Life, Death, and Other Matters of Consequence: Part I

As healthcare professionals, we know that there really are fates worse than death.......namely, going on and on like this. Nurses Announcements Archive Article

Life, Death, and Other Matters of Consequence:  Part I

With the advent of chill winds and falling leaves, it almost seems as if the world is in a hurry to finish its business before winter comes: animals grow thicker coats and store up food for the long, cold months; flowers fade and vines wither; humans stock their pantries in anticipation of the upcoming holidays. And all too often, the change of seasons heralds not only the end of the year, but the lives of the sick and old.

Letha* was a ninety-year-old, ninety-pound train wreck of a woman who arrived on my long-term care unit the day we turned the clocks forward last spring. She had previously been healthy and independent, but a series of strokes followed by medication-induced diabetes had robbed her of most of her sight, as well as her ability to walk, toilet herself, and perform most of her own ADLs. She was alert and cooperative, and she never complained, but with fingersticks and insulin coverage, plus two large decubiti, plus frequent urination, she required a lot of care.........just what we needed on a unit that was already overpopulated with IDDMs and wounds and LOLs with half-ounce sized bladders.

And then, there was Letha's family.

Letha had three daughters and a son, and the most polite way I could describe the daughters was 'intense'. These women were at the facility a minimum of 16 hours a day, endlessly fussing over Letha and demanding that we wait on her hand and foot whenever they were out of the building. Letha had a twenty-minute ritual for mouth care in the morning, and an equally involved routine at night. Letha needed to have her feet elevated just so whenever she was in bed. Letha may not drink any juice other than cranberry. Letha was not to wait more than two minutes for assistance after pushing the call light. Letha must get up for all meals, but be in bed for the night no later than 1930. Letha's 'needs' were so numerous, in fact, that they didn't fit on our one-page care plan form, so a PeeChee folder with the play-by-play was placed on her closet shelf for staff reference.

Well, as is usually the case with these situations, Letha herself was not the problem. Her sweet nature and cheerful outlook made her an instant favorite with other residents and staff alike, and despite some dementia, she had such a quick wit about her that we were always taken by surprise. One afternoon as I was checking her blood sugar, I was bemoaning the sad state of her fingers, all of which were so bruised and mangled from QID fingersticks that I almost couldn't bring myself to do the deed; instead of complaining, she quipped, "It'll hurt you worse than it does me, 'cause I'm gonna take a bite out of your arm before you do it."

Weeks, then months slipped by as Letha began to grow stronger with the help of our physical therapy team and the ubiquitous presence of her daughters, who continued to encourage/force their mother to do things she didn't want to do in order to achieve their goals for her (which, as many of us privately believed, included staying alive forever). For a while, it looked as if she might just walk again.....until she caught a bad cold that promptly turned into pneumonia. We administered antibiotics and breathing treatments every four hours round the clock until she was out of danger. She contracted C. difficile after this episode and landed in the hospital, then returned with several new medications added to the orificenal of drugs we had to crush and administer, one at a time, due to her dysphagia. She followed up with yet another mild CVA a couple of months later..........and in the meantime, more and more tasks were being added to her care plan by her ever-vigilant daughters, who spent much of their time complaining to management about what they called "the lousy care that's killing our mother".

Naturally, we nurses and aides resented the implication that our unwillingness to ignore our other 28 residents so we could tend to Letha every waking moment was "killing" her. As much as we loved her, there simply weren't enough hours in the shift to fulfill all her daughters' demands, and frankly, she was NINETY......and in bad shape to boot. What did they expect from us, anyhow? Miracles?

On a personal level, however, this went far deeper than simple annoyance with a fussy family. I have long been angered by our society's refusal to acknowledge death as a fact of life. I see it every day in the faces of elders whose bodies are still here, but whose minds and memories have long since deserted them........the pain-filled eyes of patients in the late stages of cancer...........the epic waste of limited resources on treatments that merely prolong the inevitable. And in many cases, they endure it all only because their families can't (or won't) let them go.

