When friend or relative is in an accident and lands in the hospital…what do you do?
Your first impulse may be to buy flowers, visit the patient, call friends and let them know what has happened –so that they can visit too.
“Block that impulse!” says Lisa Lindell, a reader and author of 108 Days, the harrowing story of what happened to her husband, Curtis, after he suffered second and third degree burns over 35 percent of his body in a work-related accident.
Curtis would spend 108 days in the hospital, and Lisa details the predictable but completely unacceptable chaos that followed: a lack of communication among doctors, dangerous errors, Mean Nurses, infections, battles with hospital administrators—all at one of the finest burn units West of the Mississippi. Unfortunately, this won’t come as a surprise to many readers. In too many cases, hospitals don’t have enough nurses. Doctors who are called in to “consult” don’t consult with each other. The lack of electronic medical records leads to mistakes.
But Lisa also tells a second, riveting story about those 108 days which
focuses on how her husband’s relatives responded to the tragedy. “The
Lindells poured into the state—by the truckload.” They want to see
“the burned man.”
The first person to arrive is a woman named Bertha. Lisa has never seen
her, and has never heard Curtis mention her, but she says she is his
cousin. She arrives 90 seconds after visiting hours begin on Day 1.
Then she begins to pray, “laying hands on Curtis—putting her hands all
over him.” (Remember, he has been so badly burned over much of his body
that he has shed his skin. One can only imagine how painful this is.)
When Bertha finally leaves 4 hours later, Curtis is worn out and “out
cold.” Lisa has not yet had a moment alone with him.
Then the invasion begins. “All week-end long there is a constant stream
of Curtis’ family.” They ignore the rule that only two visitors are
allowed in the room: “A hospital employee comes in and says something
about the two-person limit. Nobody moves. Nobody! She gets a little
firmer about it so I say ‘I’ll leave.’”
This happens repeatedly. Lindells pile up in the waiting room and
demand to see Curtis. The nurse comes to his room and tells Lisa she
must leave so that his visitors can see him. Curtis keeps asking Lisa:
“Why are you leaving me?” She explains about the two-person rule. She
knows he loves his family and doesn’t want to complain about them.
During Curtis’ first weeks in the hospital there are times when five or
six Lindells crowd into the room. They bring children. They never call
to say that they are coming; they simply show up. They expect to be
waited on.
They do little to help. When Lisa tries to get back into the room she
has to say ‘excuse me,’ ‘oops’ ‘sorry, pardon me’ just to get to her
husband, “They are all standing around talking and praying,” she
reports. “I guess not a one of them can pick up a blanket. Blind as
bats, they can’t tell that the netting on his face is stretched too
tight across his nose. Snip that tight thread! His gown is twisted
uncomfortably around his neck His foot has popped out from under the
blanket. He needs another pillow under his arm. Can’t they see? They
are all useless and in the way. This man is badly injured. Badly. He
needs all the help he can get. Why can’t they see that?”
Curtis tries hard to stay awake to entertain his guests. Lisa realizes
that he desperately needs to sleep. And he needs to eat more. (“Curtis
won’t eat,” Lisa explains, “because he has ‘company’ and thinks it’s
rude to eat in front of them.” She decides to make him a sandwich and
asks the omnipresent Bertha if she wants one too. Bertha says no. Lisa
goes to the hospital kitchen and makes three sandwiches anyway. “I
bring them back and sit next to Curtis and fix him all up and try to
get him to feed himself. He says, ‘I’ll eat later, I have company.’ I
invite Bertha to eat with us, thinking she might catch a ride on the
clue train, but she says, ‘No, thank you.’”
Meanwhile, Lisa is caring for her two children, taking them to school,
and going to her own job. (Under the Family Medical Leave Act she could
take three months leave of absence, but she wouldn’t get a paycheck.
Moreover, her employer needs her—as do her children and her husband.)
~~~~~~~~~~~~~
The Lindells seem particularly obtuse, but the fact is that when
someone is seriously ill, many people think that the best thing to do
is to visit the hospital. And typically, the patient is grateful—at
least at first.
He wakes up in a hospital, glad to be alive, glad to see people. Hey, I
have friends! People love me! He tries to be a good host.
But the truth is, when someone is seriously ill, what he or she most
needs is rest—and time to spend with a spouse, children, parents or a
very close friend. Seeing eight or ten people a day is exhausting.
Here is Lisa’s advice: “Before you go to the hospital, call the family
and ask if the patient is up to seeing visitors. Don’t just go to the
hospital.”
There are other things you can do to show your friendship. “Offer to
mow the lawn. Buy groceries; send a maid instead of flowers; baby-sit;
put gas in the car. People need to get real.
“I think our experience was extreme due to the sheer size of his
family,” Lisa adds. “But I bet everybody has the same problems. People
just don’t know what to do.”
At a certain point, he or she will be bored—so call and ask the
immediate family to let you know when ready—but don’t rush over.
