Waking up in the morning to a blue-skyed Northern California is wonderful. Especially when there is almost nothing I have to do. Makes me gleefully and quietly happy.
This was quite the week. And far harder than I expected.
Imagine someone gets out of the hospital post-almost-dying and comes home. Early. Imagine no preparations have been made. No time to make any. Imagine that the only information you (the care-givers) receive is colored flyers about no salt and low fat and progressive walking, along with hand-scrawled doctors’ notations of medications. Imagine you are faced with a row of prescription vials, a walker, and a styrofoam chest of IV antibiotic hookups sitting on the antique dining room table.
Imagine that the only other information comes from the patient, who is weak, and his wife, who is exhausted.
Imagine the visiting nurse is not due until the next day.
It was all harder than I expected. I want to ask any doctors reading here, or anyone who knows a doctor, or works in a hospital, why, if the information technology exists to create a customized discharge plan for patients recovering from serious procedures, it didn’t happen. Was our experience an anomaly?
If you doctors, or you hospital administrators could arrange for everyone who leaves the hospital to have a plan including the following information, that would be very helpful. The plan should be typed. It should be readable. It should be simple. It should have all the information in one place. Please.
- A typed list of medications with instructions and risks. Handwriting is hard to read, and vials of pills that say, “Take as directed,” aren’t too useful. Cover everything. No fair including mysterious pills in packets along with the colored flyers. Also please tell us if aspirin or throat lozenges or over the counter stomach remedies are OK.
- A list of priorities for care. What matters more, no salt or low fat? How important is it that the patient carry out the breathing exercises on that colored flyer. How soon?
- A list of risks, in priority order. What do we need to watch out for? We know this is serious business and we don’t know what to do about it.
- A day in the life. How should his day go? Best to take all pills at once? Morning and night? Regular meal schedules? When will he need to meet again with doctors?
- What home changes ought to be made? Raising chairs, toilets? Building supports and hand grasps?
- A list of all the doctors involved and their nurses, and the liaisons, along with phone numbers. We will probably need to call you, and it makes us anxious to have multiple little business cards that might get lost.
- If home care is involved, when will they be coming and what will they be doing? We love the visiting nurses, once they arrive. But that first night is crazy.
Thanks in advance. Let me also say that the medical care received was extraordinary, and I didn’t talk to one person who was anything but kind, intelligent, competent, and eager to help. My stepfather feels better every day. It’s not the people, it’s something else that made this so difficult.
And to all of you who left kind words for me and my family here, more thanks. One thing I have to confess, though, before we return to style, to house furnishings, to careers and raptures and Privilege, is that I am not selfless by nature. Nor am I sweet by default. In fact, I’ve always been somewhat of a bull in a china shop. Prone to say what I think, even when others all around are resolutely avoiding exactly that. I learned High WASP growing up. I learned careful, square-jawed, corporate style over years of hard work. Wasn’t native. If it were native, I probably wouldn’t be writing here. I’m a bit like the immigrant, an observer in a country of precise behavior, taking notes and reporting to the homeland.
So I can’t take much credit for caring for my mother and stepfather. I love them but there’s nothing extraordinary in that. When you are the only sibling without employment or small children, it’s your job to step in. And you do it as best as possible, using all your capabilities and resources. I got my reward in being able to do a good job.
Have a lovely weekend. And thank you, again.
34 Responses
My thoughts are with you.
Nancy in NC
For some reason, I missed the three posts reporting on your step-father's surgery. I think your suggestions here are very well-thought out. I, too, have taken parents home from the hospital with scattered instructions – and those, not so clear. Verbal instructions get jumbled in all the unfamiliar processes involved in dismissal and eagerness to go home!
I wish you (and your mother & step-father) the best.
I'm glad to read that you stepfather is doing well.
Perhaps you should email the head of the hospital with your ideas about discharge information. Who knows they might change their patient release practices.
You are doing a wonderful job, this is so difficult. Your thoughts on how the hospitals can make the transition back home are great, it would make things easier simply because of the fear of doing the wrong thing.
Just take a day at a time. Wishing all of you the very best!
How frightening not to have specific instructions and details about the days to come at home. Goodness. Just know how relieved your mother was to have you with her. Now, get some needed rest. xoxo
Thanks everyone so much. Preppy 101, how did you know? I am spending the entire day doing nothing unless I want to do it. Avocados are involved. Also the sofa:).