It was obvious that this series of downturns was a signal that Letha was getting tired, and we often talked among ourselves about how we wished her daughters would stop pushing, pushing, pushing and let Nature take its course.

~Continued~

*All names have been changed to protect the privacy of the individuals involved.

Long Term Care Columnist / Guide

I'm a Registered Nurse and writer who, in better times, has enjoyed a busy and varied career which includes stints as a Med/Surg floor nurse, a director of nursing, a nurse consultant, and an assistant administrator. And when I'm not working as a nurse, I'm writing about nursing right here at allnurses.com and putting together the chapters for a future book about---what else?---nursing.

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Specializes in LTC, assisted living, med-surg, psych.

I've been a nurse for a long time, but I still can't wrap my mind around people who consider their own needs before those of their frail, elderly loved ones, especially when the loved one in question is clearly in physical, emotional, and/or spiritual distress due to a terminal condition. And while it can be said that life itself IS a terminal condition, most folks don't really believe it until they themselves are faced with an end-of-life situation.

Letha, for her part, was declining with as much grace and dignity as possible, even if her daughters did refuse to give up the fight. We continued aggressive rehab and treatments, even though there wasn't a single part of her body that wasn't already bruised (thank you Coumadin), disfigured (rheumatoid arthritis), or painful (decubs on the coccyx and left hip, plus several old fractures due to osteoporosis). Through it all, Letha kept her sunny attitude and never resisted care, even when her daughters nagged at her to eat her dinner when she hadn't been able to keep breakfast OR lunch down. One night, though, after I'd received report of yet another bout of nausea and vomiting, I intercepted the daughters as they marched into Letha's room and, seeing her still in bed, began to lecture her about the necessity of getting up for the evening meal. I will never forget the look of gratitude on her face when I finally put my foot down:

"No, your mother is NOT getting up for dinner. She has been throwing up all day, and I will not make her get out of bed if she doesn't feel like it," I said, firmly, but kindly. "She is clearly ill, and she needs to rest. I don't think you'd rather have her stay sick longer, and perhaps get dehydrated."

Ironically, the daughters seemed to back off a little after this incident. Actually, they did more than back off---in fact, they became rather friendly with me, and even began to ask me for advice on occasion.......in particular when they wanted an honest opinion, rather than sunshine blown up their noses. I still thought they were being selfish in wanting "everything" done for Letha, up to and including a feeding tube and a ventilator along with CPR, but when push came to shove, it wasn't my place to judge what was in another person's heart; and I knew that if the situation ever arose, I would do everything in my power to save Letha.

Then, the lesions showed up.

Just a couple of scabby-looking growths on the scalp, barely noticeable at first, but within weeks they had turned black and red, grown to the size of quarters, and were threatening to spread further. The daughters conferred, and the son---a lone voice of dissent who had long since understood that he was outnumbered---agreed that the lesions needed to be biopsied. A tiny pilot light of dread sprang to life beneath my usual calm demeanor; instinctively, I sensed that the outpatient procedure was a terrible idea, and that it would be far better for all concerned for Letha to go on hospice and be kept comfortable instead. What was the family planning to do if the lesions were cancerous, as we all believed them to be? Make her go through chemotherapy? Radiation? More surgery? At NINETY?!

Letha, herself, seemed resigned to whatever fate had in store for her. "I'm tired, and I'd just as soon go home and be with Henry (her long-dead husband). But Judy, she and the others make those decisions, and I just stay out of it. I know they do it because they love me."

The day after the melanomas were removed, I saw on the 24-hour report sheet that Letha had had a low-grade temp on day shift, but no other concerns were noted, and nothing had been said in report. I normally didn't go in to see her until around 1700 to do her fingerstick, but just as I was preparing to go check on her, two of the CNAs came tearing up the hall to the nurses' station to report that she was minimally responsive and had a fever of 101.6 degrees Fahrenheit. I ran in to assess her and felt my heart drop like a stone: she was in septic shock!

