Challenging preconceived notions

Posted March 26, 2015 by hpccr
Categories: awareness, education, end of life, hospice, palliative

Tags: , , ,

by Everett Warren, UNC School of Medicine, Class of 2016

assumptions eye examI wonder how often it has been said that life is precious.  So often we are inundated with this idea.  Life is fleeting, not guaranteed, short.  What I have come to understand through my experiences with both palliative care and hospice is that what lies on the other side of life is just as precious.  That is, death itself is precious.  In some regards the process of dying demands more respect, honesty, and bravery than that of living.  The amount of audacity it takes for an individual to accept their inevitable fate, decide that comfort is more important than treatment, and approach their last breath with peace is quite possibly the most admirable and beautiful human act I have had the privilege of witnessing.  I do not believe I fully understood this concept prior to my palliative care and hospice experiences, and honestly, I believe this is largely because I was intimidated by the idea of death and having conversations about death, especially the idea of having a conversation about an individual’s death with that individual.

Our society discourages us from thinking about death.  From a very young age we are bombarded with the idea that death is morbid, dark, and off-limits.  This institutionalized mindset that death is taboo is hard to overcome, something I think I found personally challenging about this experience.  I realized that a patient is only going to be as comfortable in discussing their death as you are comfortable in discussing it with him or her.  While spending time with Hospice & Palliative Care Charlotte Region clinicians, I had the privilege of witnessing what I thought would be impossible conversations conducted multiple times with a wide variety of patients from all walks of life.  Each time, I was taken aback at how comfortable not only the physician or nurse was at leading this conversation, but also at how well the patient responded.  Yes, there were definitely patients and family members that were tearful and clearly upset.  Yes, there were moments when the patient would verbalize how unfair the situation was or how angry they were at the circumstances.  Yes, there were moments where it seemed like there was no right way to answer the questions the patient and their family were asking.  However, what was most apparent was that the patient, the patient’s family, and the hospice or palliative care physician were working together as one team with the same goals.  It was truly inspiring to see a physician take on a patient’s situation as their own in such a sincere and empathetic way while being so available for the patient.  I truly saw empathy go beyond what I thought possible during these two short days.  I aspire to live out empathy as a medical student, resident, and physician in the ways in which I saw it manifested during these two days.

Prior to this experience, I can ashamedly say that I really had no clue what exactly hospice or palliative care did, or that they were such different entities.  I had the ignorant misconception that as someone begins to deteriorate and the future is looking grim then that individual should be managed by hospice or palliative care, which basically took care of the patient until they died.  I did not truly understand how important the symptom management or goals of care conversations led by the palliative team were to individuals that were younger or had little chance of dying from their condition.  I had no idea that individuals could graduate from palliative care and go back to living the normal lives they led before they needed the services offered by palliative care.  I didn’t realize that individuals can only be placed under hospice when they only have six months to live based on the natural history of their disease state, and I definitely did not know that even if the individual lives beyond that six-month period, they may remain under the care of hospice by being re-certified.

Attending the interdisciplinary hospice meeting was truly an eye-opening experience.  To see a patient’s care be viewed and planned through so many different lenses and so many different facets challenged all preconceived notions I had that hospice was just some healthcare worker feeding a patient pain medication as they slowly died.  They truly identified the patient’s needs from all angles and offered them an extensive amount of services that I did not even know existed prior to attending the meeting.

Overall, I thought this was an incredible experience.  I would highly recommend it for future students.  It definitely impacted me in ways that I will take with me as a future physician, and I am incredibly grateful to the nurses, social workers, physicians, and most importantly the patients, for allowing me to glimpse the incredible entities that are hospice care and palliative care.

Tucking into the weekend

Posted March 18, 2015 by hpccr
Categories: awareness, end of life, hospice, volunteering

Tags: , ,

by Andrea Powell, HPCCR Marketing Manager

tucked-inMy nine-year old daughter is, for the most part, fearless.  Always has been. But over the past several months, she’s had a unique uncertainty arise: she balks at spending the night away from home. We’ve been puzzled because, in the past, this type of separation hasn’t been an issue.  But when we probed further, it became clear.  If she’s not in her own bed, Mommy can’t tuck her in at night.

I can’t argue with her.  Is there anything that makes you feel more loved and safe than being tucked into your bed at night?  I think not.

At HPCCR, we wanted our patients to have that safe, comfortable feeling too. So we did something about it.

A few months ago, we started something new that we are calling the Tuck In program.  We are not physically tucking our patients in at night, but we ARE calling them before the weekend rolls around to make sure they have everything they need.  Supplies? Check!  Medications?  Check!  Any other concerns we need to be aware of?

