Posts Tagged ‘Hospice’

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If She Yells ‘Help Me’ – Poster Therapy to Convey the Needs, Identity of an Ailing Parent

July 23, 2014

Joan Melton, MSN, lives in Indiana.

Photo by Ann Gordon, via Flickr

Photo by Ann Gordon, via Flickr

I am a geriatric nurse practitioner and have also been the daughter to an ill, aging parent. I felt well trained for my professional role but struggled with the latter.

I joked that, despite my logical understanding of what was going on with my mother, it could be hard to accept her physical and functional changes, which sometimes seemed to fly in the face of logic. There were days Mom’s hospice nurses spent more time with me than with my mother. They’d sit and allow me to vent my frustration at watching my mother slowly leave me, at feeling overwhelmed and “losing my cool” with her, at not being able to practice the advice I’d so readily handed out to so many other families over the years, not being able to “fix it” and successfully comfort all of Mom’s fears and ailments 24 hours a day, seven days a week.

Yes, I know how unrealistic that last statement sounds. Thank goodness for hospice nurses, who reminded me that I was “the daughter” and did not need to be “the nurse practitioner.” They reminded me that as the daughter I had amazing insight no one else had.

So, when Mom spent a week in the nursing home to give my family some long-overdue respite time, her hospice nurses suggested I share all of my rich, personal, daughterly insight.

Their idea was brilliant. It made me feel useful and allowed me to feel less guilty about taking Mom to the nursing home. Most of all, it reminded me of who my Mom really was behind the mask of her dementia.

Mom’s health issues had begun with chronic, recurrent atrial fibrillation. Placed on Coumadin for stroke prevention, she fell, hit her head, and had a cerebral bleed. She was taken off Coumadin, and during her recovery had another episode of atrial fibrillation, this time suffering a thrombotic stroke that left her with memory problems and expressive aphasia. In addition, Mom was blind from the effects of glaucoma and macular degeneration.

In summary, Mom was unable to walk by herself, couldn’t find words to say what she wanted to say, and could only see shadows. Naturally, she became fearful and frustrated as her world closed in on her. Confusion and anxiety were side effects of her condition(s). At times, she was so anxious that she became short of breath. Her oxygen levels would drop, and her confusion would get worse. In addition, her appetite changed. She lost weight, and like many elderly patients, she had recurrent urinary tract infections from not drinking enough fluids.

Two posters. Before it was time to take Mom to the nursing home, the hospice nurses suggested I make two posters to display in her room. They suggested that on the first I list who my Mom was behind the mask of her dementia. What did Mom love to do before she became ill? They also suggested I put photographs of Mom on the poster to show what she’d been like before she became so frail.

On the second poster they suggested I write things to help the staff at the nursing home take better care of Mom, tips that only I knew from my past experiences as her caregiver and her daughter. Seeing these things written on a poster and displayed in her room would serve as a reminder for the staff, and would provide an easy way to share important information about her to all the different staff members who would be involved with Mom’s care.

I took the nurses’ excellent advice and began making the two posters. The entire family helped. Mom’s posters were the talk of the nursing home. People would come into her room just to read them. Here are a few examples of what we wrote:

Poster #1
Mom loves flowers, especially zinnias.
Mom’s was married to Dad (name) for 51 years. Dad went to heaven eight years ago.
Mom had five children (we listed their names). Mom calls out for her oldest son.
He and his wife took care of Mom at home.
Mom loves to waltz and old-time country music.
Mom loves to talk to her sister (name) on the phone every day. Mom is extremely close to her sister. Their mother died when they were only four and six years old.
Mom loves cooking for her family. She makes the best fried chicken.
She loves listening to the Catholic mass on TV or praying the rosary.
Mom loves going to the country, raising cows and bottle feeding the baby calves. She would give the cows names like pets.
Mom loves having her hair fixed and putting on make-up and looking nice every day. Read the rest of this entry ?

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Intensive Care of a Different Ilk

May 9, 2014

MayReflectionsIllustrationThis month’s Reflections essay (“Intensive Care”) is by John Fiddler, an NP who describes his work as an inpatient hospice nurse in New York City as being “as close to the ideal of nursing as I have ever been.”

