Take care of yourself as well as your patient:
Why your patient would prefer to be cared for at home.
Having had some shifts that were not covered and some nurses that were sub-par, while we were using a local agency to provide nurses, we decided to hire our own, advertising in local newspaper classified sections, interviewing, and orienting them to our procedures once hired. Our experiences as related in Ting and I are in italics, followed by some additional material derived from subsequent years (not italicized).
MANAGING NURSES (Cooper, 2011)
Managing nurses is like trying to herd cats, I jokingly told our nurse of greatest seniority here (six years). She agreed. They are very independent. They can be warm and purr. They seem to be listening to you, and yet….
We have had excellent nurses, judging by their behavior and by Tina’s health. I jokingly say that they are a hand-picked crew, but that the next time I have to choose, I’ll use a computer. Only kidding!
“Trust, but verify.” That may seem contradictory, but both elements are needed. You cannot supervise and observe everything, and you have chosen people who are trained to do what you need and generally want to do it right. Not keeping track is a recipe for failure, however. At the least, communications have got to be confirmed as received and understood. Beyond that, good practice needs to be acknowledged and bad practice corrected. Overly close observation breeds tension and resentment, but a lack of observation may communicate that you don’t care, or it simply may contribute to missing something significant.
We started by using a nursing agency to get our round-the-clock nursing shifts covered. The agency charged IBM about twice what it paid the nurses, which may have been a fair reflection of the need for administration and profit. The nurses they supplied were highly variable in quality, however, some excellent, some poor. Getting coverage for certain shifts, such as weekend overnights, was uncertain. Sometimes I was the overnight nurse, which I could handle as long as the night was routine, the equipment functioning properly. Sleeping or resting beside Tina, I gave medicines by the gastric tube, responded to high-pressure or low-pressure alarms from the ventilator, If we had lost electrical power, it would have been difficult though not impossible to handle alone, as I touched on above.
Hiring Our Own
“Who pays the piper calls the tune.” I decided to do the hiring and paying myself. The extra trouble of doing so was offset by the improvement in quality it led to. Within six months, I was hiring our own nurses, supplementing and finally replacing the agency. I advertised in the local paper, interviewed them and made the hiring decisions. We live in the country, so finding our house was part of the intelligence/diligence test. About half made it to the interview, and about half of these were hired.
I paid them more than the agency had paid theirs, but charged IBM less than what the agency charged, using our best approximation of the actual costs, which included a variety of government surcharges.
There were no “off the books” dealings, as this is a sure-fire way to get in trouble or leave you open to blackmail by a disgruntled employee. And Uncle Sam needs our money, right?
“You get what you pay for.” I would not expect our nurses to work for nothing, and I know they don’t work here only for the money. By paying wages somewhat above average and by providing a pleasant working environment, we have been able to attract and keep an outstanding crew. The doctors have commented on Tina’s excellent condition and care. The nurses in the hospitals have commented on the high quality of our nurses when they have seen them in action. We have our nurses stay with Tina during her rare hospitalizations, even though we are not reimbursed for this.
While on the subject of compensation, note that showing appreciation for the help the nurses supply is important. Tina thanks her nurses for almost everything they do for her, even if they say, “You don’t have to thank me.” I thank them often, too, and I try to be specific when I do so.
In November, the week before Thanksgiving, we give a yearly bonus to each nurse, generally a week or two of her pay (thus 2 to 4%). The ones I am most pleased with get the upper of the bonus range.
Interviewing the candidates, I had to get a sense of not only their skills but also the reasons they wanted this job. The salary was attractive, especially for LPNs (Licensed Practical Nurses), who often elsewhere would get only half the hourly pay of RNs (Registered Nurses). To eliminate RN-LPN rivalry and to acknowledge that their duties at our house were identical, we paid both the same rate, giving RNs some preference in choice of shift hours.
Home care does not provide much career advancement, does not offer the opportunity to meet a nice, eligible doctor, does involve getting along with the family, and–in our case–a seventy-pound Golden Retriever with an alpha-dog temperament. Smoking was taboo, given the oxygen in use and the difficulty there would be in evacuating Tina safely in case of a fire. Nurses were told not to come to work with a cold, as a respiratory infection was the likeliest cause of death in cases such as Tina’s.
The highly successful coach of Penn State’s football teams, Joe Paterno, recruited far more high school quarterbacks than he was going to play in that key position. They were typically outstanding athletes, and they proved their prowess when he deployed them in other positions. When I interview, I look for something like that, some outstanding strengths that will add to our team. The nurses vary in their stronger and weaker areas, but as Rocky and Adrian said, they “fill gaps.”
Some say the problem with public transportation is the public. Nurses will tell you that the problem with home care is the home. They can do their jobs under a variety of conditions, but the nature of the home can make the job pleasant or unpleasant. We tried to keep that in mind. Tina is a patient patient and a gracious and grateful one. I am appreciative, too, though businesslike in manner. I praise in public and criticize in private and try to be clear in communications. We have not only detailed shift record forms to be filled out each shift by each nurse, but also a communications notebook for information that is less technical but needs to be shared.
One goal is to make the job a place the staff looks forward to coming to.
We try to live up to our motto, “Tina comes first, but everybody counts.”
On the refrigerator in the nurses’ kitchen, I post two or three months of shift schedules. Each row is a date, and the columns are for three or four shifts, typically 4 to 10 hours each, during that date, indicating which nurse (her initials) is to be on duty. I started by giving each nurse pretty much which shifts she preferred, and then I negotiated to fill the less-popular hours. I required the nurses doing 16 hours or more a week to serve some week-end time. The 10-hour shifts were almost always overnight, from 10:00 p.m. to 8:00 a.m. If a nurse needed to take some time off, she gave up hours temporarily to another nurse or traded with other nurses. They marked up the schedule to show the revision, with my approval. If a nurse did the same shift for a month or two, she “owned” it. There was a “use it or lose it” factor. New nurses were hired to fill particular gaps, then later tended to get more hours as the occasional vacancy developed. With the help of my nursing business manager, Barbara George, we almost never had a period without nursing coverage.