We have a group of volunteers who meet at our office and make these phone calls each Thursday morning.  Our volunteers either talk to the patients themselves or to a caregiver.  If there are needs or concerns, the volunteer then notifies a nurse who can coordinate any care needed.

Being customer-focused is extremely important to us.  Our patients are fragile and their comfort is our utmost concern.  The Tuck In program is just one more way to stay connected to the individuals who depend on us for their care.

It’s a new program so it hasn’t been rolled out yet to all of our home care patients, but it soon will be.  We just need to recruit the right number of volunteers to help us cover everyone and make sure we’ve got a call station prepared.  But the response we’ve received so far has been overwhelmingly positive.  Our patients appreciate the extra touch of concern and their caregivers like the reminder that we are only a phone call away.

Hospice patients are always going to have some fears about the future.  It’s nice to know, then, that we have the ability to provide comfort and peace of mind, especially before the weekend — a time often considered “off the clock” in the healthcare world.  But just like mothers will never ignore the needs of their children, HPCCR is never off the clock when it comes to patients.  Just like my nine-year old, our patients will always be comforted by an extra touch and loving care.  And a tuck in is always welcomed.

If you are interested in volunteering for this program, please give us a call at 704.375.0100 and ask to speak to someone in our Volunteer department.  A nursing background is helpful, but certainly not required, for our Tuck In volunteers.

Party time!

Posted March 10, 2015 by hpccr
Categories: blog, education, end of life, hospice

Tags: , , , , ,

by Andrea Powell, HPCCR Marketing Manager

?????????????????????????????????????????It’s time to pull out the paper party hats, turn off all the lights, and fire up some candles!  We’ve got a lot to celebrate this week at HPCCR!  If it were up to me, I would have baked a cake (it’s kind of my thing), but the people in my office would have (lovingly) kicked me out the door and locked it firmly behind them.  (Summer is right around the corner, after all!)

Anyway, on to our celebrations.  On Sunday, Hospice & Palliative Care Charlotte Region turned 37 years old.  That might not be old for us humans, but trust me, for a hospice organization, 37 years puts you in the class of “seasoned”, to say the least.

Also, on this very day five years ago (my, how time has flown!) I published the very first post on our blog, Hospice Matters.  Five years.  I actually can’t believe it.

First let’s talk about HPCCR.  We became an organization on March 8, 1978.  But we didn’t take our first patient until November of 1979.  And then we took eight more that year, bringing our total to a whopping count of nine.  Ok, let’s compare.  In 2014, we admitted over 3,000 hospice patients and somewhere between 1,000 to 2,000 palliative patients.  That’s some serious growth, folks.  In fact, since that first patient was admitted back in 1979, our total hospice admissions to date (through December 2014) is over 40,000 patients.  Not to mention the fact that we have grown from serving just Mecklenburg County in NC to now serving 11 counties in North and South Carolina.   That’s just outstanding.  It means that we have touched the lives of over 40,000 families in our large region, showing compassion and exquisite care to each and every one.  Every person in this organization factors into this equation.  Because, ultimately, we are all in it for the same reason.  To make end of life honorable, peaceful, and beautiful.

On to the blog.  I am very proud to say that during the five years that this blog has been published, not one week has gone without a post.  Not one.  This post, in fact, will be our 356th.  Our readership continues to increase as our social media presence grows and, as this blog habitually goes out on Facebook and Twitter, the reach of our blog is several thousand people each week.  Upshot?  Several thousand people know just a little bit more about end-of-life care than they did the week before.  Hospice Matters is a virtual stage with which we educate our community and where we demonstrate the impact of hospice care on real people who have benefited from our services.  These stories honestly write themselves; they are always emotional, sometimes uplifting, occasionally heartbreaking, but always worth reading.  They reflect the very heart of what we do and I am overwhelmingly honored to (so often) be their conduit to the “outside” world.

So in honor of these important “birthdays”, I am going to close my eyes and make a wish.  A wish that hospice care becomes the preferred choice at life’s end, that the fear surrounding death be relinquished, and that our enthusiasm for life continues until the very last beat of our hearts.

Of course, you can’t make a wish without cake. . . .

Honesty, respect, and love

Posted March 5, 2015 by hpccr
Categories: advance directives, cancer, end of life, hospice

Tags: , , ,

by Andrea Powell, HPCCR Marketing Manager

Hannah and her mom

Hannah and her mom

Readers, I try not to do this very often, but today I’m going to wreck your soul. So if you don’t feel like weeping (because that’s what happened to me), then don’t read the article that I’m going to share with you today.  But you should.  You really, really should.