This is a big claim—but if you read Fiddler’s brief, artful summary of the evolution of his nursing career, which started in an actual ICU, and then his description of what he found when he went to work in a hospice, you might find that he makes a pretty good case.

Here’s a small excerpt:

Inpatient hospice to me was the room at the end of the palliative care corridor that I had never bothered to visit. I had pictured it as a quiet haven for the dying, where birds chirp outside and music is heard playing through open windows as patients calmly drift off and up into dusty shafts of sunlight.

Not quite.

Instead, picture a unit where patients arrive on stretchers in extreme pain and distress, afraid, breathless—usually with families trailing behind, holding on to as much emotional and personal baggage as they can carry. Often these patients bear the physical and psychic bruises of a prolonged ICU stay.

And this is what happens here…

Maybe the author will someday find another ideal of nursing care, or maybe he won’t, but it’s worth reading his account of the current one. Reflections essays are open access. (Click through to the PDF version for the most attractive, readable version.)—Jacob Molyneux, senior editor

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Nursing Blog Links, Late Winter Edition: Emotions in Primary Colors

February 18, 2014

By Jacob Molyneux, senior editor/blog editor

by doortoriver, via Flickr

by doortoriver, via Flickr

Nurses seem to have hope on their minds as the daylight grows longer and stronger and the winter ever so slowly winds down. There’s a good post at According to Kateri about hope and letting go of the past.

Which reminds me: sort of along these lines, we recently had a good post here at Off the Charts about hope and patient prognosis.

Theresa Brown’s latest at Opinionator, a New York Times blog, is about the communication gap between clinician and patients and the need to find ways to bridge this, for everyone’s sake.

There’s a post at Not Nurse Ratched about another of the more basic emotions: anger. Or, more specifically, anger related to workplace issues that are slowly driving you nuts. Not that any nurses can relate to that . . .

If you’re up for it, here’s a pretty profound post from Hospice Diary about someone who is very articulate about the meaning of his own dying process.

And here’s a kind of funny one at Nursing Notes of Discord about the questions a new nurse asks in the course of a day.

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A Focus on Meaning and Attitude: This Week’s Nursing Blog Post Suggestions

November 13, 2013

By Jacob Molyneux, AJN senior editor

'Autumn Washed Away,' Diane Hammond/ via Flickr

‘Autumn Washed Away,’ Diane Hammond/ via Flickr

Here are a few recent posts by nurses that you might find of interest. As I put this together, a theme emerged, so it seemed fair to just go with it. Maybe the approach of these bloggers has to do with the time of year, the shorter days and colder weather as we approach the winter holidays . . .

At the intriguingly titled Nursing Notes of Discord blog, there’s a short reminder post with a fairly straightforward descriptive title: “Anyone Can Make a Positive Difference.” And, the author points out, you “don’t even have to be a nurse” to do so.

At Digital Doorway, Nurse Keith has a recent post that also focuses on positivity, this time about one’s profession: “For Nurses, ‘Just’ Is a Four-Letter Word.”

At HospiceDiary.org, in the lovely post “Leaves, Geese and Other Ramblings”—as the below quote may suggest—we find another angle on this theme of being present and focusing on the good in the midst of sometimes constant, poignant awareness of change, loss, dying, and rebirth:

Fall moves into winter. Unequivocal  fact. The furrowed fields and leftover husks are what remains of a harvest of work . . .

Read the rest of this entry ?

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Come Into My Parlor

September 27, 2013

Amy Getter, MS, RN, lives in Eugene, Oregon, where, in her own words, she “works with people with life-limiting illness who are enrolled in a hospice wherever they consider ‘home.'”

by Ramon Peco/via Flickr

by Ramon Peco/via Flickr

I fondly remember becoming acquainted with my first “parlor,” in a 100-year-old home that my family moved into during my teen years. The walls were dressed in faded, peeling, paisley-patterned wallpaper and a tarnished brass chandelier hung from the ceiling. French doors closed it away from the rest of the living area, giving it a slightly mysterious aura. Far-off city lights blinked at me from elongated paned windows. I immediately claimed it as my bedroom.