Now, having worked ICU more than a time or two, I've seen firsthand how fast such an illness can overwhelm even the relatively young and healthy. Letha was old and frail, and she wasn't going to make it if she didn't get to the hospital, STAT.

I never hesitated. As much as I would have wished for Letha to be allowed to slip away quickly and quietly, it wasn't my choice to make, so I called 911. I called the primary care physician. Then I called her family. It was the right decision. No more than ten minutes elapsed from the moment I'd walked into the room until the EMTs bundled her into the ambulance, but her BP was already down to 70/30 and she was no longer responsive even to painful stimuli. I thanked my aides profusely for their quick action and made a mental note to mention their contributions in an Above and Beyond slip on the employee bulletin board; then I went back to my usual duties, more or less certain that we'd seen the last of our sweet Letha, and whispered a short prayer that all would be well with her, regardless of the outcome.

~Continued~

Specializes in LTC, assisted living, med-surg, psych.

After Letha went to the hospital with lights flashing and sirens screaming, life back at the nursing home rapidly returned to normal. As the days passed with no word from either the hospital or the family, and no obituary announcing her passing, we all began to think she might have survived the sepsis after all, that she might even come back to us. Eventually, the good news came down that she had, indeed, successfully fought off the sepsis, as well as a nasty case of pneumonia AND a STEMI, and she would be coming home as soon as the IV antibiotics were finished.

The bad news was, the family now understood that this was probably the end. Though Letha had won the skirmish with death, it had weakened her to a point where she was clearly losing the war, and as the tough-minded oldest daughter, Judy, told our admissions director: "We've got to think about what's best for Mom now."

Hearing this second-hand, I began to question the actions I'd taken and the decisions I'd made on that fateful afternoon when Letha crashed. What had we 'saved' her for? I asked myself over and over. So she could suffer even more? So she could have another week, or two, or ten, of being sick and miserable? Of having no control over her life or even her surroundings? She would have been gone within a matter of hours if I hadn't intervened.........but I'd done what I was supposed to do, what I knew I had to do, and now we all had to live with it.

I looked in on her every day after she returned, despite the fact that she was on a different unit and the daughter who was staying in the hospice room with her, Annie, was very cold to me during my visits. I thought she blamed me for everything that had happened since that day, and as the days passed into weeks, I felt more and more guilty. I'd sneak into the room and look at Letha's pale, shrunken face and think maybe I'd been wrong about her. Could it be that she was taking so long to die because SHE didn't want to be dead, not because the family was having such a hard time letting her go? Her daughters had always said she was a fighter.......

The end came quietly yesterday afternoon, after almost five weeks of shallow, rapid breathing, bouts of agitation, the fever that nothing could break. Again, I wondered what it had all been for---I was glad Letha was out of her pain and felt relief for the family, but why had it been necessary for her to go through so many days of torment?

The answer---as so rarely happens in real life---turned out to be as close as the oldest daughter, Judy, who had come to our nurses' station to let us all know that Letha's struggle was over at last, and to offer thanks for the care we'd given her. "You were the nurse who sent her to the hospital that day, weren't you?" she inquired, as much of herself as of me (having been orphaned many years ago, I know how difficult it is to keep time and people in perspective for awhile after such a profound loss).

Oh, dear God, I thought, now it's coming. But what she said next still gives me goosebumps:

"I wanted to thank you for what you did for Mom. As you know, we've all had a terrible time facing the fact that her time was coming, and even though we knew we had to, we just couldn't bear to let her go. Because you acted so quickly when things went wrong, we were given the extra time we needed to be ready to let go. We will never forget that."

Then she hugged me, brushed a tear from her face, and walked out the door into the autumn afternoon, where red-and-gold leaves swirled madly as if in a rush to enjoy the last of their own glory before dying. :redbeathe

I love your last sentence. Incredibly evocative. As was the whole story, but that conclusion is powerful

Specializes in Hospice, Palliative Care, OB/GYN, Peds,.

