December 2020 OutreachNC

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Feature Intro: Palliative Care

DECEMBER 2020 - 1

One of the most confusing aspects of the managed care world centers on care toward the end of life.

Many people have heard of hospice care, but the term palliative care is an often-misunderstood term that gets lumped in with hospice care but is actually quite different.

According to Hospice Foundation of America, hospice care is “medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life.”

What, then, is palliative care and how does it differ from hospice care?

OutreachNC sat down with FirstHealth of the Carolinas’ Robin Lynn, Palliative Care and Family Services Manager, and Sondra Williamson, a boardcertified Adult Nurse Practitioner (ANP-BC), to talk about what palliative care means, the biggest myths of palliative care and what patients, caregivers and loved ones can expect from receiving palliative care. Lynn and Williams help us understand the differences between the two forms of care (hospice and palliative), what makes each one unique, when a patient might take advantage of palliative care and what it’s like to work in a field that helps people with often complex health problems make the most of the time remaining.

ONC: What is the difference between Palliative Care and Hospice Care?

Robin Lynn: The main difference is the stage of illness for the patient. Hospice care is typically provided in the last 6 months of life. It is for terminal illness and focuses on comfort care. Palliative care is provided in the last 1-3 years, and a patient’s illness does not have to be terminal to receive palliative care.

In fact, a patient might still be receiving curative care.

CONTENTS

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ASK THE EXPERT: ONLINE & MOBILE BANKING FEATURE: PALLIATIVE CARE FEATURE: MALCOLM BLUE FARM FAITH: ALL I WANT FOR CHRISTMAS...

LETTER FROM THE EDITOR

Amy Phariss, Editor-in-Chief, OutreachNC | editor@outreachnc.com

DECEMBER 2020 - 2

The holidays are officially here. Twenty-twenty is nearly over, and what a year it has been. We all began this year with a hint, just a whisper, of a strange virus all the way across the globe. A few months later, we were quarantining, isolating, making masks and buying toilet paper whenever and wherever we could find it.

Was anyone else surprised to be shopping for such items at The Dollar Store?

We have all come together trying to keep each other safe, trying to remain healthy and still, in one way or another, connected. It hasn’t been easy. Yet, as the year winds down, look at how far we’ve come.

We’ve learned to use apps and technology to see family and friends, lest the gap between us grow bigger.

We’ve delivered groceries, picked up prescriptions, mailed letters and mowed each other’s lawns.

We’ve made masks and donated to charities that have sent masks for healthcare workers on the front lines.

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We’ve reached out and leaned in.

It hasn’t been an easy year. But in the way struggle often seems to bring people together, it has been a good year.

We celebrate a little in this issue by taking a virtual tour of the Malcolm Blue House in Aberdeen, which is closed due to COVID but which we can enjoy through the photography of Mollie Tobias and the everilluminating words of Ray Linville.

We explore the meaning and power of palliative care with Robin Lynn and Sondra Williamson of FirstHealth, who help us understand the physical, emotional and social needs of care later in life.

We’ve also got words on faith from Colette Bachand you’ll want to be sure to check out.

Here’s to a wonderful 2020 holiday season and lovely ringing in of 2021. Let’s brush the dust off our shoulders and make this 2021 one for the books.

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ASK THE EXPERT: ONLINE AND MOBILE BANKING

My adult children keep telling me to get with the times and do my banking and bill paying online or with my smart phone. I’ve always been a paper file kind of person. Is my information really safe if I make the switch?

The trends and sophistication of online and mobile (using a smart phone) banking are ever increasing and have been even prior to brick and mortar locations being closed due to the COVID-19 situation. The FDIC shows that in 2017 about 40% of people with bank accounts used online banking. Studies show trends to increase by 15-20% in each year after and include mobile banking through smart phones.