The word parlor (derived from the verb “to speak”) may have first been used in medieval monasteries. An “outer parlor” was designated for receiving outsiders and attending to business needs and the “inner parlor” was for the monks’ private use. During the mid-19th century, formal parlors evolved and could be found in homes like the one my family lived in.

Weddings, funerals (being “laid out”), and other social events occurred in the parlor. Home businesses emerged (such as “funeral parlors”—offering an option for laying out the deceased in someone else’s home!). In recent years, care of the infirm and preparation of the dead have been removed from the home, along with their unpleasant reminders of frailty and mortality, relegating the ailing to hospitals and nursing homes where they can die unobtrusively, apart from the daily existence of families.

I read a book when my children were young called Nana Upstairs and Nana Downstairs*—the story of a little boy who every Sunday visits the multigenerational home where his grandmother and great grandmother live. Nana downstairs makes meals and cookies and provides loving care for Nana upstairs, who sits in a chair, bundled in blankets. Little Tommy learns about families caring for each other, until Nana upstairs dies.

For many families, not only is Nana upstairs not allowed to stay in the home, but she is sent to a special “home” where strangers take care of her, and when she dies some strangers will take her body away in preparation for a funeral. Read the rest of this entry ?

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House of Death, House of Life: Reflections of a Hospice Volunteer

August 9, 2013

Perhaps the fundamental requirement for hospice volunteers is an open mind. Assumptions and first impressions rarely predict reality. I met a soft-spoken woman who was once a nun, then later became a theme park belly dancer. I met an ex-Marine officer and small-town police chief, a self-described “soldier by nature,” who denounced all wars after 1945 as senseless bloodbaths. I met a former civil rights activist upset that minorities were moving into his neighborhood.

lllustration by McClain Moore. All rights reserved.

lllustration by McClain Moore. All rights reserved.

That’s from the August Reflections essay in AJN, “House of Death, House of Life.” The author, Ezra Ochshorn, explores the moments of tragedy and levity he encounters in his work as a hospice volunteer, the powerful impression made on him by people who are either at peace or full of “bitterness and regrets” as they approach death, his realization that his most important task is to be in the “here and now” with each person—and then to do his best to take this lesson back into his own life.

But why not read the entire short essay, since it’s free? Just click the link above.—JM, senior editor

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Birdcages: An Oncology Nurse on Crucial Information Patients Need About Dying

April 10, 2013

Julianna Paradisi, who blogs at JParadisi RN and elsewhere, works as an infusion nurse in outpatient oncology. Her art has appeared several times in AJN, and her essay, “The Wisdom of Nursery Rhymes,” was published in the February 2011 issue.

I grew up in a family in which occasional conversations about death occurred at the dinner table. My father openly discussed his own. As a child, this terrified me, but he would say, “It’s a terrible subject, but everyone dies someday.”

by Julianna Paradisi

by Julianna Paradisi

I don’t remember how old I was when my father made me promise he’d be cremated and his ashes spread over the ocean upon his death. It feels like I always knew, and this knowledge comforted me when, a few years ago, my siblings and I spread his ashes from a boat over the Pacific Ocean where he used to fish.

Paradoxically, in other contexts my father struggled when it came to telling me about death. Starting when I was around three years old, in the springtime, he would sometimes bring home baby birds that fallen from their nests. He kept an old birdcage for this purpose. He let me name the birds, and I called each of them Jimmy. He taught me to mix small pieces of bread with watered-down milk, and then feed it bit by bit into their disproportionately large mouths with an eyedropper.

This ritual usually lasted two days. On the third morning, I’d wake up to find the cage empty. Every time, I ran into the kitchen where my father drank coffee, crying, “Daddy, Jimmy’s gone!” Every time, my father answered, “Sweetheart, Jimmy got strong. I let him go with his friends.” And I would be pleased that my father and I had saved another life.