Wow, Maggie, you sure nailed that. I would also add, families shoud think about sensible communication a phone or email chain, some way for the family to communicate with each other and get updates/work out schedules. Sombody can designate themselves the communicator. This is particulary important when you have a critical patient. It’s unrealistic to expect one person to be able to call dozens of people, and it’s unrealistic to expect doctor’s and nurses to respond to dozens of phone calls regarding the same patient, which they can’t and won’t do due to HIPAA, but people still call the nurses’ station. Please stop calling the nurses’ station.
First, DO NOT SEND FLOWERS. Burn units are especially stringent on keeping out flowers; the water in which those pretty flowers are sitting is apt to be thick with Pseudomonas aeruginosa, one of the nastier bacteria that likes to grow in burned tissue even more than in a vase.
I had an amazing experience the other day: I saw a nurse wearing a traditional cap. There have been studies comparing the bacterial loading on nurses’ caps and doctors’ ties, and the results of both frightened me. Please — if you are a healthcare professional coming near me, wear some nice fresh scrubs. Oh — and wash or sanitize your hands. On a few occasions, I gently suggested to a hospital employee that they could wash their hands before touching my friend, or they might want to reserve a bed before they tried to go through me.
Families also need to be aware that if the patient has given a durable power of attorney to a surrogate, don’t argue with the hospital unless the surrogate is doing something clearly dangerous. Either shut up, or get a lawyer. From my own experience, this is especially frustrating when the surrogate has medical background and the demanding family members don’t.
Offer religious comfort only if you are certain the practice is compatible with the patient’s own belief. Otherwise, just sincerely tell the patient that they are in your thoughts.
Apropos of religion, a great, great physician, Michael deBakey, died a couple of days ago, just short of his 100th birthday. I’ve been seeing tributes from colleagues on a professional list, and one was memorable:
“God wanted a consult — and got the best.”
There’s a lot of good advice and food for thought there. I would add, however, that lonely folks with no remaining family who receive no visitors at all probably have a different perspective.
Barry, Howard and Lisa-
Barry–
Of course, you are right. If you know an older person who has little or no remaining family–and there is no one to call to see if he/she is up to seeing visitors–it is kind to go to the hospital.
In a case like that, you just need to be sensitive to how the patient is feeling. Lisa reported that her husband’s employer’s wife was very, very good about visiting quite often –but staying just a very short time.
She made it clear she cared. Just driving to the hospital, parking, etc. is the big effort. But she didn’t “wear him out.”
Howard-
As usual, some very good real life stories. You’re right– most patients can’t do what you do. But it is a good model for doctors to think about how to organize information.
Lisa– Thanks–and thanks for the extra advice.
The point that people shouldn’t call the nurses’ station is a good one. They’re not allowed to tell you anything, and you’re just taking nurses away from patients.
Also, you shouldn’t barrage the spouse, parent or best friend with calls. As you say, set up a phone tree so that friends and relatives can communicate news without exhausting the primary source of information.
A patient without family might also be a patient with a cat that needs to be fed, etc. I don’t think anybody’s saying don’t visit patients, patients need an advocate, and they need the comfort of their loved ones, but the point is, it’s work and the knee-jerk reaction most people have when word gets out Uncle Joe had to go to the hospital…is to go to the hospital. Maybe stop and think about that for a minute first and when you do go to “visit” take a magazine or burger or something and don’t stay long.
True burn units don’t allow plants, flowers, etc for infection control. *ahem* This one in particular also didn’t allow overnight “visitors” (that was my official title during this ordeal, I was a visitor ha ha hahahahaha) ummmm, yea, they didn’t allow overnight visitors for the same reason, overnight “guests” would contaminate the entire ward and subject all patients to infections. I’m serious, that’s what I was told is the reason I had to leave my husband alone every single night.
Now, if you witnessed what I witnessed, you would see how asanine this is and I’ve yet to uncover any logic to this “overnight guests cause infections” logic.
It was a parade of medical staff repeatedly and blatently ignoring basic infection control procedures that caused my husband, and other burn patients, to acquire life threatening infections. But, that’s a post for another time.
OK, ready? Check at hospital of the nature of friend’s injury. Check, who is there representing the immediate welfare of patient. If none, find a patient advocate, who is closely known to patient.
Check home for family’s status and knowledge of patient’s injury. Check, confirm and verify a list of drugs that patient is currently taking, incl. patent and OTC medications. Post and advertise any patient’s allergies. Post med data to docs at hospital. Ask to allow you to relieve any family members, who are posted with the patient at the hospital -24/7 in first 72 hours. Make some signs bearing patient’s full name, family doc, nearest relatives on duty, and phone numbers. Make sign requiring all med pros to ID themselves to patient and family. Verify any all drugs or
injections on med protocol in hospital daily. Ascertain patient’s treatment plan with attending, in writing if possible. Ask for any proxy info. Keep patient warm and comfortable. Ask for proposed discharge date and for written discharge instructions. Say a quick prayer. Bill Wright, justapatient
Bill–
Welcome–and thanks for your comment.