But, I understand the notion of just because a lot of people are doing it, that doesn’t mean I want to. Here are some benefits for making the switch: Let’s first discuss security: Banks are required to use standards of security and simply put, they currently use about a 250 bit encryption process (through a cryptographic algorithm) to keep your information safe as it’s being transmitted and once it’s stored. A 2018 U.S. News and World Report article states “Your bank should require multifactor authentication to access your account online. This means requiring more than just a username and password... Added steps could include answering a security question or entering a code sent to your phone. Accessing your account with a mobile app should require a passcode or biometric scan.” If you want to read more about all the requirements and security protocols you can visit the National Institute of Standards and Technology’s website www.nist.gov.

Other than data security there are a number of other benefits to making the switch such as: Convenience: Stay home and save trips to the bank – especially now as many locations are closed for COVID precautions. Many banks’ mobile apps now have the ability to use the camera on your smart phone to scan a paper check and deposit it into your account. You can easily transfer from savings to checking and vice versa, even among varying banks/ financial institutions. You can set up automatic payments, so you don’t have to take time to sit down and write out checks to mail – saves time and postage and you don’t worry about incurring late fees.

DECEMBER 2020 - 3 Other online/mobile features include the ability to pay an individual (like your bridge partner who you spilt the lunch check with or a golf buddy who organized the tee time) through a feature like Zelle where you pay from your bank account to hers without exchanging bank information.

Convenience & Security: You can easily see when funds have been paid out of your accounts in real time instead of having to wait for a paper copy of your statement to arrive at the end of the month in the mail (also true for credit card accounts). You also don’t have to worry about those statements, which often contain account numbers, getting into the wrong hands. This leads to another benefit of going digital: No more having to shred those files! For years, it’s been standard protocol to keep important paperwork for at least 5 years. Well, that means you have to find a safe and secure physical space to store it all…and then destroy it properly when it’s no longer needed. Most of the time what ends up happening is it doesn’t get destroyed in a timely manner and has to be dealt with (often by a spouse, adult children or whoever may handle your estate) at a less convenient time such as a person’s death, downsizing, or facility placement. If your information is safely digital, you can organize a way for your executor(s) or financial power of attorney to be able to gain access in your place. This is another added convenience: Ease of Access/Searchability: If your financial power of attorney has to step in to help on your behalf and you’ve set up a method for access – either ahead of a needed time or UPON the event you cannot, he or she can easily see statements, auto payments, sources of income etc. which makes their job of assisting much easier.

Oversight when appropriate: If you have a spouse/ significant other or trusted family member who you’d be willing to give online banking access to (don’t skip the important step of setting up financial power of attorney), you remain confident that you have some help with checks and balances to ensure you are keeping track of all of your bills, payments, appropriate donations, etc.

There are ways to ensure this happens without giving the person access to SPEND the funds.

It’s possible when you understand the security requirements and weigh them with the benefits and ease of use, you may find yourself ready to make the switch.

Now, figuring out how to set it all up… if you have a middle school grandchild, he or she can probably do it in five minutes. Or, an Aging Life Care Manager can give you tips on who to ask and how to go about making the change.

DECEMBER 2020 - 4 ONC: What is the biggest myth about palliative care?

RL: That it’s hospice. There are many myths, but separating palliative care and hospice care is a big one. It stops people from benefiting from palliative care earlyon, when it can be most valuable and can really add to a person’s (and family’s) quality of life.

treatments and symptom management. Helping patients know which questions to ask of medical providers is a big part of our job.

PATIENTS WITH A MULTITUDE OF SYMPTOMS ARE NOT SEEING A PRIMARY CARE DOCTOR THAT ONC: What do you think is the biggest emotional hurdle OFTEN; THEY’RE SEEING SPECIALISTS. to benefiting from palliative care?

SOMETIMES, NOBODY IS PULLING RL: Acceptance. Patients want to protect their families THAT ALL TOGETHER, ALL OF from diagnosis, and families want to protect the patient, THE CHARTS, PRESCRIPTIONS, so it’s about communication. There is fear. If I show that PROCEDURES, RECOMMENDATIONS. I’m saddened, it will negatively affect you and vice versa PALLIATIVE CARE PULLS ALL OF THAT Communication is key; when patients are TOGETHER. communicating with each other, with family and with providers, that’s when they feel empowered.