I was 20 years old, visiting my father, when I said, “Dad, remember how you and I raised all of those baby birds, and let them go, when I was a kid?”

He paused, looking me in the eye. “Sweetheart, those baby birds all died. I got up early in the morning, wrapped them in paper towels, and threw them in the garbage before you woke. It’s very hard to save the life of a baby bird. I thought you knew.”

I didn’t know. All those years, I believed the baby birds flew with their friends. I knew my father would die someday, and be cremated. I didn’t know my baby birds had died.

I often think about this disconnect. For my father, it was easier to talk about his own death than to tell his three-year-old her baby birds died. Logically, it makes no sense, but that is often the case with our emotions. We know what we feel, and our emotions force logic to its knees.

As an oncology nurse, I see a similar disconnect regarding advanced directives and POLSTs (physician orders for life-sustaining treatment). Having this information available before imminent death provides direction, but does not prevent emotion from leading the charge. This is because, in my opinion, when death is imminent, it’s not the what to do that is in question; it is the when to do it that patients struggle with.

Oncology care has improved enough that many patients enjoy good quality of life even days before death. They are confused when told they are dying. Where are the feeding tubes? Where is the vegetative mental state? Their deaths do not resemble the description found on the advanced directives. Patients and families are confused about when to implement POLSTs and advanced directives. This includes patients who are also physicians and nurses. They are often more confused, because they do not wish futile care. In my experience, they frequently ask, “When should I stop?”; for many, the end is insidious. I have witnessed many express the surprised wonder of a child when told, “You are dying.”

This suggests that for advanced directives and POLSTs to be effective, every patient needs information about what their deaths may look like at crucial treatment points. Otherwise, like the baby birds I force-fed as a three-year-old, oblivious to their fates, patients will continue to accept and receive treatments beyond logical hope.

To accomplish this, palliative care referrals should become standard of care upon diagnosis of late-stage cancers—not for the purpose of relinquishing hope, but to provide access to a dedicated care provider able to answer questions and help guide end-of-life decision making. Pregnant women are provided weeks of education for childbirth. Is it logical that dying patients will need less?

There will always be patients and their families compelled to exhaust medical treatment in the hope of avoiding death; however, with earlier intervention of palliative care, more patients will have the education they need to implement their advanced directives and POLSTs.

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Precarious Hope: A Hospice Nurse Balances Truth and Kindness

December 14, 2012

This couple might be your elderly neighbors: he helps his wife into the house as she moves slowly, step by unsteady step, in time with her four-point cane; at the same time, you know that he is recovering from recent chemotherapy treatments. Or they may be your aging parents: your mother’s role as primary caregiver hampered by her right leg weakness from a stroke and advancing heart disease, while your father needs more care from day to day as his renal failure approaches the decision to begin dialysis or not. They support and care for each other.

PrecariousHopeIllustrationThe December Reflections column in AJN, “Precarious Hope,” is by an RN case manager at a hospice. She describes a couple in which one partner has dementia and the other has cancer, their mutual dependency, and the challenge of knowing how best to care for them:

In hospice, I’m often confronted with the difficulty of balancing honesty with kindness. I love a quote often attributed to the Buddha: “When words are both true and kind, they can change our world.” It follows that sometimes what is true is not kind, and that truth must be cloaked in kindness—as in this instance, as I sit at the table listening to George, whose hopeful, unrealistic comments confirm that he simply can’t hear the truth.

It’s a sensitive portrait of love, the fine line between self-delusion and perseverance, and the way that sometimes simply bearing witness is the best way to help someone. The essay is short, and well worth your taking a moment to read in entirety. It’s also open access, so click on the article link above or on the illustration itself, give the essay a read, and let us know what you think. (For the best version of the article, click through to the PDF version.)—Jacob Molyneux, senior editor

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Web Roundup: Changing Specialties, Measuring Quality, Caring and Freeloading, More

September 19, 2012

by Ramon Peco/via Flickr

Here are a few things worth noting on the Web today. At Code Blog, “Rookie Mistake” is illuminating on the subject of switching nursing specialties. Here’s a short excerpt:

My new hospice job is going pretty well.  I really like it.  It’s been an adjustment, but worth the stress of change.

