Part 2: We All Need a Friend, an Advocate, to Be Safe in the Hospital

Health care settings, including hospitals, are not the safe havens we hope they will or should be. Unfortunately, we need the extra layer of protection afforded by our advocate/helpers to avoid errors. Perhaps even more compelling is the actual therapeutic benefit of having loved ones with us during an illness, often at the bedside.

Lessons from COVID

Because of concerns about COVID’s spread, visitors were greatly restricted in hospital, nursing home, and other health care settings since its viral rampage began in 2020. While arguably necessary from an infection prevention perspective, such policies had many unintended harmful side effects.

Prior to COVID visitor restrictions, we may have taken for granted the helpfulness of caring family and friends. One of the most tragic consequences of the pandemic has been depriving people of this presence. “There seems to be this feeling that family is nice-to-have, not essential,” said Daniela Lamas, a pulmonary and critical care physician at Brigham & Women’s Hospital in Boston. But when they’re not around, as has been the case during most of the pandemic, she said, “there is a real cost.”

If nothing else, the absence of close friends and family during COVID restrictions has highlighted the fact that bedside visitors offer not only comfort, but true clinical value and therapeutic benefits. They both enhance physical and emotional well-being and help to protect against medical error. They can often provide important details that may be missing from health records. They can note and report subtle changes in behavior that may precede adverse medical complications. A caring visitor can calm agitated patients with a touch and provide reassurance and hope with a word. In addition, a myriad of informal help is afforded by a vigilant family member or friend.

Visitation Restrictions

Even with the very real concerns of spreading COVID 19, some doctors having seen the negative impact of policies barring or limiting visitors altogether have been convinced that hospitals need to balance the risks and benefits of allowing visitors. They emphasize that family caregivers are more than simply visitors. The Centers for Disease Control and Prevention’s guidelines also state that “visitation should continue to be prioritized for those visitors important for the patient’s physical or emotional well-being and care.” When we have family or friends serving as our advocate/health care helper, they are acting as caregivers and are effectively furthering our physical and/or emotional well-being.

Visitor restrictions are again in place in many hospitals in the country. If you are faced with this obstacle, be sure to participate and communicate with electronic means, such as FaceTime. Even if a loved one is geographically distant, it is possible for them to provide support during a health care visit.

Therapeutic Benefits of a Helping Visitor/Advocate

Maura Kennedy, an emergency physician at Massachusetts General Hospital saw firsthand the negative impact of the absenceof a trusted person during a shift in the emergency department. A patient experiencing an asthma exacerbation became increasingly anxious and fearful, and her blood pressure soared. Eventually, the staff got a family member to calm her down over the phone. “Had a caregiver been sitting by her side, how would that entire episode have changed?” Kennedy wondered.[1]

Studies from all over the world show that when visiting hours are longer and more flexible, patient ICU stays are shorter. Patients are less likely to suffer from delirium or anxiety. They have lower levelsof stress-related hormones. Coronary patients had lower heart rates after bedside visits; patients with brain conditions showed a decrease in intracranial pressure during theirs. In almost every case, more and longer visits improve a patient’s health. Visitors in the ICU can actually help someone survive and recover fully from critical illness. Imagine what you can do for a loved one knowing that your presence is not only likely to be comforting and reassuring, but that you can also help protect against harm.

You Need an Advocate. Medical treatment can be hazardous to your health.

Physicians and other healthcare providers mean well. They want you to be well treated, they want your health to improve, and they want you to be safe in healthcare settings. They are often successful in achieving these goals on your behalf.

Yet there is a very real risk of being harmed by errors that occur in the course of receiving medical care. Frightening, isn’t it, to realize that you could be harmed by seeing your doctor or receiving care in your local hospital.

