Help advocating for a hospital patient
August 11, 2016 10:51 AM Subscribe
My partner is back in the hospital for complications following a major surgery. She's covered by Medi-Cal and in a trauma hospital (the major public hospital in SF CA), and I'm concerned about her care.
As an example, yesterday she was given medication immediately prior to a procedure, which didn't relieve her pain--she was crying throughout-- but caused her to be intensely nauseous and uncomfortable for hours afterwards. When mobile, she isn't allowed to go outside or leave the ward (not for medical but for policy reasons). They are now talking about moving her to another hospital much further from me and her family.
I don't know where to start as far as advocating for her. It's hard to get information, and though the staff seem competent, there seems to be a kind of casual disregard for my partner's overall well-being. Any advice for how to ensure she receives the best care possible, especially in the context of being a poor person at a poor person's hospital, would be appreciated.
As an example, yesterday she was given medication immediately prior to a procedure, which didn't relieve her pain--she was crying throughout-- but caused her to be intensely nauseous and uncomfortable for hours afterwards. When mobile, she isn't allowed to go outside or leave the ward (not for medical but for policy reasons). They are now talking about moving her to another hospital much further from me and her family.
I don't know where to start as far as advocating for her. It's hard to get information, and though the staff seem competent, there seems to be a kind of casual disregard for my partner's overall well-being. Any advice for how to ensure she receives the best care possible, especially in the context of being a poor person at a poor person's hospital, would be appreciated.
I had to watch over the abysmal care my (poor) grandparents received at a poor person's hospital and the best advice I can give you is to become an enormous pain in the ass. It's shitty, I know: the nurses and doctors are probably overworked as it is, and trying their best, but, honestly, fuck that. Don't be rude -- being rude will get you absolutely nowhere with hospital personnel -- but be firm and make it clear you are not going to lay off. And don't lay off. Get as far up on the chain as they'll let you and talk to nurses' supervisors, social work heads, etc.. Take down names and phone numbers.
This, unfortunately, will not always get you what you want, even if what you want is a reasonable standard of care. But I've found no other way to get through to hospital workers than to make it clear you are not going to give up.
posted by griphus at 11:05 AM on August 11, 2016 [10 favorites]
This, unfortunately, will not always get you what you want, even if what you want is a reasonable standard of care. But I've found no other way to get through to hospital workers than to make it clear you are not going to give up.
posted by griphus at 11:05 AM on August 11, 2016 [10 favorites]
There is a patient ombudsman/patient care relations office for each hospital that is there to help advocate for patients. Use them wherever you can. Chaplains, even if you are not religious yourself, can also be incredibly helpful in this regard. The hospital is accredited by some body, likely the Joint Commission. The complaints you lodge through these official channels are documented and reviewed by the Commission during their accreditation visits. The hospital is motivated to resolve such complaints to document their patient care.
posted by goggie at 11:09 AM on August 11, 2016 [2 favorites]
posted by goggie at 11:09 AM on August 11, 2016 [2 favorites]
I found talking with a patient advocate and a medical social worker to be really helpful in dealing with a family member and the medical system. I think the fact that he had family that was paying attention and asking for help on his behalf helped a great deal. It is very hard and stressful no matter what. Take care.
posted by cairnoflore at 12:25 PM on August 11, 2016 [1 favorite]
posted by cairnoflore at 12:25 PM on August 11, 2016 [1 favorite]
The squeaky wheel gets the oil.
posted by AugustWest at 12:27 PM on August 11, 2016 [2 favorites]
posted by AugustWest at 12:27 PM on August 11, 2016 [2 favorites]
Create a noise, and lots of it. This is not the time to be shy. I know of someone who had surgery and nearly died if it wasn't for her mother who raised an alarm and chewed the doc. Nurses were great but overworked and too intimidated by the red tape so it will be up to you. Never ever let docs intimidate you as contrary to popular belief they don't know everything- if that was the case you would not see such huge errors in hospitals on a regular basis. Question everything to confirm you understand, ask for further clarification and if possible get 3 opinions. Before surgery repeat 10 times what she is there for so it is very clear to all and everyone there knows it. Anyone who comes in contact with her should know what your partner needs so there is no guesswork.
