In my experience. . . then and now

Posted July 29, 2015 by hpccr
Categories: advance directives, caregiving, dementia, end of life, hospice, Hospice & Palliative Care Charlotte Region, palliative

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Editor’s note: Every month, a medical student from UNC spends a two-day rotation with HPCCR.  They come on a Wednesday, attend an interdisciplinary team meeting, then accompany a clinician on a patient visit.  On Thursday, they spend the day at one of our inpatient units.  Many of them send us their reflections after the rotation is over.  The insightful reflection below was written by a student who was happy to have it published but wished to remain anonymous.

Past-Present-and-Future-signsIn my experience, palliative care and hospice includes caring for the family and guiding them as an essential part of caring for the needs of the patient.  Under good circumstances, loved ones are usually the real caregivers and, especially for those patients whose mind is slipping, the people in charge.  The patients I tended to on my day were memory care patients who were no longer able to direct their own care, thus making the responsibility fall to their family.

The families I met already had their loved ones in a care home.  They had likely already been through the tough conversations and turmoil that comes from recognizing the course of these diseases.  Their faces were weary and practical. I’ve seen these faces before when my own relatives were dying of slow diseases.  In my experience, the highest hurdle for a family is coming to terms with the situation, from an emotional perspective, to make decisions.

It’s such a closed-in, deeply personal process that I had always been curious how other families handled it.  I remember how front-loaded the deaths I’d seen were.  All the talks with family and staff, the home deliveries, and the plans for how to proceed gave a sense of purpose and structure to my family.  I get that same sense of purpose and structure from these families.

The services provided to these families by the Hospice & Palliative Care Charlotte Region staff are not unlike those of a somber mountaineering guide.  A group of people are going on a trip together and the guide provides logistical support and tries to keep people out of trouble.  Ironically for these patients’ journeys, the ostensibly heroic interventions are the ones usually avoided or counseled against.

The focus of most of the family meetings was really about establishing a relationship with the team and making sure wishes about care were followed.  I was impressed by how matter-of-fact everyone was. In some ways the hard conversations had already been had before these meetings took place and I really saw what it is like for this process to go smoothly.  The care team did a great job of helping them articulate what they wanted on paper without pushing them.  The particular families we were with mainly required explanation of what the forms meant, but had clear ideas about what they wanted for their ill relatives and what the relative would want for themselves.

I noticed how carefully the families were counseled about options they have, what to expect, the role of team, and who they can contact.  Emotions in these moments were muted, more expressed in pauses and silence, a healthy respect for the weight of the situation.  There is a certain stoic camaraderie between the team and the family that emerges in these conversations that is more familiar and realistic to me than the idealized hyper-empathy that sometimes feels expected.  I was glad to be part of the team for that brief time and to gain further understanding of how to help and support these patients and their families.

Removing the line

Posted July 16, 2015 by hpccr
Categories: advance directives, awareness, end of life, hospice, palliative

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by Andrea Powell, HPCCR Marketing Manager

draw-the-lineI read an article today that perfectly illustrates an important point that hospice organizations always try to drive home: hospice care is about what the patient wants.  It’s glaringly obvious when you read this insightful piece that sometimes what the patient wants might be completely unexpected and furthermore, might be in conflict with what the physician wants for that patient.  The truly compassionate doctor, however, will bypass their own judgments and opinions and do everything possible to accommodate the patient’s wishes.

The author, a hospice and palliative care physician, tells the story of “Ms. Weatherby”, a 57-year old hospital patient whose lungs had stopped working due to various diseases.  Ms. Weatherby was intubated, meaning she had a tube inserted into her throat and down her trachea, to help her breathe.  To say that intubation is uncomfortable, both physically and mentally, is an understatement.  But there was more.  She also had a feeding tube (through her nose) and a myriad of other tubes to help her with other daily functions.

Now, if this were me, I’d be miserable.  But apparently Ms. Weatherby was in fantastic spirits, very positive, and had her laptop open along with blank journals surrounding her, ready for her pen, so that she could communicate with her family and friends.

After several days in the hospital, the doctors were able to take the breathing tube out for a short period of time.  Ms. Weatherby was asked if, when her lungs weakened again, she would want the tube reinserted.  Her response?  An unequivocal yes.

Ms. Weatherby’s other doctors were incredulous.  They simply couldn’t understand her decision to be drastically uncomfortable during the brief amount of time she had remaining.  But her hospice physician wrote something in the article that resonated in its simplicity and virtue.  She said, “When advanced life support becomes comfort care, where do we draw the line?  Based upon what I learned from Ms. Weatherby, I would argue that palliative care begins by removing the line.”

