What questions should be asked by loved ones at their parent's care meeting in a long-term care facility?

In the context of evaluation of residential/long term care, the Care Quality Commission pursues five Key Lines of Enquiry. These ask:

Is the service...
safe,
effective,
caring,
responsive
and well-led?

Now, these KLOEs, as they're called (and who doesn't love an acronym), are of course designed for regulatory inspections; but I can see no reason why you shouldn't adapt them for individual purposes.

Does your loved one feel safe? Do you feel confident that he or she is safe?
Are the person's needs fully understood and fully met?
Is the person treated like an individual who is at home in this community and valued by it?
Is the person (and are you) confident that the facility is well run so that the staff are properly trained, properly treated and encouraged to develop in their vocation; communication works well; the premises are well maintained; and procedures such as fire safety, infection prevention and control, emergency protocols and so on are taken seriously and well in hand?

If you haven't already done it, the other side of this coin can be addressed by helping your loved one compile his or her One Page Profile. It may be a while since you've asked, or it may never have occurred to you to do it at all; but the One Page Profile is a simple concept, designed for people of all ages in all kinds of residential and community settings, whereby an individual creates a kind of poster of key facts, including for example (I've shamelessly pinched this outline from Norfolk County Council, I hope they won't mind):

What people appreciate about me
What’s important to me
How best to help and support me
My goals and wishes for the future

Will you be seeing your loved one before the review meeting?

Do these things every time for every meeting:

Make sure they're on top of your loved one's diet. Ask how they're eating, and very important, WHAT they're eating and how much. Ask every time you have one of those meetings, because the first place my mom was in got lazy about giving her a low-salt diet. They were giving her a bowl of salt-laden soup with every lunch and dinner, and she swelled up like a balloon.

Ask what a typical day looks like. Was your loved one out of their room and receiving socialization? Do they watch TV -- how much? What kind of activities is your loved one participating in?

Ask about their medications. Are they successfully administering them to your loved one? Ask them to tell you about each one and what it's supposed to do. Ask about vital signs, therapy progress, and whether there is a positive trend or if there's a downturn in your loved one's progress. Take copious notes with dates as well, so you can refer back to them if you see evidence that any of those medications aren't doing their job. When was the last time the doctor saw your loved one and what were his notes on the visit?

If your loved one is competent to contribute to the conversation, ask them all of the above questions before going into the conference, so you can represent their point of view at the meeting.

Most important, be there frequently to be the eyes and ears for your loved one outside of these conferences. Get to know other families and exchange notes on the care being received. Understand that your job is not to antagonize the staff, but rather to be part of the care team for your loved one. Don't look for mistakes on their part in order to jump all over them but rather be part of the team who contributes to make the care the best it can be. Don't be afraid to ask questions at any time, and if they don't welcome them, be wary.

In my experience the care plan meeting tend to be short, like 15/20 minutes. maybe 30.

You have been given great advice as to what ? on her care to ask.

I do have another suggestion for you, bring a snack for staff. The main ward / floor daytime RN will be there along with the SW. Dietary & activities usually, sometimes PT /OT. Rarely if ever will the MD (medical director) or the DON (director of nursing) be there. To make the most of the time, bring a snack for staff. Make it smallish so they can sit and eat it, like mini apples, sm muffins, “cutie” oranges. They will sit & stay longer if you do this. And do it every time, word gets out and believe me all departments will make it a point to come to the next care plan meeting. Whatever left drop off at the DON office, so she / he can share your largess. Doing little things like this for staff, for care plan meeting and every once in a while other times, will make a nice positive for them, your elder & you.

At the end of each meeting, I was presented with a sheet of paper to sign off on. It goes into their health chart at the nurses station and becomes part of their record. If there is something of significant concern or issues, be prepared to write a concise sentence or two on this page on your concerns and a sentence as to what was agreed to be done to address it.

