Archive for the ‘advance directives’ category

Have a compassionate conversation with us

March 24, 2016

by Andrea Powell, HPCCR Marketing Manager

NHDD day image“I wish I’d known about hospice sooner.”

We hear that sentence all the time. And we understand why — it’s a topic that most people don’t learn about (nor want to learn about) until they have to. Let’s face it. No one looks forward to talking about end of life. But it doesn’t have to be so hard, especially if you let us help you.

Hospice & Palliative Care Charlotte Region will be hosting two special events next week, designed to make you more comfortable talking about end of life and what your wishes are concerning it. We’re holding these events to recognize National Healthcare Decisions Day which takes place each year on April 16 (the day specifically chosen because it falls right after tax day and we all know what Benjamin Franklin said about death and taxes. . . .)

The seminars are entitled Compassionate Conversations: It Always Seems Too Early, Until It’s Too Late, and we’ll be hosting them on Tuesday, March 29 (at Levine & Dickson Hospice House – Huntersville) and Thursday, March 31 (at the Philip L. Van Every Learning Resource Center). Both will begin at 6:15pm and last until 8:15 and to entice you to come, we’re having delicious appetizers and offering expert commentary from our extremely experienced nurse practitioner, Beth Martin, and our esteemed Medical Director, Dr. Robert Smith.

The two of them will explore a bunch of different tough and thought-provoking questions such as “How do I begin a conversation with a loved one or physician about healthcare planning?”; “What does it mean to do ‘everything’ possible during a healthcare crisis?”; and “What are the benefits and burdens of nutrition and ventilators at end of life?”

We encourage you to come to one of these events. See, if you have the conversation with us, then you can feel confident having the conversation with the people who matter most to you. Which ultimately would allow you to avoid having the conversation that begins with, “I wish I’d known about hospice sooner.”

There is no cost to attend these seminars, but you must pre-register. To do so, email Louise Giusto at giustoL@hpccr.org. For more information about the Compassionate Conversations seminars, you can contact Carol Anne Lawler at lawlerC@hpccr.org.

 

Hope for a change

February 25, 2016

by Andrea Powell, HPCCR Marketing Manager

AtulGawandeThere are often stereotypes that accompany surgeons. I can’t say for sure that the stereotypes hold any weight because I simply haven’t met many surgeons. But isn’t there usually a reason that stereotypes exist? Who knows. Anyway, this is what I’ve heard about surgeons: brash, cold, confident (verging on cocky), brilliant, terse, aggressive.

The surgeon I listened to last night was none of those things. Except brilliant.

Yes, Dr. Atul Gawande is a surgeon. But he’s also a professor (at Harvard) and an author. His most recent book, Being Mortal: What Matters in the End is on the New York Times Best Seller’s List and has been for months. The man knows his stuff.

He came to Charlotte to participate in the Learning Society of Queens (University) lecture series. HPCCR was one of the presenting sponsors for his presentation last night and I was lucky enough to score a ticket.

Dr. Gawande has been thoughtfully considering end-of-life issues since he was a junior surgical resident. Over his many years in medicine, he has seen various outcomes for patients, ranging from aggressive measures to comfort care. He believes that everyone has a right to make their own decisions about what they want to do in the face of terminal illness — that was not the focus of his remarks last night.

What needs to change, according to Dr. Gawande, is the approach of physicians.

Physicians need to be better about asking patients what their priorities are, he says. They come in and talk to the patient but, in reality, their time talking needs to be cut in half. What should doctors be doing instead? Listening.

These are the questions that should be in their arsenal: “What is your understanding of your illness right now?”; “What are your goals if time is short?”; and “What are your fears?” Getting the answers to those questions will help determine the best course of treatment. It will get to the root of what kind of quality of life is acceptable. Because, in our job, it’s all about quality of life.

Dr. Gawande told the story of a hospice nurse who said something to him one day that stopped him in his tracks. She was in the room, doing a million things at once — adjusting pillows, adjusting meds, taking vitals, changing lines. In other words, she was totally focused on the needs of the patient. When Dr. Gawande remarked on her level of activity she said, “You’re a surgeon. Your job is to sacrifice time now for time later. My job is to give people their best possible day today.”

