Chapter 16: The Patient Advocate as Patient Guardian

Donald W. Kemper and David Foster

Patient advocates act as guardian angels when you are in hospital

Too many modern hospitals have become intolerably complex. It is not uncommon for 30 or more health professionals to provide care to the same patient over a three- day hospital stay. Often three or more clinicians will be in the patient’s room at the same time but for different reasons

(and there may be even more, for example, when there are shift changes; older patients, who may have multiple medical problems, will often need many different specialists; and in hospitals attached to medical schools, who have to teach professionals in training).

Even with the best technology available to coordinate care, complexity is a breeding ground for medical errors, miscommunications and contradictory orders. Within this complex maze of care, only three elements of the mix are reliably constant: the patient, the medical record and, if the patient is lucky, the guardian. Because the patient is often medicated and the medical record is always mute and often disjointed, the only clear and steady voice of continuity in the patient’s room is that of the patient guardian.

Patients often feel helpless

There are three main reasons why hospital patients feel lost and helpless:

Hospital patients are generally sick, injured, under stress or maybe recovering from surgery. They are not at their best, mentally or physically. Fatigue and confusion commonly cause patients to feel lost and helpless.
There is a learned helplessness about being a patient. A patient is expected to be passive. The doctor gives the “orders.” The medical jargon is unfamiliar. The building layout is often confusing. And the patient is expected to ask permission before doing anything.
The medications that patients are given often cause drowsiness, confusion and disorientation. Whether the drug effect is mild or severe, patients under medication are not able to think as clearly as they normally would.

The “Telephone Game”

Have you ever played the game “Telephone”? One person begins by whispering a long sentence to the person next to him—just once with no repeats. Then that person whispers what she thought she heard to the next person, and so on, until everyone has heard and repeated the message. Then the final message is compared to the original message. Most of the time, there’s a hilarious disconnect between the beginning and the end. Much the same can happen in a hospital, but without the fun and games.

A friend of ours got caught up in a round of repeated misinformation during her hospital stay. She was scheduled for hip replacement surgery. At the pre-op appointment, she was asked if she had any drug allergies. She responded that she didn’t have any allergies but she was sensitive to opioids. She said she could take them, and they worked well, if an anti-nausea drug was also given. The pre-op nurse made a note in the chart.

During the prep period right before surgery, the prep nurse said, “It says in your chart you’re allergic to opioids.” Our friend said, “No, they work well for me if I also get an anti-nausea drug with them.”

In the hospital room after the surgery, the attending nurse said, “Since you’re allergic to opioids, we’re giving you Tylenol.” The patient said, “No, I’m not allergic. Opioids really help control pain for me. I just need to take them with an anti-nausea medication because they make me nauseous.” The patient’s spouse heard this exchange three different times while he sat with his wife in her room. But the message just didn’t get through—the circuit of misinformation kept getting repeated.

It wasn’t until 4:00 in the morning after the surgery, when the patient was exhausted and crying for pain relief, that she finally was given dilaudid, an opioid pain medication, and her requested anti-emetic. This episode played out the telephone game in which the wrong information kept getting repeated despite the patient’s attempts to correct it. If the spouse had been included in the patient guardian role, he would have been able to save his wife the painful experience.

Good doctors aren’t enough:

Everyone hopes his or her doctor will be above average. We want our doctor to be technically competent, be a diagnostic genius and have a caring bedside manner. Even if that were true for every doctor, it would not be enough. In the hospital setting, your doctor is often not nearby. Your doctor cannot be the constant, caring guardian angel you need to protect you from error.

There are too many others providing care whom your doctor may not even meet. Good doctors are important, and if yours is better than average, count yourself lucky. But even with the best of doctors, once he or she is out of the room, you can still be given the wrong medication; be asked to walk when you shouldn’t; or be given an infection by someone who did not wash his hands.

Many medical errors are less about how good your doctor is and more about how good the system is in coordinating your care among the many professionals who are there to help you.

Medical mistakes do happen

Primum non nocere is Latin for “first, do no harm.” The principle is taught in every medical school. Its prominence in medical education foretells the reality that mistakes will happen unless you are extremely careful to prevent them. In the U.S., one-third of hospital patients are subject to medical errors, resulting in about seven percent who experience permanent harm or death, as per one news report.

Mistakes will happen—but they don’t have to happen to you

The job of the patient guardian is to help the care team to prevent mistakes or to correct them before they harm the patient. Mistakes are preventable, and many can be prevented by the actions of the patient guardian.

There are four main duties of a patient guardian: infection control, medication monitoring, watching for changed symptoms and shared decision making. Each duty is targeted at preventing a different type of medical mistake.

Infection control involves the guardian’s insistence on the staff washing their hands every time; ensuring the administration of peri-operative antibiotics before, during and after surgery; following appropriate wound care rules; and keeping visitors with coughs, colds and fever far away.

Medication monitoring involves paying attention to what the pills look like and when they are given, plus asking questions if anything changes.

