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Parent Cafe
701

<p>Wow. I thought it was just us. My husband was in another very highly regarded medical center over the holiday. He had surgery on the Tuesday before Thanksgiving, because his doctor was worried about a Friday surgery, and the support staff at the hospital over the holiday weekend. Really? The quality at a highly regarded hospital would plumet over a holiday weekend? But yes, it does.</p>

<p>On Thursday (Thanksgiving) pages to the residents from nurses were never responded to. On Friday, after the surgery department released my husband to the onocology department he waited two hours for transport, and finally picked up all his stuff and carried it on foot to the other wing of the hospital. Despite walking through three wards, it wasn’t until he got to onocology that the nurses tried to help him. (And the onocology nurses were distraught that he had to walk that far, but not surprised.) </p>

<p>At this hospital the doctors and onocology nurses are top notch. But the support staff: transport, kitchen, cleaning staff, are incredibly mediocre. A hospital stay means I go in and wipe down the blood on the wall left in the room from the patient before, bring my husband food at least once a day, and if I can be there, move him when he moves rooms. (His last stay he changed rooms 5 times in 10 days because rooms were so impacted they had to shuffle folks around.) Unfortunately, we also have children at home, so I can’t be there 24 hours a day. And I feel guilty about that.</p>

702

<p>LTS:
I really love how you find outlets for your energy. In the midst of the chaos, you choose to wrap your mind around how to fix the chaos!! In an attempt to help you, my questions would be centered around “who owns the hospital? who is managing the hospital? Is this management local or are they running it from away?” </p>

<p>Because to me, it sounds like the staff has lost their ownership of the day to day. When you are not in charge it is easier to default to whatever happens. Overtime, the staff has “learned” that they cannot affect the outcome
so they really aren’t trying. Owning management has introduced all these “processes” that may even be best of class processes
but, they take out independent thought and ownership and so you end up with people waiting for medications to arrive on a single transport system. I had a similiar but different experience once. Took my son to the emergency room for an ear infection that was a sudden, unexpected impediment to a very big day for him
knowing that a bit of amoxycillin (sp?) would allow him to enjoy his big day
we had to wait for about an hour for the dose to show up in a pneumatic tube system. </p>

<p>Not unlike the new Niketown stores
where you ask to try on shoes
and they are sent up to the retail floors from some remote warehouse
 via a tube system. Total waste of time and effort
I am sure it reduces their sales volumes/revenues but, someone, somewhere, told mgmt they couldn’t afford to keep the shoes close to the shoppers!! </p>

<p>Anyway, I agree with you that I too have what I call “batch” jobs running in the back of my head all the time trying to resolve things that bother me. Whether it is politics, local school challenges, worries about a neighbor
 I think what is so troubling about what you experienced is the ability of the patient to handle the chaos. What if you had a migrane
what if you were bleeding
what if you were violently sick to your stomach? </p>

<p>To me, corporate America has sucked all the excess out of American entities and there are no margins to handle exceptions or emergencies etc. </p>

<p>Back to you
 I hope you have a good few weeks of travel and meetings and perhaps you will have an epihany that will blossom into a fix for some of what you saw
 take care
</p>

703

<p>Marite, how long ago were your Christmas week treatments? (I am under the impression that your health problems were in the past; I hope you are not dealing with anything now.) If they were years ago, then the differences between your experience and those of LTS and UCDAlum could be due to deterioration of the health care delivery system since then.</p>

<p>LTS, you continue to astound me. If I remember correctly, you do not have a college degree and feel the lack deeply. Whether or not you have a formal degree, you have an extremely well-trained, incisive, analytical mind that would put to shame the great majority of the degree-holders in this country. This has long been evident in your posts on various topics, and in your accomplishments, but it is even more obvious in your response to your current crisis. You are always able to transcend your own problems to see the larger picture, and you have the kind of mind that cannot be turned off, that is always observing, analyzing, searching for solutions. I have no doubt that if you turn your considerable abilities on the mess that we now call our health-care system, we will all be the beneficiaries. So if you are searching for a reason that you have been, so unfairly, hit with this disease, it could be that you are needed to take this on after you’ve conquered the cancer, either as a new career or as an avocation. I also remember your posts on the day of your daughter’s graduation, when you felt bereft and in need of a new challenge. Could this be it?</p>