I won’t get into too many specifics (because I expect you to read this remarkable story), but it’s about a young girl, Hannah Duffy, who found out when she was just 13 years old that she had a malignant brain tumor.  Her mother, Susan, received this news on her own 47th birthday.  Hannah had nine really great months and then she declined for about five weeks until her death.  She was 14 years old when she died.

There’s a good reason that I am asking you to read about Hannah.  (A really good reason.  Despite what you might think, I don’t like to cause you emotional distress for giggles.)  In this article, you will read about a surprising element of Hannah’s story — the honesty and openness with which her family discussed (with her) her illness and prognosis.  Her parents, her doctors, and her chaplain never hemmed and hawed.  Because of the enormous love they had for Hannah, they gave her the information she needed to know and they didn’t sugarcoat it.  They asked her about her fears (not being remembered), they answered all of her questions (will it hurt to be cremated?), and they acknowledged her requests (she asked her friends to wear pink high heels to her wake and asked them to sew her name into their wedding gowns when they eventually get married).  In short, the adults in Hannah’s world showed respect for her life by helping her know what to expect.  And that allowed her to dictate the rest of the time she had on this earth in a way that was fulfilling.

This is what it’s about, people.  Honesty, respect, and love.  Regardless of age.

Now, when you read this story (and you just have to), you’ll realize that this outstanding young lady was extremely mature and had an almost unworldly prescience that was beyond our understanding.  Just wait until you get to the part about 9:11 on the clock.  I’m not going to spoil it for you, but it will leave you amazed, mystified, and utterly heartbroken.

At this point, I don’t know if you are looking forward to or dreading reading Hannah’s story.  But when you do, you’ll realize that Hannah’s story carries some valuable lessons.  Don’t be afraid of your future.  Embrace life.  Love others with all of your strength.  And find your own ways to never be forgotten.

In case you didn’t click on one of the many links within the above paragraphs, here’s the link one more time:  Please read it.  But get a box of tissues first.

“Thank you” goes both ways

Posted February 25, 2015 by hpccr
Categories: advocacy, awareness, end of life, hospice, Hospice & Palliative Care Charlotte Region, spiritual care

Tags: , , , ,

by Andrea Powell, HPCCR Marketing Manager

thank you 2014At Hospice & Palliative Care Charlotte Region, we get thank you notes every day.  They are beautiful, heartfelt expressions of gratitude, written by loved ones, and reading them makes our job a whole lot easier.  I’ve said before that caring for patients at end of life is a calling for our clinicians, but that’s not to say it doesn’t take a toll emotionally.  We have hearts.  We get attached to patients too.  And saying goodbye isn’t easy for us either.  But reading these notes keeps us going.  The words on the paper make us realize that what we do is special.  Meaningful.  And always appreciated.  Here are just a few tidbits:

From a niece: “I did not have a positive experience with hospice care during the loss of my father in Virginia and was somewhat skeptical about hospice care here for my aunt.  I am so glad our doctor referred my aunt to HPCCR.”

From a daughter: “This was our first experience with hospice and we were very impressed with the care and comfort given to our mother.  Attention was paid to every detail for her and the family.  You were honest with us and made helpful suggestions.”

From a family: “Thank you for helping our family through the most difficult time of gradually and painfully parting with the most gentle husband and loving father.  Each member of your team has been kind, supportive, and thoughtful every step of the way while providing only excellent care.”

From a husband: “Without you, we could not have made it with so few scars.  You showed us the way and provided the knowledge and caring services.”

From a daughter: “You are helping us to get through this difficult time in our lives, watching and loving our precious mother as her health declines and she slips away from knowing us and remembering her own vibrant life of 97 years.”

From a husband: “The feeling of confidence which you instilled came not only with supplies and medication, but with the sense that your very personal attention and true understanding of the total situation was always only a phone call away.”

From a son: “I got to spend every second of the last week of my mother’s life with her because of all of you and that is a gift I can never repay.  So I hope ‘thank you’ is enough.”

These notes show gratitude to us, but what these precious, grieving family members don’t realize is that we should be thanking them.  Because these notes remind us why we do what we do.  They refuel our capacity to offer love when our compassion tanks run low.  Their words demonstrate the faith and trust that was given to us; they boost our spirits and renew our dedication to our mission on a daily basis.  You really can’t put a price on that.