The estimated number of deaths in the United States resulting from preventable medical error ranges from 250,000 to 440,000 per year.[2] This is a minimum of 700 deaths per day.[3]

Countless others suffer illness or injury as a result of medical errors.[4] Dr. Martin Makary, professor of surgery at Johns Hopkins University School of Medicine in Baltimore and leader of the Johns Hopkins research[5], explains that “medical error”[6] includes a wide variety of ills, both systemic (such as failures in communication during patient transfers to another staff) and individual (such as individual doctors’ mistakes).
“It boils down to people dying [or suffering] from the care that they receive rather than the disease for which they are seeking care,” Dr. Makary said.[7]

It includes many other kinds of preventable harm as well.

Here’s another poignant example that highlights other sources of preventable harm to patients. It underscores the need for an advocate, someone to watch and monitor patient care.

Mr. Smith (not his real name) began experiencing double vision at the age of 82. An outpatient biopsy was done at a local hospital to see if he had a dangerous inflammation of an artery near his temple. He didn't, but things only got worse for him.

Before the biopsy, he had been prescribed a high dose of prednisone, a steroid, to prevent inflammation. He duly followed the instructions he was given after his biopsy which directed him to continue “all pre-op medications.” Unaware that this referred only to drugs he had been taking on a regular basis, he kept taking it, and even refilled his prescription.

Days later, he was in the emergency room with steroid-induced psychosis. Worse, his previously mild Type 2 diabetes had worsened; his blood sugar had increased to dangerously high levels – and it was probably the rising sugar levels that had caused the double vision in the first place.

Several other mistakes were made during his month-long hospital stay: he was given standard meal trays instead of sugar and salt-free food that his doctor had prescribed. Pills he should have taken were later discovered on the floor; he was left for hours sitting in a wheelchair in a hallway after an MRI scan. Most certainly unnecessarily in the hospital in the first place, he was victim of another often preventable misfortune: he contracted what is termed a hospital-acquired infection (HAI). The longer one has to be in the hospital, the more likely one is to experience other perils of hospitals, including inactivity, and delirium, which in turn affect overall health negatively. There were other instances in which Mr. Smith suffered because of “preventable inadvertence” by hospital workers who meant well, but did harm.

This is but one of hundreds of stories most of us have heard or even experienced first-hand.

Our biggest mistake can be that we think our doctors and our medical facilities will manage everything and keep patients safe.

Facing Hospitalization: Friends and Family Can Help to Protect You

Good medical care requires proactive, inquiring involvement. Without helpoverseeing our medical care, we may pay a price, both in money and in suffering.

There is something we can do to improve our odds of enjoying the benefits of medical care while avoiding its pitfalls. A growing body of evidence shows that patient outcomes improve measurably when families and friends more actively participate.[8]

Prominent geriatrician Dr. Mark Lachs asserts, “As perilous as hospitalization can be … I firmly believe that there is no health-care venue where laypeople—patients, families, concerned friends and neighbors—can have a greater impact on improving outcomes of care.”[9]

Family and friend caregivers can beneficially affect patients’ hospital experience as well as their long-term health. One review that examined 15 studies on caregiving outcomes published between 1990 and 2016 found that including these caregivers in the hospital discharge planning process was associated with 25% fewer readmissions 90 days after patients went home. A separate study of patients who had surgery found that, compared to patients who were allowed visitors, those who were isolated reported feeling less satisfied with the care they received.[10]

Not trivially, caregiver/advocates can speak up for patients’ treatment choices or even food preferences. Unsurprisingly, patients in that study who were not allowed visitors were also less likely to report timely access to medications and less likely to agree that their preferences were adequately considered during discharge.

Dressing Down In A Hospital Gown – The Impact Of Infantilization And Other Indignities

The absence of caregivers at a patient’s bedside can negatively impact mental health. Even those of us without cognitive impairment clearly also benefit from having a reassuring presence. Research shows that social isolation can cause psychological distress and induce or worsen delirium, especially – but by no means exclusively -- in older patients. Even a short hospital stay is likely to be stressful and exhausting. Noise, sleep disturbances, and disorientation do not make for a restorative environment to begin with.
The hospital environment strips us of our normal life and well-being in other ways as well. We wear hospital gowns that are uncomfortable and too revealing. The most sophisticated and erudite among us are suddenly called by our first names, infantilized. We struggle to be seen as full-fledged multifaceted adult humans when hospitalization homogenizes us into the all-encompassing role of “patient.”