In the home care situation, we have almost no privacy. The baby monitor connecting Tina’s bedroom to the nurses’ kitchen/headquarters is almost always on. Whatever one does or says is likely to be known. The nurses, too, have little privacy, as they may readily be overheard or observed. One gets used to it, and we make some effort to back off and provide each other a bit of privacy, at times.
Of course, when you are not doing something you shouldn’t, the need for privacy is less. Once or twice during the week, Tina and I lock her bedroom door, use the dimmer to turn down the lights, turn off the baby monitor, and turn on some romantic music. It’s a good opportunity for each to tell the other, “I love you, every cell, every second; every molecule every moment; all ways, always.”
“Why don’t you…?” This is followed by an explanation of how you could do more, better. It’s helpful, in offering an idea you may not have considered, and not helpful, in seeming to add yet another burden. My response is often along the lines of “Yes, but….”
Nurse Michele Shehata says her grandmother has a saying, “Everybody wants to fish, but no one wants to get his feet wet.” When I’m given a suggestion that requires added work, I try to delegate that work to the one making the suggestion, such as the suggestion that we make “fruit and vegetable smoothies“ in a blender for Tina. Delegating the suggestion to the innovator may discourage input, but it makes me feel less stressed. Often, the suggestion is not carried out, because there were good reasons why it had not been done already.
Why not make smoothies for Tina?
The benefits are small. She cannot taste the smoothie, given through a gastric tube. She is already getting a balanced nutritional diet, without evident deficiencies, although a variety of foods might provide something not known to be missing.
The problems are numerous: We keep track of everything she gets, to help interpret her responses, such as rashes, flushing, etc. We would need a standard formula for the smoothie, one that we tried out in small increments at first. The ingredients would need to be purchased, then washed and cut up and prepared in the same proportions each time. They need to be processed in the blender, with the excess saved or discarded. The blender needs to be cleaned thoroughly. Who is to be responsible for each of these steps? We have a crew of ten nurses. Which ones will do what, when? This will need to be “charted,” scheduled. Right now her daily calorie intake is 1,200, and her weight seems stabilized (we almost never get her to a scale). An extra 100 calories per day would mean she might gain an extra pound each month or two, unless something else is reduced or dropped. What would we eliminate?
“Smoothies” died a natural, organic death.
How Many Nurses?
There are 168 hours a week to be covered in round-the-clock nursing. We generally have had eight to ten nurses at one time, whose weekly hours usually ranged from about 8 to about 39, averaging roughly 16 hours per nurse. As a rule, our nurses got along very well with one another, often chatting awhile about personal matters during the change-of-shift periods, which we did not discourage. Different nurses had different strengths and weaknesses, but by the end of a week, what needed to be done got done.
The nurses who worked out best for us were typically forty to sixty years of age. All had been married. Almost all had children. Almost all used this as a part-time job, as we did not offer health insurance, which they typically had through other means. Compassion and intelligence were most valuable traits, and these women became the primary source of Tina’s social life, as we had few friends and family who could visit us regularly. To lessen the risk of contagion, we mildly discouraged visitors.
Only rarely has a male applied for the position. Tina would not feel comfortable with one, nor would I. We have not ended up with one.
TLC [Tina-Loving Care]
The doctors who have treated Tina have remarked on the exceptional care she has obviously been getting. Her continued survival is little short of a miracle. We are proud of her and proud of ourselves.
Ah, you say to yourself, perhaps, this sounds too idyllic. Were there no problems? The biggest ones were the rare but scary infections Tina contracted. She came home from the Critical Care Unit with Pseudomonas and drug-resistant methicillin-resistant Staphylococcus aureus (MRSA), common hospital-acquired infections. Her good general health and the use of antibiotics beat these back, though MRSA remains in her system. For five years there were no bedsores, a major risk in these bedridden patients, and then one developed under unusual circumstances and took many months to conquer, but we did, with added help from a wound-care specialist, Edie Fitzpatrick, RN. During the last seven years there have been a few viral respiratory infections, for which medicine can do little. Fortunately, Tina’s body has fought them off. Still, each day is a minor miracle. I have encouraged the nurses who really rely on this job to get a second one, too, just in case.
Other problems? Young or inexperienced nurses generally did not do well. The 20-year-old I hired as our first overnight nurse fell asleep in her chair and remained asleep as I got up from our bed, got Tina’s medications, and returned to administer them. That was grounds for termination, and I did. (Recall they once shot sentries for sleeping on duty.) During the past seven years, I fired two or three others for being asleep on the overnight shift. One of the two was in her twenties, also. Inexperienced middle-aged nurses tended to be nervous but generally worked out. There often was a willingness to learn that helped offset the lack of experience and a maturity that made them more suitable companions for Tina.
A different kind of problem arose with nurse Kim, originally from Korea. Very nice, hard-working, caring, careful. Not too good with English, unfortunately. One day she described giving medicine X when it should have been Y. No real harm done, but when she went to take another job–soon after–I was both sorry to see her go and a bit relieved. “Trust, but verify” indeed.
Even native speakers of English have some misunderstandings due to the special jargon of the nursing profession. I’ve kidded those trained in British schools with the witty saying that Britain and America are two countries separated by a common language.