ONC: Sondra, you work ‘on the ground’ so to speak, providing palliative care. What is palliative care from your perspective?

Sondra Williamson: Palliative care is supportive care for seriously ill patients. It’s usually helpful when they have recurrent hospitalizations, multiple specialists, multiple chronic illnesses. This is a lot to manage and oversee.

One of the goals is to get involved when they’re in that transitional state, when they’re still seeking aggressive care.

Our role is helping patients figure out goals of care, helping them advocate for themselves, empowering them when they’re seeing all the specialists.

We want them to be able to ask questions about their care, to feel empowered to understand and inquire about their

We are also dedicated to education involving disease process so patients understand what is happening with their illness or disease and can make the best choices for their individual circumstances.

RL: Palliative care is very individualized. There is no onesize-fits-all. It really depends on each person, each family, each situation.

SW: And palliative care is often a bridge to hospice.

Many patients are not yet ready for hospice, but if they receive palliative care, when they are ready for that stage, we are there to help them make that transition. But also, it’s important to remember: Some patients do get better.

They go back to the gym. It was a time of serious illness and then there was recovery. It’s not always terminal.

ONC: What exactly does a patient receive as part of a palliative care treatment plan?

SW: When I go in to visit a patient, I will do a full chart review. I’ll look at medications, procedures, diagnoses, all of it. I also do an exam. I review medications, vital signs, weight. Then, I hone in on what symptoms or issues need to be addressed and what we can do about them.

Palliative care is an extra set of eyes, ears, hands. We

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DECEMBER 2020 - 5 help support the facility if the patient is in an assistedliving facility or nursing facility. We are there to provide support, give individualized attention, communicate with family and communicate with medical professionals.

WE CAN PULL IT ALL TOGETHER AND COME UP WITH A PLAN, BASED ON THE PATIENT’S GOALS, TO IMPROVE QUALITY OF LIFE AND EMPOWER THE PATIENT AND THE FAMILY TO MAKE THE BEST DECISIONS POSSIBLE. RL: We focus a lot on goals of care. What are the patient’s goals? What are the family’s goals? We go over that with the patient and families. We also focus a lot on education, helping families and patients understand medication for symptom management, understanding the disease process and also understanding lifestyle, wellness and self-care options.

The more you know, the better decisions you’re able to make.

ONC: Is there anything else that goes into palliative care?

RL: The care plan also provides help with advanced care planning. Most patients want life support and resuscitation when they come for palliative care, but those goals sometimes change. We watch these changes and help patients document those changes and review them. A patient’s goals might change from wanting a full code [this means if your heart stops working or you are found to have no pulse, a health care professional will begin chest compressions or use electrical shock in an attempt to resuscitate your heart], if possible, to a partial code as his or her illness progresses. We are there to help discuss goals and options.

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SW: Palliative care is about potential – living to your full potential, figuring out what your goals are and how to make that happen.

We do mental health assessments as well. We see depression and anxiety most often. We also help family members make decisions about their role and assist them in understanding how caretaking is affecting them. We have a team with a doctor, a nurse practitioner, a nurse and a social worker. The team is really important to be able to assess for all of these issues. We work as a team to figure it out and come up with a plan.

ONC: Speaking of families and caregiving, do you see a connection between social isolation and health/wellness?

Do you see it impacting a person’s ability to manage illness?

(Lynn and Williamson both nod)

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5 FACTS ABOUT PALLIATIVE CARE

1. It’s often covered by insurance. Medicare Part B, Medicaid and many private insurance plans may cover services (co-pays may apply).

2. Palliative care is offered in both outpatient and inpatient settings; although most patients receive care in the outpatient setting.

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3. Palliative care is now offered virtually through telemedicine – Tele-Palliative Care.

A typical consult usually lasts 30 minutes.

4. Palliative care is offered in Skilled Nursing and Assisted Living facilities, and care providers with facility staff and other medical providers to ensure communication and care.