A note on delirium: Some patients have hospital induced or post-operative delirium – manifested as confusion, possible cognitive dysfunction, and changes in behavior. While the risk is higher for patients over age 65, this can happen to any of us. These symptoms might appear to be a new, unrelated illness which, in turn, makes the delirium worse. Helpers can keep familiar objects and people around. Among many other things, for example, they can, simply but importantly, make sure glasses or hearing aids are at hand and within reach.

Some of us will experience what is called “post-hospital syndrome,” which also means an increased risk of hospital readmission as well as more health problems. According to the Agency for Healthcare Research and Quality, roughly 17% of Medicare patients have to be readmitted within 30 days of discharge.[11] It is concerning that most of these readmissions are not even directly related to the original reason patients were in the hospital!

Put in the affirmative, Vice-president for Clinical Excellence and Safety at the ECRI Institute, a nonprofit that promotes evidence-based care, Karen Schoelles, M.D., says, “One of the most effective ways to prevent post-hospital syndrome is to have someone with you to be your advocate and helper.”[12]

Concerned lay people can also help to ensure that the patient is safely as mobile as soon as and as often as possible. They can facilitate communication and help to coordinate multiple medical professionals. A reminder to a staff person or a visitor to wash hands can be lifesaving. This simple measure can prevent a virulent hospital-acquired infection. Cumulatively, they can help patients recover more quickly and get them out of the hospital – an all-too-frequent source of infection -- sooner!

When family members or other caring individuals take such steps, they’re acting as patient advocates.

Advance Directive – The Presumptive Advocate

As a practical matter, family members and friends are well positioned to serve as patient advocates. Those whom we name in Advance Directives may be logical choices to act as advocates for us whether we have full capacity, impaired capacity, or no capacity. Most of us name family members in our Advance Directives, but many do not.

If you've signed an Advance Health Care Directive, you've chosen a trusted person to make decisions for you when you can't. You may also have a provision in your Advance Directive that says you want that person to be with you even if you are capable of making decisions, but are weak. The person you named in your Advance Directive is presumptively your choice for an "every day" advocate.

Here is the language that we prefer:

“If I am extremely weak, medicated and/or in and out of capacity, or if I have borderline capacity, I request that my agent be present with me whenever I must make decisions about my health care, including whether to accept or refuse treatments or diagnostic tests.”

However, your advocate doesn't have to be your Advance Directive agent; it can be a friend or family member; even a community of people from a church, synagogue, or other organization who are willing can take turns helping.

How to Empower Your Advocate

You can sign a document that gives authorization for a helper to see your medical records and discuss your care with medical providers. Doing so will facilitate their ability to advocate for you and help you make decisions.

If there is someone (or more than one person) who will be helping, we recommend that you do this even if you have named an agent in your Advance Directive. Why is this important and maybe even necessary?

The reason is the Health Insurance Portability and Accountability Act (HIPAA). The document is known as a HIPAA Release.

The HIPAA law bars medical practitioners from releasing medical information to anyone, even to the spouse of a patient, without such a release. Even your duly named Advance Directive agent may not be accorded access when you need help. As long as the patient has the ability to say what she wants, the health care agent doesn’t necessarily have the right to be included. However, people often want someone to help them, to advocate for them during an illness or other medical care episode that doesn’t involve incapacity.

In addition, while you may have named only one person to be your agent, you may want more family members or friends to be able to communicate with medical providers. Your named agent may not always be available or may not be the first person on the scene. A broad HIPAA release will permit medical personnel to share information with anyone you name, not limiting this function to your health care agent.

If you have a child in high school or college, we strongly recommend you take this step. Similarly, if you are helping with a parent or other family member, it makes sense to get their authorization to be part of your team vis á vis health care providers.