H1N1 Flu Shots
As mentioned above, we lost several nurses over the issue of H1N1 flu shots. One had provoked an argument prior to this that led to her dismissal, but the underlying issue seemed to be her dread of the H1N1 shot. Because the flu could be deadly to Tina, an individual nurse’s desire to avoid possible side effects could not weigh heavily with us. We could not let some skip the shots while requiring the others to get them. Sorry. We lost some capable nurses.
One nurse’s behavior led me to court. She was a hiring mistake, and I’ll refer to her as Ms. Take. In some senses she was a hardship case. She was married, had five children and now custody of a grandchild. In her interview, Ms. Take acknowledged that she was a smoker, which was usually disqualifying. She promised never to smoke on the job, and I think she kept that promise. She was an LPN, intelligent but not well-educated, with more than a dozen years of appropriate experience. Preferring not to work overnight, she was still available for any shifts we had. That might have been a tip-off. Two of her three references did not call back, another tip-off, but the one who did was favorable toward her. Ms. Take was chubby, sloppily dressed, warm and articulate. I took a chance and hired her.
She started with a half-dozen hours per week. Eventually, she was working more than the threshold necessary to qualify for unemployment benefits. After the requisite six months of this, her performance declined. Then she missed a shift without alerting us, with an excuse that did not sound true. I warned her that she was on probation. A month and a half later, on two consecutive overnight shifts, she failed to initial the numerous boxes that document medications and feedings. I knew she was busy making beaded jewelry to sell, which was acceptable as long as she met her obligations to Tina. The morning of her second night she took home with her the shift report record, the first time anyone had ever done that. I called her, listened to her excuses, and fired her.
When the Department of Labor wanted to give Ms. Take unemployment payments because she claimed that was fired without adequate cause, I appealed. Two Administrative Trial Judge hearings, of about an hour each, followed. In the first, I presented my case, and I felt optimistic. In the second, the same judge seemed leaning toward favoring Ms. Take, who had not disputed my narrative. Subsequently, the judge found in her favor. Reasons were as follows:
–We lacked an instruction book for the nurses (though the forms made it obvious what needed to be done).
–We hadn’t warned her she’d be fired if she took our property (nursing records) home (did not tell her theft was not OK?)
–You aren’t supposed to be fired for a first offense, generally, and this was the first time she had failed to document medications and treatments twice in a row.
We had been warned that such judges tend to favor the employee over the employer. Looked that way. I call her Ms. Take partly because she collected a substantial amount of unemployment money and partly because she had lectured one of our staff on how to maximize child welfare payments from the state. Because we paid well above the usual LPN wage, she could honestly maintain that she could not find a comparable job in her area. Perhaps she had outsmarted us, making herself eligible for unemployment then getting herself fired.
In two or three other cases, we succeeded in appealing unemployment compensation decisions concerning other nurses we fired for good cause.
When we were still using home health aides rather than nurses, we let our foreign-born aide have her husband visit from the Mother Country for a week or two and stay with us. He was odd but not much of a problem, except that Tina thought his hands strayed once too closely to her breast. Being a slow learner, I let her twenty-something son stay for a much longer period, which came to an end when he informed me that he is “a homosexualist,” not something the father of a teenage boy wants to hear, at least not this father.
Theft occurred in the seventh year of our nursing program. A week’s worth of morphine doses disappeared. A few months later, a nurse’s book of Robert Frost’s poetry was taken. Not long after that, cans of the protein powder supplement were taken; near Christmas, a $100 bottle of Giorgio perfume was snatched. Another book seems to be missing, and other items could well be gone without our having noticed them.
Fortunately, it is only “stuff.” We alerted the nurses that they should not leave any valuables of their own behind, and we let the matter drop, but it undermined my trust in the few nurses who could not be ruled out as thieves.
In our eleventh year, I observed a nurse leave with about $20 of cleaning supplies (gloves and wipes). Nurses often take our large empty boxes home with them for storage use, and of course we have no objection. I saw one empty box atop a seemingly empty box by the door on my way out to walk our dog. Curious, I picked up the empty box and separated it from the box beneath, and found that the lower one was not empty, but had a box of gloves ($8) and a container of wetted wipes ($12). I realized the nurse was going to take the two boxes as though empty. Initially, I separated them, to signal that I had caught on. I quickly decided not to reveal having detected this. “Knowledge is power.” Soon after, that nurse took the two boxes with her, careful not to separate them in plain view. Eventually, she will likely read this and know that I know that this attractive, intelligent, well-paid nurse took stuff from us worth a half-hour’s pay. I’ll give her the choice of quitting or being fired. [She quit.]
EMERGENCY MANAGEMENT (Cooper, 2011)
The first page of the three-holed binder we used for our nursing information, charts, and shift reports has had a list of instructions–and telephone numbers–to assist rapid decision-making in the event of an emergency. We have discussed a few scenarios with the staff. Rapid onset of respiratory infection and fire are the two paramount risks. We choose nurses who are strong enough and well enough to drag Tina out of our home on their own in case of a fire during the few hours a day I am typically not at home.
Most critical is providing two paths for air flow to Tina’s lungs, so that if one is blocked, she still gets air. The tracheostomy tube that goes into her throat is curved, so that it extends downward inside the trachea (windpipe). Inside it has a small balloon, the “cuff,” like a tire inner-tube, that surrounds it. This means there are two paths for air: through the tracheostomy tube in her throat or around the tube to exit normally from her windpipe to larynx, mouth, and nose. Depending on the degree of inflation of the cuff, much, little, or no air flows through the space between the cuff and the inner wall of the windpipe and on to larynx, mouth, and nose. Full inflation seals the cuff to the wall, keeping any fluids, such as saliva, from flowing into the lungs, a benefit. Full inflation prevents air from going to the vocal cords, greatly limiting the patient’s ability to communicate. Full inflation means that any blockage of the trach tube cuts off air to the lungs, a dangerous condition. We use partial inflation of the cuff, giving us two ways for air to get to and from the lungs, through the trach tube or around the cuff, somewhat raising the risk of aspiration of fluid into the lungs, but lowering the risk of asphyxiation.