5. Palliative care is not only for cancer/ oncology patients. Sondra Williamson and Robin Lynn note many patients have other diagnoses including Dementia, neurological diseases, heart/vascular disease, kidney disease and more. Many patients are managing more than one illness or diagnosis.

SW: Yes. In their quality of life, in their mortality, in their hospitalizations.

ONC: Can you help people to become less socially isolated?

RL: This is a hard year for that, but yes. There are support groups in the area, and they can be very helpful. A lot has been impacted with COVID. It’s been really hard this year because so much of what we offer as support, a hug or a pat on the shoulder, we can’t do now with COVID. It makes it really hard.

ONC: How can a family member be most supportive?

RL: I think that physical and mental presence. Going to appointments, listening, talking about your own feelings.

Every patient and every family is unique.

DECEMBER 2020 - 7 what is happening and what kind of assistance you might need….that can be a huge support for caregivers. You help the patients set their goals, and a lot of times, you help the caregiver set their goals too.

SW: Being a listening ear a lot of times, being someone to hear them and validate. A lot of them also deal with anticipatory grief. Betsy, the social worker, can help caregivers start working with anticipatory grief.

PALLIATIVE CARE IS TRYING TO WALK WITH THE PATIENT AND THE FAMILY, WHEREVER THEY ARE IN THAT MOMENT.

SW: Families sometimes have a lot to talk about or work through, especially toward the end of life. The team we have in place, the people drawn to this, we are drawn to root causes.

ONC: Thank you both for sharing your knowledge, experience and perspective with our readers. Two final questions for each of you before we wrap up:

ONC: What are the root causes you’re talking about?

RL: From a managerial side, I don’t get the interaction that the team gets, but I do get to hear the success stories.

I get to hear that someone’s life has improved based on the work the team did.

SW: It’s root cause of disease, yeah. We may never know.

We can look back and look at what contributed, but what Robin was talking about, too, that gift of presence. That is hard if there are issues that have never been discussed.

RL: If families are willing to start having those conversations, those opportunities for healing…it can be a real gift.

SW: We have patients who resolve issues that have gone on for decades. Family dynamics….we get a bird’s eye view into family dynamics. Some will never change, but sometimes we can help bring about healing in some of those situations. Even with husbands and wives, the caregiver might feel exhausted. The patient will feel guilty for needing the help. We watch that happen and then open a discussion about where they are in life.

RL: It’s sometimes a long list of emotions: depression, fear, guilt, anger….

ONC: Do you help caregivers recognize their own needs?

SW: Yeah. That’s part of what we do, as a whole team, is support the caregiver.

ONC: How do you do that?

SW: Some of it is getting into the underlying emotional issues (guilt, fear, exhaustion).

RL: Accessibility of the team is also important.

You can call and reach the team. Having someone you can call and know you can truly reach to go through

ONC: What is the most rewarding part of your job?

It’s been neat too to see the community get on board with the program and watch the program grow. That’s more people we can help, and that impact is word of mouth because someone’s life did improve.

SW: I think for me it’s the same. When the patient says, “I finally slept last night and I feel so much better today.” Or a caregiver says, “You’ve helped me so much. I can deal with this.” It’s seeing patients who feel empowered and have a better quality of life. That’s when you end your day and think: you know, all the hell of the day was worth it.

ONC: What is the hardest part of your job?

SW: Some days it’s just the weight of it all, to see and hear and know how much people suffer, but then the flip side is that it’s the biggest success when you ease some of that suffering.

RL: There is frustration that we could have been doing more sooner. And there is a lack of knowledge about the appropriate time to come into the program, so it can be frustrating to see cases and have that shoulda, coulda, woulda feeling and know the impact you could have made earlier on.

Thank you to Robin and Sondra for helping us understand the role of palliative care and how both patients and families can benefit from a comprehensive, supportive and holistic approach to the care of people living with complex medical conditions. We appreciate gaining perspective and insight into such important work.

DECEMBER 2020 - 8

Malcolm Blue Farm Comes Alive for Christmas

by Ray Linville | Photography by Mollie Tobias

When you enter the home of Malcomb McMillan Blue and his family in Aberdeen, the world of two centuries ago immediately captivates you.