SPECIAL NOTE: CHILD GOING OFF TO COLLEGE?

A Special Note to parents of 17- and 18-year olds who may be leaving home for college or other adventures: medical professionals are bound by HIPAA not to reveal your newly adult offspring’s medical information. If your child wants you to continue involvement as a caring advocate in the event, for example, they are temporarily incapacitated by an accident, they will need to fill out a HIPAA waiver naming you. We hope you never need to use it, but it beats being left in the dark.

The HIPAA waiver can be included in a comprehensively drafted Advance Directive. However, it is also wise to have a separate document to affirm your ability to communicate with your loved one’s health care professionals.

Sadly, we have seen medical providers use HIPAA to avoid having to deal with family members, sometimes at risk of great harm to the patient. Especially in emergency situations, family members often have vital information about the patient, whether it’s the medications he is taking, allergies he may have, or his usual physical and mental health. Although HIPAA does not say that medical personnel cannot listen to this information, it can be misconstrued in that fashion. It’s best to eliminate the whole issue by having a HIPAA release signed and available in case it’s ever needed.

Sample form here.

Role of Professional Advocates

There are professional patient advocates who work in myriad settings. Advocacy professionals have a variety of specialties. Some will accompany you to medical care appointments and be with you in the hospital. Some will help you with medical bills and insurance; some are able to conduct research on your behalf. One resource in this regard is the Alliance of Professional Health Advocates[13] Whether or not family or friends are available to you, a professional advocate can be a valuable resource.

My emphasis here is to encourage enlisting friends and family who are willing – and often very much want – to help. “Lay” advocates can provide a lot of support and much-needed vigilance and assistance.

Understatement: We Are Stressed When We Are Ill; Judgment Can Be Impaired.

At every step, whether it be a doctor's appointment, evaluating tests or treatments, dealing with hospitalizations -- having a friend or an advocate can help you. How many of us remember everything a doctor tells us? – Especially if we have just received a troubling diagnosis? Getting a serious diagnosis can be a real shock! Realize you're not going to be objective; no one makes decisions well when they are emotionally distressed. The hardiest among us find it difficult to be assertive or to gather facts when we’re ill.

The stress and anxiety of being ill are enough to keep us from functioning optimally at best.

Having someone with you is invaluable in and of itself. Informally, your “advocate” can be a second pair of ears and a reminding voice, take notes, help you formulate on-the-spot questions, hold your hand, lower your anxiety level. Your friend/advocate can help make sure the doctor really pays attention to you.

In everything from getting an accurate diagnosis, to knowing whether a medical test is a good idea, to understanding treatment options, to preventing errors that can harm you, you and your advocate (and it can mean a community of people whom you trust) must play a key role. The challenge to ask the right questions, to make the right choices, and to protect ourselves while we fight to regain health is daunting. Marsha El — who has been married to her husband for almost 40 years made a significant positive difference as her husband’s caregiver/advocate. During his stay in the hospital, he relied on her to organize his discharge papers and interact with doctors. As she noted, “Sometimes when you’re sick, you don’t feel like asking questions.”[14]

Medical Errors Not Only In Hospital

My focus is on helping families and friends with some tips about how to “be there” for their loved ones when they’re facing a health care issue, particularly involving the prospect of hospitalization. Note that harm in health care, which is another phrase some might use instead of medical errors, isn't limited to hospitals. It can happen anywhere health care is delivered. Medical errors can happen at doctor’s offices, nursing homes, pharmacies, surgical centers, and even at home. My emphasis on hospitals in no way implies that we don’t need to be engaged in other health care settings.

Many of the dangers of hospital care aren’t a result of technical procedures and tests, themselves. Most of the time those are done well. The devil, as they say, is in the details—those that occur before, after or in between the procedures or surgeries. And errors, as noted above, aren’t the only way that harm can be done.