We have tested our ventilators and have assured ourselves that when they are off, Tina can still inhale and exhale through them. Off, they do not assist, obviously, but they are not stopping the flow, a critical concern. They have built-in batteries, and we have back-ups for them, but if some electrical fault should cause them to stop, Tina could still breathe.
In various places around our house are stored plastic gallon jugs filled with tap water. We usually drink bottled water, as our well water is mediocre. When we lose electrical power, and even when we fire up our gasoline-powered generator, we do not have electricity for the well pump. Water for cleaning and flushing quickly becomes an issue. We once had a 95-hour (four-day) outage, when our gallon jugs were very useful.
The gallon jugs of water could be useful against a very small fire, and we have fire extinguishers in each kitchen, by each exit door.
Before her near-death exacerbation and aspiration pneumonia in the spring of 2004, Tina rarely complained of any pain associated with MS. This MS exacerbation that cost the remaining use of her arms and hands and nearly cost her life also left her with painful contractures of the elbows and wrists.
The primary doctor at the hospital active in her care, Dr. Richard Walker, an internist and pulmonologist, agreed with me that we must give her protection from this pain, as it made moving her for in-bed care traumatic and threatened her will to live. The solution was morphine, and I was adamant that she be given enough, even if risky, to protect her from pain. He agreed.
For seven years now, we have been able to shield her from that pain. In a few instances, a shortage of morphine or an oversight has left her unprotected. The resumption of that pain proved the need for the continuing pain coverage.
Morphine sulfate solution became harder to get in 2009. We switched to morphine sulfate pills, water soluble, thus also capable of administration through the gastric feeding tube. We hadn’t realized they would be half the price of the liquid. Instead of costing us $420 per year, it is $210 per year. Since IBM pays four-fifths and we pay only one-fifth, the liquid was actually costing a total of $2,100/year; so using the pills instead saves a thousand dollars per year. The other advantage was that the pills constituted one-eighth of the total daily dose, and thus were given every three hours. The morphine solution was one-sixth of the total daily dose, given every 4 hours. More frequent doses in smaller amounts help preserve a nearly constant level in the blood, and nearly constant pain protection.
Tina gets five other prescription medications at various times of the day and six feedings throughout the day with a balanced nutritional fluid. She also receives cranberry juice and yogurt, along with a host of vitamins and minerals. She is in robust health, needed if she has to fight off viruses, for which there is little available effective medication.
All of this is kept track of with “charting,” listing of each item, its time of ingestion, day by day, the nurses initialing what they have given. A similar set of documents chart the treatments, from bathing, to diaper-changing, to care for the gastric tube site to care for the tracheostomy site, etc.
Frequent monitoring of crucial vital signs—blood pressure, pulse rate, blood oxygen saturation, heart rate, respiration rate and volume—has helped us catch incipient infections rapidly. Still, an attack of pneumonia once developed within only a few hours, and we had to call 911 and the emergency medical technicians to rush her to the hospital, forty-five minutes away.
Intravenous antibiotics given through a triple-lumen catheter placed in her upper chest, saved her life. A couple of other times, intravenous lines threaded from her arm to a major vein in the chest were sufficient. The irritation of those veins that occurred at that time means that the next time, we will have to re-install a port surgically. It all gets a bit scary.
Several doctors have told us she has been receiving exceptional care at home. We call it TLC, “Tina-loving care.”
To keep track of the use of liquid morphine, we weighed the container on a scale sensitive to tenths of a gram and followed the weight changes over time, comparing with the expected usage. We let the nurses know, informally, that we were keeping track of this,
When we switched to using pills for the morphine doses, we ran out a week early one time. We suspected that they had been taken by one of our nurses who had recently had a painful operation. We noted it in the communication book, but did not accuse anybody. After that, we put a limited amount of the pills, about a week’s worth, by the nursing station in the home and stored the rest upstairs out of reach.
In the eighth year of her care, we found the patient was not feeling pain when the morphine dose was missed. We reduced the dosing about 20% every month and weaned her off morphine successfully.
SHIFT NOT COVERED
For the first time in a decade or so, we recently had a shift not fully covered by the nursing staff. The nurse scheduled to work that overnight shift (10 p.m. to 8 a.m.) called in the early afternoon to say she did not feel well and was calling other nurses to seek a replacement. In the evening, she called around 7 p.m. to say she was being admitted to the hospital and had been unable to get any of the nurses she called to respond. We called the few nurses who might have been able to help, but they could not or would not, even when the pay was doubled for the shift. Finally, the nurse who worked to 10 p.m. agreed to stay to midnight and our head nurse agreed to come at 4 a.m. before she went to her day job. Both got paid double time, although each would have done this for us without that. Subsequently, one of the two was given more scheduled hours, as she had been seeking. Two family members, one a retired nurse, handled the four hours not covered.
OUTSIDE SUPPORT (Cooper, 2011)
“God helps those who help themselves.” Let’s hope so. More often it seems it is, “God help those who help themselves” because few others will do so.
The Multiple Sclerosis Society Support Group in Mt. Kisco (near our Bedford Hills place), c. 1985, was pleasant and encouraging. Friendships developed there that lasted years. Still, the newly diagnosed seemed not really happy to see the wheelchair-bound members. Too scary. Cognitive losses can create complications. The more you might benefit from such a group, the less able you are to be involved, and perhaps the less willing the group members are to be involved with you.