Ultimately, it was an inspiring evening. Dr. Gawande gave the room hope that we, as a society, are moving into an age where we can be comfortable with death. He talked about a new generation of physicians who won’t accept practicing medicine in the “traditional” environment we’ve had for so long. Dr. Gawande believes that we will soon see an entire cadre of young clinicians who believe they can be part of the solution rather than part of the problem. And we, as future patients, can do better too. He ended with, “If we define clarity about our goals and we all respect them, I think we can have extraordinary change.”

It’s happening, folks. Change is coming. The sheer fact that a surgeon talking about end of life sold out a one thousand-person theater speaks volumes about our current appetite on this topic. And those young clinicians our renowned speaker anticipates? They are going to smash the surgeon stereotypes; they are going to rewrite the job description. They will be like Dr. Gawande– thoughtful, kind, compassionate, communicative. They’ll be all those things and more. They’ll be brilliant.

 

 

 

A new location for education

November 4, 2015

by Andrea Powell, HPCCR Marketing Manager

From left to right: Dick Pahle of the Philip L. Van Every Foundation, HPCCR CEO Pete Brunnick, and Pall Crull, HPCCR Board Chair

From left to right: Dick Pahle of the Philip L. Van Every Foundation, HPCCR CEO Pete Brunnick, and Pat Crull, HPCCR Board Chair

Over the years, we have learned that education is crucial to the success of our organization. We know that once a person learns about hospice and understands its intrinsic value, they will become a lifelong and passionate advocate. We also realize that keeping our staff up-to-date with continuous education is a critical component of maintaining the exceptional care we offer. Education is so important that we’ve included it in our mission statement. It should come as no surprise, then, that Hospice & Palliative Care Charlotte Region is taking education to an entirely new level.

We are proud to introduce our newest location, the Philip L. Van Every Learning Resource Center. This location will have a dual purpose – it will offer a space for specialized training for our clinical staff and will also have the capacity to host educational events for the community at large.  It officially opened a few weeks ago, but we are having an open house tomorrow (with a ribbon cutting featuring those awesome huge scissors) to introduce the building to the public.

Situated on the corner of Walsh Boulevard and Johnston Road in south Charlotte, the building was once a branch of the Charlotte Public Library, operating from 1983 until 2010. It sat empty and unused until it was purchased by Hospice & Palliative Care Charlotte Region in 2012. Its proximity to our south Charlotte office (located just around the corner) was a distinct selling point for the organization when considering the purchase.

HPCCRLearningResourceCenter-0007HPCCR has a strong history of providing excellent education to the staff and fostering an environment that enhances the skills of our clinicians. The Philip L. Van Every Learning Resource Center will dovetail perfectly within this mission. One of the main advantages of this space will be the simulation lab, adequately equipped to provide hands-on training through the use of medical equipment specific to HPCCR. Staff will have access to a hospital bed, lift, infusion therapy pumps, artificial nutrition delivery systems, fluid management / containment devices, and more. By working and training with the equipment (and simulating real-life situations they are likely to encounter), our staff will be even more prepared to deliver exceptional end-of-life care to our patients.

In addition to the simulation lab, the building boasts multiple conference rooms designed to accommodate presentations and educational offerings to the community. With state-of-the-art teleconferencing capabilities, these rooms offer endless opportunities for learning. We envision seminars about advance care planning being held here; individuals learning about living wills, Healthcare Power of Attorney documents, and the MOST (Medical Orders for Scope of Treatment) form. This location will also serve as a training site for other medical professionals, like medical residents and nursing students, who could benefit from more deliberate instruction about end-of-life care. And our own staff will receive education here as well, with in-house seminars and the ability to use a comprehensive and innovative computer lab.

Our learning center is exactly the sort of facility that Philip L. Van Every imagined supporting when he created his foundation. An important leader in the Charlotte community (he was the CEO of a multi-million dollar corporation and the mayor of the city), Mr. Van Every was known for his philanthropic nature. Among other causes, he was devoted to education, healthcare, and community service. The HPCCR facility bearing his name strives to encompass all three of these passions, making healthcare education easily accessible to anyone with the desire to learn.

HPCCRLearningResourceCenter-0009Hospice & Palliative Care Charlotte Region is committed to exceptional end-of-life care. The Philip L. Van Every Learning Resource Center allows us to promote hospice and palliative services both internally and externally; furthering the training of our own staff in order to serve patients better and offering quality education to our neighbors within the communities we serve.

