This is the second of a series of articles on how engaged bedside advocates can help their loved one navigate the complexity of cancer care in the hospital and beyond. These articles contain parts of my forthcoming book Becoming a Bedside Advocate: Insight and Information to Help Your Loved One Through the Modern Healthcare Experience.
I didn’t ask enough questions about the complexity of my husband’s surgery (see June 2021 issue), and I didn’t have a realistic expectation of how brutal his recovery could be, which didn’t help.
The better the questions asked by the patient and the family advocate before surgery or other hospital treatment, the more your medical team will tell you.
Gather information about the surgery, starting with a quick Internet search, for example. Try to digest why your loved one is in the hospital. Then take time to form your questions. The medical team will answer your concerns, but you must ask.
The “white coats”—the hospital doctors and nurses—are entrusted with our lives and the lives of our loved ones. I interviewed surgeons and hospitalists who were part of Rick’s care, as well as other doctors and nurses, asking each of them, “What do you want patient advocates to know?” They shared their frustration with the practice of medicine today. The demands of electronic medical records documentation were a recurring topic that greatly influences hospital patient care, causing burnout among medical professionals.
Points outlined in a 2019 article in the New York Times1 were repeatedly brought up by the physicians I interviewed, such as, “Workloads have become heavier the last several years thanks almost entirely to the arrival of electronic health records….On average, nurses and doctors spend 50% of their workday treating the screen, not the patient.…The current system is pushing both doctors and nurses to the breaking point.”1
Even more troubling are studies showing high suicide rates among doctors and nurses. Physicians have the highest suicide rate among all professions, according to a recent report.2 Similarly, nurses are seeing an increase in suicides, as shown in a study led by Judy Davidson, RN, DNP, of the University of California San Diego School of Medicine.3
Interviewing physicians and nurses led to these general insights:
- The bedside advocate must be responsible and ask the right questions to get good information. That is difficult for most people.
- The white coats think that, in general, advocates can and should do much better, be more aware and better informed than we are. They note that unprepared advocates can be disruptive and cause doctors to spend valuable time trying to communicate with us.
- Many advocates have unrealistic expectations of medicine, expecting perfection. The reality is that there are many gray areas in medicine, and we’ve got to accept that.
Doctors’ Perspective on Hospitals
Danielle Ofri, MD, PhD, D Litt (Hon), FACP, of Bellevue Hospital, NYU School of Medicine, provided insightful comments that were echoed by other physicians.
“We often have expectations of medicine as an absolute science. You put in a value, make a calculation, and an outcome comes out the other end. But, it’s not like that. There’s much we don’t know, and plenty of gray area. Trying to get comfortable with ambiguity is difficult. That’s the way medicine is, ambiguous,” Dr. Ofri said.
“It’s very hard to explain why a test doesn’t give a perfect answer, and it takes a long time. It ends up taking away from all the other things I need to do for my patients,” she added.
Dwayne Gard, MD, Chief Hospitalist at Memorial University Medical Center in Savannah, Georgia, who was our hospitalist and hospice lead during my husband’s final week of life in Savannah Memorial Health University Medical Center, observed that over the past 10 years, aggressive behavior toward doctors and nurses has become more common.
He sees this aggression as a breakdown in communication that isn’t necessarily the fault of patients and their families. Rather, the healthcare system is becoming ever more complex. It is difficult for patients and their families to navigate the hospital system.
Dr. Ofri pointed out that we ask of physicians a perfection that can’t be humanly achieved. According to the article about physician suicide, there are many reasons why those numbers are so high.2
I asked Dr. Ofri if she was concerned that these expectations of perfection will make medicine an unattractive profession. “No,” she said. “The people who go into medicine now do it for the right reasons. They are compassionate, committed, and dedicated to helping others. I worry, though, that the system wears them down.”
The impossible expectations and financial stressors of healthcare economics trickle down to the “boots on the ground,” and those boots are filled by human beings in white coats.
During the stress of advocating for my critically ill husband, the very last thing on my mind was the burdens of the doctors and nurses. I just wish I’d known their perspective then, which would have made me a better advocate.