In April 2011, I received a card from the National Multiple Sclerosis Society’s New York City/Southern New York Chapter, inviting us to register for support groups, one or more of sixty possible choices, to meet for 90 minutes at a session in one of the five boroughs of New York City, some seventy miles south of us. The front cover lists these 17 of the 60, none of which seemed likely to be worth the trek to the city….To be less critical, I might have found worthwhile the “Caregiver” or “Cognitive” or “Stress” groups, had they been nearer to me.
If you choose a country setting to “get away from it all,” you must not be surprised if you have gotten a bit too far.
Our friends at Ledgewood Commons (Wendy and Zane, Ruth and Mal) were good company and remained our friends ever since, real psychological support. Wendy’s piece in the section at end of the book describes the kind of emotional support that she and Tina gave each other. Ruth was kind enough to accompany Tina and me to church and ended up converting from Judaism to Christianity, with Tina’s sponsorship. Zane and Mal and I have remained good friends, and their visits to us usually include a walk around Lake Osiris and the settling of the political and economic affairs of state, nation, and world.
Emails help, too. We have a few steady e-correspondents.
“A friend in need is a friend indeed.” That must mean that someone who helps you when you need it is truly a friend. It can’t mean that one is more attractive as a friend when needy. Our friends have had a mixed record. Types of support include calls, letters, visits, holiday cards and presents. Some have come through. Some have not.
Neighbors have helped occasionally, but we can’t reciprocate, and we do not request it. Sometimes the coming and going of our nurses inconveniences neighbors, but they do not complain. We do appreciate it and thank them warmly.
How about relatives? By the time MS gets truly difficult, after one is 40 or 50, parents are often too old, perhaps no longer alive or are absorbed in the problems they and their other children have. Tina’s parents made several monetary gifts to us, representing 10 to 20 percent of our income in those years. The trust fund in their wills represents another few years of income, should it be needed for Tina’s welfare. Very generous and much appreciated. Tina’s brother and his wife and their children have visited on the day after Christmas each year, driving from her parents’ home in Delaware, and giving us nice gifts, including a microwave oven for our kitchen and a flat-screen HDTV for Tina’s bedroom. We appreciate it. Her relationship with her sister has long been less warm, so little is expected there.
IBM has been wonderful. We are thankful for all their help. We wish them continued prosperity. Obamacare has us worried, as some companies are choosing to dump their obligations onto the public plan. Such a plan is not going to cover our in-home care 24 hours per day. [IBM made a special program for people like us.]
After my mother cracked a pelvic bone, we were able to transfer her here from the hospital after a few days. Medicare provided a half-dozen physical therapist visits, after which they stopped, my mother having been “treated,” though not greatly improved. My sister has been a big help. Two of my three brothers have contributed to a portion of the added costs.
In talking with our staff members, I learn a common story: one child carries most of the responsibility of caring for parents; the others do not. We’ve done better than that.
Granted, if you marry someone, you are taking your chances, “for better or worse, for richer or poorer, in sickness and in health.” If you choose to create children, you are signing up for decades of responsibility.
We do think, Tina and I, that children have a responsibility, an obligation, from love and duty, to assist their parents in times of need. We hope ours will not have to be called on to sacrifice for us.
EXPECT MORE, GET MORE?
I almost entitled this, “Expect less. Get less. Care less.” Expecting less helps shield us from disappointment. Lowered expectations often lead to worse results. Poor results need to be faced stoically.
Expect more. Doing so makes you work harder, more optimistically, toward your goals. Others often try to live up to our expectations. Low expectations produce worse behavior. Expecting that another person will treat you unfairly can make that person inclined to treat you less well.
Get more. Not only does positive thinking improve our mood, it seems to attract what we are seeking. This “law of attraction” doesn’t always work, but it probably does improve our chances.
Care less. We all prefer positive outcomes. If we let outcomes control our happiness, however, we are vulnerable to unhappiness when things do not go our way. Kipling advised that we meet triumph and disaster stoically, and “treat these two imposters just the same.” Imposters? Some defeats are to our benefit: “Every knock is a boost.” Some victories are Pyrrhic, costing more than are worth, encouraging us to go in a wrong direction thereafter.
“Hope for the best and prepare for the worst.” Harness positive thoughts, but “keep your powder dry.” For example, IBM announced in August 2013 that it was moving its retirees, like me, from their generous medical plan to Medicare plus partially subsidized supplements. For many, the change was neutral or beneficial. For Tina and me, it would be disastrous, falling far short of the hundreds of thousands of dollars a year that IBM has been providing for Tina’s round-the-clock skilled nursing care the prior nine years. After contacting IBM, I scurried around, planning the depletion of our savings, our retirement funds, and money from our two families, preparing for the worst, while hoping IBM would make an exception for exceptional cases.
In mid-November 2013, we learned that Tina’s in-home skilled nursing care would continue to be covered fully. IBM had listened to the concerns of its retirees who were in special situations, and the corporation has modified its plans. Our response: “Thank God. Thank IBM. Thank God for IBM.” Our Thanksgiving came a week early.
When we were informed originally that IBM would not be covering Tina’s in-home nursing care, we were advised by friends to pursue legal remedies, to fight. The alternative was to expect that, once aware of situations such as ours, IBM would do the right thing, as it did. Litigating might have been useless or even counter-productive.
As much as physicists like equations, nurses dislike documentation. It is often a thorn in their side and frequently perceived as time taken away from the actual job of “nursing,” giving care to the patient. But it is also recognized as required by law and necessary for optimal care. Nursing combines giving care with making assessments and recording both.