<p>UCDAlum, you write so eloquently about the constant battle you and your husband are waging against his disease. It is, as Booklady said, helpful to all of us to learn about the “little” challenges that come along with major disease treatment. I am so sorry that you are dealing with this, and in particular that you feel torn between obligations to your children and the unfortunate need to make sure that your husband’s situation is what it should be. Patients’ relatives should not have to be cleaning rooms and bringing in food, yet I have heard similar stories from other people, too.</p>

704

<p>LTS, </p>

<p>In my opinion “Why?” and “Why ME?” are essential questions that all of us should ask ourselves regularly. Sometimes these questions will knock us to our knees in gratitude
 Sometimes they will be painful if they necessitate that we face our flaws. Sometimes there will be bafflement and despair, when random, unfair things hit us, like your cancer hit you, or when we witness out-and-out wrongs that seem insoluble. But to me these are the very basic questions of being alive and aware. </p>

<p>Personally I’m not an “everything happens for a reason” type; I think there is no good reason for all kinds of rotten things to happen to people, like war or illness. But the “Whys?” are still important, because they are guiding you, as you find your own meaning and purpose out of your experiences. And they really can’t be turned off unless you deaden yourself completely.</p>

<p>NYmomof2 said it very very well, about your “never-resting mind” (to quote my favorite poet, Wallace Stevens). Your mind sparkles.</p>

<p>I also agree with the Epistrophy link, re: writing being very healing. </p>

<p>I have had a much milder personal crisis over the last year or two and have been writing a great deal
 letters, journal entries, small essays and most recently a novel. </p>

<p>It is EXACTLY that I can comb over my words and get them precisely right and nail down the subtle, elusive feelings-- this helps me to move through them, or at least KNOW what I am feeling so I can ponder it. It’s a bit like peeling an onion: you get to the deeper and deeper layers of the experience, and find surprising things. </p>

<p>For me, reading has also been extremely healing. I have been reading classic works and enjoying the way brilliant minds grapple with the essential questions. Particularly the ancients, like Plato & Cicero; it is actually comforting to know that some of our struggles to comprehend are perennial human struggles-- in a way they define being human. Not that it makes them any easier but at least you can feel more comfortable with not having immediate answers to the “Why?” or the “Why Me?” and realize you are in good company as you wrestle with these questions.</p>

705

<p>Thank you for that very thoughtful post, SBmom. It’s helpful to me to read what thoughtful people are able to learn. I have to admit that I don’t think these days, just react to deadlines and crises and try to keep my head above water. </p>

<p>Like you, I don’t buy the “everything happens for a reason” philosophy, but I also believe that it is healthy to search for a purpose when random bad events occur, to try to bring order to one’s experience, and to bring something good out of it.</p>

706

<p>

Not many people would be viewing the challenge you’re facing as a sign from God to direct your attention to a health care mess. You are inspiring, that’s for sure.</p>

<p>I earned a nursing degree while I was home with my first child. After a successful business career, the illogical workings of a modern hospital were absolutely maddening. Poorly staffed, with poor utilization of staff (i.e., a RN retrieving a med while other patient’s call lights are ignored,) and a general failure to follow the mission drove me away. It was too depressing to see a dozen nurses’ aides from far flung floors gathered to place lottery ticket orders, football pools, and Chinese food orders every night while patients were unattended. The simplest solutions (like have a physician who repeatedly fails to renew necessary meds sanctioned in some way) were never implemented. Sadly, hospitals are not about the patients. Keep fighting for your best care & we’ll all pray for you.</p>

707

<p>Certainly a great book to read that can be inspirational
especially about health care is the Tracy Kidder book on Paul Farmer called Mountains Beyond Mountains
 this is a man who has made a TREMENDOUS difference in the world thru his understanding and actions. I find it to be a very beneficial story to have in my bag of tricks when I am overwhelmed. It is all relative, yes? There are moments in the story where one realizes that the average person would have given up
over and over
and he never does. I don’t think he has much of a personal life
but that was never his priority.</p>

