Help me help my mom
December 23, 2010 8:18 PM   Subscribe

My mother is very sick in the hospital. She needs my dad and I to be her advocate, but never having dealt with hospitals before we both are overwhelmed by the complexity of it all. Insurance issues aside, what should we be doing to ensure she is getting the best care possible?

I feel like I don't know what the hell I'm doing, we never talk to the same doctor/nurse twice, there are no answers, and everything and everyone is moving at a glacial pace when my heart is crying out for them to move faster. How have you successfully navigated the muddy waters of hospital critical care for your loved ones?
posted by cecic to Health & Fitness (14 answers total) 5 users marked this as a favorite
This sounds like a really difficult situation, and I'm really sorry your Mom is sick. Hospital experiences can be (are!) confusing and overwhelming and stressful, and it is really hard to keep things straight. The most important thing is that you take care of yourselves (rest, hydration, food, even if you don't feel tired/hungry) and take notes to keep track of everything going on. You can't help your Mom if you're not taking care of yourselves.

That said, I'd suggest keeping in mind three strategies:

Be persistant.
Be present.
Be proactive.

1- Identify one person as the go-to person who will be acting as the patient's advocate. Carry around a notebook. Take notes on all provider conversations, next steps they discuss, etc. Ask questions. Ask for their name and contact details if they don't provide it and write it down in the record you're making.

2- Be present as much as possible for all caregiver appointments. Befriend the nursing staff (you can easily do this by not complaining, being friendly, and not yelling at them, they get a lot of people who are simply not polite to them due to their circumstances, so if you treat them as a human being your stock will immediately go up). Once you're friends, you can ask them to call you if the dr or other caregivers arrive. Still, it is wise not to go too far away from the room so you can be there for all elements of patient care.

3- Act as if you are the spokesman for the patient. It is your job to make sure he is seeing the right specialists/getting through to the right people. Be kind, friendly, but very persistent.

In a hospital setting, getting things done can be more difficult because there are so many people who are possibly responsible for agreeing to/facilitating various things. It is more important than in any other health care situation to have a person identified to act as a patient advocate and actively work on their behalf. Good luck.
posted by arnicae at 8:26 PM on December 23, 2010 [6 favorites]

I'm sorry your Mum is sick.

You might also want to check if the hospital has some kind of counselor available experienced with just this very thing to get advice from.
posted by gomichild at 8:29 PM on December 23, 2010

Your post is woefully short of details, cecic, for many of us posting here to best advise you. But I helped two parents die in hospitals, a few years ago, and helped them both, before that, with 8 major hospitaliztions (all in Florida, USA).

Generally, your best source of day-to-day information is the nursing staff, particularly the charge nurse for your loved one, on each shift. Doctors are generally clinicians/specialists/managers who work from your loved one's chart, as much as from any direct knowledge or daily communication with the patient. Unless you are lucky enough to be in a facility where your loved one's primary care physician maintains priimary patient contact (really rare in the U.S.), your best bet, by far, especially if you aren't well grounded in medical jargon, and your loved one's condition/current issues/prognosis, is to stick with the floor nurses, shift supervising nurses, social workers, and other patient contact personnel the hospital recommends.

At key points in your loved one's treatment, you can ask for consults with the treating doctor, who should, except for very complicated case, be well known to the hospital/nursing staff. But don't be alarmed, if suddenly, there appear to be 3, 4 or more other doctors going in and out of your loved one's room/chart/care. Specialists come and go in hospital settings, as particular health issues are discovered and treated. But do be aware that family consults are difficult for the doctors willing to provide them, because you don't know what all the numbers/tests/symptoms mean, and because the treating physician isn't God/doesn't have a crystal ball/is working with in an imperfect world, just like you are.

Best of luck to you, and to your loved one. Pay attention to the nurses. Be kind to the nurses.
posted by paulsc at 8:36 PM on December 23, 2010 [1 favorite]

Speaking as someone who has been a surgical patient too many times, I would like to add this to what arnicae has said. The nursing staff can be your best friend or worst enemy. They are constantly barraged by complaints, aggression and whining. It is amazing what a smile and the impression of cheerfulness can do. "How can I help you do your job?" "Is there anything I can do make Mom's experience here better?" These, said with a little smile will do wonders to get the staff on your side. After this, utilize the above three strategies to take control of your mom's situation.

Best wishes.
posted by Old Geezer at 8:37 PM on December 23, 2010 [1 favorite]

My dad's been in critical care (and I've been in critical care myself a couple of times), and there are some good tips here. As others have said, some more details about your mom's condition might help allow people to give you more specifics.