We have, over many years, developed our home-care documentation to be user-friendly and require minimal charting time, thus decreasing time taken away from caring for the patient. Some documents have taken the form of checklists requiring only initialing the completed actions for medication administration and treatments. Our assessment sheet, which is organized by systems and is a one-page, two-sided document, provides for merely checking-off or circling most assessment criteria. Minimal writing is necessary – but space is also available when needed.
Our forms have worked well in our practice. Whether used for nursing professionals or family in-home caregivers, these are merely “to-do” lists and “observation” forms. They provide a list of what needs to be done and when it must be done. Additionally, by noting what, when, or how something looked today, for example, it provides a means for comparison to see if there is improvement or a decline from one day to another. Once written and/or checked off, it no longer has to be remembered. It can be factually referenced later, if needed. It eliminates “I think….” And if the area, box, or section of the form isn’t completed, it’s a reminder that something wasn’t done and needs to be. In the nursing profession there is an adage: “if it wasn’t charted, it wasn’t done. “
In this part of the book, we give a brief description of the documents we use, leaving more detailed descriptions to the appended material near the end of the book. Please refer to the Exhibits section for document samples. Some information has been changed for patient privacy or redacted for space limitations. Field descriptions and medical information pertaining to the forms appear also.
PHYSICIAN’S ORDERS: MEDICATIONS, EXHIBIT 2A, EQUIPMENT & TREATMENTS, EXHIBIT 2B
We obtain renewed medication and treatment orders from the patient’s primary care physician every 90 days. This is done for insurance purposes as well as to provide the nurses with ongoing orders for their practice. Generally, it is nothing more than a list of all that is necessary for the patient’s continuing care. Once submitted to the physician, he evaluates and signs off on the orders, and they are returned to us. See the Exhibits section of this book for details.
EMERGENCY PLAN, EXHIBIT 3
This needs to be near the front of the patient’s ”chart” or book, although unlikely to be needed.
Responses for potential emergencies are described for the following:
- Loss of electrical power
- Loss of ventilator
Not all possible emergencies can or should be covered, just those whose severity and probability are greatest. Please refer to the Exhibits section for this document sample.
REFERENCE INFORMATION AND CONTACTS, EXHIBIT 4
This merely provides a complete and detailed listing of patient specifics, physician contacts, and other pertinent information pertaining to the household and the patient.
- Patient information
- Miscellaneous contact information
- Physician and pharmacy information
- Emergency transport information
- Vent settings
Please refer to the Exhibits section for this document sample.
MONTHLY NURSING TREATMENT FORMS: EXHIBIT 5A (page 1) & EXHIBIT 5B (page 3)
Simply stated, this document is a “to-do” list of requirements for the patient’s care. Like any “to-do” list, the purpose is to ensure what needs to be done is not forgotten. It eliminates forgetting to perform tasks and prevents essential information from being omitted during the nurses’ reporting-off period. In addition, it provides a method to track and reorder inventory, since it provides what equipment is used and how often it must be replaced. Lastly, besides assuring that essential activities are completed, it holds nurses or caregivers responsible for ensuring the item was done, as well as done correctly.
These tasks are done periodically, such as on each shift or on a daily, weekly or monthly basis. They include patient treatments, such as dressing changes, as well as changing equipment to ensure continued and optimal operation…for example, changing the in-line suction apparatus. In our practice, we also use the Treatment Sheets as reminders to the nursing staff to, for example, check the Communication Book, and we try to ensure their practice is safe for them by reminding them to use Universal Precautions.
Toward the back of this book, two exhibits of this patient’s
six-page document are provided to illustrate various time frames and how to depict when a certain task may require attention when not completed on a daily basis. Please refer to the Exhibits section for this document sample.
DAILY MEDICATION ADMINISTRATION RECORD – PAGE 1:
PRN MEDICATION ADMINISTRATION RECORD – PAGE 6:
Often referred to as the “MAR”, this follows the same pattern as the treatment form. However, instead of the activities which need to be performed, the administration of medications and feedings are noted.
This is another “to-do” list but is solely dedicated to the administration and application of medications, ointments, creams, suppositories and any other substances that may “go into or onto” a patient for treatment of a condition prescribed by a physician. Again, only a sample of the MAR is provided: the first and sixth pages of eight, in this patient’s case, are shown.
NURSING REVIEW/ASSESSMENT FORM: PAGE 1: EXHIBIT 7A &
PAGE 2: EXHIBIT 7B
Assessments are crucial for evaluating and appraising a patient. The patient is observed in a step-by-step pattern, system-by-system. Use of touch, smell, sight, and hearing are all vital in the assessments’ completion. The Assessment Form is the manner by which the assessment is documented. It provides a history of the patient’s medical condition, which then allows for comparisons as well as to understand what is normal for that person.
At the beginning of each nursing shift, the oncoming nurse begins completion of the Nursing Review / Assessment Form. This one-page, two-sided document is used to evaluate the patient’s current physical and emotional condition; log medication administrations; track treatments; ensure proper equipment settings and changes; and generally provides a permanent record to ensure vital information isn’t lost or misreported. While a general physical assessment will be completed early in the shift, the form is used throughout the entire period to document any changes in the patient’s condition and record completed actions.
The form used for the patient is broken down into thirteen sections. Most categories pertain to the major body systems. However, there are also sections for general information, equipment checks, nursing and shift identification, as well as allowing space for notes. A large amount of information is recorded simply by selecting or circling items. Not only does this serve to remind nurses what to assess and aid in its full completion, it also minimizes handwriting legibility problems.
