Help me advocate for hospital patient relative
December 22, 2006 12:45 PM   Subscribe

How to get the best hospital care in a time sensitive situation.

We have a thread already on getting the best medical care, but I need to find out how best to advocate to a relative who's in a hospital, without the option for switching doctors, etc. that can be useful in non-emergency situations.

My mother-in-law is 62 and in a Kaiser Permanente hospital for the third straight day without a private room with Stevens-Johnson Syndrome, and doesn't appear to be getting better.

I'm not looking for advice on her particular illness (although if you have any, I'd love to know), but rather on what methods are best for getting her the care and attention she needs *now* (as opposed to being concerned with developing a long-term relationship with any of the doctors or nurses she's seeing; in other words, if it's threats that work, tell me what threats to make).

Thanks for any suggestions you can provide.
posted by mabelstreet to Health & Fitness (22 answers total)
 
The term you want to be using with uncooperative administrators, etc. is 'standard of care.' Works wonders!
posted by NucleophilicAttack at 12:47 PM on December 22, 2006


Off the top of my head:
1. How was the diagnosis made? Hopefully by skin biopsy. This is a semi-controversial area. <1 0% body surface area=SJS,>30%=transient epidermal necrolysis (TEN); in between= grey area. TEN is a medical emergency and needs rapid biopsy diagnosis. Plus there are other conditions that can mimic SJS and should be excluded by biopsy.

2. Why isn't she in a burn unit? This is the most important question. Get her to a burn unit now for optimal care. Being burned and having your skin die and fall off both engender unique fluid/metabolic situations that are best handled in a specialized unit with knowledgable staff.

3. Make sure they nail down the reason she has SJS. Drugs, herpes, etc. If it is a drug... you need to know, because future exposure will cause similar symptoms.
posted by i_am_a_Jedi at 12:56 PM on December 22, 2006


oops TEN= toxic epidermal necrolysis
posted by i_am_a_Jedi at 12:57 PM on December 22, 2006


Threatening health care people is really not a good idea. Mostly what we get threatened with is legal action like a malpractice suit. In a perfect world, being threatened with legal action doesn't change what the doctor and nurses are doing, because they know they're doing the right thing. I try to practice this way myself when I can; "would this decision hold up in court?" is often one of the ways I try to subject my own decision making to some kind of internal review.

But people are people and they're not perfect. If you frighten them into thinking they're going to have to go to court to defend what they're doing, they may get scared and start practicing defensive medicine, ordering unnecessary studies, prescribing unnecessary drugs, or not doing things which would be in your relative's best interest, simply because there is some risk involved. Again this shouldn't happen but I've seen this mad scurry time and again, often after someone's relative screams "I'm gonna sue!" at the top of their lungs on the ward.

as opposed to being concerned with developing a long-term relationship with any of the doctors or nurses she's seeing

See, now, I don't understand why you're opposed to this. Let me give you my thoughts on this situation:

S-J syndrome is terrible for the skin. People with skin trouble need really good nursing care; they take four or five times the nursing time of a patient whose skin is undamaged, all else being equal. Frequent turning, pressure dressings, special beds, gentle and frequent cleaning all suck up nursing time. You do not want a nurse who resents you doing this work; you want one who is thinking of this patient warmly and compassionately so that (s)he will be motivated to do his best work.

From the doctor's point of view, you want to assure yourself of a couple things:

S-J syndrome is a kind of allergy. You want to make sure the doc knows why it happened and that the offending medicine/agent and its relatives are removed from the picture.

You also want to be sure that a long-term plan is in place to get your relative better. What is that plan? What has to happen? What drugs have to be given? What specialists and accessory people (phys therapy, occ therapy, rehab medicine, dermatology, LVNs) need to see the patient? What assistive devices (bed pan, IV, long-term PICC line, etc) need to be in place? What do the nurses and LVNs need to be doing every day?

And, especially, how will the plan change if the plan's not working as stated? What options and measures are in place for that?

Hopefully there exists a doc who has this entire plan in his or her head. But sometimes conversing with an interested relative can clear these issues up a lot.