Checklist: What Your Advocate Should (Ideally) Do

The following is a list of some of the specific things your advocate can do to lower the risk of medical errors and help you get the most appropriate care from qualified professionals. Importantly, you must be comfortable sharing your health details with friends and/or family who may help.

1. Talk with the physicians and others involved with your treatment: If possible, your advocate should be present when your physician sees you during daily rounds in the hospital and take notes on how your treatment is progressing, what the next steps are, and raise any questions or concerns you or your advocate has about your care or your condition. Unfortunately, studies have found that where clinical decisions need to be made very few patients were provided adequate information to make an informed choice. So it is extremely helpful for you to have and make sure that you get and understand the answers. Respectfully asked, these are KEY questions – that will also encourage collaboration from your clinician.
2. Provide your medical history: An advocate can provide your treating physicians with your medical and family history if you’re not able to. If possible, keep your medical records in a secure electronic format so that accurate information can be easily shared with everyone who treats you. In an emergency, your advocate can describe the symptoms causing your need for hospitalization, including when they started and whether you’ve experienced these symptoms before.
3. Help minimize the risk of medical errors. Medication errors can cause serious harm, so your advocate should have a list of all the medications, including over-the-counter medications and supplements that you take, as well as any medication allergies. When hospital staff come to administer medications, your advocate will be able to confirm what the medications and dosages are, and confirming that you are the patient for whom they are intended. If a new medication is prescribed, the advocate can ask what it is, what it’s for, and what potential side effects to be aware of.
4. Minimize the risk of hospital-acquired infections (HAIs). They can remind all visitors and healthcare professionals to wash their hands before they come into contact with the patient. This simple practice consistently done prevents countless infections.
5. Help you avoid inappropriate or duplicative testing and care (See Part 1 in this series). When someone comes to perform or take you for diagnostic testing or other procedures, your advocate should check to make sure they have the right patient and that the test or procedure hasn’t already been performed by another member of your healthcare team. This happens more than you might think. Communication among specialists and other care providers is sometimes less than ideal.
6. Ensure that your wishes are respected. Even if your acting advocate is not your agent under an Advance Directive, they should know what your wishes are if you are unable to speak for yourself. They should know who your agent is as well as how to contact him/her.
7. Carefully listen to, note, and, if needed, ask about follow-up care and recovery. When you’re ready to be discharged, your advocate should make sure you know when you need to be seen for your first follow-up visit and by whom, if there are any medications you need to continue taking or should discontinue. If possible, (i.e., in the case of non-emergency hospitalization) learn as much as you can before hospitalization: Will special equipment be needed at home? Incision care, and any limitations on what you can do. What symptoms might indicate a complication or side effect requiring medical attention? Your advocate can help and confirm what you learned at the time of your discharge.

Ask for Help; Expectations.

A client (pre-COVID) who was facing surgery told me that her sister had offered to fly in to help her. She did not know whether to accept her sister’s offer. She didn’t want to trouble her sister. There was no one else that she felt she could ask for help. I told her to take her sister up on the offer. Accept help.

With this in mind, talk frankly with your helpers/advocates. Your advocate will need to:

1. Be comfortable with being assertive and tactful when talking with doctors and healthcare practitioners; able to elicit answers to questions in plain English.
2. Have time to be at the hospital with you.
3. Be organized to help handle the paperwork associated with your hospitalization and willing to take notes and gather information from your healthcare team about your diagnosis and treatment.

If you’re willing to ask for help, think about who among your loved ones can help you do well during a hospitalization and enjoy an effective rehabilitation experience. Who can help you facilitate recovery and avoid harm?

Sometimes it takes a village. A client may not have the perfect individual to advocate and otherwise watch out for her. Or, she may have one ideal advocate, but one individual alone can’t be there 24/7. Friends and family, as well as church and synagogue groups may be called into play to help. A professional patient advocate may be worth it in some cases.
Above all, realize that you deserve help when you are ill or injured. A caring advocate can help you to maximize the potential benefits of medical treatment and minimize the dangers and harms that affect far too many of us.