In general, I want to underscore the need to be proactive in terms of gathering information. If a doctor or nurse tells you "she can have fluids" and leaves it at that, for example, you need to ask for specifics: what kind of fluid (i.e., clear liquids or any liquids) and how much. Do not adopt a state of what I call "aggressive helplessness" where you expect that all information and tools will automatically be handed to you from the doctors and nurses... because when it doesn't, it puts you in a state of feeling even more helpless or frustrated. (I've seen this with certain family members of mine -- they refuse to ask questions or to research anything or to follow up on suggestions, and then they're left feeling in the dark, at which point they angrily condemn everyone around them for not helping and second-guess the doctors/nurses when they do say something. Not saying you're doing this -- just that it's a pitfall to avoid.)

As far as feeling "there are no answers" -- sometimes, unfortunately, this is actually the case for awhile with some patients. Sometimes the search for answers for certain medical conditions, prognoses, treatment, etc. truly can take days or weeks till the doctors really can get a clear picture of the problem and the appropriate way to proceed. This is, naturally, very frustrating and frightening for the patient and their family -- but it's also a state of not-knowing that you sometimes just have to bear with. It's really hard, I know.

On a practical level, keep a notebook and use it faithfully, if you're not doing so already: write down questions, write down the information you receive, write down doctors/nurses' names... there's far too much going on to expect yourself to keep everything straight in your mind, so your notebook is going to become your own bible during this time.

And yes, being pleasant to the staff is really important -- it is hard, stressful work, and a liberal use of "please"/"thank you"/"I appreciate it" will help you and your mom as you get through this.

My best to your family.
posted by scody at 9:14 PM on December 23, 2010 [7 favorites]

Ask to speak to a social worker and tell him/her your concerns. There should be one in the hospital, if not one that works exclusively in critical care. ICU nurses are a good source of information but it's often very difficult for us to sit down with families and discuss their fears and concerns; not because we don't care (we really really do) but ICU nursing is intense and our patients are very ill and there are days where we very literally cannot leave their side. Social work should be involved if they aren't already, and they are a great resource for helping to navigate the scary, unfamiliar world of critical care.

In my ICU we routinely schedule individual "family meetings" with our patients' family members, the nurse in charge, the attending physician, social worker, and clergy/pastoral care if requested. This absolutely should be an option for you and it's upsetting that it hasn't been presented as one. Please tell everyone involved in your mom's care that you want a family meeting. It's the best way to get everyone together in one room and get all your questions answered at once.

I'm sorry that more isn't being done by the hospital staff to help you through this. Best of luck to you and your family.
posted by makonan at 9:16 PM on December 23, 2010 [1 favorite]

Having been in the hospital too many times, the last time I almost died, I can tell you, it is not like an episode of "House." The best thing you can do, as others have stated, is BE KIND to the nurses. Be nice to the nurses. Do not yell at the nurses. Make friends of the nurses. Even as I lay near dying, I realized the nurses were my advocates. Bring the nurses cookies and chocolates and let them know they are from your mother's family. I learned that from when my own mother was dying in the hospital. She would have my father bring the nursing staff treats. When I said I thought it was dumb, my mother said she needed the nurses to like and think of her.

Another think I noticed is that sometimes you have to do stuff on your own. So if the bed is messy or your mom needs something, you may need to ask for sheets or a fresh gown and help her.

Most of my experiences with nurses have been positive, but sometimes the nurse is bad. So be aware of this and try to work around the bad nurse, without antagonizing him. For example, I had a nurse who spoke with a heavy accent and I could not understand her (with being really sick and in pain and all). Additionally, she refused to give me pain medication since the doctor indicated that I should get pain medication every 6 hours, and only 4.5 hours had passed. I had to insist that she get the doctor, which she actually refused to do at first!! Another time, with another bad nurse, I missed the bed pan and wet myself and the bed, you would have thought I did it on purpose! But I just rolled with it and realized she was a jerk.

Sometimes I wish it was more like "House"...

Good luck.
posted by fifilaru at 9:20 PM on December 23, 2010

Oh, and since you mention you feel you're never speaking to the same doctors twice: is your mom at a teaching hospital? If so, then you're probably seeing a lot of residents and fellows (and possibly even some med students) on rounds; this is all part of their training as they become doctors and specialists, but it does mean that they won't all have the same level of knowledge (or even authority) to "take care" of the situation as you might be expecting. That said, there should still be the coordinating doc who is ultimately in charge of your mom's case. If you're not sure who that is, of course you should feel free to ask who it is.

Alternatively, is your mom's condition such that she's seeing a lot of specialists? Again, this can account for the sense of never seeing the same doc twice. For example, a cancer patient who's having complications won't just be seen by the oncologist, but will require consultations with a variety of specialists (a nephrologist for kidney problems, a hematologist for bleeding problems, a pulmonologist for pneumonia, etc.). Again, there will still be a central doctor coordinating her care, but he/she is only going to be able to come up with a treatment plan once enough voices have weighed in.