We are thankful for the man who had the foresight to serve the city he loved. He envisioned enriching lives by funding nonprofits and their worthy causes. With the Philip L. Van Every Learning Resource Center, Hospice & Palliative Care Charlotte Region will honor and further his legacy by also investing resources in our community. We will use this facility to enhance education around end-of-life care and engage the community in the important work we are doing. We know that Mr. Van Every would be proud.

 

Fate, coincidence, and an ALS clinic

August 27, 2015

by Andrea Powell, HPCCR Marketing Manager

Wes and sandra leconte

Sandra and Wes Bobbitt, September 2011, two months after diagnosis

There were two patients that day.  I could have been assigned to either one but (as far as I’m concerned) fate intervened.  And that’s how I met Wes and Sandra Bobbitt.

A few weeks ago, my coworker Heather, an HPCCR Education & Resource Manager, asked if I would like to join her at the ALS clinic in Charlotte to shadow a patient.  As I have a slight connection to ALS (which I will explain later), I quickly agreed.  We met there early on a Friday morning, both of us a little nervous and not knowing what to expect. Which is probably a good thing.  Going in blindly, without preconceived notions, is like giving an artist a blank canvas — you have no idea what the final outcome will be, and while the process to get there will be layered and complicated, you know it will be genuinely real.  That’s how it was for me, anyway.

Even though my emotions were admittedly all over the place, it was an unforgettable experience.  The day was both heartbreaking and heartwarming, with a little bit of massive coincidence thrown in for good measure.  And I was only there for four hours.

Two patients had agreed to be shadowed.  One of the patients was under the care of HPCCR and the other was under the care of a different hospice.  Heather, whose job is to stay current with the competition, went with the patient not under our care.  I  joined Wes Bobbitt and his wife, Sandra, for the first half of what would prove to be a very long day for them, indeed.

The ALS clinic is a brilliant concept.  I’d never really thought about it, but it’s very daunting for patients with this disease to get out and about.  So twice a quarter, the Carolinas Neuromuscular Disease/ALS-MDA Center holds a day-long clinic where patients can see the entire ALS team at once.  Throughout the day, they’ll meet with the nurse, doctor, pulmonologist, social worker, occupational therapist, speech therapist, the person who adjusts their wheelchair, the person who will talk to them about insurance, the person who will help them with augmentative communications (ways to communicate other than speaking), and a nutritionist.  They will arrive at 8am and can potentially be there until 4 or 5pm.  That’s a very exhausting day, but you’re packing in over a month’s worth of appointments.

“My” patient, Wes Bobbitt, was diagnosed with ALS in July 2011. Wheelchair bound, his disease has progressed to the point where he can no longer move his legs, breathe on his own, or swallow food or liquids.  He has limited movement with his arms and neck, but can still nod his head and use his hands to communicate (in a limited capacity) with an iPad.  Nevertheless Wes is cheerful, friendly, and maintains a great sense of humor.  Not to mention, he’s a very good sport for allowing a complete stranger to shadow him to multiple meetings with medical professionals who are discussing very personal issues.

I watched as they weighed Wes and took his vitals.  I listened as the nurse asked his wife, Sandra, about his symptoms and how he’s been doing since his last visit.  I joined them as they visited the ALS doctor, the social worker, and the pulmonologist.  I hung out with them in the clinic lobby (where they talked to the wheelchair guru about the tweaks needed to make Wes more comfortable) as they waited for their turn to visit each of these individuals.  I talked to Sandra and asked questions.  I observed.  And I learned.

ALS is a terrible disease.  It robs the body’s ability to function yet leaves the mind intact.  ALS moves slowly with some patients and like a rocket with others.  The patient that my colleague Heather followed was diagnosed over ten years ago and is still talking and breathing on his own.  Wesley was unable to eat or drink after just three years.