“People have the impression that hospitals are straightforward, orderly places, but it’s not like that at all,” said Dr. Ofri. “Every patient requires an enormous medical team, because healthcare is so complex today.”
Every doctor and nurse I interviewed understood that hospitalization is rough on patients and families. We are disoriented and overwhelmed, we don’t know the language or the rules, and we don’t expect the inevitable chaos. We often go into survival mode, stunned by witnessing our loved ones’ suffering, and feeling the need to defend them. We need coaching from the white coats.
Physicians’ Tips for Bedside Advocates
Get a list identifying who is on your hospital team. Use the organization chart and go over it with someone on the hospital team, and don’t be afraid to ask, “Can you spend a minute or two with me on this organization chart?”
Try to understand why your loved one is in the hospital or ICU—why the surgery, the risks, the recovery, and even the worst-case scenario. It will help if you ask these questions of your attending physician before surgery. If you haven’t, ask for a reasonable outline from your medical lead.
Keep dated notes in a notebook, where you list the following basic information, and have it with you at all times:
- A list of the patient’s current medications and allergies. Medications are the hardest aspect of a patient admission. Your pharmacy can help with that list.
- Ask the primary care physician for a 1-page outline of your loved one’s medical history, a list of only the major key findings. Doctors don’t have time to read a stack of medical records, but a list is helpful. Have a hard copy of any tests done in another hospital on hand.
- List contact information of all physicians involved with your loved one’s care; you may need to contact them at some point.
- Ask for the hospital lab reports and keep a copy in your notebook.
- In times of stress, it’s only human not to remember everything that’s been said. Physicians come and go quickly, so don’t be afraid to ask if you can use your phone to record a conversation or take photos. These recordings and photos will prevent the doctors from repeating themselves. Reading the transcript of your conversation with the physician may help you form future questions.
- Speak up if something bothers you. Don’t let the doctors leave the room before you’ve asked your questions. Ask your questions in a non-confrontational way. Nobody expects families or patients to be pleasant under stress, but being hysterical or rude is not helpful.
A Helpful Advocate
Paul J. Speicher, MD, MHS, Huntsville Cardiothoracic Surgeons, Huntsville, Alabama, our surgery fellow during Rick’s hospitalization, provided great insight into how bedside advocates can be helpful. “Most patients need someone to help navigate minute to minute. Without an advocate, it’s hard to know what motivates the patient, especially if the patient can’t communicate,” Dr. Speicher said.
“The advocate consistently observes the patient for hours every day. They often recognize changes too subtle for the medical team to see immediately. Ask non-confrontational questions to bring attention to the issue. Speaking up about what only you know to be your loved one’s baseline behavior can be helpful in giving the doctors a frame of reference,” he added.
Here are things to keep in mind:
- Realize that the primary relationship is between the physician and the patient, not physician and advocate.
- Develop a positive and trusting relationship with the medical team, without acting as a “traffic cop.”
- Put the patient in the center of attention. Some advocates will subconsciously put their own wishes over that of the patient’s, especially at the end of life.
- The best advocates try their best not to express their grief as anger and aggression.
- Open a positive relationship and dialogue with the doctors, including asking the right questions that may sometimes be uncomfortable.
- Lend an extra perspective besides that of the patient, so the larger picture can be seen.
- Know the wishes of the patient, have an updated healthcare power of attorney, and help to keep priorities aligned if the patient cannot speak for himself or herself.
What Isn’t Helpful
“Recognize that the medical teams are always overburdened, so please try to be judicious with calls and requests. It’s not common, but there will always be people who call every 10 minutes with questions that are not urgent, or ask the same questions over and over again, or request things that are not possible to deliver. It’s not common, but it only takes 1 or 2 like this to sink a doctor,” Dr. Ofri said.
“Being overly aggressive every minute creates a ‘reputation’ among the medical team that is not helpful to the advocate,” Dr. Speicher said.
“Don’t go rogue or be a traffic cop. Better results come if we trust one another,” said Thomas A. D’Amico, MD, Gary Hock Endowed Professor of Surgery and Chief of the Section of General Thoracic Surgery at Duke University Medical Center, who was Rick’s doctor at Duke Hospital.
