Older Patients Are At Risk in the Hospital: How to Advocate

Martine, this is an excellent resource and very clearly written, so thank you! This will be of GRATE value to our followers and those they share the medical maze with as consumers or providers.  

I saw something just last week on the news that had to do with the privacy curtains in hospital rooms and how they're not routinely cleaned; staggering what the germs were on the ones tested and if you observe the flow in a hospital room, the curtain often is pulled AFTER the provider is engaged with the patient and has washed their hands.  

I would think that requesting health care workers to don gloves would be prudent as well; according to the 'rule of thumb' that I learned about hand washing, the soap should be rubbed for 20 seconds or long enough to sing "Row Your Boat".  I recall one patient visit I had to do OT with a patient in a SNF in Colorado Springs when the 'cruise ship' GI bug had gone through the facility, required me to make SIX change of gloves and hand washing because the items we needed were not in the room and for infection control they don't allow you to wear gloves in the hallway.  Reason things were set up in the room? The financial aspect that is on your list related to hospitals; it's pretty much across the board anymore, unfortunately.  

Question: What is the scope of your advising people/consulting?  Example: If I have a friend in Colorado or Chicago who has a team of people watching over her while she's in the hospital and they have questions, can they call you for advise?  (Naturally, for a fee.)  And are there people capitalizing on this (in a good way) and being professional advocates? Seems like there's a market for it.  Again, the frustration is that then some families can and others cannot afford these things.  But everyone needs to focus on their realities and what they CAN DO, and as I often say 'it's not going to be IDEAL, but it's REAL', and you just do your best with what ya got.  Thankfully, I came out without any problems except a GRATE story you all had to put up with me telling!    I hope the same will be for all (except without the dramady part, just a good ending!).  

~~ Mardy

Two supportive stories you might want to follow along and read: One about my beau/husband getting MRSA in his brain during a surgery in the 1980s at the following link: www.lumigrate.com/forum/my-mrsa-herstory

and another about my personal experience the one and only time so far in my adulthood I was the patient: 

www.lumigrate.com/forum/my-hysterical-hysterectomy

(What happened there was part of the reason I started Lumigrate, and at this point I believe 'it was meant to be' to shift my life professionally in the direction I have gone -- helping MORE people through the Internet, due to realizing "If THIS could happen to ME, with all I know, in the 'best hospital' in the a city considered by many to be a 'best city' for health care -- WHAT is happening to people elsewhere, who don't know the ins and outs?" HENCE, my ENTHUSIAMS for Martine's book and work before I even got to know her. Now that I do, a bit from our phone conversations and messages through the computers/Internet -- YEAH is an understatement.  THANK YOU FROM THE TOP, BACK, FRONT AND BOTTOM of my .  Yes, it's a broken heart due to the medical system being so broken, but I do SO THANK YOU. )

Great advice for anyone who is supporting someone in the hospital. I really like the notebook or writing things down. It helps you and the patient keep track of questions along the way.

I have found my parents tend to just agree with the physician and do not ask questions. My best way to assess the level of understanding is to ask: "What did the doctor say?"  Then we can gather more information as needed. I like to ask about any upcoming test. Will this test have any effect on treatment? What happens if we do nothing?

The answer to what happens if we do nothing, was the turning point for my dad to understand the serious nature of his heart condition.  Ask until everyone understands, this will help with decisions along the way.

Gwen, those are excellent questions. 

With people who have medical complexities that are impairing their quality of life and which are going to be a 'long, downhill' without resolutions likely developing in 'their lifetime', I like to have the conversation SOONER than LATER about what I call "the fork in the road".  If you think about the momentum of a ball going in a direction, once the medical team starts rolling, there's momentum going in that direction and I find it REALLY helpful if the ball from the very beginning knows 'there's a fork in the road ahead'.  Here's the story:

You're going down the road of life that everyone is on and which you're used to being on and you've come to a fork in the road.  

Most people are chosing the 'road' that routes them through interventions that will be 'fight this' -- PTs to make them stronger, OTs to reinforce the function of what the PTs are doing to make them stronger, medications that are going to counter-act what's going on their body, that often need higher doses, side effects, and then medications to counteract the side effects, etc.  It becomes where the focus of life for them and their loved ones around them becomes CONSUMED with it.  

From the fork in the road, the person can take the OTHER route, which is to have specialists working with them who address embracing the end of life as something not to be 'fought against', but embraced and facilitated.  Instead of having a PT and OT come to the home and work on getting stronger, they might shift their focus to what can be done to make the person more comfortable -- stretching, massage, a few things to maintain strength.  Or with OT, the equipment and techniques might switch to what the patient/person really 'needs' versus what everyone thinks they need. Is there a different way of doing the hair? Showering/bathing? Is there equipment to make that safer and easier for the person or their caregiving team? What ACTIVITIES are meaningful to the person?  And naturally, nursing and therapists work together so much we have fuzzy boundaries on who covers what and all teams divvy / divide things up differently I've found in my career.  