As a family physician, I'll try to tackle this one.
There probably was a live human being who went over the paperwork with with your mother, stepfather or both. They were undoubtedly overwhelmed and nodded a lot. When asked if they had questions, they had none. You, the one person who needed to be at this meeting, weren't there.
Due to attempts to keep costs down, health care systems pretend to be 24/7/365 enterprises. They are not. In the "old days" – 25 years ago when I started practice – he would have stayed until Monday, the visiting nurse would have met them when they arrived home, and everything would have worked better.
he computerized paperwork: Exists mostly to justify billing requirements and medical-legal needs if there is a bad outcome and someone decides to sue. (See – we told him not to do that. It says so right here – the seventh check box down that no one over 40 can even see without reading glasses.) When one of my patients is discharged from a hospital other then my own, it takes me a long time to decipher where the patient is supposed to be clinically and what meds are prescribed and what follow up appointments have been made. I do this for a living!
Good hospitals do respond to constructive feedback – the suggestion to write or e-mail them is a good one.
On behalf of my colleagues, I'm sorry you had a difficult time with the discharge process. Sorry, but not surprised.
i am so thankful your step-father is doing well. my grandfather had a series of strokes this past week and my father is asking the same questions you are. you and your family are in my prayers. truly, get some rest :)
Doc P, thanks for weighing in. I hoped you might, and suspect it happened just as you describe. Dani, my best wishes for your grandfather.
I hear you. The medical profession is not what it used to be.
I feel for you, have been there with scores of conflicting medications to sift through and no instructions for all the hair-raising issues that have now arisen. You sound like you are doing great though and I'm sending you good thoughts!
xo Mary Jo
Very good column and the doc added to it. Been in your situation several times with family members and just crazy exhausted by the time you get them home. Then the work begins because families are either small and/or scattered so the care cannot be divided up. Example: Do you leave the patient and drive off to get the prescriptions filled and leave the person alone? We understand what you are going through.
My mother is chronically ill and receives absolutely no help from the doctors about practical matters of daily coping. The patient and family are absolutely on their own. I totally feel for what you went through and agree that things need to change!
The thing that bothers me, other than our own personal stress, is actually how great the doctors are and how little they seem to be supported by the system.
Wishing you and your family well. Family doesn't always step in, so blessings to you!
Goodness. That sounds difficult and scary! How to anticipate what needs to be done, without deep medical knowledge? Your suggestions are insightful, and would surely help many families. I hope they find a receptive audience!
glad to hear your stepfather is now home and doing better. when my grandfather got sick a few years back, my mom went through something similar. he'd receive great care, but he'd come home with a whole set of new meds and other instructions that were not shared with my mother – the caregiver. she had to be on top of everything, second-guessing nurses and doctors and calling the pharmacist to triple-check everything. it was just ridiculous.
ps. just the fact that you believe it's your job to step in and take care of your stepfather shows what kind of person you are.
I do have a faint idea what you have gone through. The four last years of my mother´s life were quite a mess too. I was the only sibling and had to decide what to do, when the situation at her home got worse, although we here have a very flexible system, straight translated something like- home hospital care. A nurse is able to called several times a day to see the patient, but the visits are short, and the patient is left some 23 hrs on her own. Not everyone of the elders remember what instructions were given, so I fully understand the importance of the first paragraph the `doc´wrote. Luckily your matters have now turned out better. Luckily you have sisters/brothers ( in reserve ). You certainly have done your share. Now indeed, it is the time for you to take care of yourself !
You were provided with rafts of material but little useful info. Harrowing, because people are sent home less-fully-recovered than in the past. (But you don't want to stay in a hospital either.) Add to that a condition with a very detailed post-op protocol and the outcome is confusion and anxiety. Just imagine if you had not been there.
Of course you can take credit. You would be amazed at how many people do not fulfill what most normal people consider familial obligations. You are allowed to take credit for doing something hard, even though it is the normal thing to do when you love your family.
It isn't just older folks who have trouble remembering. It is an overwhelming amount of new information, given in an emotionally highly charged setting. Not to mention, at least for a post op open heart patient, a very disrupted physiology during surgery that affects brain function for a while. Add some pain medicine and sedating beta blockers and it is amazing if anyone remembers anything they were told on the way out the door. We also know that "adult learners" have different learning styles and preferences. Some people will love all the printed pamphlets. Others do better with spreadsheets or flow charts. Unfortunately, the discharge paperwork is "one size fits all" patients but different from hospital to hospital.
