This is Part 4 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 | Part 3 ] [Download the Complete Family’s Guide as a PDF]
As you move along in your ICU journey, it’s important to remember that care is driven by and provided to people. Unlike machines, people have good days and bad days. They make mistakes, get along better with some than others, and are not always unified in their opinions. Acknowledging this is important in ensuring your loved one gets the best care with the least emotional trauma for him, you, and those around you.
Compared to many stories of trauma in the ICU, ours was dramatic in the dimension of my mom’s condition and care (there are only ~2000 lung transplants a year in the United States), but fortunately less eventful in terms of massive medical errors or conflict. Nevertheless, less eventful is not the same as drama-free.
Early in my mom’s time in the ICU she had declining oxygen levels. It was likely she was going to eventually need the help of a ventilator to breathe. Yet the manner in which she ended up on life support was abrupt and traumatic for her and her caregivers. Late one evening a staff member decided it was important to put in an arterial line (a relatively minor procedure that does not require consent and allows for constant monitoring of oxygen in the blood and blood pressure). My mom had thin veins and the nurse practitioner struggled to place the line. She was crying out in pain and her oxygen began to drop rapidly as I stood and watched. Instead of backing off and resetting or getting some help from one of the attending physicians, the NP just persisted in a procedure that was not urgent. The reaction of the nurses in my mom’s room and adjacent ICU rooms reinforced they were very uncomfortable with what was happening. Despite my standing silently outside the immediate room as instructed, I was asked to leave and go to the waiting room. As soon as I exited I sent a short message to my mom’s primary doctor at the time. Regardless of if things worked out it was clear (for me) the process had been dramatically mishandled:
Not sure when you will get this; they are attempting to put an arterial line in and her oxygen dropped to the low 50s while they struggled to get it in, I was asked to leave as silently watching was potentially disruptive. Not sure if they got it in or not and if the oxygen went any lower; but it certainly wouldn’t seem to be what I’d expect from a line placement.
A few minutes later they urgently asked me to come in to try to calm my mom down as she was panicked and they needed to get her to allow them to put a mask on to increase the flow of her oxygen. She was scared and having difficulty breathing which made it harder to get her to calmly breathe in the higher flow oxygen. By now the ICU physician on call was there and the NP was communicating what had happened with a clear lack of detail. My mom’s O2 rose back into the 80s but she was still struggling and had to be intubated. It would be the last time she would be able to speak for two months.
In addition to observing what had happened directly to my mom, I also knew it was extremely rare for the insertion of an arterial line to trigger an intubation. I was angry and scared that my last interaction with my mom could be watching her writhing in pain. At the same time, my mom’s O2 levels had been slowly dropping. It was likely in a day or two intubation would have been necessary regardless. So instead of expressing that anger with the intensity I felt, I was more matter of fact. I expressed that I thought it was poorly handled and even though we may have ended up in this state (intubating her), those actions had taken away a chance for the family to talk to my mom and help her understand what was going to happen.
I hoped that she would survive this crash and we were at the beginning – not the end- of her journey at the hospital. I needed this group to help her survive and get on the lung transplant list. My anger was less important.
It is impossible for anyone to not be influenced at least subconsciously by their personal feelings. Disagreements with those caring for your loved one can occur, but significant conflict and especially directed anger towards those caring for them can result in worse care — regardless of who is at fault.
Interpersonal Dynamics Matter
A hospital like any other workplace has organizational politics, and different opinions on who provides the best care. It has people who get along wonderfully and those that don’t. You are a part of that dynamic and if you earn trust through your actions, your words and perspectives will gain credibility that can help your loved one and help you through the roller coaster of emotions. We experienced the ups and downs of this journey.
After my mom had been intubated (and later switched to tracheal intubation) she was going through testing so she could get onto the transplant list. She was unable to speak but was conscious and writing. One evening they were unexpectedly trying to change her arterial line and having trouble. She was in extreme pain and asked them to stop (in the future we proactively suggested the smallest needles, preemptively giving her pain meds or mild sedative and had no further problems related to line placements). My uncle, for whom English was a second language, expressed his displeasure and stated my mom wanted them to stop.