Some good ideas in there, though I would caution that you probably can’t call a hospital and get information on the nature of the injury or whether or not the patient has a patient advocate because of privacy laws.
If you go to the hospital, however, you could find out whether the patient is alone, or has an advocate.
And you might discover that the patient has only an elderly spouse serving as advoate–who migiht be very grateful to have someone who has his/her phone number (and would call immediately in case of emergency) to spell him/her.
I agree with previous posters that sometimes “it depends”. An older person with little family can really benefit from someone showing up. Oftentimes their friends are unable to get to the hospital and aren’t very enthusiastic about getting a face full of what they could have been facing!
My MIL, who had suffered a stroke and was not very cognizant, was hospitalized for awhile.
The hospital was not attentive if it wasn’t a doctor-procedure oriented activity! They were quite happy to take her for this and that test or pump her full of drugs, but otherwise they were lacking in basic care.
They say that in third world countries the family must come to the hospital to provide care during the illness. Frankly, if your relative isn’t verbal it’s a good idea right here in the US of A!
She went almost 3 weeks without a full-body shower or hair washing. I was so glad to get her back to her nursing home where they attended to her in a decent way!
You go into hospitals with their birthing and breast centers, their wellness departments, the posters with the smiling/caring staff and patients, but upstairs where the really sick old people are there is nothing nice about them – vent ended!
One useful thing if you are an angel to visit an older confused-bedridden person is to leave your business or calling card. Then we knew someone had been there. She very much enjoyed listening to you read the newspaper. That’s something that requires very little preparation and can make conversation with someone who is hard to engage.
Ginger B–
You wrote:
“You go into hospitals with their birthing and breast centers, their wellness departments, the posters with the smiling/caring staff and patients, but upstairs where the really sick old people are there is nothing nice about them”
I’m afraid that you’re entirely right.
And when older people are very, very sick, often friends and neighbors don’t want to come, saying “I just bear to see him that way.”
They are, as you suggest, saying “I’m afraid that will happen to me.”
So an elderly person is left alone with an elderly spouse and an out-of-town child.
These are situtations where spouses would love some help in watching over the patient.
But when the patient is younger–as in Lisa’s case–there can be way too many visitors.
I have intended to respond to so many of your excellent essays, Maggie. A friend was recently admitted to the hospital for overnight surgery and later my grandaughter was admitted with a very, very rare disease of sudden onset. Both of those admissions spurred upset as I watched the health care providers care for them. I decided to start to write about the experiences. Both hospitals were on the “best hospital” list in their respective cities and so what I saw amazed me even more. Because I was a nurse for years prior to being a physician, my eyes were trained to see all of the steps that were seriously missed during both of their complicated stays. Both had to have added treatment because of deficits in care during their hospitalizations. I witnessed the deficits and said nothing because my friend’s family and MY family’s feared that there would be SOME form of retribution to the patient if I spoke of the (obvious) problems. I was appalled and saddened and not at all surprised when the infections set in and the medication errors were recognized!! I did insist that I and my family stay with open eyes, night and day, at the bedside and in all procedures. In the end, I felt like the lady with the white gloves who checks the molding for dust. They were in disbelief and then started recording everything that went on. When they mentioned what I had relayed to them to their provider, the eyes cut over to me and they actually wrote down that there was a DIF involved. (Doctor in Family).
As I write this, I am ashamed of myself. I can tell you that I called the medical directors of BOTH hospitals to express my concern and outrage in a calm and professional voice. Both CMO’s seemed overwhelmed. As a matter of fact, they complained of OTHER calls they received and how they now have staff now to correct those kind of problems. I became their understanding buddy! Again, their reactions surprised me as much as the problems did. There may be some who doubt their own eyes as they read this. DON’T!! It is a sad truth and there is even more to tell.
Doctor in Family–
Welcome to the thread, and
thanks very much for your comment.
What you say echoes what so many other doctors have told me–they would never let a loved one stay in a hospital without a patient advocate (often the doctor himself guarding a spouse)
24/7.
Having been a nurse before you became an M.D. gives you a very special perspective on our problems.
I always say that good doctors understand, better than anyone, what is wrong with our health care system. They are there.
But I also say that if you want to know who the good doctors are, you should ask the nurses who see them at work in hospitals. (Though if they want to keep their jobs, most nurses cannot speak openly.)
The whole idea of nurses who have become doctors strikes me as a very interesting topic.
If you’d like to e-mail me about it, please contact me at mahar@tcf.org.
Thanks,
Maggie
Wow, Doctor in Family, wow… same sad tale, exactly the same. This has gotten to the point of ridiculous…everybody coming away from a hospital experience is reporting the same story. What are we going to do? We write about it and report it on blogs…what the heck are we going to do? This has been going on for far too long. I don’t know what to do anymore. This is very frustrating. BTW, DIF, when I met with hospital VIP’s more than a year after our experience the Chief Quality Officer said “What makes you think your experience would have been any different anywhere else?” Exactly the same.