For my moms first meeting, she had issues being “at need” medically for LTC NH Medicaid as prescriptions and labs were left out of her chart by staff when compiling her application. For Medicaid, the Medical appeals are requested by POA but it’s the facility that has to do the footwork to get whatever needed done & submitted to the caseworker/ State. My sentences were about this and which staff by name was to do the follow through. Writing a sentence or two IMO gives you a way in writing to have the facility provide accountability.

I too found care meetings very shot like 15. There was no time for me to ask questions. The Social Worker was there, physical therapist, Moms RN and the activities person. All telling me what they were doing concerning Moms care. When I tried to ask a question, I got the impression then that the meeting was not for me. I did tell them that the first meeting should give the POA time to counter with questions they may have. I found that the Nurses at the desk in Moms wing were the best people to ask questions.

As far as Mom's care, Qs I'd ask are how many drs in staff, how many times do the drs see Mom?
Who's on the care team (position/name)? What's the care routine- daily, weekly, periodically?
About how many times daily will a member of staff come to Mom's room?
How often will Mom be showered?
What are the visiting hours and do you have to call ahead (hmmm..red flag) or just pop in?
Present formal documentation on Mom's medical needs and ant any special or rare conditions (my Mom has post polio syndrome); insist on highlighting vital protocols (e.g., with PPS, my Mom can not tolerate normal therapy sessions, so she needs shorter sessions more often).

Give them copies of all your legal docs and make them sign and date your copies (retained for your records) that they received them.

Find out who to contact for x,y and z issues?

Make notes like your a court reporter. Let them see for themselves that you are on top of it (even if you're not).

If you don't get all your questions answered, don't wait for the next mtg. Schedule an immediate follow up with the social worker. You should make that person your next best friend.

Ask what ever you want to know.
Be sure to go over all medications as most Elderly take way more meds than necessary.

Question what each medication is for and What the Side Effects of each medication is.
Also question
What would happen if they didn't take the medication.
Especially question any and all Psychotic medications that are regularly given for everything.

When we have our quarterly meeting (or whenever we have questions), they normally go over the loved ones blood work results, how they are eating, etc. But I have asked about my mothers heart functioning abilities (she has edema and on oxygen), I also bring up any concerns like her bathing issues if someone is not cleaning them good enough, etc. You can ask if they are having issues eating, what are they doing about it. what kind of activities is your loved one participating in (if they are capable), etc. wishing you luck.

Oh these are great answers. I also ask what mom’s incontinence level is and how her chewing/swallowing is. In her case I’m hoping to get her on drives and also like to bring her chocolate ( Fancy chocolate cupcakes are a winner! ) I’d hate to be caught off guard by a rapid change in either of these things. Sometimes I shoot a very brief email between meetings with a brief question or two. Everyone is in a different situation ...in mom’s case she’ll stay at one level for a while and then boom have a seizure large or very small and then it’s instantly a new situation.

I also praise and thank the staff and mean it! Their job is so tough. Very fortunate they are nice people. If mom was in my house it would literally kill me..it’s been so much work and intense enough the past few years. I tell the staff they are helping both of us immensely because it’s true.

Fyi our meetings have been online/phone.

Best of luck to you!

It can be helpful to monitor the weight of the person in assisted living rather than getting a vague answer about eating. Ask when the person was weighed and how much they weighed. If there are weight swings, try to understand why. Ask what can be done about it. If the person is in hospice, or has a change of eating habits, this may be expected. Speak to the person's doctor to discuss whether any medications can be reduced or phased out, especially if the person is in hospice. Try to find out if there seems to be any pain. If there is, pain should be managed. Ask if there have been any falls recently.

Care plans are required in all federally funded long-term care facilities. Any facility that accepts Medicare or Medicaid is required to have a care plan meeting. This means that Assisted Living and Residential Care facilities are not required to have care plan meetings since they do not provide Medicare or Medicaid (cash grant does not apply). A care plan is a meeting where all the department heads involved in a resident’s care get together and discuss the care plan for each resident every three months.