Watching for complications or changes in the patient’s condition and pointing out any changes to the right staff member can be life-saving.

Shared decision making involves always asking if there are options – and very importantly, if there is the choice to do nothing. Often, watchful waiting and attentive inactivity are sensible choices. The guardian needs to ask - what would happen if the patient delayed or avoided a recommended treatment or test. Many treatment decisions are “preference-sensitive,” so the right decision depends on the patient’s preference. The guardian can help to make that preference heard.

Preparing to be a patient guardian

There are a few things a patient guardian can do before or at the start of a hospital stay:

Interview the patient about his or her wishes, and ask for copies of the patient’s advance directives for use if needed.
Get written permission from the patient to see his or her medical records. In the U.S., this may require a privacy release document.
Record the patient’s baseline blood pressure, pulse and other vital signs for comparison later.
Ask the main doctor what complications to look for, and record phone numbers for whom to call if these symptoms appear.
Keep copies of key parts of the medical record with you. This is critical when the patient is transferred from one facility to another. Sometimes the patient or guardian’s copy or download of records to a smart phone can be very useful to the doctors at the new facility because the more formal transfer of information can consume precious time.
Ask to see the quality measures for the type of care the patient is expecting to receive. The National Quality Forum website allows you to search quality measures for specific treatments. (www.qualityforum.org/Qps/)
Remember the guardian’s role is primarily a medical one – to ensure the patient gets the best medical care.

Of course a guardian can be a friend and supporter too. But performing the role of a guardian when the situation calls for it – and being willing to be assertive when needed, is the one function that will make the biggest difference.

Getting Help from the Clinical Record

Patient guardians, with the patient’s permission, are increasingly gaining access to the patient’s chart and medical records. This is an important tool to have.

Many providers offer patient-facing applications or website access to medical records through standards such as the Blue Button. (www.bluebuttondata.org/)

Laxmi is a cancer patient at a hospital clinic that allows patients (and other authorized individuals) to download medical records onto a smart phone. Her husband did just that. When Laxmi had a stroke and was transported to a different hospital, the emergency physicians there were not able to access Laxmi’s medical records at the first hospital. After repeated attempts to get the records, Laxmi’s husband simply pulled them up on his smart phone and showed them to the emergency room doctors, who used the lab results from the first hospital to determine the right course of treatment.

Be loud enough to save a life

No one enjoys being a pest. We particularly don’t want our doctors to think we are rude, ungrateful or “problem” patients. On the other hand, holding back when you know things are not right can prevent you from saving the life of someone you love.

Lewis Blackman was a previously healthy, highly promising 15-year-old boy who was three days past what was supposed to be a routine surgery to prevent future problems. His pain had been controllable after the surgery, but on the morning of the third day it rose to “a 5 on a scale of 5”—and then it got worse. He was on a pediatric cancer unit because the surgery unit was full. It was the weekend, and the surgeons had turned his care over to residents.

In the afternoon he was even worse. The nurse wrote in the chart, “Gas pains—patient needs to move around.” In spite of Lewis’s protests, Helen, his mother, and the nurse helped him walk around the ward. He seemed weaker and weaker to Helen. The nurse thought Lewis was just feeling sorry for himself.

Helen asked for an experienced doctor to come and see Lewis. Instead, they sent the chief resident, but they didn’t tell her he was still in training. She relaxed because he seemed confident and she thought he was a veteran. He was not. Lewis’s pain was unbearable. He was sweating and his temperature had dropped.

On the morning of the fourth day, the nurses could not measure his blood pressure. They thought the equipment must be broken. Lewis’s speech became slurred. He said, very slowly but quite audibly, “It’s going black.”

Only then did the chief resident call for a full “code alert,” and veteran doctors arrived. But it was too late. Lewis was pronounced dead at 1:23 p.m. that afternoon. An autopsy determined that Lewis’s abdomen held nearly 3 liters of blood caused by the hole that his pain medicine had eaten in his upper intestine. Lewis had slowly bled to death, and no one but Helen had paid attention to the signs.

The full story is here: www.lewisblackman.net/

Our medical system should never allow this to happen again. And yet, we know that it will. If you are a patient guardian, there is no action you might take that is too rude or too insistent if it results in possibly saving the life of your child or your loved one.

Many hospitals are implementing a family-activated “code” to provide an extra layer of patient safety. If a patient guardian sees that a patient’s health is changing for the worse and the clinical team is not responding, the guardian can call a “code” by dialing a phone number, and a response team will be activated to address the issue. (Code HELP at www.harrisonmedical.org/ file_viewer.php?id=6115)

Hospitals are not as safe as we wish they were—not nearly as safe. No one believes that a patient should need a patient guardian. But unfortunately, they do. No matter who you are and where you are, having a patient guardian to help protect you in the hospital is a good idea. Hospitals, even the famous ones, are so very complex that as soon as they work to eliminate errors in one area, new problems spring up in another. Of the three constants in the room (the patient, the record and the guardian), the patient guardian is quite often in the best position to prevent errors or to spot them early on.