The next morning my mom communicated to the rounding doctor on call how unhappy she was with the process. The doctor listened and explained to her that blood draws were sometimes necessary but that at this point she did not even need the arterial line.
Later that afternoon one of the NPs said they needed to talk to me. As we entered the room, 2 nurse practitioners, two nurses, a social worker, charge nurse and doctor on call all squeezed in. I was physically cornered and petrified something had happened that made my mom ineligible for a transplant. As the doctor started speaking she communicated there had been some complaints about our family in the ICU. It took a few moments for me to shift out of my anxiety over her fate on the list. I reflexively apologized for anything we might have done and just kept saying how grateful we were to be at UCSF. As my head cleared I asked what we had done. The doctor on call reminded us that only two people could be in the ICU room and no one could be asleep in it. I immediately agreed, apologized and ensured her it would never happen again.
I asked if that was what led to us being in such a large meeting. After some jumbling on the rules being important, one nurse said we were asking a lot of questions. But then a nurse practitioner said of course questions were ok. Another nurse suggested that maybe, perhaps our being there so much was making my mom anxious – to which my mom vigorously objected.
I asked graciously for specific examples we could learn from and change our actions. As the doctor on call listened, she appeared to become more sympathetic to the lack of clarity amongst the nursing staff about what the problem actually was. She shifted the conversation to reinforcing it would be a long road and it was good to be clear, open and respectful to best get to what we all wanted (she was exceptional in her expertise and bedside manner amongst even a strong cohort of pulmonologists).
The incident from the evening before – which I believed triggered the meeting – never came up. Potentially because a subset of the group did not want those specifics discussed with my mom’s primary care team. It’s natural that no one wants to have folks constantly watch them doing their job, especially if they make errors due to skill or capacity. Since these deeper drivers will never be voiced aloud, second order concerns are raised. Regardless of the actual drivers, direct conflict is seldom effective in making your case or in helping your loved one receive the best possible care.
The nurses, NPs, doctors etc. work together but do not have a management relationship. Yet if a nurse complains about the family, it’s likely the doctor who will lead the interaction with the family. With no other context they would naturally be expected to support the hospital staff — whether or not the doctor was witness to what had occurred. Even when the care team presents in a unified manner, it’s possible individuals have varying and even counter perspectives. It’s important not to color the entire care team based on the actions of an individual.
Over the coming weeks we got to know the nurse practitioners, regular doctors and many of the nurses. Trust built based on how we interacted with them. Many weeks later (after the transplant), we had a charge nurse chastise a member of our family for not leaving the ICU when an emergency was occurring in an adjacent room despite the fact the room nurse had said to stay. Because the charge nurse referenced that we had been “spoken to before”, we felt it important to immediately send a message clarifying what had happened with the nurse practitioner. The nurse practitioner replied — before even speaking to us — that the nurse’s actions were not appropriate and that he would address the matter.
The difference in the two incidents were the level of trust that had developed between us and the NP over time. Once you are known (hopefully as calm, informed, well reasoned and respectful), the default dynamics of team and organization apply differently. You’re a source of information for others on what is occurring when they are not present. So much of the care process is a game of telephone between shifts and roles that clear, accurate information is valued — even if it comes from you.
Resolving Trust and Space Away From You
Ultimately, you have to trust the experts to make critical medical decisions for your loved one. If that trust is lacking in your situation, you might be able to find another expert you do trust on the care team or relocate to another hospital, although that could be difficult or impossible in many cases. Most of your questioning is to make sure all the right information was considered, the logic is sound, they are checking with the other experts they need to, etc. Even that, however, can be difficult to do and you will have to trust the care team.
