of professionals.

Sometimes they may even answer the questions wrong due to stress and anxiety and without someone there to correct it, it could lead to a disaster or the patient becoming more vulnerable than they already are. Making it not only devastating for the patient but an issue for the nurses and doctors as well.

Spoke with an elderly couple lately and their reaction to not being able to be there for each other because of the covid regulations was heartbreaking and they were not covid patients. Not being able to accompany to the er. Not being able to visit during a short stay. Not being there to talk with the doctors. It was devastating to them not to be able to be there for each other depending on strangers to take care of them. Each worried about the other.

I have had the experience of having a roommate in semi-private room who was confused and could not figure out how to use her call light when she needed help. She kept calling out for a nurse. I of course pushed my own call light and asked for someone to please come check on her. If someone had been with her that situation would not have happened. On the other hand, I have also been the patient in a semi-private room who the roommate's family decided it was time for a family gathering and seemed to be having a party. That is when there needs to be someone who can step in and help the nurses mediate the situation without causing hard feelings between the family, nurses and fellow patients.

Of course, for a patient to have visitors en masse would not be appropriate, but as others have articulately pointed out, a single support person (usually a family member/significant other) staying with the patient throughout their hospital stay in order to advocate for their needs and for their rights is highly beneficial for the patient and for the family member. I did my best to make this point on a thread I started recently: "Covid 19 Visitor Restrictions." If anyone would like to add a comment to that thread it should be easily searchable.

There is no difficulty understanding the need for visitor limitation during the Covid-19 situation for the purpose of infection control, but, like others, I am unable to see the necessity for prohibiting a single well behaved family member/significant other who very often knows the patient's medical history very well and is very often considerably involved in the patient's care and in their health care decision making, from being with the patient in order to provide comfort and reassurance, to facilitate their participation in the plan of care, and to advocate for their health care needs and for their rights when the patient is highly vulnerable, as they are during hospitalization. Patients don't receive health care in a vacuum; they are social beings with loved ones who they want to be involved in their care and who want to be involved in their care. Studies have demonstrated the considerable benefits of patients being able to have a family member with them when they are hospitalized, and have not shown any harmful effects, including in units such as the ICU. Medical and nursing groups have position statements in favor of patients being able to have a family member support person with them for this purpose.

From a purely emotional/psychological point of view, preventing patients from having a family member with them is resulting in significant distress and trauma in some cases for both patients and family members.

Whatever benefit exists from preventing patients from having a single family member/SO with them to provide them with comfort and reassurance, to look out for their needs in order to ensure their safety and well-being, to ensure their rights are upheld, and to provide them with basic assistance, for the purpose of reducing Covid-19 infection transmission, surely must be weighed against the known benefits that having a family member/SO with them provides the patient and their family member.

Edited by Susie2310

On 6/4/2020 at 4:11 AM, JKL33 said:

The problem has been that the expectations set forth surrounding LO/advocate presence have not been appropriate and have not been consistently maintained within the bounds of reason. Care has been allowed to be disrupted at the the expense of the patient in question and other patients.

If you ever have to use any public services where expectations are upheld (thinking of a recent visit to the DMV), you may be surprised to see that people certainly can uphold them. Allowing a chaotic and abusive atmosphere is not a necessary element of "customer service," it isn't fair to anyone, and in the case of healthcare it is downright unethical because it absolutely compromises patient care.

Expectations for conduct are appropriate and necessary--these should be the goal everyone, including the most staunch of patient advocates, because they are in the patients' best interests.

As has already been pointed out on other threads, the great majority of patients' family members/significant others - the patient's support system - are reasonable in their behavior and expectations of nurses/doctors/other health care workers.

Health care professionals must also accept some responsibility for their communication with patients, which often leaves a lot to be desired, and acknowledge that they are often actually provoking some of the patient and family member behaviors they find undesirable. I can easily provide examples just from personal experience as a patient/family member: nurses' refusing to make eye contact with the patient/their family member; nurses' badges turned backwards so the patient/family member cannot see the name of the nurse taking care of them when they have the right to know the name of the nurse taking care of them; nurses' walking into the patient's room and not introducing themself before they provide care, and more.

Edited by Susie2310