Compassus Magazine Volume 7 Issue 1

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Compassion A Publication of Compassus

Vol. 7 Issue 1





Advance Care Planning Begin the conversation with loved ones about your health care wishes







Compassion Everyday Compassion is published periodically by Compassus. Please address any comments or questions to: Editor, Everyday Compassion Magazine, Compassus, 10 Cadillac Drive, Suite 400, Brentwood, TN 37027

PUBLISHER Compassus SENIOR EDITOR Carol Fite Lynn Public Relations & Marketing Content Specialist

We Want to Hear from You You have plenty of stories to tell and we’d like to hear them. Is there a particular patient who was extra special? Does your facility have wonderful pet therapy? Do you know of a caregiver who has found a unique way to manage the demanding work of caregiving? We’re working on the next issue of Everyday Compassion and we’d like you and your stories to be part of it. We also welcome your questions, comments, feedback, and suggestions. Email us at And don’t forget: • We love our military veterans, and we always want stories about Compassus veterans. • Compassus employees have some of the biggest hearts around, and we want to share your uplifting Dream Team stories. Tell one on yourself or brag about a colleague. • Nominate your medical director to be chosen for our Physician Spotlight.

ASSISTANT EDITOR Sloane Sharpe Marketing Coordinator CONTRIBUTING WRITERS Connie Boyd Executive Director, Lafayette, La. Vicki A. Brown Volunteer Coordinator, Springfield, Mo. Margi Carlson Executive Director, Northwest Illinois Nikki Cockerham Team Coordinator, McComb, Miss. Carol Davis Locomotion Creative Jill Frankel, RNC Admissions Nurse, Albuquerque, N.M. Dr. Cathy Genthner Chaplain, Scarborough, Maine Win Hageman Volunteer, Ozark, Mo. Doug Overall Chaplain/Bereavement Coordinator Prescott Valley, Ariz. Stella Prejean, APRN Lafayette, La. Pat Underkofler Chaplain, Yuma, Ariz. Ben Zigterman Reporter, The Register-Mail Galesburg, Ill. CONTRIBUTING PHOTOGRAPHERS Kevin Vandivier Vandivier Productions CREATIVE and LAYOUT Locomotion Creative, LLC Copyright 2015 © Compassus. All rights reserved. No part of this periodical may be reproduced in any manner without the written consent of Compassus. e-mail comments to:

To my colleagues, friends and associates, In this issue of Everyday Compassion, we highlight the importance of Advance Care Planning, which is a very official name for a very simple idea: being prepared. If you think about it, we’re quite good about preparing for significant occasions in our lives, such as vacations, holidays, weddings, reunions and other important events. Having a plan and being prepared helps to ensure a better outcome than if we put no thought into it at all. Take that same idea and apply it to perhaps the most significant occasion of all: end-of-life. Instead of leaving everything to happenstance, planning and preparing puts you in charge when it comes to your healthcare. Advance Care Planning is simply learning about the types of decisions that might need to be made regarding your personal situation, considering those decisions ahead of time and then letting others know what you want. Not only does advance planning put you in charge of decision-making, but it also relieves your loved ones from making painful and unsure decisions for you at a most difficult time. The Rev. Dr. Cathy Genthner, a chaplain in our Scarborough, Maine, facility, writes eloquently in our cover story of the angst and panic caused when family members have no choice but to make end-of-life decisions for a treasured mother, father, or other loved one in the heat of the moment. None of us wants that for our children or those closest to us. That’s why Advance Care Planning is so crucial. These carefully thought-out decisions and instructions will be relied on by your family, friends and medical personnel if the time comes where you are unable to make your own decisions. Having end-of-life discussions is uncomfortable but necessary to ensure that your wishes are carried out. For that reason, begin the conversation now with those closest to you. Please use the information in this magazine to help guide you. And once your Advance Care Plan is complete, don’t be surprised at the sense of relief. For everyone. As always, we are interested in your reaction to our words, and we are eager to hear and share your stories.


Advance Care Planning Begin the conversation with loved ones about your health care wishes


Seeing ‘life in a new way’ 2015 Living Hope Mission Trip filled with beauty amidst the poverty.



The gift of being prepared Why planning ahead benefits everyone.

Silver linings A caregiver shares the reassuring thoughts of her sister.

Patients must fully understand choices in planning their care.


Learning to be herself Pet therapy can help nearly anyone with fears.


Purposeful listening Look beyond a patient’s condition to truly know their heart.

How to get some relief from an exhausting situation.



The accidental missionary Meet a hospice nurse who unwittingly achieved her career goal.


Honoring veterans Serving those who served for us.


Taking care of Dad


Help for caregivers


Beyond the documents

A Compassus team member knows what it’s like to have a loved one in hospice care.


Celebrating one ‘sweet’ birthday


Serving others Compassus offers ways to help patients and their families.