I've seen people who LOVED showers and actually scared the stuffing out of me insisting on using their beautiful and wonderful soaking tubs not really care that much about showers in the end and others who when in adulthood weren't daily shower/bathers wanting to shower every day in the very "home stretch".  So there's the need for the expertise of therapists to stay involved related to transfer techniques (PT and OT reinforcement) and adaptive equipment (OT).  With a death that occurred in my family, the hospice was excellent but had I not had the medical background and years of experience I had, we'd have been in trouble OR an admission to a hospice facility would have been necessary, and I truly believe with some additional support, more families can have the experience, if they wish, to have this be part of their home's life, just as some prefer home births.  (Side note: With a birth there are other factors that are VERY different though, so I'm not comparing this from a medical - needs standpoint, only a values of the home/family standpoint.)

I think part of the 'industrialization' of things in the US in the 1900s lead to people doing as my father's parents did: retire to Florida and move away from everyone back home. Their children had left to go to college or the military or otherwise 'left the nest' for careers other than as was done in the past, staying to work the farm.  So in the US today we have a very wide variety of the values and all things related to families with aging parents. But no matter what, a good therapist will help find out what the patient wants and then help the whole team get onto that page, which, based on all the different values I just brought up, can be more difficult than it sounds, I've experienced.  Curious about what you guys have found.  ~~ Mardy

 Gwen, thanks for the great comments. I also liked your suggestions, especially "What happens if we do nothing?" 

I think the passive approach to medical care is pretty common with an older generation who were raised to respect the doctor and not ask questions, not to interfere. 

All my best,

Marrtine

 Mardy, 

Thanks so much for the comments. Thank you also for allowing me to participate in Lumigrate.  

Regarding privacy curtains--it's a concern. Think about how many people touch them and then touch the patient, then touch all the surfaces in the patient's room and then touch the patient again. The bacteria on curtains would probably one of the worst contaminated surfaces in the patient's hospital room because of lack of cleaning. 

Asking each person to put on disposable gloves after washing his/her hands is an excellent idea. He/she just has to remember to not touch the curtain with the gloves on!

You asked about the scope of my consulting. Right now I mostly helping patients and parents of patients who have difficult to diagnose medical conditions. When the patient sees a number of doctors, receives a different diagnosis from each doctor, a different treatment plan from each doctor, is sent for several tests and still nothing is accurately diagnosed and the symptoms are still present, I  help them put together an accurate medical history, complete with health summary, time line, help accumilate copies of medical records and more, so the patient or the parents of the patient can meet with a new specialist for another medical opinion with a comprehensive medical history. 

It's very difficult for patients and parents alike who have suffered with a medical conditon or illness for a long time to be able to remember everything that has happened, when this medication was tried and what side effects occured and more. I act as a healthcare detective in partnership with the patient and/or the parents and piece together medical information. Usually a patient or the parent cannot replicate everything that has transpired so having a dialogue about what happened to jog their memory is very helpful. 

I also help people navigate the healthcare system. People call me and say for example, "My mother is in the hospital. I can't reach the doctors. There are so many doctors. Each day her treatment plan is changed and now she is doing worse than before." I then ask questions and realize that the mother is in a teaching hospital, realize why there are so many doctors (interns, residents, fellows, attendings) and lay out a series of steps for the person. Because they are usually uspet and stressed, I create very simple steps for them just to get them moving so they can acquire the information they need. It's really about providing information and empowering the patient or the patient's loved one/advocate. 

Yes, if for example, you have a friend in Colorado who is in the hospital and her family/friends have questions, they can call me. I don't diagnose or treat in any way but I give out information so the patient or the family/friends can get headed in the right direction. Again, it's much like being a healthcare detective. For example, if your friend was not being treated well in the hospital, and the family called and explained the situation, I might say, "You have to go see the Ombudsman of the hospital." Depending on the circumstances, I might steer them toward the nurse supervisor. Or if you had a friend who was diagnosed with cancer and was going to a local doctor in a rural area and you asked my advice, I'd tell you that she must get to an oncologist at a highly respected teaching hospital in a metropolitan area as soon as possible because she will receive much better care there. 

You asked about professional advocates. Professional patient advocates are springing up all over the place. It's a burgeoning field. There are university programs for training as well. There is a reason patient advocates are so needed now. Professional advocates do a variety of things; some specialize in health insurance and medical billing, others navigate the healthcare system, and others who have medical training actually give second opinions and direct the patient to certain types of care. I'm not covering all of it but it's a growing field! 

Thanks for the good questions and I hope I gave good answers!

Martine