Ice won’t stop us

Posted February 18, 2015 by hpccr
Categories: advocacy, awareness, caregiving, end of life, hospice

Tags: , , , ,

Editor’s note:  This blog was originally published in January 2011.  Given the recent pattern of icy weather we’ve been having, I thought it was appropriate and worth reposting.  Rest assured, if more bad weather comes our way, our clinicians will again make their patients a priority and exceptional care will be delivered.  We’ve made a promise to them and we will deliver.

by Andrea Powell, HPCCR Marketing Manager

It’s a new year and a new age in health care.  Even as hospices around the country anxiously await the coming changes, we remain committed to providing expert end-of-life care to our patients.  Because, after all, that’s why we’re here.  To comfort.  To serve.

Here in Charlotte, we got hit with our first winter storm of 2011.  The snow was beautiful, the sledding great.  The ice that followed, though, literally shut our town down.  Schools have not opened their doors in days, neighborhood streets are treacherous, and parking lots are sheer sheets of ice.

Parents with cooped-up kids are not the only ones who have suffered.  Many of our hospice patients who receive treatment in their homes did not receive visits from their care teams early this week and they (along with their caregivers) really depend on those visits.  HPCCR care team members were anxious about the welfare of their patients and made every effort to stay in contact with them.  They braved the icy roads yesterday so that they could ease the minds and bodies of the patients in their charge.  They embodied the very nature of dependability and committment.  And the dedication did not end there.  Staff members at Levine & Dickson Hospice House – Huntersville even spent the night at the facility so that  the patients there could continue to receive 24-hour care.

Over the past few days, HPCCR staff members rallied to the cause.  Schedules were rearranged, creative solutions were crafted, and our patients received the superior care to which they’ve become accustomed.  Teamwork and cooperation reigned and patient care was the priority.

Postal workers have traditionally received the accolades when it comes to bad weather.  “Neither rain, nor snow, nor sleet, nor hail. . . ” and all that.  Well, postal workers, you’ve got some competition.  And they work for Hospice & Palliative Care Charlotte Region.

An unexpected gift

Posted February 12, 2015 by hpccr
Categories: awareness, end of life, hospice

Tags: , , ,

by Andrea Powell, HPCCR Marketing Manager

The quilt square lovingly made in honor of Shannon's mom, Yvonne.

The quilt square lovingly made in honor of Shannon’s mom, Yvonne.

I do a lot of writing for my job.  And because I do, I typically try to avoid clichés.  It’s not that clichés are bad, it’s just that I feel like I can come up with something on my own to express what I’m trying to say. But today, I’m resorting to a cliché because, well, sometimes a cliché perfectly conveys what it needs to.  So here it is:

Hospice is a gift that keeps on giving.

Yes, I’m sure you’ve heard that phrase a million times about a million other things, but when it comes to hospice care, it’s really true.  And I’ve got a story to prove it.

Shannon Armstrong has been a nurse since 2002; she is currently working toward her Masters in Nursing from the University of North Carolina at Charlotte.  Through the course of earning this degree she has been meeting with a Hospice & Palliative Care Charlotte Region nurse practitioner in our Medical Services department.  Well, at one of these meetings, Shannon looked up at the wall of our boardroom and was shocked to see something that she recognized.

It was a quilt square.  Made by her stepfather’s mother to honor the memory of Shannon’s own mother.

Shannon’s mother died in 1993 when Shannon was only 22 years old.  Her mom, Yvonne, was under the care of HPCCR (then called Hospice at Charlotte).  After Yvonne had passed away peacefully, Shannon’s step grandmother made the quilt square and, along with Yvonne’s name, included Shannon’s name and those of her stepfather and siblings.  Shannon had heard that the quilt square had gone to hospice, but she never saw it again.  Until November.  And that’s when she saw it hanging on the wall at the HPCCR office.

Shannon was shocked to see it but, at the same time, incredibly pleased.  She took a picture of the quilt square to send to her family members and she called her stepfather to let him know what she had seen.  Needless to say, he was just as thrilled.

When I talked to Shannon, I asked about her hospice experience with her mother all those years ago.  She had nothing but praise for the nurses who cared for her mom.  She said that the care team members helped her family know what to expect and were completely supportive throughout her mother’s illness.  When she saw the quilt square on the wall, she said that it made her feel like she was in the right place in her life.

You see why the cliché I picked is so appropriate?  The end-of-life care Shannon’s mom received in 1993 was certainly the original gift.  Seeing that quilt square on the wall of the hospice that cared for her mother over twenty years later?  Gift number two.  Being able to see, remember, and take pictures of the meaningful memento lovingly made in honor of Yvonne?  Gift number three.  Being able to share that picture with other family members who also loved Yvonne?  Another one. Seriously, I could go on and on.

Suffice it to say that hospice is a beautiful gift.  A gift that, without a doubt, keeps on giving.  Which is exactly what the cliché says.  And I honestly couldn’t say it any better.


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