How to Open a Dialogue with Physicians
Remember that doctors have limited time. But it’s helpful if the patient speaks up, or if the advocate steps in if it’s too difficult for the patient. Tell them your deepest concerns.
When doctors come into the hospital room, give them a few minutes to get their bearings and assess the patient situation, then ask your questions.
Don’t be afraid to start a dialogue. Many people don’t know what to ask doctors who come in and out of the room. Introduce yourself and find out why they are there.
If you want to know something, you must ask. Acknowledge they are busy, then address your concern. Medical professionals realize that what may be common sense for them is not always so to families and patients. There are no silly questions. To get the most out of your conversation, ask 1 or 2 open-ended questions:
- “How are things going for my loved one today?”
- “Where are things going from here?”
- “What happens if…?”
- “Doctor, I don’t know what to ask. If you were in my situation right now, what would you do?”
If you have important information about your loved one, make sure you tell everyone on the team. Don’t assume they know because you already told one of them.
Dr. Speicher clarified how to bring up a concern: “The advocate is there at the bedside and will see much more than the primary care nurse, who is being pulled in many different directions during a busy shift. The ICU team has rounds, people are in and out, morning and afternoon. You know your loved one far better than anyone. If your intuition tells you something seems serious or isn’t right, and you feel a level of certainty, bring it up first with the nurse; 90% of questions or concerns can be answered by the bedside nurse,” he said.
If you’re not getting a good response, tell the nurse: “I’m getting more concerned about this. Can you please call the doctor to check it out?”
Remember that most doctors and nurses have more work on their plates than can be humanly managed. And remember to get your rest. Your loved one is going to need you at full capacity when he/she comes home. If you have nothing left and your energy is completely spent, it’s hard to do your best.
Organize a team schedule and figure out when it’s best to be at the hospital. Sometimes it’s best for family members to stay overnight if the patient is having a hard time sleeping or needs comforting at night. Share information and share the time burden. Everyone will benefit.
What Nurses Want You to Know
The bedside nurse is our greatest daily asset. It’s common for critically ill patients and their families to describe their bedside nurse privately as “an angel sent to comfort their loved one.”
Yet nurses are rarely acknowledged for their great work. They mostly hear complaints.
I was fortunate to have one exquisite Duke ICU nurse sit down with me. Her name is Bethlehem Peters, RN, BSN, of the Cardiothoracic Intensive Care Unit at the Duke University Medical Center. She cared for Rick often during his nearly 8 weeks in the ICU. She was a wonderful person throughout Rick’s ICU stay.
Bethlehem quickly reminded me that nurses are taught to be the patient advocate. It’s one of the core foundations of nursing. I had no idea, and that insight, in retrospect, would have been very helpful.
Dr. D’Amico was the first to mention during his interview that the bedside nurse can answer 90% of our questions.
My Q & A with Bethlehem provides great insights for bedside advocates:
Q: What concerns you most when a patient has no bedside advocate?
A: “If a patient is intubated or critical, we need a family advocate. We need an accessible advocate, even if only by phone, accessible at all times.”
Q: When do you recommend an advocate get involved, or get out of the way?
A: “Research shows that family presence during stressful times is a good thing if they are emotionally stable and can stand there quietly in the background. Or, we will escort them out....Family members are okay, but they cannot get in the way of care.”
- Brown T, Bergman S. Doctors, nurses and the paperwork crisis that could unite them. New York Times. December 31, 2019. www.nytimes.com/2019/12/31/opinion/doctors-nurses-and-the-paperwork-crisis-that-could-unite-them.html.
- Anderson P. Physicians experience highest suicide rate of any profession. Medscape Medical News. May 7, 2018. www.medscape.com/viewarticle/896257.
- Davidson JE, Proudfoot J, Lee K, Zisook S. Nurse suicide in the United States: analysis of the Center for Disease Control 2014 National Violent Death Reporting System dataset. Archives of Psychiatric Nursing. 2019;33(5):16-21.