When a resident is first admitted to a facility, the facility staff has 14 days to complete the resident's complete evaluation. Within 7 days from the evaluation, the facility must have the initial care plan meeting. Families are to be invited to the care plan meetings. During these meetings, the staff will discuss the resident's medical status with problems outlined and goals for addressing the problems for the next three months. Family members will be allowed to discuss their concerns and have staff work out a plan of action to address their concerns.

How to Prepare for Your Care Plan Meeting

1. Make a point to have your loved one at the care plan if they can participate. The staff should address your loved ones and listen to what they want.

2. Come prepared – make a list of any questions/concerns you would like to have addressed. Without a list, it is easy to forget some of the areas you needed to discuss.

3. Take an active part in the discussion. Remember, you know your family member better than anyone. Offer the staff resolutions that have worked for your loved one in the past. Let them know what’s been tried and did not work. If you have ideas of something that may work, let the staff know.

4. Once the plan is in place, there should be a “plan of action” covering the expected outcomes from the meeting. If you have voiced concerns, make sure what the facility has offered to fix any concerns is detailed in the care plan notes. Then make sure to follow up with the appropriate department head to give feedback on what changes you have noticed (both positive and negative!)

5. You have a right to have an advocate present with you at the care plan meeting as long as your loved ones agree. You could consider contacting the Long-Term Care Ombudsman Program. These are federally mandated advocates for residents in long-term care facilities.

When facilities schedule care plans, they usually only allow 15 minutes per resident. If you have concerns you would like to discuss and need more time than that, call the Care Plan Coordinator and tell them that you will require more time and schedule accordingly. After a care plan meeting, the Care Plan Coordinator will pass on any concerns you had with the appropriate department heads for follow-through. Please give them a couple of weeks to correct any problems. If you find that the problems are not being addressed, call the community and talk to the department head involved; if the problem is a nursing issue talk to the Director of Nursing; if it is a dietary issue, talk to the Head of Dietary, etc.

Remember, you are your loved one’s best advocate, don’t be afraid to take an active role!

(This information was taken from a blog on my website - advocacy4seniors.com)

Hi Genuine Concern,
My mother was DON for a Skilled Care Facility for about 15 yrs. She worked her way up from a Floor RN to DON. We were taught that going back in the 1960's, do not be afraid to advocate for your LO. Yes, give them a couple of weeks to square things away. Should things like your LO is not being properly showered, fed, or receiving medical care by a physician in a timely manor. The patient has the right to expect these things.
Now I am in my early 60's diagnosed with Moderate to Severe Dementia. All of those lessons have come to mind. I know my DW will not hesitate to advocate for me, as well as my adult children. We all need to have an advocate, no family, hopefully the patient will be able to present his or hers issues with the Ombudsman. I wish you all a safe journey.

I would ask about Covid restrictions regarding visitation, and if they're changed, how much notice would you have. Being that Covid is a fluid situation, restrictions might have been loosened up due to vaccination availability, only to go back to being more restrictive due to the Delta variant. I'd ask what provisions would be taken if there's a Covid outbreak in the facility. I might ask if the facility requires employees to be vaccinated. I know these questions are time-specific, but these are the first ones that come to mind.

What happens if she needs to be hospitalized? Or got to rehab facility? Will her room still be hers when she returns?

As a retired nursing home clinical staff member I would ask: 1. Does my parent engage in activities? 2. How does my parent eat and drink? No issues? 3. How often is he/she bathed…any issues? 4. Has he/she made a friend? 5. What meds is he/she on right now? 5. Is there an ambulation program daily? 6. When was he/she last seen by the doctor? 7. What is her/his current weight? Has it been stable?
My moms in an assisted care facility and these are the things I ask..hope it helps..

Aside from care meetings i like to make a call to his RN. I start off with his vitals-how has his blood pressure been? Any significant highs or lows? Oxygen level, current weight, wakefulness-has he been tired more than usual, how has his urine output and bm's been? Cognitive level-any noted confusion?