posted by metajim at 12:57 PM on August 11, 2016 [3 favorites]
posted by metajim at 12:57 PM on August 11, 2016 [3 favorites]
I'm a nurse, have worked inpatient, now a lot of my work involves helping patients advocate for themselves in the healthcare setting. Advice:
Be the squeaky wheel. You will not be punished or treated badly for this. The nurses might talk disparagingly about you at the nurse's station, but so what? If anything, you will be reassigned to a nicer, more compassionate nurse if you complain a lot.
Ask clarifying questions often, and use the most respectful but direct communication you can to do so. Sample questions, "What medications are you giving now? What are they for?" This is going to put the nurse on the defensive a bit, which is a drag, but it has the plus of clarifying that you are paying attention to this patient and bringing the nurse's full attention to this care.
Specific to your example, if they start to do a procedure before the pain medication has taken effect, politely and firmly say, "The pain medication was only given x minutes ago. Please come back in half an hour when it's had a chance to work". Or if it's just miserable you can ask them to stop and say, "She's not getting any pain control and this is really uncomfortable. Can you offer something else before you do this treatment?" They cannot do the procedure without her consent.
On the other hand, some procedures are uncomfortable period. Illness does involve suffering. In that context, you can expect the providers and nurses to at least be respectful and compassionate as they work.
Opiate pain medications do cause severe nausea for a lot of people, so that may be unavoidable. However, it is totally appropriate to ask the providers and the nurses what side effects to expect. Try a question like this, "She's never had [x medication] before. What kinds of side effects do you see people having when they take it?" and then if she is having side effects, bring that to the attention of the doctor or nurse, again firmly and respectfully. So something like, "She's really miserable and nauseous now, what can we do to reduce that?" There may be another medication that could mitigate the side effects.
If you think you or your loved one has been treated in any way inappropriately or disrespectfully, ask politely but firmly to speak to the charge nurse. Share your experience in brief and factual terms. They should take action. If they don't, you can ask to speak to the nurse manager for that floor.
Visit often but if possible take shifts with other friends and family so you have time to rest and re-focus.
You have a say in the plan to move your partner. I'm not sure why your partner would be transferred unless she needs a higher, or lower level of care. If she is being moved to a SNF/rehab/nursing facility, make it clear to the social worker/case manager/discharge planner that you need to find a facility that is where you are able to visit regularly. You can ask to speak to the person working on the discharge planning and they will come meet with you or at least call. If they don't ask for the nurse manager and explain the issue. Ask for specific clarity on why they want to move her.
Be cautious about how you express your fears and concerns to your partner. It is outstanding that you are there to advocate, but it can add to a patient's anxiety if their loved ones are raising the anxiety level about stuff that they aren't worried about. So try to follow her lead - if she feels she's being treated badly, you can go into full attack mode! But if not, be judicious in how you discuss this with her. Carefully choose your biggest concerns and bring that up with her in a brief and low-key way and see what she thinks.
Send me a mefi mail if you want more advice. I work at a place pretty similar and nearby to where your partner is.
posted by latkes at 1:10 PM on August 11, 2016 [23 favorites]
Be the squeaky wheel. You will not be punished or treated badly for this. The nurses might talk disparagingly about you at the nurse's station, but so what? If anything, you will be reassigned to a nicer, more compassionate nurse if you complain a lot.
Ask clarifying questions often, and use the most respectful but direct communication you can to do so. Sample questions, "What medications are you giving now? What are they for?" This is going to put the nurse on the defensive a bit, which is a drag, but it has the plus of clarifying that you are paying attention to this patient and bringing the nurse's full attention to this care.
Specific to your example, if they start to do a procedure before the pain medication has taken effect, politely and firmly say, "The pain medication was only given x minutes ago. Please come back in half an hour when it's had a chance to work". Or if it's just miserable you can ask them to stop and say, "She's not getting any pain control and this is really uncomfortable. Can you offer something else before you do this treatment?" They cannot do the procedure without her consent.