Each December the farmhouse, built around 1825 and now on the National Register of Historic Places, is even more special because it is decorated for the season in the style of the early 1800s.

Although the Blue Farm in Moore County is visited throughout the year by school and community groups, this month it is the place to marvel at how simple decorations can be so delightful at Christmas.

Most of the decorations feature natural items, such as pine boughs, pinecones, spruce sprigs, holly leaves, chicken feathers, acorns and similar items from the farm property. Most decorations were foraged, selected and arranged by Kayla Phillips, a program coordinator with Aberdeen Parks and Recreation.

“I look for anything natural — whatever looks pretty.

Decorating the farmhouse is fun,” she says.

As you approach the front door, you are greeted by a Christmas wreath fashioned with greenery from the farm’s pine and spruce trees contrasting. Delicately thin garlands of pine boughs simply drape over the handrails that lead to the front porch.

Immediately inside the front door in the central hallway on a corner table is a small two-foot tree on a handcrocheted tablecloth. Formed with boxwood cuttings with a base of light green reindeer moss and trimmed with tall white candles nestled in bright red apples, the tree is a tradition borrowed from Moravians, who built artificial trees with pine branches and traded via the Plank Road with the Scottish settlements in this area.

The much larger tree in the living room was grown on the farm specifically for the Old-Fashioned Christmas.

Decorated with cornhusk angels and dolls, gingerbread men, hand-crocheted stars, woven squares in festive colors, nuts and feathers, its modest design without any electrical or modern accessory is breath-taking.

Nothing more needs to be added to complete its personality. Its simplicity matches other designs in the house that create the spirit of the 1820s and convey the fashion of the period when the Sandhills was known as the “Pine Barrens.”

The wood desk in the corner is another period piece that catches the eye of everyone who enters to look at the tree more closely and listen to the musical ensemble that plays throughout the afternoon. Other decorations in this room adorn the fireplace where pine boughs stretch across the mantle and long hand-knit patterned stockings

DECEMBER 2020 - 9 hang ready to be stuffed with small presents by Santa.

Every room has a functioning fireplace. Each mantle is attractively adorned with seasonal decorations that include bright yellow-green Osage oranges, which grow on a tree favored by Native Americans for fashioning their bows. The oranges are selectively placed to brighten and complement the green boughs.

Although each bedroom is charmingly decorated, the period pieces (including a chamber pot) and lack of modern conveniences — no flatscreen TVs for the Blues — seize your attention more than the garlands. Seeing the small children’s room, where up to eight children slept — all born to Flora, Blue’s second wife (his first died in childbirth) — tempts you to decide how they all could fit in such a small space.

Farther back in the house is an additional room that was added when the originally detached kitchen was moved next to the house. Light refreshments are served on an antique table, which is decorated with an attractive centerpiece simply formed with fresh fruits and bound by pine boughs. (Don’t miss the antique wood-and-screen fly trap attached to the wall.)

After you have visited the last room, you should return to the front door and start the visit over again. No decorations are hidden. They are all in plain sight, but when I walked through again, I saw quite a few that I had missed on my first tour because I was so captivated by the authentic furniture, all of which was donated. Everything tells a story about how a family well-to-do at that time lived in ways that we today would consider very difficult and meager.

The story comes to life when guides such as Robert Martin, who has volunteered at the farm for 10 years, explain each room and the farm’s history. (In addition to giving occasional tours, he also takes care of the farm’s 20 chickens each day.) “It’s a labor of love,” he says. Though events are canceled this year due to COVID, in ‘normal’ years tours and festivities include an Old-Fashioned Christmas tour of the home and grounds.

Tours of the house are conducted while musicians play in the living room. In addition to the house, the pack house (which has activities for children and their families) and the museum are open. Popcorn stringing, storytelling, grapevine wreath-making, and caroling are among the popular activities. The event, which is free, is appropriate for all ages.