#1 piece of advice

DON’T LET THE FIVE STAR RATING FOOL YOU

When looking for care for my Dad, I found that this site was somewhat helpful with giving me at least a good starting point for seeking care for him.
https://consumerhealthratings.com/healthcare_category/state-inspection-reports-and-quality-ratings-long-term-care/
Click on your state then look for whatever you need I selected nursing home, from the drop-down menu and type in either an address, city, or state and then the name of the place. It will give you a medicare rating. My brother-in-law didn't use this tool and my mom-in-law was in a horrible home but he was not in charge of her affairs medically, and he chose this place as it was close to his home, instead of doing more research on the facility. Check out the ones that fit your need and it is suggested you try to find 3-5 facilities to do a tour.
These are the 8 questions I try to ask

What are the staffing ratios? - Staffing ratios are a serious matter when it comes to choosing any skilled nursing facility. You need confidence in knowing that the staff isn’t stretched so thin that they won’t be able to attend to you or your loved one’s needs when they arise. Ensuring the extended care center you’re examining has more staff to handle the needs of the facility is key.

What are the inspection ratings? (can be found on the link provided above)

What services are offered? - Not everyone needs a long-term care facility. Some might simply need a short-term care facility, others might be in search of Alzheimer’s care, and some might be looking for a rehabilitation center following a health event or procedure. Knowing the different services offered at a skilled nursing facility gives you a better idea should other needs present themselves down the road.

Are Medicare and/or Medicaid accepted? - Whether you’re in a position to need it or not, you should know the answer to this question. There may come a point in time that money runs out, and you’re unable to afford the long-term care being received. Knowing beforehand if the option to utilize Medicare and/or Medicaid is or isn’t there could make a big difference for you down the road.

Are the care plans individualized? - Just like in everyday life, no two people are the same. Much in the same manner, no two people’s care plans will be the same either. Look for a long-term care facility that focuses on providing individualized care plans so that you or your loved one can get the care you need and deserve.

Is there an RN available at all times? - What happens when you or your loved one needs attentive care in the middle of the night? Will a registered nurse be available? Or will they be forced to wait until the next shift arrives, or worse, be delivered care by someone unqualified? Make sure the skilled nursing facility has an RN on-site 24/7.

What kind of activities are available? - It’s important that you or your loved one stays active even when residing at a long-term care facility. Find out what activities are scheduled, how often they occur, and if any are open to family members. Knowing that you can join in the fun with your loved ones will be an extra plus for both you and them.

Are personal belongings allowed? - Making the transition from home to a skilled nursing facility can be a challenging one. Oftentimes, the comfort of having something from home can make it easier. Find out if personal belongings are allowed in resident rooms of the extended care center you’re checking out.

Best of luck. Hope you find this helpful

Imho, it's good that you're asking this question. My late mother's nursing home caught me totally off guard and I didn't have time to prepare any questions for the care meeting.

You have been provided many good discussion/questions to ask. And you will receive really good answers. But what I found was that I needed to actually 'witness' the care that they said they would provide/do to see if they did it. This I accomplished by showing up on different days, different times of day, sometimes as early as 6am (to see how her care was throughout the night), or sometimes as late as 7pm (to see how her care was throughout the day and what transpired). Sometimes I would show up at meal time (to see what foods she was actually given and eating) and sometimes I would show up 2days in a row, sometimes every other day, sometimes both weekend days/evenings..sometimes even 2x a day (I lived 30 min away). Of course, I wouldn't go outside the 'allowed hours'...some facilities are generous (i.e., 6am to 9pm), some facilities are not (9am-6pm).

This way my comings and goings were not predictable or anticipated, so what I would see/hear would be 'real time'.

So, if a facility you are considering insists on you making 'appointments' or letting them know ahead of time when you will be there, that is a red flag for me.