On the other hand, some procedures are uncomfortable period. Illness does involve suffering. In that context, you can expect the providers and nurses to at least be respectful and compassionate as they work.
Opiate pain medications do cause severe nausea for a lot of people, so that may be unavoidable. However, it is totally appropriate to ask the providers and the nurses what side effects to expect. Try a question like this, "She's never had [x medication] before. What kinds of side effects do you see people having when they take it?" and then if she is having side effects, bring that to the attention of the doctor or nurse, again firmly and respectfully. So something like, "She's really miserable and nauseous now, what can we do to reduce that?" There may be another medication that could mitigate the side effects.
If you think you or your loved one has been treated in any way inappropriately or disrespectfully, ask politely but firmly to speak to the charge nurse. Share your experience in brief and factual terms. They should take action. If they don't, you can ask to speak to the nurse manager for that floor.
Visit often but if possible take shifts with other friends and family so you have time to rest and re-focus.
You have a say in the plan to move your partner. I'm not sure why your partner would be transferred unless she needs a higher, or lower level of care. If she is being moved to a SNF/rehab/nursing facility, make it clear to the social worker/case manager/discharge planner that you need to find a facility that is where you are able to visit regularly. You can ask to speak to the person working on the discharge planning and they will come meet with you or at least call. If they don't ask for the nurse manager and explain the issue. Ask for specific clarity on why they want to move her.
Be cautious about how you express your fears and concerns to your partner. It is outstanding that you are there to advocate, but it can add to a patient's anxiety if their loved ones are raising the anxiety level about stuff that they aren't worried about. So try to follow her lead - if she feels she's being treated badly, you can go into full attack mode! But if not, be judicious in how you discuss this with her. Carefully choose your biggest concerns and bring that up with her in a brief and low-key way and see what she thinks.
Send me a mefi mail if you want more advice. I work at a place pretty similar and nearby to where your partner is.
posted by latkes at 1:10 PM on August 11, 2016 [23 favorites]
Write down a list of specific questions that she has.
Set up a meeting with her team: nurse, doctor, case manager, chaplain. Go down the list to get answers.
For exams: why is she being moved? Does she no longer qualify for acute care? What needs to be done before she can go home? what has her insurance authorized?
You can't change the past. Focus on advocating for her current and future needs. Make sure you have names and contact numbers of people who are arranging her potential transfer
posted by SyraCarol at 1:10 PM on August 11, 2016 [2 favorites]
Set up a meeting with her team: nurse, doctor, case manager, chaplain. Go down the list to get answers.
For exams: why is she being moved? Does she no longer qualify for acute care? What needs to be done before she can go home? what has her insurance authorized?
You can't change the past. Focus on advocating for her current and future needs. Make sure you have names and contact numbers of people who are arranging her potential transfer
posted by SyraCarol at 1:10 PM on August 11, 2016 [2 favorites]
That hospital has outstanding physicians but everyone is stretched very thin there. Praemunire is right, just being there as much as possible is probably the way to go. I also agree with being invariably polite and friendly but very persistent.
If she's being moved to a rehab facility, proximity to you and her family is certainly something they should be considering as long as there's space available. Sometimes there just aren't beds closer by, though, especially if the facility is providing specific services like dialysis or neuro rehab. But it's certainly a good idea to press the discharge planner/social worker on whether there are closer facilities that will meet her needs.
posted by The Elusive Architeuthis at 1:22 PM on August 11, 2016 [2 favorites]
If she's being moved to a rehab facility, proximity to you and her family is certainly something they should be considering as long as there's space available. Sometimes there just aren't beds closer by, though, especially if the facility is providing specific services like dialysis or neuro rehab. But it's certainly a good idea to press the discharge planner/social worker on whether there are closer facilities that will meet her needs.
posted by The Elusive Architeuthis at 1:22 PM on August 11, 2016 [2 favorites]
Something that we found useful, we my grandmother was in the hospital and we were doing shifts and staying with her was to keep a notebook, and every time the doctor came in and did something, to write down what it was - so if they commented or suggested something, gave a diagnosis, recommended another doctor, or gave a medication, writing it down helped.