Anyway, hope that helps make some possible sense of at least that side of what you're going through. Again, I wish you all the best.
posted by scody at 9:34 PM on December 23, 2010

cecic, the most important thing is just to BE THERE. Visit as often as possible. I learned when my Mother was in the hospital that there were two types of care administered...semi-adequate and much better. The "much better" was always when I was in attendance. The staff knows you are paying attention when you are there...when you are not---not so much!
posted by naplesyellow at 9:53 PM on December 23, 2010

The physicians in the ICU can arrange to meet with you specifically if they know when you're going to be there. I think too often family members just stop by here and there and they never get a sense that the place is on a schedule.

In most academic ICUs, rounds take place from about 8am-10am (or noon). If the ICU your mom is in does bedside rounds, I recommend you have someone from your family there when they round on her. If it's a large ICU and rounds go for a long time, just ask them when they're likely to round on her, sometimes they do it room by room and sometimes by a different order.

Since rounds are in the morning, and many family members cannot be there until after work or school in the afternoon or evening, remember that you can always request to speak to the physician who is currently overseeing the care, but if you're in an academic place, it'll be residents who are on after about 5 or 6pm, the attending physician is only there during the daytime.

I second the responses about being nice to everyone (not just nurses!) and talking to a social worker, but the social worker is just in charge of helping with social issues and placement, so if you have medical questions, the 'family meeting' route is the best way to go.

It would help if you clarified what is 'moving at a glacial pace'. I can't tell if you mean that medical care is moving slowly (like she needs a surgery and isn't getting it), or that your mom isn't getting better as fast as you think she should, or that she isn't getting out of the ICU, or what's going on exactly, but I'd be happy to offer further suggestions on that issue. The ICU team works through things in a systematic way that may seem slow, but the idea is that no detail be missed.

The flow of an academic ICU is:
Early morning
- the residents pre-round on the patients and may do things like fix electrolyte abnormalities or make any obvious needed changes,
Mid to late morning
- all the details of a patient's case are discussed with a larger team on rounds (bedside or table rounds), at that time the orders are written based on what's been decided and then the nurses take action on the orders.
- procedures (like line placements) are done, and consults to specialty services are called, and paperwork is done. If the specialty service has time or it's urgent, they'll see the patient and do the consult that day, if they are busy or it is not urgent, they may come the next day.
Evening and Overnight
- The patients are usually in a holding pattern with the orders that were enacted during the day continuing to be carried out on schedule. If there is new information like lab tests, x-rays, or consults, then that information will be acted upon either at a brief 'afternoon rounds' or by the nighttime physician. If the patient has a sudden issue with their vital signs/clinical status, it will be addressed, but otherwise not much new usually happens after hours (which is a good thing because people working at that time may be sleep-deprived and not functioning at 100%).

This schedule description may not be helpful if your mom is not in an academic ICU, but your description of 'never meeting the same person twice' makes me think that she is.

Feel free to MeMail me if you'd like, I've been an intern, resident, and moonlighting physician in various different medical and surgical ICUs.
posted by treehorn+bunny at 11:38 PM on December 23, 2010 [3 favorites]

On top of what else has been said: Ask questions. If you're not well-informed, you can't be much of an advocate. So ask! Ask "why", ask "when", ask "what if", ask "why not", ask about the prognosis, ask what to expect, ask, ask, ask. If you come across someone who is particularly knowledgeable and willing to share that knowledge, ask them "what other questions should we be asking?" And be sure to thank people for the information.

And good luck. I'm sorry you're having to go through this.
posted by DrGail at 5:03 AM on December 24, 2010

Write down whatever you observe in your parent's behavior and when the doctor shows up, ask/tell the doctor about it. We found out that dad's doctor did his rounds around 7am, so my sister and I would be there every morning with our notebook when Dr M showed up and then we'd waylay him in the hall afterward to see what he thought and what he planned. Actually, if we wanted to say something we didn't want our father to hear, we'd waylay the doctor before he saw dad.
posted by sevenstars at 5:40 AM on December 24, 2010

In most hospitals, patients have case managers (usually a senior nurse), and are assigned to a particular social worker. If either or both of these have been assigned in your mom's case, they are the people who are there to be resources to you, so feel free to ask them for their help.

If you have specific questions, please feel free to MeMail me; I have spent a lot of time in hospitals advocating for my dad and my in-laws in the past few years, so I might have some suggestions from my own experience.

Best wishes to you.
posted by Sidhedevil at 12:38 PM on December 24, 2010

!) Find the social worker assigned to your mom and 2) see if the hospital has a hospitalist on staff and get them to help you.
posted by jindc at 11:37 AM on December 25, 2010

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