Overall, I’ve been pretty surprised at how little I know/knew about how people die naturally.

In ICU, if you are actively dying, you look terrible.  In most cases, people dying in the ICU are there because we were or are trying to save their life.  This requires some treatments that cause other problems. . . . That is what dying looked like to me for 14 years.  Turns out it’s a pretty exaggerated version of how it is when people naturally die without life-saving interventions.

Also notable: a short post that many may relate to about paperwork and burnout, at The Nurse Practitioner’s Place.

In other news, Kaiser Health News reports that the Joint Commission is releasing its annual list of hospitals that have done well in following certain crucial procedures and protocols:

The commission is recognizing 620 hospitals (download list as PDF or .xls file) – 18 percent of those it accredits — as “top performers” for following recommended protocols at least 95 percent of the time.

Congrats to those who made the list. But a caveat: The article does note that there’s “an ongoing debate” about whether process measures or outcome measures better reflect quality of care. And in truth, we’ve heard complaints from many nurses about process measures and their potential unfairness/inaccuracy. What’s your take?

Note also this article on the retirement of a “nursing legend,” and a fantastic piece at the Health Affairs blog called “Caring, Freeloading, and the Fate of the Affordable Care Act,” which makes this observation:

At the heart of the case for medical coverage for all isn’t the public’s health; it’s private tragedy.  Serious illness plunges people into a realm of Dickensian choice.

And if you haven’t, check out the CE articles in this month’s AJN: “Postoperative Delirium in Elderly Patients” and “Outcomes and Complications After Bariatric Surgery.”

Lastly, “At the Eye of the Storm,” this month’s AJN Reflections essay, is by a nurse who describes the struggle to make the right decision, along with siblings, about her gravely ill father’s care. Wanting to avoid overly aggressive measures, she nevertheless does her best to respect what her father would have wanted.
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Talking About Death: Not Nice, But Necessary

July 25, 2012

Photo by Eliza Peyton, via Flickr

By Amy M. Collins, editor

Our recent blog post on “death panels” triggered a memory of my own first real experience with the death of a loved one. It was a little over 10 years ago. I was living overseas when my mother called to tell me my grandfather had liver cancer and had been given maybe a year to live.

The physician had given my family three choices: the aggressive choice, chemo; a less aggressive treatment with an experimental drug that had moderate success; or to let him live out the rest of his numbered days. We chose the middle ground.

At the time I worked in medical publishing and thought I knew everything. Over the weeks that followed I would call home to get progress reports, usually putting my two cents in about what my family should be asking the physician. Finally, when things seemed to be getting worse, I flew home to help.

Nothing could have prepared me for the emaciated man I found sitting up in bed when I went to my grandparents’ house to visit. I hardly recognized my grandfather. It hadn’t been that long, but the cancer had already ravaged him. Despite this, he was cheerful and had high hopes. He didn’t seem to think dying was a possibility.

“When we go to the doctor, you can talk to him. Tell him I want to live,” he said. I remember him being positive as we discussed the plan of attack. He seemed glad that someone else would know what to say to his health care providers . . . but inside I felt like a fraud. I wasn’t a nurse or a physician. I was just a medical editor who knew there was little to be done.

Despite his energy that day, within my short visit home he worsened dramatically and was hospitalized. While there, he was mostly in and out of sleep, and I assume, in great pain. There were horrifying moments I won’t describe here. It was a few days before we even saw his physician. When we did, he was in a rush and barely stopped walking as I chased him down the hall, asking him what we could do next.

He paused for a moment. “Well, we can try chemo, but he’s very weak. It will probably kill him. Or you can let him die at home,” he said before leaving with no further instructions.

As he walked away, I felt myself start to lose it. What should we do? What would he have wanted? What did going home and ‘letting him die’ entail? How do you make a decision like that in three seconds, with a harried physician who’s clearly fitting you in and already spending too much time with you? Read the rest of this entry ?

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