My grandmother wasn't coherent through a lot of this, and that allowed us to do the shift work easily and to read up on whatever had happened that day or what medicine had already been given. Plus, it meant we didn't have to keep everything in our head.
posted by needlegrrl at 1:30 PM on August 11, 2016 [9 favorites]
My grandmother wasn't coherent through a lot of this, and that allowed us to do the shift work easily and to read up on whatever had happened that day or what medicine had already been given. Plus, it meant we didn't have to keep everything in our head.
posted by needlegrrl at 1:30 PM on August 11, 2016 [9 favorites]
Does your hospital have a social worker office? When I was overseeing my elderly mother's care, the in-house social workers were an incredible resource.
As others said before, absolutely talk, ask, request, ask why, get clarification. I found that tone totally mattered when dealing with staff: Apologize for taking their time, thank them profusely for giving up their time to speak with you, tell them their answers were very helpful, and smile as much as is appropriate. Be polite and never ever accusatory or angry to the line-staff. If it's something to be angry about, get in touch with the head nurse or the appropriate administrative offices.
posted by BigLankyBastard at 1:59 PM on August 11, 2016 [1 favorite]
As others said before, absolutely talk, ask, request, ask why, get clarification. I found that tone totally mattered when dealing with staff: Apologize for taking their time, thank them profusely for giving up their time to speak with you, tell them their answers were very helpful, and smile as much as is appropriate. Be polite and never ever accusatory or angry to the line-staff. If it's something to be angry about, get in touch with the head nurse or the appropriate administrative offices.
posted by BigLankyBastard at 1:59 PM on August 11, 2016 [1 favorite]
Also, be kind and appreciative of everyone when you have the opportunity. While it is true that the squeaky wheel gets the grease, it is also true (in my experience, anyway) that no one ever gets thanked enough for doing a good job and when you acknowledge the hard work folks do (in any setting, hospitals included), it tends to make people willing to go the extra mile for you. Minor example: When my dad was in the hospital and kept getting ice cream in a flavor he didn't like, I thanked the guy delivering the food for his service and then asked if he could make sure my dad got a different flavor at the next meal. Instead the guy took away the nasty flavor on the spot and brought back two of the good flavor. Major example: The hospital planned to discharge my dad without explaining to any of his daughters why he was being discharged without treatment for a seemingly fatal condition. (Maybe it was explained to my dad, maybe it wasn't; I'll never know.) Because I'd been talking by phone with his primary nurse in the days leading up to my visit, she conspired to keep my dad in the hospital the extra half-day needed for me to arrive before his discharge. Then that awesome nurse more or less dragged a doctor into my dad's room to explain his situation to us. (And she whispered, as she left the room, "Ask him everything you can possibly think of because this is the only person you're going to get to see.") This was not the main treating doc, cause he refused to see us, but a colleague who was also a cardiologist. And we all, including my dad, learned stuff about his situation that was total news to us. So yes, be assertive and yes, be as nice as you can be in a sincere way. This stuff is really hard. You are a champ for stepping up. Good luck!
posted by Bella Donna at 3:54 PM on August 11, 2016 [7 favorites]
posted by Bella Donna at 3:54 PM on August 11, 2016 [7 favorites]
Be firm and consistent.
Patient advocate, social worker.
Trauma hospitals specialize in things related to trauma, great orthos, burn units, dealing with gunshot wounds. They are preprder prepared to do major care to people whose bodies have been messed up for loss of reasons (car crashes, pedestrian incidents, house fires, abuse, gunshot wounds) so things associated with that will be top notch. If you are there for other things, the doctors will be qualified but maybe not the best of the best. Sometimes these hospitals won't have equipment or skills in very specialized areas (like unique types of heart surgury) and contract those patients to another hospital. If she's being discharged to a lower level of care, you have lots of choice, provided she doesn't have very unique or high level needs.
