This is Part 3 of a four part series, introduced Monday, based on my family’s experience with our mother’s unexpected and dramatic ICU stay and bilateral lung transplant. [Go to Part 1  |  Part 2 ]  [Download the Complete Family’s Guide as a PDF]

If you are in the hospital with your loved one for any extended period of time you will pick up some of the terms and thought process of the doctors driving care decisions. Yet after their years of education and experience caring for patients, it’s highly unlikely you’ll stump them with some question you looked up on Google.

There are helpful questions you can ask regardless of your medical knowledge, but before you start asking questions, think carefully about why you want such answers and how you’ll process them. For some of us going to the extreme of reading medical textbooks and journal articles provides context and understanding for what is happening and what might happen next to stay more closely engaged in care decisions. For others, this kind of research would be overwhelming and would take away from being there emotionally for the patient.

Regardless of your approach, it is a smart idea to keep a running list of your questions so you are prepared when you meet with doctors on their daily rounds. Asking these questions may help you understand what might happen next and cross reference what people are saying.  As mentioned above, many teams and specialists may see your loved one. Asking similar questions of these different people may help you understand how clear the situation is or how aligned the care team is on what needs to happen. Questions can also be used to nudge people towards another way of thinking, acting as a softer way of suggesting something that might otherwise be perceived as challenging a staff member’s expertise.

Finally, there is no voice more powerful than the patient’s. If your loved one can communicate, having them drive the discussions with the care team can be highly effective.

Asking Questions to Help

Level I – Questions to track direction and consistency	Level II – Broad questions incorporating multiple concepts	Level III – Questions that require more understanding of medical concepts
Doctors range from brutally blunt or pessimistic to overly concerned with how you will respond.  Ultimately, we just wanted an accurate view of what was happening and to make sure everyone was on the same page.	A more advanced version of level 1, this line of question seldom arises from your own research. It’s usually conveying the concepts one part of the medical services team has expressed to you to someone in a different area in order to nudge thought or behavior.	These questions can  focus on factual scenarios or very specific nudging of providers to certain actions. It is important the facts / reasoning conveyed in your questions be accurate.
What are you concerned with the most, has that changed since (yesterday, earlier this week, last week/month etc.)? What are the important decisions the team or we will likely face? What do you think is the right course of action? Are there procedures we may need to consent to in the coming day(s)? (Consent is required for any significant procedure.)	X, Y, and Z (labs, vitals, imaging, etc) has happened and I’m concerned {condition, response to medicine, etc.} is happening?  Is that the right way to think about this and if so what is the plan? Dr. T was concerned about X,Y and Z and ordered additional tests.  Have those come back, what was the result, and are you still concerned about that?	Earlier this week we changed medication X to Y because there was concern for Z.  Since Z has gotten worse/ better, do we need to make another change?  The nurse last night was worried about metric X and had proactively given her medication Y before she has to {do PT, insert a line, etc.}. Is that because of Z / will we do that again?

Just remember, regardless of how politely they answer your questions, each interaction builds or reduces credibility for other observations or thoughts you may convey regarding care. So be conscious of what questions you ask, how often, and what you do with the information.

The Family Meeting

On occasion, it’s possible to request a meeting with the care team. Usually that will bring together some combination of doctors, nurse practitioners and others to meet with you and your family in the patient’s room or a conference room. These meetings nearly always needed to be requested, but they can be very helpful because they are longer and more in-depth, taking place in a room where everyone can sit and have a discussion. They can also be more detailed and be more strategic in nature. The team can walk through where things are at, what might happen, and what is most important.

Often the family meeting is as much for helping your own family navigate these scary time as it is for an exchange of information with the medical staff. For example, in the case of my mom’s lung transplant, we were asked several times whether we would give consent to “experimental” trials or “high risk donors”. The very wording made us lean towards “no”. However, these very same procedures can often be the best chance a family member has (and clearly were in my mom’s case). In these scenarios, no level of research and diligence I could do to confirm safety was completely effective in convincing members of my family something was the right course. However, for them, a doctor they knew had been caring for my mom saying “if this was my mom, I would 100% consent to this” made all the difference. The meetings helped get everyone on the same page.