So many times we question our actions, but always try to do what is best for the patient and family. I am working with a family now helping them make a decision about removing their mom from the vent. They have realized that she did not want to be on life support and they have been trying to keep her here for themselves, so she will be coming off on Friday. The docs would have wanted to do it sooner but the family was not ready so we had to sit doen with the doc and discuss everything and once he understood their reason for waiting until Friday, everyone was on the same page. I digress. Your story was so beautiful and loved your last line. :redpinkhe

Specializes in LTC, assisted living, med-surg, psych.

Threads merged for continuity

Girl, you are some kind of writer. Get that book out!

Specializes in LTC, assisted living, med-surg, psych.

Thank you. This story will be part of it, if and when I ever get it finished.:D

Mercy, how perspective changes when you're older and have begun to figure out what really matters. So much of what we think is important in nursing, like perfect care plans and the 'right' treatments, doesn't mean squat when you're dealing with a precious individual person, a human being unlike any other who has ever existed or ever will exist.

Sadly, we tend to forget that in our rush to get things done, finish the paperwork, tie up all the loose ends so we can keep our butts out of a sling and our facilities out of trouble with the State. I got pulled in yesterday during an investigation of an incident that occurred on my shift some months ago when a CNA didn't follow a care plan and a resident was injured, and I'm telling you, I was sweating bullets. No, I personally didn't cause the injury, nor would I have countenanced the CNA's not following the care plan if I'd known about it; but I was the shift supervisor and therefore bear some of the responsibility.

The thing is, I'm not so upset about the legalities---we (the facility) were clearly in the wrong, there's no defense for that, and I feel very fortunate that both my job and my license are secure. What I feel TERRIBLE about is the pain and suffering the resident has experienced as a result of the injury, and you can be sure I'm going to supervise my staff more closely in the performance of their duties........not because I'm afraid of getting in trouble, but because I love my residents and I never want sloppy care to endanger them again. Not on my watch!

Specializes in LTC,Hospice/palliative care,acute care.

Loved your story-especially the line about the autumn leaves.You REALLY have the knack for turning a memorable phrase... Your subject is the most frustrating aspect of my job in LTC-we actually were cited a few years ago and the DOH determined that "We are obligated to consider the resident's needs ahead of family's demands"

Specializes in ICU, Telemetry.

Now I'm sitting here crying.

Sometimes, I think half of this job is getting the families to the point where they realize there's something worse than Mom or Dad dying.

Hugs to you for being the voice of the voiceless.

:icon_hug:

Specializes in LTC, assisted living, med-surg, psych.
Loved your story-especially the line about the autumn leaves.You REALLY have the knack for turning a memorable phrase... Your subject is the most frustrating aspect of my job in LTC-we actually were cited a few years ago and the DOH determined that "We are obligated to consider the resident's needs ahead of family's demands"

Yes, it IS frustrating, and residents' needs/wants are what guide my decision-making in cases where the family's demands, or even facility policies, are in conflict with them. As far as I'm concerned, residents' rights trump everything else, and until someone with the authority to call ALL the shots steps in and says "This is the way it's going to be", I'm going to do what's best for the RESIDENT. Even if I disagree with it, even if it makes more work for the staff and/or myself.

I work with an RCM who wants all our residents dressed in hospital gowns at night, even the men who would prefer to wear pajamas and T-shirts and the women who'd rather stay warm and snug in their woolies. The rationale is, day shift doesn't bother to dress them if they're in any kind of clothing........so in other words, the residents don't get to choose their sleepwear because one shift is too lazy to put their clothes on in the morning??!!:angryfire I don't THINK so.......these people get soooooo cold in those thin gowns, and when they tell me they'd rather sleep in their sweatshirts, by God, I'm going to let them, no matter what anyone else says or how many times I have to argue with the RCM.

Specializes in Med/Surg/Ortho/HH/Radiology-Now Retired.

Marla ......... I think we're twins separated at birth! :)