One of the most profound and tragic symptoms of the disease, in my opinion, is the loss of communication between patient and loved ones.  There’s an inherent change in the relationship dynamic simply because it becomes so much harder to “talk”.  Wesley must depend solely on his iPad to communicate and as his body grows weaker, his ability to use the device slows as well.  And now, given the effort it takes to type letters onto the screen, Wes is relegated to communicating only his most basic needs — requests to move his head position, to take his medications, or to let Sandra know whether he is too warm or cold.  I asked Sandra if they have actual “conversations” anymore.  She replied that she mostly talks and he listens, a substantial and heartbreaking contrast, I would imagine, from when their marriage began 35 years ago.

Sandra has kept her full-time job; she acknowledges that staying busy helps her not get too overwhelmed by stress.  They need caregivers in place, though, to cover the hours when Sandra is not at home.  When Wes first started needing help, friends from church would come over, bring a meal, and watch a movie with him.  As his disease progressed, however, Sandra realized they needed nurses.  They also decided to bring in hospice.

Unlike some families, the Bobbitts were not scared of the hospice concept and were not resistant when the social worker at the clinic first broached the topic.  Sandra’s aunt was under hospice care for two years and her mother was also very briefly under hospice care before she died.  So Sandra and Wes understand the value that the hospice care team brings to the patient and the patient’s family.  Indeed, the HPCCR care team has been an immense help to them since Wes came under care in February.  Their nurse comes once a week and their nursing assistant comes twice a week to help with bathing and other tasks.  They also receive regular visits from a social worker, and the hospice physician comes once a month as well.  All of Wes’ medications are now provided through hospice; that alone is a major convenience.

At the same time, Wes and Sandra are under no illusions; they know what the future will eventually bring.  Advance directives are in place and they are even working with a writer to help with Wes’ obituary.  But in the meantime, they are making the most of their time together, and with their two children.  Their daughter is getting married this fall and Wes plans to “walk” her down the aisle.  A huge fan of Phish, Wes is currently trying to talk his daughter into a father-daughter dance to one of the bands’ songs.  (I told you he has a sense of humor.  Thinking his daughter will go along with this plan also speaks to his optimism!)

Now we come to my connection to this disease.  Unfortunately, my sister’s father-in-law, Roger, passed away in January from Primary Lateral Sclerosis (PLS), a very slow-moving form of ALS.  Roger lived with it for over 25 years.  I knew him for the last ten of those years and I saw how difficult it was — for him, his wife, his children, and his friends.  Roger had great support, though, from some amazing caregivers, from friends, and from his church.  The very church, in fact, where Wes and Sandra’s daughter will be getting married this fall.  That was the first coincidence I uncovered.  Turns out Wes and Sandra knew Roger and are still friends with Roger’s wife, Dianne.  The talented writer who helped write Roger’s obituary is the same man helping Wes and Sandra.  He’s got quite the job ahead of him because Wes has had a full life.

The photo of my nephew's baptism taken by Wes

The photo of my nephew’s baptism taken by Wes at Myers Park United Methodist Church

By trade, Wes is a photographer.  He worked for years at the Charlotte Observer, but is also an accomplished travel photographer.  And then there are the weddings, corporate events, and church pageants he attended, the fruits of which round out his portfolio.  The walls of his church, Myers Park United Methodist, are lined with his beautiful work.  There’s one piece in particular on those walls, though, that is special to my family.  In one final fantastic coincidence, Wes was the photographer at my nephew’s baptism over eight years ago.  He took a gorgeous photo of my infant nephew staring into the eyes of Dr. Howell, the senior pastor of the church.  This cherished image hangs in Myers Park United Methodist Church just as it does in my sister’s house — it’s one of the first photos you see, in fact, as you walk through her front door.

There were two patients that day — for me and my coworker.  But there were many, many more patients at the ALS clinic that Friday morning.  I was struck by the camaraderie among those families; all in various stages parceled out by this unforgiving disease, but living through it together, supporting each other.  I was struck by Sandra and Wes Bobbitt, strong in the face of challenge, living life with optimism and grace.  And then I think of my nephew’s face, the innocence in it on his christening day, perfectly captured by Wes in that photograph.  It made me realize something.  We start this life out, never knowing where we’ll be led and what obstacles will lay in our path.  But our attitude, how we face those obstacles, determines our happiness.  The families I saw that day had chosen to pour their energy into living their lives the best way they know how.

It’s a humbling lesson that I could not have learned without fate and a little bit of coincidence.

In my experience. . . then and now

July 29, 2015

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

July 16, 2015

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.