If I had not been there my folks would have had to rely on the kindness of friends. Do not know how that would have played out. You are right. Worrisome. Goldigger thanks for the vote of confidence. And DocP, thank you so much for weighing in with the expert perspective on all this.
Lisa, I admire how you are so steady and take everything in stride. You came home and wrote this incredibly helpful post. I'm certain you'll send something similar to the hospital.
It is people like you effect change. People like me, on the other hand, end up paralyzed by the enormity of the issues and the emotions generated by the inadequacies of the system. I am glad there are those like you. We need you. Thank you.
I hope you had a restful weekend, dear.
xoxo,
-maria
((((LPC)))) I am so sorry about your step dads health. Since I have been absent from the blog world I had no idea. And now you have quite a task set before you. I will keep you in my thoughts as I am sure this will take some adjusting for you. Bless you for doing this. I do hope that this time with them will be a time of joy and peace.
I hope you send these idea's into the human service department from where he was released. I think what you voiced here is how most people feel but don't voice. Unless people speak up about such things they can't make changes.
Just so you know, none of us are selfless by nature. XX Lori
PS Your words of encouragement and care of recent have meant much to me. Thank you.
I'm just going to bite my tongue here about how "there was a real person there" explaining everything because it couldn't be that the patients, after having the important stuff hastily "explained" to them – in a manner that I'm sure made them feel extraordinarily stupid for not knowing all of this beforehand – wouldn't know what questions to aks, and say that despite not being "selfless by nature" you are a marvelous daughter and person for stepping in the way you did.
I hope your stepfather continues to heal well and rapidly.
(((Lisa)))
Good God I am sorry. That is awful and scary. Sounds like you really did make the best of the situation though. xo
keeping you in my thoughts and prayers, you are so good to be there to be of assistance in more ways than one for your family. make sure to take a little time for yourself.
xoox
kHm
The ball got dropped here big time. Thank goodness they had you there to piece things together for them. And whether you're selfless by nature or not, the point is you were THERE. Showing up is the whole point.
Breathing exercises are very important. Doing them too often is better than not doing them often enough. It will also help you catch if they start to build up fluid in their lungs. After my Mom's surgery they kept her for almost 3 weeks. After they sent her home from the hospital she started noticing she wasn't able to get that little float to stay up as high as she had been able to get it before and was having more trouble breathing when she was lying down. She didn't think it was anything serious but my sister made them take her right back to the heart hospital where they found about 2 qts of water in her lungs.
We were lucky that my sister is a RN and had just spent almost 2 years working on the heart floor of another hospital so she knew what the protocal was and could explain it in terms my Dad could understand.
I'm glad you were able to be there to help them out. It's a stressful time and I am sure they both appreciated your help.
What happened to the Discharge Plan? The med ctr. where I worked for years had Discharge Planners who met with the family. Maybe they don't do that anymore, or maybe as you said, they did it but not when you were present.
Darla
That list is excellent, LPC. Do you mind if I steal it? My parents and ILs are all ~80, so I'm sure it will come in handy.
Your mom and stepdad probably don't mind if you take some credit ;-)
Utterly frightening. Imagine if you had not been able to come and help your dear mother! Thank goodness it all turned out and that he is on the mend.
Lovely images of clocks and furnishings at the Santa Barbara home. It looks spacious, light and airy.
We're so pleased your stepfather is back and and so disappointed you had to experience the flaws in the system first-hand. No one does it on purpose, there is no mean-genie of a medical kind floating in the atmosphere, it. just. happens. And it is the worst, absolutely the worst. Having been there with my father under almost identical circumstances (different disease), I can only say thank god you were there to help out.
"As directed" doesn't work unless initial direction is provided, be it to the patient or the caregiver(s). (Gee, I am positively sounding like "Bitter, party of one.")
Sending you a smile,
tp
The discharge plan was given, sort of, to my mom and stepfather. They couldn't remember. My stepfather pushed for early release. It was a host of factors, and we're just lucky. Thank you all again for chiming in and if this is useful to anyone at all I will be so glad.
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