Interesting blog Describes view from family's eyes

jzkfel · Dec 8, 2009

this is going to sound completely heartless but i am sooo glad i am not having to deal with this family.

I have to say I am with you on this one. I don't think its heartless. The family strikes me as angry and coping by micromanaging, trying to split staff, and setting themselves up for conflict. I think the emotions and feelings are understandable - its an awful situation - and I am sure communication isn't always good, but fighting with your loved one's caregivers, asking your friends to "pray" that they will get him up in a chair for X amount of hours a day, etc is over the top and not very helpful to anyone. I wouldn't want to deal with them, either.

Ruby Vee, BSN · Dec 8, 2009

i have to say i am with you on this one. i don't think its heartless. the family strikes me as angry and coping by micromanaging, trying to split staff, and setting themselves up for conflict. i think the emotions and feelings are understandable - its an awful situation - and i am sure communication isn't always good, but fighting with your loved one's caregivers, asking your friends to "pray" that they will get him up in a chair for x amount of hours a day, etc is over the top and not very helpful to anyone. i wouldn't want to deal with them, either.

i have to agree. i'd hate to deal with them, too!

fiveofpeep · Dec 8, 2009

they probably would be wise not to post physician's full names on the internet like that.

tewdles, RN · Dec 8, 2009

There is no question that families providing bedside vigils for extended periods of time often become more problematic for nursing staff than helpful. This is not because the families are bad people or are looking for trouble, it is more because they are concerned and want to help their loved one and micromanagement is the only avenue they have available to them. It sounds like this family is trying to transition this unfortunate young man into a home care setting which will be extremely empowering for them, I hope that they are able to accomplish this move soon, before he succumbs to a facility acquired infection, aspiration pneumonia, or other equally devastating complication of long term care.

Once the family has him home and has total control of his care they will have to learn to develop functional relationships with the visiting professional staff. It sounds like that may be a challenge for them as they seem to cling to the routine without an appreciation for the nuances of daily care. Hopefully they will learn to appreciate that it is not always in his best interest to be up in a chair for "X" number of hours...that it really has to be about him at the moment, not the schedule per se.

I recently cared for a woman who was in a persistent vegitative state following a massive brain stem stroke. Her family was increasingly unhappy with the care she received in the Select Specialty hospital unit and arranged to bring her home. The family continued to be angry and unhappy about her care...the nature and focus changed from day to day. The bottom line is that if the family is unhappy and critical they will likely remain that way until the patient either recovers or dies. The professionals and their management need to be aware of this and not expect to get glowing comments from this family...they also need to be aware that this is a family dynamic that has little to do with the actual performance or abilities of the staff. Management which can maintain this perspective will help the staff from becoming bitter and burned out by the constant "suggestions and reminders" which sound more like criticism from the family.

Weekly care conferences which include the primary players including the family rep would help the communication issue. This would insure that all care givers are "on the same page" when it comes to his ongoing care. There are clearly things that the family members do not understand about nursing, medicine, and the equipment used to assist patients. Care conferences are a good place to answer and address those things without putting each nurse or caregiver on the spot. Developing a formal mechanism for family to get answers and action will go a long way in taking the burden from the bedside staff in the current situation and management would benefit everyone by setting up a well structured plan to care for this family's need to participate.

Hopefully this family will receive the outcome they are praying for...but only God knows. In the event that there is no meaningful recovery I pray that they have the grace to accept that as God's will as well.

fiveofpeep · Dec 8, 2009

tewdles: what a very proactive reply to a difficult situation

LaurenBoog · Dec 8, 2009

I have mixed reactions reading the blog.

On one hand, the family is very caring, they seem involved in educating themselves and helping with patient care. Also, I would rather have a family requesting prayer for the staff members (as this family does) as opposed to a family who seemed to be fishing for a lawsuit.

On the other hand, we all know how very draining it is to care for long-term, seriously ill patients for which full recovery may never be an option. (I know this is a sentiment echoed by previous posters.) The longer the hospital stay, the more likely that complications and conflicting messages will occur. It's a terrible situation for everyone, from the patient to the family to the staff.

