Avenues Becoming Your Own Advocate

Making the Best of a Hospital Experience

When a visit to a hospital is necessary, knowing what to expect, who to contact, and how to ask questions can be immensely beneficial. In this article, author Sandra Boeschen writes how “with a little preparation, an inpatient or outpatient visit can be the healing event you need.”

Spending time in the hospital, either as an inpatient or outpatient, is a side effect of a diagnosis of cancer and it is helpful to learn what to expect, who to contact, and how to ask questions.

There are so many layers to our current health care system, from insurance coverage and the increased specialization of caregivers to the various policies and procedures unique to the facility caring for you and the regulations that govern how that care is given. It is more and more common that patients will find challenges when making their way through the system, which is why asking questions and having an advocate to ask questions on your behalf is so essential.

At this point in time, the health care system seems bent on refuting the well-loved principle that “all things being equal, the simplest solution tends to be the best one.” Unfortunately, getting clear answers often requires patience with an increasingly complex and fragmented system.

Just as it is important to know as much as possible about the procedure you’re going to have, so too is it important to be knowledgeable about what to expect from the entire hospital experience. As soon as your hospital visit is scheduled, ask your doctor who he or she recommends you contact at the hospital to get more information.

The next step is to locate an advocate to help you through the system. Ask if the hospital has a cancer “navigator” or other staff person who focuses on working with cancer patients. Many facilities have such a designated navigator on staff; this is either a registered nurse, a person with a social work degree, or someone with similar training whose entire role is to ensure questions are answered and resources of that facility are explained.

If your physician does not know of such a resource at the hospital where you will be admitted, call the patient relations department, the nursing education department, or the community relations department. Persist until someone links you with someone who can help you understand what to expect during your hospital stay, including details on how the admissions process works, what kinds of professionals will be involved in your care, what tests will be needed in advance, what to bring and not to bring, who to call after hours once you are discharged, and how to be in touch with the billing department should that become necessary.

Having an advocate is incredibly important. When you are the person having the procedure, you will find that you may miss things that people say, be groggy from anesthesia, or otherwise not be quite yourself due to the uncertainty of the new circumstances you find yourself in.

It’s a good idea to take someone with you, be it a friend or partner, to listen, take notes, and gather materials both when you visit your surgeon and when you are seeing the cancer navigator or educator. A second set of eyes and ears ensures that you’ll have access to all the information you need later. A diagnosis of cancer and the subsequent strange new world of the hospital system make it difficult to absorb information, no matter how competent at listening you usually are.

If you appreciate classes, support groups, and educational materials, ask your physician and the hospital cancer navigator or educator for access to these resources. Most hospitals have patient education materials and staff who want to be sure you have the information you need. It makes the staff’s work more effective to have informed patients, so questions are welcomed. However, be aware that caregivers in a hospital are so specialized that you may need to ask more than one person to find the right resource. Most hospitals also have medical libraries, though not all are open to the public. If you are in the San Francisco Bay Area, there are many excellent resources, such as at the Institute for Health and Healing (locations in San Francisco, Marin, and San Mateo), Marin General Hospital’s Medical Library and Resource Center, and Kaiser Permanente’s Patient Education Service.

Before and during the hospital stay, expect to complete lab work and possibly other tests before you are admitted. If you will be having anesthesia, you will meet with the anesthesiologist. It is important to feel confidence in this person, so be sure to have all your questions fully answered. If you have some assumptions about anesthesia, ask to make sure they are accurate. Cancer care treatments, anesthesia, and other aspects of care keep evolving, so concerns about what happened to a family member or friend a couple of years ago, for example, may be less applicable today.

In addition to your oncologist, physicians involved in your care include, at a minimum, your surgeon and anesthesiologist. A pathologist (a physician you’re unlikely to meet in person) analyzes cells after your surgery and provides results to your surgeon and oncologist. Other staff during your stay will include the person who admits you, the nurses who are with you prior and during surgery, and the nurses who are with you during post-operative care. Often, volunteers cover the waiting room so that updates can be given to friends and family. If you’ve indicated an interest in a visit, a chaplain and other supportive staff may stop by to see you.

Read everything you’re given about your procedure by the hospital. It doesn’t hurt to ask if there have been any recent changes in procedure that are not captured in the written materials. Reconfirm where and when you are supposed to arrive the day of surgery; inpatient and outpatient areas sometimes have separate admitting areas.

If you have specific requests about what goes on in the room during your surgery, make them known to your surgeon and the anesthesiologist. For example, some people feel strongly that conversations are absorbed by the patient, even while under anesthesia.
You can ask your surgeon and anesthesiologist to assure that only positive things are said, such as “it is going very well.” If you encounter a caregiver who scoffs at a such a simple, humane request, ask another member of your surgery team to act as your supporter during surgery.