I want to be gentle and remind you sometimes doctors make tough calls due to many many factors and it may look ugly but be life saving. However that does not mean that you shouldn't have every little thing explained. The doctors should respond and listen. Social workers are major advocates especially regarding discharge and communication. Nurses can bring compassion and consistency to the every day care and can give you hints about the ins and outs at the hospital. (When doctors are rounds, who is good, what makes certian doctors happy). If you tell a nurse your having trouble communicating with xyz doctor, she will know who gets along with him or her, if it's going to be a monumentous task.
Many of these people are super compassionate but quirky and working in a highly stressful variable enviroment. It takes a little more effort to be noticed when everybody around you is also in critical condition.
Keep trying, you deserve the best care.
posted by AlexiaSky at 5:51 PM on August 11, 2016
Patient advocate, social worker.
Trauma hospitals specialize in things related to trauma, great orthos, burn units, dealing with gunshot wounds. They are preprder prepared to do major care to people whose bodies have been messed up for loss of reasons (car crashes, pedestrian incidents, house fires, abuse, gunshot wounds) so things associated with that will be top notch. If you are there for other things, the doctors will be qualified but maybe not the best of the best. Sometimes these hospitals won't have equipment or skills in very specialized areas (like unique types of heart surgury) and contract those patients to another hospital. If she's being discharged to a lower level of care, you have lots of choice, provided she doesn't have very unique or high level needs.
I want to be gentle and remind you sometimes doctors make tough calls due to many many factors and it may look ugly but be life saving. However that does not mean that you shouldn't have every little thing explained. The doctors should respond and listen. Social workers are major advocates especially regarding discharge and communication. Nurses can bring compassion and consistency to the every day care and can give you hints about the ins and outs at the hospital. (When doctors are rounds, who is good, what makes certian doctors happy). If you tell a nurse your having trouble communicating with xyz doctor, she will know who gets along with him or her, if it's going to be a monumentous task.
Many of these people are super compassionate but quirky and working in a highly stressful variable enviroment. It takes a little more effort to be noticed when everybody around you is also in critical condition.
Keep trying, you deserve the best care.
posted by AlexiaSky at 5:51 PM on August 11, 2016
If you're concerned with the treatment plan, including the administration of medications and pain control, consult with the doctor. Attend the morning rounds. If you get to the hospital around 5:30 am you should be sure to catch them.
Discharge planning should be handled by a discharge nurse and/or social worker. Consult these individuals. Discharge is a negotiation. Find out the criteria for discharge, learn the care requirements post discharge. You might be able to discharge home with community care supports, go to a different facility that is still convenient to you, etc. Have the conversation. Try to find solutions that work for everyone.
Good luck.
posted by crazycanuck at 7:14 PM on August 11, 2016
Discharge planning should be handled by a discharge nurse and/or social worker. Consult these individuals. Discharge is a negotiation. Find out the criteria for discharge, learn the care requirements post discharge. You might be able to discharge home with community care supports, go to a different facility that is still convenient to you, etc. Have the conversation. Try to find solutions that work for everyone.
Good luck.
posted by crazycanuck at 7:14 PM on August 11, 2016
This thread is closed to new comments.
What I think helps most is to have a physical presence at the hospital--either you or a family member--as much as possible. That way they know there are people who give a damn (unfortunately, there are many people who aren't so lucky). If you can, put a family picture near your partner's bed or other trinkets that will remind her caregivers of her humanity.
While you're there, talk in a friendly way to the nurses and other direct care-givers. Try to establish lines of communication, so that they might tell you about problems that occurred when you weren't there or go the extra mile to help. Show real gratitude to people who are genuinely helpful. A box of chocolates or similar small gift may help once you've had a few conversations.
It's legitimate to ask questions about your partner's well-being, particularly when it comes to pain and nausea; to object if she's in pain and ask for more meds, and, if she's very nauseated, to ask for antinausea medication like Zofran or Reglan. You have to be somewhat strategic about this, to try to avoid being labeled "pushy," but severe discomfort should be where you draw the line.
posted by praemunire at 11:00 AM on August 11, 2016 [10 favorites]