God bless this man and his family, and kudos to all the LTAC/rehab nurses out there that do so much with such limited resources.

Virgo_RN, BSN, RN · Dec 8, 2009

Like the above poster, I, too, have mixed feelings. On the one hand, this does seem like an exceptionally caring family, and this young man is fortunate to have such a strong support system. Not all of our patients are as lucky.

On the other hand, as a bedside caregiver, I think I would probably chafe a bit at some of their expectations, such as the hourly eye drops, and not being in the neuro chair for a minute longer than 2.5 hours. We all know, as bedside care providers, that when you have several patients to care for, hourly eye drops are not always possible (in fact, hourly ANYTHING is downright ridiculous on most days), and sometimes patients do have to sit in their chair a little longer, due to the demands of caring for a group of patients.

Over all, I don't find the blogger to be unreasonable. I do sense some frustration and a few misconceptions, but all in all, I wouldn't expect more from a lay person suddenly thrust into the health care system in this manner. I do find it interesting that he doesn't seem to have much to say about the nursing staff, other than a few vague criticisms; it's almost like they are nonexistent. But then, I didn't read every single post, so I could have missed something.

yetanotheramanda · Dec 9, 2009

sad. this blog just makes me want to be doubly sure my family knows my wishes if such a thing were to happento me. Poor Kevin.

tewdles, RN · Dec 9, 2009

Actually, hourly eye drops are doable...the family is THERE, they have been TRAINED to provide that care! The facility should stop fighting and start fixing this situation...empower this family to support the patient and the staff in the moment.

When I worked in the PICU if a child needed an NMT and was not going to let me or the RT do it...you can bet the parent was employed...same thing for an oral med. When we had children with severe brain injury, with trachs the families administered eye gtts, assisted with trach care, etc, etc, etc in advance of the discharge. We collaborated and worked together to care for their children. This was not viewed as a liability by our risk manager, rather, it created great good will within the community as these families were generally well connected in their schools and churches as they made arrangements to transition to home care...they appreciated what we did with and for them.

This family must come to terms with what it takes to provide 24/7 CARE, not just observation, of someone in this situation...they need to discover what is involved NOW...before they are home alone. Shame on the facility for not working with them and giving them some tasks to master. What the heck are their educators and case managers doing???

Virgo_RN, BSN, RN · Dec 9, 2009

Actually, hourly eye drops are doable...the family is THERE, they have been TRAINED to provide that care!

I was referring to post #85, in which he states "With some staff we have to make sure that the ointment is really getting in his eye each hour. Pretty sure today, it didn’t get in there for over three hours this morning." It doesn't sound like the family was trained to provide that care at that time. Later on, he does mention the family members doing the eye ointment, but that was not the post I was referring to.

Fiona59 · Dec 9, 2009

this is going to sound completely heartless but i am sooo glad i am not having to deal with this family.

I'll join you on this one.

Concerns because the patients room was changed. Happens all the time in my world. Isolation, compassionage care, psych admit all get private rooms near the desk.

Have they ever thought that the insurance may have stopped paying for a private room?

Eight or Nine visitors and sleeping over?

Float pool nurses being like a "box of chocolates"? Trying to be gosh/gee/shucks funny? No, like other have said, pitting staff against each other.

So much for the spirit of Christian kindness and charity that seems to be a theme throughout the blog.

Many of the nurses are probably praying that they don't get assigned to that patient while the family is present.

southernbeegirl, BSN, RN · Dec 9, 2009

since i have exposed myself as the cold, heartless girl i am, i have another question/observation.

i read so much about them getting kevin's house ready. i understand bringing home a patient like kevin requires MUCH readiness in the home. that said tho....why the kitchen remodel? why is that so important? why is it so important that the kitchen cabinets be stained to match, new tile on floor...etc. and if thats what THEY want, and i cant see why it would be something kevin would need but something THEY want...why asking people to send money?

ok...there. ive said it. that was really bothering me too.