DECEMBER 2020 - 10

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DECEMBER 2020 - 11

GRAY MATTER GAMES

ACROSS

1. Door feature 5. Christian Science founder 9. New moon, e.g.

14. Control freak 15. Achy 16. Horse opera 17. Aroma 18. Checked item 19. Contemptuous look 20. Energy converters (2 wds) 23. Bridge play (pl.)

24. Map line 28. “Give it ___!” (2 wds) 29. Big ___ Conference 31. French Sudan, today 32. Lawn mower’s path 35. Sits tight 37. End 38. Hit by thunderstorm’s electrical discharge (2

wds) 41. “Is that ___?”

42. Bulrush, e.g.

43. Like some buckets 44. Clickable image 46. ___ bit 47. “Wheel of Fortune” buy (2 wds) 48. Not at all 50. Makes right 53. January 1 to December 31 (2 wds) 57. Strikes with beak 60. Cameron ___, actress 61. Plunge headfirst 62. Fits 63. #1 spot 64. Battery contents 65. Regretful 66. Bungle, with “up” 67. Cravings

DOWN

1. Comprehend 2. Low point 3. Kind of layer

4. Robin’s tidying spot 5. Former Portugese monetary unit 6. Opportunities, so to speak 7. Blah 8. Abominable Snowman 9. Presents, as a threat 10. Two-wheeled covered carriage 11. Absorbed, as a cost 12. “Comprende?”

13. “To ___ is human ...”

21. Acrobat’s garb

22. Dressed to the ___ 25. Dye with wax 26. Similar 27. Turn red or yellow, say 29. Bit of color 30. Halftime lead, e.g.

32. Assassinated 33. Ham radio response 34. Burning 35. Dwell 36. Habitual drug user 39. Handrail support 40. Time of financial need (2 wds)

Open Arms

45. Neigh softly 47. Blows away 49. Flip, in a way 50. Monroe’s successor 51. Prepare for winter takeoff 52. Small spreading juniper bush 54. ___ cheese 55. “Good going!”

56. 1990 World Series champs 57. ___ de deux 58. “I” problem 59. Blackguard

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I WONDER WHAT YOUR HEART LONGS FOR RIGHT NOW? If we have learned anything from the pandemic of 2020, I hope it has been a rearranging of what we thought we wanted or needed most. We are longing for things to get back to normal because, as it turns out, what we really long for most is to be with each other.

And so, while we struggle together this season to rise above trying times, I pray our hearts turn to a season of longing. The longing for a better world and the courage to make it happen; the longing to find within simple things the truth that the little things really do matter most; the longing for the true gift of Christmas, not a date on the calendar, but a God who wants to be with us so comes to dwell among us, despite our messy lives.

Yes, all I want for Christmas is a vaccine, but what I long for is a deeper connection to the real gifts of Christmas, and I long for the health and happiness of the people I love in 2021 … which includes all of you!

IFT HOLIDAY G N SUGGESTIO

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“All I want for Christmas” … is a vaccine.

What we want for Christmas is a common question this time of year.

In ordinary times, the answer might be a sweater, some new sheets, or a weekend away at a mountain inn. But 2020 has been anything but ordinary, and this year what we want for Christmas may be quite different.

In the Christian tradition, the weeks before Christmas is the season of Advent, a time especially marked by a sense of waiting and wonder; a time when seeds of hope are planted in our hearts, quietly growing until the magic of Christmas morning.

This Advent season, I have found a new word for what it is I “want” for Christmas. My new word is “longing.” To long for something is deeper then wanting it, and asking my heart what it truly longs for right now brings me deeper into the true meaning of Christmas, particularly in a year when holiday traditions are different if not skipped all together.

I’d suggest that wanting something and longing for it are two different things.

“Wanting” perhaps fills an immediate need, but “longing” transforms us. Having the courage to ask what our hearts long for connects us to the places we’ve felt sad or incomplete, but in the asking opens doors to where we find healing for whatever has us feeling broken. To ask what it is we truly long for suggests we trust there is a way forward that is hopeful.

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The Rev. Colette Bachand | revbachand@gmail.com

FAITH: ALL I WANT FOR CHRISTMAS...

DECEMBER 2020 - 15

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