I wish you and your relative a speedy recovery!
posted by ikkyu2 at 1:02 PM on December 22, 2006


Get her to a burn unit now

Hey, Jedi, I know you're a pathologist, but do you really think you ought to be giving specific medical advice about a patient's case on here? Have you reviewed the chart?
posted by ikkyu2 at 1:03 PM on December 22, 2006


specific medical advice about a patient's case on here?

smells like a possible lawsuit, ask jessamyn to delete the comment
posted by matteo at 1:15 PM on December 22, 2006


Response by poster: A couple of things, just to clarify:

- I'm not opposed to developing relationships. I just know that in some areas of life, you use different strategies depending upon your goals.
- the "standard of care" thing is great; I was able to google that phrase with "stevens-johnson" and see that the standard of care includes "meticulous wound care" (which she is not receiving) and often transfer to a burn unit, or at least consultation with the burn unit. Armed with this knowledge, we at least know what to push for, and not to be worried that they're not trying any particular medication, as there doesn't seem to be agreement on any particular medication
- they believe they identified the sulfur-based medication she was taking for "walking pneumonia" that caused the initial allergic reaction.
- Jedi & ikkyu2: Jedi, I appreciate your specific advice. ikkyu2, I'm taking Jedi's advice as something to investigate, and not as a substitute for the medical advice we're getting from the doctors in the hospital (during the 5-10 minutes we see them every 24 hours).
posted by mabelstreet at 1:20 PM on December 22, 2006


Never leave her alone, if possible. In my experience lots of mistakes are caught, and probably even more prevented, when a patient has an informed, alert family member present to ask questions. Don't worry about being rude or pushy. If they come in to give her meds that don't seem right or you don't remember the doctor prescribing, ask what they're for. Make sure they've always got her name right and that they check her wristband before they so much as breathe near her. I've had overall excellent care in the hospitals I've been in, but each time I've had at least one near-miss on the wrong meds, and once they were about to do a blood test on me that was meant for some other patient. On one occasion the nurse insisted she was right, wouldn't tell me the name of a medication (I recognized the pill), and then insisted it was my fault for telling them the wrong medication to give me.

And don't be subtle about it. Make sure everyone who comes in contact with her knows you're watching them, that you're checking on what they're doing, and that you are willing to go to a higher authority if necessary. Never be afraid to ask for the doctor, or to ask for an explanation of why a particular course of action is being taken. Ask about alternatives. Do NOT trust that they know best. Even the best and most conscientious of medical personnel make mistakes, and lots of the people you're dealing with probably aren't the best. It may be one small mistake to them, but to your family, it's the only one that matters.

Ask all personnel to wash their hands (or how recently they have washed them). Doctors are notoriously bad for failing to do this, even though they intellectually understand the risks of hospital-borne infection.

If anything seems wrong, tell someone. If there's a minor swelling around the IV site, if she begins to seem less comfortable, if she begins to seem disoriented -- anything. Be willing to use the nurse call button, and if they don't respond in time, to go chase someone down at the desk.

Oh, and seconding NucleophilicAttack -- "standard of care" is the magic legal phrase that makes medical types wet their pants. Don't throw around the term "malpractice" -- that can come across as an empty threat from overwrought family members. Standard of care, on the other hand, shows a level of familiarity with the legal requirements that frightens many med types, and has the benefit of not being an overt threat.

Basically, what is boils down to for me is be informed and be pushy. Don't worry about these people liking you, or making them feel bad, or anything. Nobody in that hospital cares as much about your mother in law as do the members of her family. Nobody has as much time to pay attention to her and her needs. Nobody knows her as well as her family does. What may seem only "slightly confused" to a nurse who doesn't know her may seem "extremely disoriented" to her family members. Trust your gut. Ask until you get someone to pay attention to you and an answer that makes sense.
posted by katemonster at 1:27 PM on December 22, 2006


First of all, I'm sorry your mother-in-law is ill, and I hope she feels better soon.