708

<p>UCDAlum82, I have been thinking of you; I am sending every possible positive thought and prayer your way. You’re spot on re the hospital environment; my daughter had to do a LOT of work while I was a patient, including managing my meals and bringing in edible food, following up on medicines, rearranging the furniture in the room, keeping the room clean, helping keep my bed made properly and comfortable, keeping track of which doctors were scheduled to see me and when, and their roles; keeping track of all the staff, collecting business cards from the visitors from the various departments and even making sure I had adequate materials to bathe and that my bathroom was clean, etc. She did simply an incredible amount of work - forget “visiting”; this was real, serious work; she did a lot of running back and forth and conveying messages and information between the nurse’s station and my room, etc., on top of all the other people she had to engage, and, it made me feel just terrible, frightened, actually, for people who end up in the hospital and who do not have anyone to help them. I seriously do not know what people do who are all alone. We did have one hilarious moment - in the terrible, horrible confusion that made up those days, in her rush to bring me clean clothing and especially underwear, instead of packing something “normal” out of my dresser drawer, she grabbed lace thong underwear. What in heaven or hell were you thinking, I asked her
we had a quite a laugh over that - the only time we laughed that entire week I think - anyway, but, it made me consider, what happens if there is no one to even bring a patient clean clothing? And there are people suffering - when I was there Saturday, one room in particular was just filthy - with dirty food trays and linens etc. littering the floor - just the way my room would have looked IF my daughter had not maintained it - my heart breaks for the occupant of that room. </p>

<p>And this is a very nice, well funded private hospital - it’s probably better I don’t think too much about this any more today; this is very upsetting, heartbreaking, to me. I almost cannot bear it. </p>

<p>More later
</p>

709

<p>NYmom: That was six years ago. It is a top-notch hospital. I do live in an area with top-notch hospitals.</p>

710

<p>I echo maineparent’s recommendation - Mountains Beyond Mountains is an amazing book about an exceptional man. Paul Farmer came from an extremely disadvantaged environment - I seem to remember that the family lived in a car at one point - but he managed to become one of the great thinkers of our time. He does not accept the conventional wisdom about anything. He has written at least one book on health care policy that I have been meaning to read. </p>

<p>In terms of his personal life, he works for part of the year at Brigham and Women’s Hospital in Boston, and spends the rest in Haiti. He lives like a monk in a single room and donates his salary, beyond what is needed for minimal living expenses, to his foundation. I think he has received a MacArthur award. He is married to a woman and they have a daughter. I believe that his wife and daughter live in France, and he sees them only rarely.</p>

711

<p>These days hospitals often take for granted that family members are going to be sticking around, something that was not the case years ago. I know particularly for pediatric wards, this is the case. When our son was in the hospital, there were very few children who did not have someone there 24/7 looking after them, in contrast to when I was a child when visiting hours were strictly observed and most kids were entrusted to a hospital without parental oversight. But because of this, the hospitals compensate and cut staff and services as they become unnecessary. When our son, my brother, my father were hospitalized, I stayed with them, and I was not the only family member with a patient. We gladly did a lot of things that I think staff would have ordinarily done, and they knew this.</p>

712

<p>My goodness don’t hospitals have “candy stripers” any more? That’s a job I did back when I was 15, 16
 You are basically a “go fer” for whomever needs you; if there aren’t jobs to do you visit with people who need company
 It was a volunteer thing, a community service thing.</p>

<p>Does this still exist as a job or is there some liability insurance thing that nixed it? Because it is a perfect solution for getting rid of food trays etc.</p>

713

<p>SBmom, maybe all those candystripers are now founding clubs & non-profits to impress anyone reading their college applications. No time for real service, I guess.</p>