I have personally found that using a guided imagery tape prior to a procedure (one that reinforced concepts like “minimal bleeding” and “awakening feeling good with my stomach calm and settled”) was very helpful. I used Health Journeys: For People Undergoing Surgery, an audio book by Belleruth Naparstek, which turned out to be one of the best tools in my kit. (See Interactive Guided Imagery in the Autumn 2006 issue of Avenues.)

Lastly, it is standard for nursing staff to be constantly present during the pre-op and post-op phases of your care, monitoring your vital signs and seeing to your comfort and safety.

The media does a fine job of frightening would-be patients, but remember that the horror stories are statistically rare. That being said, it does make sense to be alert and to have someone go with you to the hospital so that any situation that causes you anxiety can be addressed and clarified.

Patient safety systems have been the intense focus of attention in hospitals for the past several years. You will notice that hospital staff will ask you your name and check on other pertinent information at each step of your hospital experience to assure they are treating the right patient for the right procedure. To avoid medication errors, staff double check with each other, so you may hear them working through your medication regimen out loud.

Another welcome change is that most hospitals have developed service standards that instruct workers to introduce themselves, inquire if you have any questions, and make you as comfortable as possible. Ask for your caregiver’s name if he or she doesn’t immediately tell you. It will lower your anxiety to feel connected with that person by name.

Always ask if you are concerned about something you heard or saw – or didn’t. Some people are afraid of “bothering” the staff or being concerned that some form of retribution will take place. People who are firm but polite about their requests will have their questions taken seriously and answered promptly. The more you participate and ask to be informed, the more you will be a partner in your care.

Many people fear being left in isolation and in pain. Your nurse establishes contact with you at the beginning of each shift (typically, mornings are 7a to 3p, evening are 3p to 11p, and the night shift goes from 11p to 7a the following morning). He or she will also check on you periodically and you have access to a call button if needed. The nurses know this is a vulnerable time for you, so let them know if you have any particular concerns, such as not getting pain medication on time.

All hospital units have a nursing manager, assistant nurse manager, or charge nurse available if you have some problem with the room or the staff caring for you. During nights, there is also a nursing supervisor in the facility whose role is to help resolve any issues that can’t be taken care of through your regular staff.

While you can let your physician or his or her office know about any concerns, it is important to note that, in most situations, your physician is independent from the hospital. For this reason, it is best to deal directly with the hospital leadership for any issues regarding hospital care. For compliments and complaints, you can address your concerns to the nurse manager of the unit and, if appropriate, the administration of the hospital.

Since most of us are not medical experts, we may think of mistakes as only occurring on the caregiver side of the equation. But patients make mistakes, too. Some common examples include:

» Being passive. Study after study has shown that engaged patients have better results overall than any other category of patient.
» Being hostile and suspicious in your approach to caregivers and the hospital experience. The people caring for you mostly got into this field to be of service. Hostility and suspicion make it hard to establish a positive relationship. An attitude of cooperation and trust elicits the same from your caregivers.
» Not complying with your treatment plan. If you’ve asked questions and fully understand what your physician wants you to do and why, commit to and follow the plan. If you don’t agree with something your physician is recommending or are uneasy about a particular medication, bring that issue out into the open. If necessary, politely ask for a second opinion. For example, my post-treatment medication was somewhat open for debate, so I spoke with four different experts (it turned out the best choice was what my oncologist recommended initially).
» Being overly persistent or disorganized about your needs. Like hostility, persistence that wears your caregivers down will result in a strained environment. Similarly, being disorganized and calling repeatedly rather than grouping your questions to busy caregivers is very disrespectful of their time. If you really need something and are not getting it, move up the chain of command (as described earlier in this article). Don’t badger the caregiver at your bedside as he or she may be unable, due to policies and procedures, to provide the help you’re seeking.

Just as it is not wise to believe everything you find about your diagnosis on the internet, be wary of hospital ratings. The research design on which this kind of information is gathered is often flawed. Your physician is often the best source to consult about the hospital.

If you encounter disturbing information, get it clarified. Most hospitals have a community relations department whose professional staff can give you background on the publications where hospitals are ranked so you can select the most accurate to review.

Volumes could be written on this topic. Basic advice is to read everything that comes to you carefully (or ask a friend or partner to do so) to be sure you are being charged correctly. If you have a question, check to see if there is a web-based resource to research your questions or call the customer service number of your insurer. Charges can and do appear on your bill erroneously, and the bills themselves are often incredibly complex, making it difficult to differentiate the provider’s original billing, your share, and what costs are covered.