Used for ventilator-required patients with pulmonary problems, vent settings are dictated by a pulmonologist. For this patient, each shift these setting are checked to ensure they are accurate and have not been mistakenly changed, which potentially could be life-threatening.
Whether the patient is able to eat by mouth or uses a gastric tube for all fluids and nutrition, the amount the patient ingests is vital to know. Too much fluid could cause edema, hypertension (high blood pressure), and could create pulmonary problems if the fluid backs up into the lungs. Too little fluid can result is hypotension (low blood pressure) and decreased perfusion (oxygen supply) to vital organs. Recording nutrition is imperative to ensure that sufficient quantities of protein, water and nutrients are available to promote healing, maintain skin, and provide fuel for continued functioning of the body at the cellular level.
The neurologic system is comprised of the brain, brain stem, spinal cord, which completes the central nervous system, and also included are various nerves located throughout the entire body, the peripheral nervous system. It is a complex system, using neurochemicals and transmitters and cellular structures to take external input from the environment via our senses and internal input from bodily functioning to transform them into usable, functional, and creative data which we perceive as life.
This section is used to assess and detail neurologic function and changes throughout the shift. In general, only two main points are assessed for this patient and are highlighted in an appendix.
The respiratory system ensures the body is provided with oxygenated blood via the smallest functioning unit in the lungs, the alveolus. It is at this cellular level that carbon dioxide is exchanged for oxygen. In addition to the lungs, other essential members of the system include the pharynx, epiglottis, larynx, trachea, bronchus and its tapering limbs, and the associated respiratory muscles and diaphragm.
This section is used to assess and detail respiratory function and changes throughout the shift. In addition to assessing pulmonary function and treatments, a portion reflects equipment changes that are often required on a daily basis.
The cardiovascular system is comprised of the heart and all the blood vessels; that is, the veins and arteries. The system functions to distribute oxygenated blood received from the lungs and deliver it throughout the body via the arteries. Venous return to the heart via veins takes deoxygenated carbon-dioxide-rich blood back to the heart to return it to the lungs for oxygenation and CO2 removal. Assessment of this system includes blood pressure readings and heart rate, which are detailed under Vital Signs (V/S), as well as pulses, tissue perfusion and fluid backup called “edema”. This section is used to assess and detail cardiac and venous function and changes throughout the shift.
The gastrointestinal system, often abbreviated as “GI” system, begins at the mouth and extends throughout the body to the end of the large colon at the anus. It processes food using many complex sequences and functions to transform bulk into minute substances for use at the cellular level. While processing food, the system also conserves water and returns it to the body, and prepares what is unusable for elimination via stool. The GI system is comprised of the oral cavity, esophagus, stomach, small intestine, and large intestine. However, various other organs also contribute and play key roles in the proper functioning of this system. These accessory organs are the salivary glands, gallbladder, pancreas, and liver.
Patients that do not obtain nutrition by mouth require all substances for survival be directly received into the stomach or the jejunum section of the small intestine via a tube placed surgically. This patient had a percutaneous endoscopic gastrostomy (PEG) to place a tube into the stomach, out from stomach wall through the skin to outside the body with which to deliver nutrition. Daily care and assessment is essential for the continued functioning of the tube, and this section is used to assess and detail gastrointestinal changes throughout the shift.
The urinary system captures liquid waste from the body and voids it by way of urine production and elimination. Through a process initiating from the kidneys, which are located on each flank or side of the body, all fluid is filtered. What is necessary for the body at that time is restored: non-essential substances as well as extra fluid are eliminated. Other organs involved in the voiding process include the ureters which bring urine to the bladder where it is stored and eventually eliminated by way of the urethra.
The reproductive system is close to the urinary system, although these are two separate systems. Both systems are assessed at the same time, and although no separate fields are dedicated to the genital-reproductive system, and since menses has stopped, it is documented as one system for this patient.
For this patient, urinary catheterization is not performed. The patient has routine Depends (disposable diaper) changes at regular three-to-four-hour intervals with implementation of absorbent inserts to help keep skin dry. Another option is urinary catheterization, which allows for urine to flow freely: a tube is inserted into the urethra until reaching the bladder. Urine then flows into and is collected in a bag for accurate measurement and assessment. Catheterization can be done intermittently throughout the day without leaving a tube in place. Sterile procedure must be followed to keep from causing an infection in the urinary tract.
MUSCULOSKETAL / SKIN
Also essential to the body are the muscles and skin. Muscles provide metabolism, strength, and functionality for motor actions or even tasks related to the most basic functions such as breathing and pumping of the heart. Skin is the largest system of the body. It acts as a protective layer, promotes temperature regulation by perspiration, and is an indicator of other bodily system functionality, such as cardiovascular, respiratory, and gastrointestinal intake and elimination.
Skin breakdown can cause severe and devastating effects. Skin breakdown starts as a non-blanchable area (one that doesn’t turn pink from white when pressure is removed from the site), a reddened patch often on a bony prominence. Tissue breakdown occurs quickly, and in the most severe cases, can extend to the bone. Depending on the patient’s underlying condition, breakdown can occur in as little as two hours. Once breakdown starts, it is difficult to stop and recover from the process.
This section is used to assess and care for the muscles, bones, and skin as well as document care to eliminate skin breakdown throughout the shift.
Psycho-social aspects of a patient pertain to the emotional, psychological, and social characteristics. They are assessed and documented to provide insight on how well the patient is adapting to the illness and the care and how they outwardly present concerns or emotional well-being.
This section is used to assess and detail psycho-social well-being and changes throughout the shift.