714

<p>Although some hospitals do have candy stripers and other volunteers, they do not tend to do the hands on work. Perhaps it is a liability issue. I know that in all of the hospitals where I spent time, the volunteers tended to bring around snack, toy carts. In children’s hospital, they may assist Child LIfe for play. Whether it is a liability issue or a union issue, I don’t know. </p>

<p>I was a candy striper, and made beds, brought bed pans, took pulse, and helped with what was considered non skilled care. Now there are LPs who do this or the RNs, no volunteers. Housekeeping and other staff take care of the non medical work.</p>

715

<p>I note that the business day has ended, and that there has been no response to the offer of assistance and support we sent Saturday (formal letter, signed by me, via email as well as regular mail)
oh well
might very well be a liability issue, or, perhaps no one knows how to react to the offer
</p>

716

<p>UCDAlum,
You are (unfortunately) SO right about the lack of services in the hospital. We’ve been advised (by friends who are nurses with graduate degrees) that if I am ever hospitalized, to call one of them or to get a private duty nurse. Professional nursing staffs are just stretched too thin.</p>

<p>My mom was in the hospital for over two months a couple years ago, and we kids all took shifts coming to town to help out at the hospital. She is not the sort to ask for things, and if she didn’t speak up, nothing would happen. Happily, her kids have big mouths. :slight_smile: The dietary folks would disregard what food she’d ordered, PT would come once a day instead of twice, my dad would run her glucose tests to make sure she was taking the right insulin dose. We cleaned the room, got her fresh sheets, an extra pillow, took out her trays, etc.</p>

<p>The most shocking thing to me was that none of the priests from her church, where she and my dad have attended for over 30 years, ever showed up for a visit. Hospital ministry came by regularly – she got to be good buddies with the Mormon lay minister and the Nigerian priest.</p>

717

<p>When I delivered S2 in a top NYC hospital in 1998, I was on a special diet. S1 has life-threatening food allergies, and his allergist advised me when I found that I was pregnant again to strictly avoid all foods to which S1 was allergic during the rest of my pregnancy and while nursing. I told the obstetrician about this, and informed the hospital in advance. I might as well not have bothered. I was brought the regular trays, always including foods I couldn’t eat. </p>

<p>These precautions worked. S2 is not allergic to any foods, although I have good reason to believe that he would have been if I hadn’t been careful about what I ate. Life is much easier for him; S2 still has to carry the Epi-pen.</p>

718

<p>I have had a S in the hospital about every other year for surgery to correct birth defects. He is now a teenager, he has had about 10 surgeries to date. There has been a difference in the amount of nursing care over the past several years. The care I have needed to provide in the hospital for him and the keeping up with meds, physical therapy, etc
has increased each visit. These are things that I would have expected nurses and doctors to have done. It appears that the insurance companies pay so little to the hospitals and doctors, that there has to be cuts somewhere. I wonder if a large part of the problem has to do with what the insurance companies pay along with the large number of uninsured people.</p>

<p>We need more doctors and nurses. Also, while most health insurance companies are not for profit, their top executives are extremely well paid.</p>

<p>LTS - I hope and pray for you to continue to be well.</p>

719

<p>NYMomof2, thank you for your kind words; you are correct, I do not have a college degree; actually, I do not even have a high school diploma, at least not a traditional diploma. I had hoped to go to school, but at this point, even if I have years and years left, it’s clear to me that I can invest no time in formal school. </p>

<p>I wish I understood how to even begin to fix this broken mess that is the health care system. It’s not just a matter of in-hospital care; there are massive breakdowns at every step along the way. A large volume of “stuff” ends up on my desk as a result of all the research we’ve been doing, drilling around looking for trials, complimentary therapies, etc., and some of the stories that reach me are just simply astonishing, and heartbreaking, and horribly, terribly unfair. Many of them make me just want to cry, and, sometimes, I do just simply sit at my desk and cry in utter disbelief. </p>