It is important to mark special milestones.

Insights Compassus Matters


Physician Spotlight Featuring Kelley Newcomer, MD



The Dream Team A longtime educator’s bucket list wish comes true as he returns to his school.


By the Numbers Think you’re too old to donate your organs? The List 7 questions to ask your doctor.

Your advance directive Share the document and keep it handy.



Why have only one-third of adults prepared an advance directive?

Helping a patient live before helping him die.

Barriers to ACP

In Every Issue

My promise to Daniel




U.S. Rep. Cheri Bustos, far right, was welcomed by, from left, Janise Thomas, hospice aide; Judi Minor, volunteer coordinator; Margi Carlson, executive director; and Andi Howard, clinical director.

Illinois U.S. Congresswoman Cheri Bustos recently visited Compassus in Galesburg, Ill., to learn more about its “We Honor Veterans” program, which trains staff and volunteers in the unique needs of military veterans. “Compassus–Galesburg has attained a Level 4 partnership with We Honor Veterans, which is the highest level of achievement,” says Margi Carlson, CompassusGalesburg’s executive director. “Rep. Bustos came to learn about the program generally, and specifically to discuss what we’re doing with our program,” she says, “and how we have trained our staff to take care of all the military branches.”

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Twin Oaks residents welcome Barn Babies Residents at Twin Oaks Center, a Compassus site serving Danvers, Mass., and surrounding communities, got to hold and cuddle small animals when “Barn Babies,” a traveling petting zoo, visited in October. Barn Babies features baby animals — including puppies, kittens, rabbits, chicks, and more. They are managed by certified handlers and provide residents and staff with an educational, fun and safe event. “Barn Babies provides an uplifting experience,” says Derek Marchand, Twin Oaks administrator. “We take the opportunity to bring the farm to the residents and engage them in an activity they normally would have great difficulty attending outside of the center,” he says. “Our residents love holding the swaddled baby farm animals — who wouldn’t?”

CNA Lisa Owens also enjoyed the Barn Babies.


Local Compassus programs earn national distinction for serving veterans Two Compassus programs working to better serve the particular needs of America’s veterans have achieved honorable distinctions for their efforts. The program serving the Springfield and Osceola areas in Missouri has achieved Level Three partnership with We Honor Veterans, a program of the National Hospice and Palliative Care Organization (NHPCO) in collaboration with the U.S. Department of Veterans Affairs. The Compassus program serving Brookhaven, Columbia, McComb and Natchez in Mississippi has achieved Level One Partnership with We Honor Veterans.

“Military veterans assimilate their experiences not only in how they live outside of active service, but also in how their lives end,” says Amy Winburn, executive director of the programs serving Springfield and Osceola. “The better we understand those experiences, the better we are able to meet their unique needs with honor, sensitivity, and respect.” Glenda Sinclair, executive director of Compassus– Mid-Mississippi, echoes that sentiment. “One out of four dying Americans is a veteran, and we are passionate about providing quality end-of-life care and to better understand...the unique needs of men and women with military service,” she says. Hospice providers can pursue four levels of partnership. Level One demonstrates commitment to provide relevant education and training for staff and volunteers, and to identify patients with military experience. Subsequent levels require additional education and training.

How long do most patients receive care? The total number of days that a hospice patient receives care is referred to as the length of service, or length of stay. Length of service can be influenced by any number of factors, including diagnosis, timing of referral and access to care. A larger proportion of hospice patients (about 35.5 percent) died or were discharged within seven days of admission in 2014 when compared to 2013 (34.5 pecent). Likewise, a larger proportion of patients died or were discharged within 14 days of admission in 2014 when compared to 2013 (50.3 percent and 48.8 percent, respectively). A smaller proportion of patients remained under hospice for longer than 180 days (10.3 percent in 2014 compared to 11.5 percent in 2013). 10.3% 180+ DAYS

8.7% 90-179 DAYS

17.8% 30-89 DAYS



15-29 DAYS


14.8% 8-14 DAYS

Proportion of patients by length of service in 2014 Source: National Hospice and Palliative Care Organization’s Facts and Figures: Hospice Care in America, 2015 Edition

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Vibrant colors at the Cape Town market caught the eye of the Compassus team.