Pre transplant there was a critical juncture where my mom’s lungs were failing even with ventilator support and her right ventricle was enlarged. Her lungs were so fibrous it was hard for her ventricle to push the blood through them. At a certain point this could disqualify her from the transplant. To subsidize the function of her lungs they were going to put her on ECMO (ECMO is a device that oxygenates your blood and removes CO2 from it — replacing/augmenting what your lungs do naturally). It is a significant procedure and not taken on lightly. They told us this would be needed but were adamant my mom could not handle the version of ECMO that was more significant, VA(that also took pressure off the ventricle), so they would do the other version, VV ( in this version, the blood is returned to the venous system, so the right ventricle had to do the same amount of work). They explained this might not be enough, but was the best we could hope for. The procedure would be done near the end of the day.
I went home to tell the family, and we knew we were grasping at straws. When I returned a few hours later the pulmonologist said they had decided instead to do VA ECMO. He said the head of the department would discuss it with us and perform the procedure. When the department head arrived it was less of a conversation and more of her bluntly stating that VV might make us feel better for a few days but it would never get to the right outcome. She said that VA was the only real chance for being able to get a transplant but that it shortened her window for getting a lung to 24-36 hours. We signed the consent, the surgery worked and my mom received a lung transplant less than a day later.
Clearly there had been discussion without us there. Colleagues discussing bluntly the best course of action. Perhaps disagreement over the right course of action had even remained. Yet it’s clear that our involvement in that would have not been helpful. It would have potentially led to a less direct and more filtered conversation.This was a medical judgement call and we were trusting that judgment. We were trusting the decision making process of a department and its leader that had the best transplant success rate in the country.
As a caregiver, you are an important part of a patient’s journey but at some point there has to be separation and trust between you and your care team — even when you want to be involved and informed of everything that is happening. In high stakes decisions, that space and faith in your experts does not mean you will get that second chance at life, but it gives you the best chance. Most importantly, regardless of how it makes you feel, it is what is in the best interest of your loved one.
As I relived our course through writing this document it’s evident my perception of events and lessons is true … for me. It would have helped me to read such a guide before we began my mom’s journey. It’s equally clear that much is missing – insurance, the changes of life with survival, death, serious medical errors, and much more.
As a result, for certain people and circumstances the thoughts here could be the wrong path. Your family, your care team, your loved one, and your loved one’s condition are all unique, and there are just too many variables for a single best approach. Yet I am certain that some subset of this truth will apply to every journey, and that hospitals generally do not do enough to support you in navigating that journey.
Whether it’s because of capacity, real or perceived liability, the difficulty of change, skepticism on its importance, or other factors, the status quo in critical care does not invest in empowering patients or caregivers. I very much hope that changes and this guide is rendered obsolete. Until then, I hope its lessons and others provided through the comments section will help you walk through these difficult times. There is community even through this lonely journey.
It’s not the care team’s responsibility to provide you a crash course in medicine for all the details of your loved one’s condition. They are responsible for conveying the concepts of the condition, but not conduct medical school classes. If you have a desire to go deeper, it’s on you to pursue that knowledge. In doing that there are a few sources that I found most helpful.
- A list of equipment and devices you might find in an ICU and their purpose (Sunnybrook Health Sciences Centre).
- Common equipment, devices and procedures in the ICU from a European perspective (NHS Trust)
- General guidance on navigating the ICU and a caregiver’s role (U.S. News & World Report)
- ICU procedures and handbook from a resident’s perspective (University of Illinois, College of Medicine at Chicago).
- Guidelines for family-centered care in the ICU (Critical Care Medicine Journal)
- Uptodate.com, a subscription-based site targeted to doctors and patients that provides in-depth articles, resources and graphics for point-of-care decisions (uptodate.com).
If you have access, physicians who have relevant expertise can be an extremely helpful resource. We were fortunate to have such a network and spent hours with them learning how things work, what was happening, and what could happen next. At certain stages, this proved invaluable as it gave us more time to process what was happening. They will be able to spend time with you on what might happen with detail most care settings don’t allow time for. We did not attempt to use them to create another doctor for our mom, but to help us understanding what decisions were coming, how they might be evaluated, and what was routine vs. exceptional. It made us better and faster at providing consent to various procedures (which for both minor and major procedures cautioned of the risk of death).
[Download the Complete Family’s Guide as a PDF]