No one here can say what specific kind of care your mother-in-law should receive, because no one here is your mother-in-law's doctor or nurse. But given information about the disease in general, the two things you mention in your question (no private room, isn't seeming to get better) aren't necessarily evidence of sub-standard care. Private rooms are increasingly reserved for patients with communicable diseases (especially given the explosion of MRSA), and SJS doesn't necessarily require a private room. Some people with SJS are very sick and require lots of intensive care in the burn unit. Others can receive the care they need on a medical floor. It's impossible for anyone here to say what kind of setting is best for your mother-in-law, and if you have questions about it, you should ask the people who are caring for her right now. But their decision to have her in a room with another patient isn't necessarily sub-standard care.

As for her seeming not to have improved, I can't speak to the specifics of her medical situation, but only to what I know of SJS as a disease in general. In most cases people are hospitalized for two weeks, sometimes longer, and improvement can take much longer than three days to be apparent. Again, only her direct caregivers can tell you what to expect from her specific course of treatment, but SJS can take a long time to resolve.

As to strategies to get her attention, threats are unlikely to help. Like in any other situation, you will only put people on the defensive, and it will weaken the relationship you have with your mother-in-law's best in-hospital advocates. It may not seem so to you now, but your mother-in-law's nurses are on her side, and yours, and they want her to get better.
posted by jesourie at 1:32 PM on December 22, 2006


Nthing the advice to be very nice to the doctors and nurses. They do not set policy. If you have a problem with policy, escalate to administrators. If you have a problem with an individual's behavior or diagnosis go to supervisors.

Be real careful about fixating on a private room, especially with an HMO. Unless she's in a hallway, there are much more important things to worry about. It tends to make administrators write you off as high maintenance, as well, thanks to abuse from the overly entitled who perceive "private room" as a first class upgrade. If you mean to say you are concerned about her infection risk, talk about it in those terms.
posted by Lyn Never at 1:33 PM on December 22, 2006


Just wanted to add -- I think you can be pushy and ask questions without being rude. But I'm Southern, and have years of experience with telling people to eff off by asking them how they're doing. Don't approach people with the attitude that they're trying to do anything wrong, but it is totally acceptable -- even recommended by the California HMO Help Center, among others -- to be assertive, ask questions, and be your own (or your family member's) best advocate.
posted by katemonster at 1:44 PM on December 22, 2006


Having spent entirely too much time in the hospital, I found that the best way to get good care was to be a literate patient. I tried to find, understand, and know as much about my illnesses, my treatments, and my medications as I possibly could so that I could discuss and question everyone as intelligently as possible. This might be my hospital and the care I've had, but I found the doctors more likely to be frank and direct if I spoke with them as close as I could on their level.

Any hospital worth its salt should check wrist strap and script and talk to the patient (if possible) before administering medication. That helps prevents you from getting the wrong medication, but it doesn't help you from getting the wrong amount or not getting the medication at all. I caught one mistake of omission and one mistake of dosage that occurred when two physicians miscommunicated.

You should familiarize yourself with what treatments are typically used and when they are contraindicated. With this you can ask questions that sound like they're out of curiosity but puts you in the loop. For example (and I'm totally making this up), "I see that you're using cortisone dermal therapy - out of curiosity, how come you're not using a sterile saline wash in between?" which lets an MD know you're familiar with another treatment and for you to understand why without being antagonistic. Similarly, if you think she's not being turned enough etc, you can ask why turns are so infrequent. Again, instead of setting a confrontational tone, you can do your research and set it as a curiosity/observational tone, "I've only seen her turned twice in the past 12 hours - if her skin is so sensitive, shouldn't she be turned more than that?" or "I've noticed some tender spots - would those be helped by more frequent turning?"

And by all means, if you have some good staff members, write thank you notes to them and their supervisor.
posted by plinth at 2:13 PM on December 22, 2006


during the 5-10 minutes we see them every 24 hours

Ask the doc to spend a little more time with you. Ask specifically if the doc will schedule a 'sit-down' with you to discuss the care plan - maybe 20-30 minutes of their time.