DEPENDS CHANGE RECORD: EXHIBIT 8
Another form we developed was to solely track fecal output. One of the most challenging aspects in nursing is bowel regulation, especially in a bed-ridden patient on liquid nutrition. Optimal bowel function requires bulk, as in fresh vegetables, fruit, and whole grains. Hydration is vital so that the body doesn’t take all the fluid from the stool, resulting in an impaction. However, too much hydration may result in fluid overload, affecting electrolyte imbalances, edema, and backup in the cardiac and pulmonary systems. Bowel function also requires movement, both by the body and by peristaltic activity of the gastric and colon muscles. Medications can also impair normal function, producing either too much output or not enough. For example, opioid pain medications can induce constipation.
To track, record, and provide ease in reporting, we developed the Depends Change Record.
At one glance, any nurse or caregiver can look to see a past and present status of bowel elimination, including quantity and quality of the stool – both very important. It also provides a time when diaper (we use Depends disposable diapers) changes are to be made. So it performs a dual task: when to do a change (for us, usually q3h=every 3 hours) – and what occurred during each change.
To ensure elimination, we have in place measures to promote bowel activity because we were able to provide the physician with documentation. Physician-ordered bowel protocols include daily administration of Miralax, alternate days of other bowel-movement promoting medications, and PRN medications to help evacuation if necessary after 48 hours without such movements. As such, bowel elimination is no longer the problem it once was, and it hasn’t been a significant problem for quite some time.
There is another purpose of the Depends Change Record besides keeping track of bowel function. It provides a means to decrease the risks of bedsores. Once a bedsore begins, usually as a benign, small reddened area that doesn’t turn white when the skin is depressed (non-blanchable), it can quickly turn into an open wound that can damage skin, fat tissue, and muscles, continuing to the bone. By changing these disposable diapers often, we get to assess any breakdown at a very early stage. Since the patient is being moved, this activity allows for improving general skin care with treatments such as applying lotions to the back, and for auscultating lung sounds with a stethoscope, or performing pulmonary treatments.
Wetness and pressure are two contributors to bedsores that are also decreased by using frequent Depends changes. Urine and feces are caustic to skin during prolonged exposure. Changing diapers at regular intervals reduces the time the patient’s skin is in contact with these. After cleaning and drying the skin, we apply a water-proof ointment, such as A+D, to the skin as further protection, providing a barrier from these corrosive, acidic substances.
Constant pressure on the skin at bony prominences, such as the coccyx bone at the base of the spine, is also reduced during the disposable diaper changes, as the patient must be rolled to do the change. Even limited changing of positions throughout the course of the day greatly enhances the viability of the skin. It relieves pressure from lying on the bones, decreases shearing forces that occur as the body moves downward in bed by gravity, and provides enhancement to blood flow. This does not replace turning and positioning a regular intervals; it just adds a beneficial factor.
This two-sided form is merely a table. Completion requires only the nurse’s initials and use of a code to quantify and qualify the stool.
RX MEDICATION TRANSLATION: EXHIBIT 9
STOPPING…PULLING THE PLUG
Both of our patients at home expressed the desire to continue to live, even with restrictions, and neither had “Living Wills” or Do Not Resuscitate (DNR) orders, which indicate the situations under which they would not want heroic efforts undertaken to save their lives. This made our decisions easy in case something life-threatening should occur. The younger patient has had over a decade of life that she has generally enjoyed after her life-threatening episode in the hospital. The elderly patient, after nearly dying in the hospital, returned home, had a few “good” months, then lapsed into a period of long sleeps and only occasional lucidity, sometimes seeming to enjoy the company of her nurses and relatives, but usually seeming to be unaware.
Based on my experience with my wife, I [DWC] wrote the following several years ago:
Some people argue that it is a waste to spend our resources on the disabled, especially as they get older. I disagree.
We value things on the basis of their usefulness and their scarcity. Water is useful, but widely available, thus generally inexpensive. Silver has practical and monetary uses and is relatively scarce, so it is much more expensive than water.
We do not know how long we will live. As we get older, we know there is less time left; it is scarcer. If we can make good use of it, enjoy it, be helpful, whatever, then the scarcity enhances its value. Even if what we do is not as good as it was years before, the years we have left can be quite precious. Tina’s life is precious, as is my own.
Some social planners come from another perspective, viewing public funds for medical care as investments. Babies who are unwanted or unlikely to survive do not merit investment, in this view. Your productive value goes up as you grow up, become educated, enter the work force. Toward retirement, your productivity may decline. At the very least, you have only a few more years in which to produce. These planners are reluctant to “invest” much more in you. Time to “pull the plug” on Grandpa or Grandma. Get that Do Not Resuscitate (DNR) order signed and let them expire with the next heart attack. This approach is “rational” from a public-expenditure viewpoint, though it takes no account of the value of the ill person to himself and those who care about him. It is part of a slippery slope that goes from not treating to euthanizing.
Tina’s care has been expensive. We’ve spent money and IBM has spent more and Medicare has had a share. We certainly expected to help pay our medical costs. IBM recruited me partly though the attractiveness of its medical benefits program, which I knew we might someday need. When IBM wanted to cut its work-force, I volunteered, again considering future medical coverage needs. That leaves Medicare: decades of withdrawals from my pay checks have gone to this program, with the notional “locked-box account” for coverage of my family and me. As with other insurance, some people end up needing more and others less, a lottery of sorts. Fair enough, we thought. Now, some suggest we are “selfish” to be getting “more than our share” of medical coverage. We are not exactly winners of a lottery, but no one argues that winners of lotteries are “selfish” for collecting “more than their share.”
Although I am glad we have done what we could for my [DWC’s] mother, it is less clear that she benefited from the heroic efforts made.
Sometimes, stopping will be less dire: the patient is cured, or the patient is not cured but needs a different environment to heal.