Making the Best of a Hospital Experience
BY SANDRA BOESCHEN
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.
WHY IS THE "SYSTEM" SO DIFFICULT?
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.
KNOW WHAT TO EXPECT
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.
ADVOCATES, NAVIGATORS, & EDUCATORS
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.
TAKE A
PARTNER WITH YOU
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.
WRITTEN INFORMATION
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.
PREPARATION FOR YOUR PROCEDURE
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.
SURGERY
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.
PATIENT SAFETY & SERVICE
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.
COMPLAINTS & CONCERNS
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.
COMMON MISTAKES
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.
WEB-BASED HOSPITAL RATINGS
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.
INSURANCE
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.
FINAL THOUGHTS
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:
www.SandraBoeschen.com
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MAKE IT A HEALING EXPERIENCE
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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ANONYMOUS ADVICE FROM A PATIENT ADVOCATE PERSONAL EXPERIENCE
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.
PAMPER AND NURTURE YOURSELF
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.
HAVE AN ADVOCATE
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.
MAKE CONTACT, EARLY AND OFTEN
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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