<p>I suppose that the greater majority of the problems can be traced back to money - if there were more money, or at least a consistent, predictable flow of it, a lot of the mess would go away. LAF reports that the National Cancer Institute had its funding cut in FY 2006 - the first time in 30 years. But that’s just the surface -there are so many inequities, and differences in care depending on socioeconomic status. And then there is the entire issue of survivorship and how some of these people - once they’ve beaten just incredible odds - struggle to try to reclaim career and professional identities. At least one long term survivor I have spoken with has has to
“reinvent” herself - her words. It wasn’t her choice to do so but she was forced out out her career - illness scares people off, and lung cancer is particularly unattractive. Another long term survivor struggles with trying to reenter his profession. In his words, his life has become totally electronic. Socially isolated, all of his interactions are via computer. That’s because he is no longer welcome in his former life (employment-centric). Fortunately his wife also now works from home so that he is not totally all alone. </p>

<p>And this is not my field. I don’t know anything about health care. Furthermore, I’m not even slightly interested in it. No offense to anyone in this profession, but nothing about it is even slightly appealing to me. But even if I had an interest, I totally lack the education, background, knowledge, etc. I have absolutely no clue how to begin to fix even one small piece of this. But it’s absolutely intolerable to me to sit here and do nothing and say nothing. And it’s frustrating to send out offers of help and support, and no one responds. Most people I have spoken with in Washington who have been deeply engaged in this mess for a while have sort of an air of acceptance about the whole thing. </p>

<p>If I cannot see a clear path to work on this by the end of next week, I may take the matter to the media. Perhaps there is a way to at a minimum raise grass roots awareness, so that perhaps people who are better equipped can be impactive towards some solution(s).</p>

720

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</p>

<p>At risk of fanning the flames here, this does not surprise me one bit, and is very sad. Priests, just like hospital staff are in short supply (for different reasons). They also usually know that the hospitals have staff chaplains, and so it’s easy to leave that job to someone else when they have such huge workloads. In the Chicago area, which is heavily populated with Roman Catholics, it’s not unusual for some very large parishes to have one priest. If he’s out of town or unavailable, then his emergency caseload is passed on to the closest neighboring church, which can also be very large, and only have one priest. One of the most frustrating parts of my job is trying to locate a priest to anoint the sick when the patient is close to death. The gamut runs from not being able to get anyone to respond to an emergency page or answer a voice mail, to priests who will tell me that since that person is not a member of their parish, could I get someone else. Well, when people are in nursing homes, and they haven’t lived near their home parish in years, and were never healthy enough to join a new one, those kinds of responses are abyssmal. Most institutions (nursing homes and hospitals) have a Roman Catholic church that provides ministries to them, but again, if the sole priest is out of town, or covering also for another large church and has another crisis, then someone is usually left feeling abandoned by the church. I’m sure if your mom’s priest knew the hospital she was in had a staff chaplain that was a priest, then they felt it was sufficient. Just curious, are you certain the priests knew your mom was in the hospital? Sometimes that information gets passed on to the ministers of care and the priests never know.</p>

<p>I remember when LTS first began this journey, she mentioned a priest visiting her, and not really hitting it off with him, but later finding much support from the rabbi. Although I didn’t bring this up, I do wonder how transferring your care to a different facility will affect the spiritual support/resources you had established. I often tell people who are thinking of declining chaplain services because they have their own church/minister, to think about our presence differently - hospital or nursing home or hospice chaplains spend their work days specifically ministering to a specific population, going through a specific journey at the time. Ones parish minister is somewhat segmented between planning writing sermons, services, administration, etc., and doesn’t give 100% to just being with people as chaplains do. For the most part, I’ve been told the chaplains are much more appreciated because, unlike the parish minister, they have and take the time to listen and bring their enormous wealth of experience to the patient; their prayers, reflections and meditations are more spiritual and offered with the person’s specific situation in mind, as opposed to a rite that often rushed through so fast because the parish priest has so many other obligations to attend to. I’ve had priests get mad at me because we ‘waited until a person was too close to death’ to call them, but they won’t listen long enough for me to tell them this person just came on our services that same day.</p>

<p>I’m not trying to excuse the priests non-presence, especially given your mom was in the hospital for two months, especially if a request was specifically made for a support visit, but I can certainly see how it happens, all too often.</p>