Your bill may reflect a charge for services at a price that astonishes you and which you will most likely not pay because of the discounted rates that insurers negotiate with physicians and hospitals. If you are not insured or have a plan with a high deductible, get in touch with the hospital or physician to see what kind of payment plan can be arranged.

In the end, we are very fortunate to have access to the level of care now available to us as cancer patients. As with most experiences, with a little preparation, an inpatient or outpatient visit can be the healing event you need. Remember to have someone with you along the way and to treat the staff caring for you as assets in advancing your return to health.

For more than twenty-five years, Sandra Boeschen has been a hospital administrator and health care consultant to medical centers. In early 2006, she was also a breast cancer patient. She can be reached through her website:

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We asked the author, Sandra Boeschen, whether she took her own advice when she was a patient. She writes, “yes and no.”

No: Initially, I went to the appointment with the surgeon alone. Fortunately, I had told my friend in a clinical management position at the facility, and she simply showed up. I was very fortunate that she did because I was clearly not in a frame of mind to make decisions on my own. Suffice it to say that she helped me see that a lumpectomy might be a better decision than a full mastectomy simply because I wanted to skip six weeks of radiation therapy.

Yes: My nurse manager friend and my husband became my team of advocates and helped all along the way by going with me to appointments (invited by the caregivers) and giving me perspective on practices to allow the healing process to go well and rapidly. Once I got over the initial shock of the diagnosis, I approached the whole experience with timely questions, but also with a strong sense of cooperation and trust. I really felt my caregivers had my best interest in mind and that they were highly competent in their areas of expertise. My job was to help them succeed by being fully present to my role as a willing learner and practitioner of self-care. Another friend, a breast cancer survivor and volunteer navigator, helped immensely with resources and the wisdom of someone who’s been through it.

Emphatic Yes: Despite my tendency to want to be in control, the people around me helped me accept my diagnosis and treatment as a time to be open to help, to ask for things, and to accept with gratitude that which was given. There are such highly skilled and caring people called to healthcare and I was motivated to stay open to what they had to give, to weigh options, and to make informed decisions.

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We asked a patient advocate at a major hospital about her own experiences and the experiences of her patients.

Years ago, I had a lump removed from my breast. It was almost certainly benign, but I was still worried and the surgical process was arduous for me. When I awoke in recovery, a nurse came to my bed and asked me if there was anything I needed. Still groggy, and apparently beyond self-censorship, I said, “I need a hug.” The nurse smiled and gently put her arms around me and hugged me. Then, she called over the other nurse in the room, and told her that I needed a hug. Again, a woman I had never seen before gave me a warm and gentle hug. It happened so easily and it felt so wonderful. I don’t remember anything else about my time in recovery, but somehow I had asked for and been graciously given something that made a huge difference in my experience. The following are a few things that have worked for me and others to help make the best a hospital experience.

Bring a favorite robe, sturdy slippers that you love, or a teddy bear. Within whatever dietary restrictions that your doctor advises, arrange for someone to bring you food that you really enjoy. After surgery, when I could eat again, a fruit smoothie tasted better than anything on my hospital tray. And the kindness of my husband in bringing it to me was another kind of sweetness that I treasured.

Sometimes you need an advocate to take over when you are too groggy, too impaired, or too focused to take care of certain things for yourself. I visited a woman after her breast surgery and commented on what a lovely view she had from her private room. She explained that she had been in a double room after her surgery and that her roommate had a very rough night, with multiple family visits and pain control problems. In the middle of the night, the husband of the woman relating the story to me had gone out to the nursing desk to advocate for her and she was moved to a quiet room where she could sleep and recuperate. Pick someone who can stay calm, communicate effectively, and pursue what you need without alienating the hard-working people who are caring for you.

Later, when I was diagnosed with breast cancer, I asked for recommendations for a surgeon. I asked my stepson who worked in the ER, I asked my OB-GYN’s nurse practitioner, and I asked my GP. They all gave me the same name. So there I was, in the little cloth gown, waiting on the paper-covered exam table. She walked in carrying my chart and asked how I was. When my reply squeaked out, she asked if I had a cold. “No,” I said, “I’m scared spitless.” She quickly set aside the chart, came up to me, put her arms around me and said, emphatically, “I can FIX this.” I was hers from that moment, and my trust, so quickly and instinctively given, proved completely appropriate. Hospital staffs are busy. They have multiple responsibilities and may be at the end of a long shift. But underneath those details lies the truth that virtually every one of them originally went into healthcare with the intention of making a positive difference in your life. Sometimes your authentic humanity can reach through those preoccupations and connect with their original idealism. Not only will you benefit from their caring, but they will feel better, too. This kind of contact in the middle of a busy day is a gift to both.

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