So simple.  So profound.  So right.

Apparently, Ms. Weatherby had important work in front of her yet to be finished.  She had a broken family at odds with each other and she wanted to fix that break before she died.  That was much more important than the discomfort in her lungs and the fact that the rest of her frail body was slowly shutting down.  So in the short time she had left, she chose to be kept alive with all that medical technology had to offer, taking pure delight in very simple comforts — the ability to brush her teeth, warm socks on her cold feet, and communicating with the people she loved.  For her, that was enough.

I think the last thing any of us would want before we die is to be criticized for the final decisions we make.  Honoring last requests, no questions asked, is a very basic right as far as I’m concerned.  Ms. Weatherby’s hospice physician would maybe not make the same decisions if placed in that particular scenario, but she unfailingly honored her patient’s wishes.  She removed her judgments and biases from the equation.  And thus, she removed the line.

Growing pains

Posted July 9, 2015 by hpccr
Categories: awareness, careers, caregiving, cosmetology, hospice

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by Andrea Powell, HPCCR Marketing Manager

growing painsDo you remember when you were a kid and you’d wake up in the middle of the night and your leg would be aching?  Just this dull pain that you couldn’t ignore and that wouldn’t go away?  You were convinced something was really wrong.  But then your mom or dad would tell you, “Nothing to worry about.  Those are just growing pains.”  I still don’t know if that’s really what those pains were, but I can tell you it made me a little queasy to think that I could actually feel my body growing in real-time.  It was fine for my legs to grow longer.  I just didn’t need to know exactly when it was happening.

At HPCCR, we know when growth is happening.  And even though growth (for a hospice organization) is great, it can still create challenges.  Let’s look at the pluses: Growth means that more people are learning about hospice (Yay!  We’re doing our job!) and that more people are benefiting from the substantial advantages end-of-life care has to offer.  Growth means that we’re doing things right.

But the challenges are nothing to sneeze at.  An increase in census means more work for our staff — RNs, NAs, social workers, and all the rest of our clinicians have more patients to cover, administrative staff have more billing issues to handle and more paperwork to process, and more volunteers are needed to meet families’ needs.  We certainly don’t want our staff and volunteers to get burned out.  So what’s the solution?

We find more people.  Exceptional people.

Right now we are actively recruiting RNs.  In fact, we will be holding a job fair next week so that we can find amazing nurses who want a rewarding, flexible job with great hours and lots of autonomy.  Are you a compassionate registered nurse looking for something truly meaningful?  Do you know someone who is?  Then come to our career fair at our uptown office (1420 East 7th Street, Charlotte) on Thursday, July 16 from 2pm until 7pm.  We’ve got all kinds of positions to fill, from case management to admissions to after hours.

If you’re interested, you’ll need to fill out an application (by July 14) on our website (http://www.hpccr.org/careers/job-postings).  Just click on the link that says “RN CAREER FAIR July 16″ and then click another link at the very bottom of that page to create your application.  Then come to our office on the 16th.  But come prepared!  Our HR representatives will be conducting some on-the-spot interviews and you’ll want to knock their socks off, right?

And here’s another thing we desperately need: volunteer cosmetologists.  We only have two right now for all of our patients in Charlotte and that’s simply not enough.  Every single one of our patients deserves to feel good and look great.  And they certainly shouldn’t have to wait for that to happen because there are no cosmetologists to visit them.  So if you are a whiz with a comb or brush, or if you routinely make people look fantastic for a living, please get in touch with us.  Your heart will split wide open (in the best possible way) upon seeing the joy you can bring to a woman’s face when she feels beautiful again.

Kids are happy when their growing pains subside.  But as challenging as our growing pains may be, we kind of relish them.  Because, let’s face it, our growth means that we’re helping people in a critical way.  We are offering comfort and relief to patients and families all over North and South Carolina.  We are doing what we’re meant to do — supporting tired caregivers, soothing anxious souls, letting our shoulders get wet with tears of both joy and sadness.  We are filling our hearts with purpose and love.  Our census grows and our spirits soar from knowledge that WE ARE MAKING A DIFFERENCE at the end of life.

We’re growing.  Don’t you want to join us?

 

If you are interested in working for HPCCR, fill out an application and join us at our career fair at 1420 East 7th Street on July 16.  If you are a cosmetologist and would like to volunteer, please call Elise Hurst, Director of Volunteer Services, at 704.375.0100.  