Ensuring Continuity

With so many different people rotating in and out of providing care, it often feels that medical care is a game of telephone with a message passed from person to person, often being retranslated and sometimes misinterpreted along the way. Because you are tracking only one patient it’s often easier for you to recall exactly what has happened than it is for the medical system. While I’m not recommending that you sit in every discussion or handoff, offering context for certain decisions isn’t a bad thing. We never second guessed the major decisions my mom’s medical team made, but there were a number of occasions where we provided context that changed a decision they made because they did not have the best information.

For example, at one point my mom could not eat regular food because of aspiration risk. The primary care team felt getting a feeding tube into her immediately was important to get her the nutrition needed to maintain her strength prior to a transplant. Various nurses made several unsuccessful attempts to insert the feeding tube, and eventually the staff decided to have IR (interventional radiology) place the tube.

However, before this could happen my mom was transferred to a different ICU floor tailored to pre (lung) transplant patients. The staff in the new ICU repeated the same bedside process – unaware of the previous failed attempts. The delay led to missing the window for IR to do the procedure and they said it would have to happen after the weekend, unaware of the urgency a different team had placed on regaining nutrition. After our raising the earlier team’s recommendation and describing what happened, they decided to accelerate this and have IR place the feeding tube the following morning.

One of the most common challenges in continuity relates to medications and dosing. We never had the same nurse on for more than two or three consecutive days, and as a result we were often in a better position than the care team to recognize patterns in what medications and doses created lethargy or excessive sleep. A couple of months into my mom’s stay a newer staff member tried increasing the frequency and dosage of an anti anxiety medication that normally didn’t make people drowsy or lethargic. However it had done exactly that with my mom, who had displayed a high sensitivity to it and similar medications throughout her stay.

Limiting the medication led to her being more awake and able to participate in physical therapy. This in turn allowed the staff to see excessive fluid drainage from her wounds as she walked. As a result, they came to suspect, verify and treat an infection with an additional surgery.  Being caught a few days later (or earlier) could have had a significant impact on her recovery. Less dramatic versions of this example occurred throughout her stay.

When your loved one is on a dozen medications it’s hard for even the professionals to fully understand what exactly is causing lethargy, excessive sleep, anxiety or other conditions. Yet regular observations from the same person or group can provide a level of continuity that staffing situations in critical care make difficult. No hospital would acknowledge that a patient’s family has a role in ensuring the continuity of information for the medical team. However, if you speak with doctors and nurses privately they will share a different perspective.

A nurse or doctor seeing an ICU patient for the first time who has been in the hospital for weeks has to navigate an archaic system with hundreds of notes, labs, images, and procedures and, if time permits, have a couple of short conversations with the nurse, fellow, or resident on rounds. Their experience with countless patients lets them quickly plug your loved one into a framework, but it’s impossible for them to know every juncture in medications, procedures, setbacks and reaction in your individual case.

Even in the best care settings, information continuity is a challenge. The rotation of specialists and care teams means new providers are nearly always ramping on the case, and the poor quality of today’s hospital IT systems aren’t making the situation any easier.

Speaking Up

Doctors make decisions quickly and with the best information they have. In some settings there are clear experts and hierarchies that develop as a result. Because there is so much rotation of staff, in the moment individuals may not know or be comfortable that they know information that would lead to a different path. Your role in speaking up and asking a question or providing a piece of information can directly change a decision or create a necessary pause to allow broader participation in providing inputs to a decision.

In one situation, a nurse who had not consistently seen my mom stated that she thought she was getting anxious and breathing fast as a result. One of the senior surgeons had reacted to this and pushed for having her take a mandatory klonopin dose both at night and in the day (her dose of klonopin at night had been reduced since the procedure and she did not take it during the day). Without a doubt, prior to the transplant, the actions and decision-making of this surgeon had saved my mom’s life. There was no one whose medical opinion we respected and believed in more. Yet it was clear she didn’t have the right information available to her in pushing for this course of action. Others on the team did not have the full set of information or were hesitant to challenge such a senior team member.

We said the klonopin clearly made her very sleepy and having it during the day would impact her PT. It was not a brilliant observation, just one that was clear because we had seen her reaction to this medicine closely and several times over the weeks. Based on our relaying these observations, the senior doctor shrugged and said fine. Instead my mom was temporarily given more pain reliever and her episodes of “anxiety” diminished. Her PT continued to progress and in a few days she was ready to move out of the ICU.

In Part IV we recognize that healthcare is not simply navigating a decision tree of options in the ‘right’ way given your condition.  It is very human and its important for the patient and family to recognize that in order to best engage with the healthcare system.

[Proceed to Part 4]