These conversations are good for you, good for the patient, good for improving and optimizing the care plan, and good for the doc. No one loses.
posted by ikkyu2 at 2:21 PM on December 22, 2006


A doctor who rounds on a solo patient at 6 am is a lot less likely to spend extra time than if there is a loved one present. Always have someone at the bedside, so if rounds are at 5 am or 7 am or six pm, someone is there.
posted by docpops at 2:30 PM on December 22, 2006


If she isn't in a private room yet express this concern to her doctors. Call the unit she is on and ask to speak to the nurse manager or the nurse in charge if you call during the evening. The nurse manager is surely aware of her diagnoses and the importance of a private room. If she isn't, you, the knowledgeable family member can explain this for her. Politely insist that she is to be transferred to a private room. I will be very surprised if she isn't transferred after your talk.

The only advice I can give is to ask questions and stay at her side as much as possible. The best of luck and good health to your MIL.
posted by LoriFLA at 3:37 PM on December 22, 2006


Response by poster: I don't want to interrupt the flow of advice (please keep it coming!), but I wanted to say thank you to everyone who has offered advice. Needless to say we're confused, scared and frantic, and honestly I don't know where else I'd turn for such prompt, practical and helpful advice than ask mefi. I've been feeding my wife suggestions from you all via SMS, and it has really helped.

I've put ask mefi back on my rss crawl so I can return the favor to the hive. . .
posted by mabelstreet at 3:39 PM on December 22, 2006


As to strategies to get her attention, threats are unlikely to help. Like in any other situation, you will only put people on the defensive, and it will weaken the relationship you have with your mother-in-law's best in-hospital advocates. It may not seem so to you now, but your mother-in-law's nurses are on her side, and yours, and they want her to get better.--posted by jesourie

I completely agree with this statement, and as jesourie and others have stated it may not be medically necessary for a private room. If you would feel better about a private room perhaps the hospital could accomodate.
posted by LoriFLA at 3:43 PM on December 22, 2006


Make goddamn sure anyone who touches her washes up first.
posted by docpops at 4:56 PM on December 22, 2006


Make goddamn sure anyone who touches her washes up first.

This is so important that I thought I'd just put it in italics in case it got missed the first time. You can bet if someone I cared about came down with S-J, I'd be in the room, asking people to wash their hands.
posted by ikkyu2 at 5:51 PM on December 22, 2006


Something to keep in mind here is that she's been admitted to Kaiser, an organization not at all known for responsive care. You can get what you need from K-P, but you must advocate for it in my experience. Speaking out, asking questions, and getting explanations is not only appropriate but necessary.

If you or other family members are not actively involved and talking to the doc and nursing staff, start now! Otherwise Kaiser as a whole tends to give patients and families the mushroom treatment.

And just so it doesn't get lost in the noise:

Make goddamn sure anyone who touches her washes up first.
posted by majick at 9:44 PM on December 22, 2006


I've had family in the hospital, and I stay there every minute I can, and if the pt is too zonked or too young to stick up for themselves, I don't leave the bedside. I've headed off a number of mistakes that way, by just inquiring, tactfully.

If you really think there's an issue, most hospitals have a Patient Advocacy office or equivalent, and that's a good place to use the "standard of care" phrase if you think it's warranted. Allow me to point out, for the benfit of future researchers mostly, that it's also a very good place to stop by if you are happy with the care. (Everybody tells you when you screw up, nobody, etc.)

Familiarise yourself with the most basic stardards of sterile and clean procedure, and keep an eye on everyone in the room. Some of it's just common sense, some not so much. It's not always obvious, but most hospitals will arrange an appt with helpful people on request, and I'd be tempted to ask to speak with the Contagious Disease person, who would probably be delighted to discuss the specifics of this particular problem with you. (Most of them got into the work because they found it interesting, and will be happy to discuss it with anyone who looks interested.)
posted by unrepentanthippie at 10:34 AM on December 23, 2006


Don't forget your own hands either, OK?
posted by unrepentanthippie at 10:49 AM on December 23, 2006


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