Common values, common mission

Posted June 30, 2015 by hpccr
Categories: communities of faith, education, end of life, Hospice & Palliative Care Charlotte Region, religion, spiritual care

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by Carol Anne Lawler, HPCCR Faith Community Educator

summer campProgressive Baptist Church on West Avenue in Charlotte is a true friend of our organization.  Their pastor, affectionately called Pastor Mack, invited me to speak at their Wednesday night Bible study earlier this year.  I clearly remember the evening, as it had just begun to snow, and they wouldn’t even consider canceling the meeting!  They also hosted a “lunch ‘n’ learn” for us in March, a community-wide seminar entitled “What Hospice Can Do for You”, and one of the seminar’s participants recently became a hospice volunteer.

Just yesterday, I happened to be in the neighborhood, so I thought I’d stop by and say hello.  Precious, Pastor Mack’s daughter, church administrator, and now camp director, invited me next door to the recreation center, and I was most surprised at what I saw.  Progressive Baptist has opened its doors to the community and has organized a camp for 125 children, ages 4 to 17, Monday-Friday from 9am-5 pm for all nine weeks of the summer!  Although the cost to attend the camp is minimal, the skills the children are learning will be with them for a lifetime.

This week’s theme is selfishness.  They are learning what it is, how to minimize it, and how to cultivate generosity.  In addition to instruction, playing games, and participating in classes, they also receive breakfast, lunch, and snacks.  The children of west Charlotte are being well-taken care of by this caring faith community.

Hospice & Palliative Care Charlotte Region is proud to have an association with Progressive Baptist Church.  They remind us of the importance of living out one’s values in thought, word, and deed.  From the beginning of life to life’s end, Progressive Baptist believes in making a difference among the lives around them and also understands the importance of compassionate end-of-life care.

Our mutual relationship reminds me of what drives Hospice & Palliative Care Charlotte Region.  Among our core values: we hold the delivery of quality compassionate patient and client services as our highest calling; we act with integrity and dependability, and follow through in all aspects of our work.  Our relationship with Progressive Baptist Church deepens our own mission and values and continues to highlight the importance of a shared partnership that affects those we are privileged to serve.

We’re way past floppy disks

Posted June 25, 2015 by hpccr
Categories: awareness, dementia, hospice

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by Andrea Powell, HPCCR Marketing Manager

8-inch-floppyIt’s amazing to me that my kids are going to grow up not knowing what it’s like to live in a non-digital world.  I still remember when my dad brought home our very first (enormous) computer and we used floppy disks to run programs on it.  Floppy disks back then were, in fact, floppy — you had to be careful not to get fingerprints or dust on them lest they become completely useless.  It took ages to boot that computer up, yet we were mesmerized by graphics made up of only dashes, periods, and letters.

Nowadays, you give a 18-month old an iPhone and they will hand it back to you an hour later with six new apps, an updated screen background, and a witty post on your Facebook page.

Yes, technology has come a very long way.  But it certainly has its advantages. And we’ve seen some of them here at HPCCR.

It started several years ago when a former employee (a social worker) began taking her iPad with her on visits.  She downloaded a few apps she thought would resonate with her dementia patients, given their interests and backgrounds.  Well, the results were simply awesome.  Formerly non-responsive patients talked, sang, or moved their fingers over the iPad when enticed by the device.  It was as if a long-lost part of their brain, previously sleeping, had suddenly woken up.  Families watched in amazement as their loved ones regained some of their old, well-loved personality, if only for a few minutes.

Thanks to this innovative social worker, we realized how impactful technology could be with our dementia patients.  And now in 2015, all HPCCR social workers have iPads.  Having this tool has opened up a world of options to build relationships with patients who struggle to communicate.  The ones who seem like they’re not there.  The ones with family members who desperately miss them and would cherish even a few moments with the mom or dad or grandparent they used to know.

That’s why these stories make me so happy.  Connections are being made here on so many different levels — social worker to patient, patient to their past, patient to their present, family members to loved ones.  These visits are true gifts; snippets of time to hold on to when the veil falls back down and silence returns.

So here are just a few of the stories I’ve heard recently.  I plan to keep sharing them as they come to me, by the way, in case these aren’t enough to fill up your “good feelings” reservoir.  So be on the lookout.

Amazing Grace
“Mrs. H can’t really speak.  Her words are usually mumbled and no one can understand her.  One day I showed her the kaleidoscope app on the iPad.  She had difficulty at first using her finger to move the picture.  But then, as the colors would change, she started to hum Amazing Grace using the colors she was seeing as the words of the song.  So I then played Amazing Grace for her on the iPad and she just closed her eyes and listened while tears formed in her eyes.”

Hello Central, Give Me Heaven
“A patient’s husband told me his wife wasn’t really talking one day.  I asked if there was anything that would help me connect to her, such as a favorite song.  He said she used to really like Hello Central, Give Me Heaven by June Carter’s grandmother, Maybelle Carter.  I pulled up the song on my iPad, along with a picture of Maybelle Carter.  The patient took the iPad from me and sang every word.  When I told her daughter what had happened, she couldn’t believe it.”

Helping families too
“I was visiting a patient one day at an independent living community.  As I was going into the building, a gentleman approached me.  He said, “I know you.  You took care of my mom.”  He gave me her name and it triggered my memory.  He then said, “I knew it was you.  You’re the one who brought that iPad and you would play music for her each visit.”  I was so amazed because he chased me down in the parking lot to say thank you for doing that for his mom.  I always knew using the iPad was important for our patients but I learned that day it leaves a lasting impression on our families too.”

All I can say is thank goodness for technology and iPads.  And thank goodness for the breakthroughs our social workers have been able to make with these ingenious, small devices.  Without them, our social workers would be lugging horrendously large computers and dusty floppy disks on their patient visits.  Who knows how often those things would break down?  And then they’d have to find an 18-month old to fix them.

For more information about our specialized dementia program, visit hpccr.org or call us at 704.375.0100. 

Thank you, CNAs!

Posted June 17, 2015 by hpccr
Categories: advocacy, awareness, caregiving, end of life, hospice

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by Andrea Powell, HPCCR Marketing Manager

certified-nursing-assistant-emblemWe are in the midst of National Nursing Assistant Week and here at HPCCR, we want to sincerely thank our certified nursing assistants (CNAs) who consistently provide superior care to our patients and families.

Having the role of CNA in a hospice organization is an enormous responsibility and very tough job.  Nursing assistants must care for those who are confined to a bed, so they must possess physical strength to lift and maneuver the patient.  They must be compassionate listeners and have emotional depth because they are often the first ones to hear about pain and other insecurities.  Most importantly, they must truly care about their patients and their work.  And our CNAs manage to excel in all of these categories, regardless of whether they are tired, have worked a long shift, or are carrying a larger-than-normal caseload.  They offer the same exceptional care, day in and day out, and they do it with smiles on their faces and love in their hearts.

So this week, we honor all certified nursing assistants, those that we proudly claim as our own and the many others in this vast healthcare field.  If you know a CNA, please thank them and take the opportunity to tell them how important their work is.  A little bit of appreciation goes a long way.  And this week, no one is more deserving.

Matchmaking

Posted June 11, 2015 by hpccr
Categories: awareness, fundraising, hospice, volunteering

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by Andrea Powell, HPCCR Marketing Manager

matchmakerIs it just me or does life just seem to get crazier and busier as you get older?  I mean, I thought I was busy when I was in college — classes and studying and socializing — and then I thought I was really busy after college.  First job and all of that.  But then marriage and kids came along and now I desperately miss those days when all those classes and studying and all that socializing was what wore me out.  Oh, how times have changed!  Nowadays, every minute seems spoken for, every day planned to the nth degree.

Do you feel the same way?  Do you find yourself wishing you had time to cross off some of those items on your “meaningful things I’m going to do to make the world a better place” list?  Lucky for you, I’ve got a solution.

If you can’t donate your time, you can help HPCCR out in another way.  Here’s how: we have been included in program started by Share Charlotte to help out local not-for-profits.  The organizations create a wish list on Amazon (you can find ours on our Share Charlotte profile) and local do-gooders (that’s you) purchase items off the list to have them delivered right to our door.  Pretty great idea, right?  It’s a win-win.  We need the merchandise and you can feel good knowing that you have helped us out in a meaningful way.

What’s more, HPCCR is the Share Charlotte not-for-profit of the week!  They’ve been tweeting about us, writing articles about us, and generally making us feel all warm and fuzzy and very loved.

You should check us out; we’ve got great things on our wish list.  Fun items for the activity bags handed out to kids who visit our hospice houses, aromatherapy oils, iPads, fidget aprons for patients, snacks for our hospice houses and more!  To give you multiple options of price points, we created a varied list.  You can spend as little as $2 and as much as $500 (man, those iPads aren’t cheap!)  Any and all items are truly appreciated and will help us give our patients and their families an even better hospice experience.  And that’s what really matters.

So here’s an idea: how about we play matchmaker?  Let’s get your “meaningful things I’m going to do to make the world a better place” list together with our Amazon wish list and see what happens.  Who knows?  It could very well be the start of a beautiful relationship.

Visit our profile on Share Charlotte to see our Amazon wish list and also to learn about volunteer opportunities at HPCCR!


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