SEEING ‘LIFE IN A NEW WAY’ 2015 Living Hope Mission Trip filled with beauty amidst the poverty A medical mission trip by 10 Compassus colleagues revealed to them the beauty of South Africa — but also its crushing poverty. Compassus sends voluntary employees each year to serve alongside the workers of Living Hope, an organization that provides ministries for the Southern Cape Peninsula and works to combat poverty and disease. And in South Africa, there is a staggering amount of both. South Africa has a 25 percent unemployment rate — one of the highest in the world. More than half of South Africans live below the national poverty line, with more than 10 percent living in extreme poverty, on less than $1.25 per day, according to a new report published by global 4 Everyday Compassion Vol. 7 Issue 1

aid and development charity Oxfam. HIV/AIDS, lower respiratory infections, diarrheal diseases and malaria were the leading causes of death in 2012, killing 3.3 million people — more than one-third of all deaths in the region — according to the World Health Organization. Earlier this year, 10 Compassus employees traveled to Cape Town, South Africa, for the 2015 Living Hope Mission Trip, and converged at the Team House, a beach house staffed by Living Hope employees. The Compassus team traveled to impoverished townships with “carers,” or aides, to visit patients in homes, hospitals, and clinics. “We began each day with carers by singing and praying together. They welcomed us with open arms and hearts and included us completely,” says Jill Frankel, admissions nurse for Compassus in Albuquerque, N.M. “They were kind and loving with patients as if they were family.” The team staffed mobile clinics at a university and near a train station, providing blood pressures, blood

St. George’s Cathedral in Cape Town was the site of a 1989 peace march led by Archbishop Desmond Tutu.

Compassus sugars, and Body Mass Index tests. employees The also provided HIV screenings provided prayers and supported patients through and singing to the process. patients in clinics “We sang and prayed with alcohol and hospitals. and abuse survivors,” Frankel says. “We danced with hundreds of children and served them sandwiches and apples. We also heard about children who took their sandwiches home to bury or hide them to ensure meals for the weekend.” “Despite the destitution, bright spots occurred each day,” Frankel says. “The poverty was eye-opening, but it was incredible to see people “The 10 of us focus only on what they have,” she says. “People quickly became were so appreciative of family as we visits.” explored worlds Compassus also served their colleagues outside of our by providing in-services comfort zones.” to about 60 carers from local communities. “Their response to receiving positive, supportive, and useful information and resources was moving,” Frankel says. Everyday Compassion Vol. 7 Issue 1 5

The South Africa contingent consisted of: Back: Michael Ahearn, Cheryl O’Neill, Bonnie Davidson, Sherry Healey Middle: Paula Pimentel, Avril and John Thomas (Living Hope founders), Jill Frankel, Elizabeth Cambo Front: Edward Knox, Rolly Legere, Bea Lafleur


Amid the crushing poverty was South Africa’s natural beauty, and the Compassus team got to experience that, as well, with trips to Table Mountain, a prominent flat-topped mountain overlooking the city of Cape Town; a park with African penguins; gardens; and beaches at sunrise and sunset. They also experienced its culture, including Robben Island, where former South African president Nelson Mandela was imprisoned for 18 of the 27 years he served behind bars before the fall of apartheid; the Heart of Cape Town Museum at Groote Schuur Hospital where the first heart transplant was done in 1967; shopping areas; and community markets. They also tasted ostrich, crocodile, impala, kudu and springbok. 6 Everyday Compassion Vol. 7 Issue 1

“The 10 of us quickly became family as we explored worlds outside of our comfort zones,” Frankel says, “and learned how to see life in a new way.” ‘JOURNEY OF A LIFETIME’

“The venture will last far beyond our return to the United States,” says Rolly Legere, a Maine-based Compassus home health aide. “Our 10 Compassus volunteers and the incredible team members of Living Hope are now one big extended family. We will never forget the experience and love we shared during our time together,” she says. “Thank you, Compassus, for providing us with a journey of a lifetime,” Legere says. “May we be true ambassadors for Living Hope and help educate, empower, and equip people we meet.”


Silver Linings I was lucky to have been part of my sister Pat’s challenge of a terminal illness. Before she died, Pat made a video sharing what she considered to be some “silver linings” of her journey. Perhaps some at Compassus could benefit from or identify with her thoughts.

— Marcia Hazen

To see the inspiring five-minute video, visit:

Former hospice patient Pat Wirtz made a video to encourage others.

It comes down to choices: Do I want to live in fear for the rest of my life, or look at this as a new experience? It gave me a chance to look back and realize how rewarding and incredible my life has been. I grew up in the Midwest with a family that instilled values and a strong work ethic. And I had 38 years with Mark (her husband and childhood sweetheart), growing up together and growing together while sharing a lot of adventures and moving to places we never expected to move to.

I realized that people die every day without the ability to tell their family and friends how much they love them, how much they’ve learned from them and how much they’ve touched them. And this one probably means the most to me. I heard my brothers say things I didn’t think I’d ever hear them say and that makes me smile every day. I reconnected with old classmates, old friends, who told me their heartfelt thoughts, and it was incredible.

I continued to be surrounded by the love and the laughter and the support of my close friends and neighbors. And last but not least, I learned to live in the present. Now is all we have and we need to appreciate it, no matter what our circumstances are. I cannot explain to you the sense of freedom and liberation that there is in not looking back on what happened yesterday and what might happen tomorrow, next week, next month. That is an incredible peace. This approach isn’t just for the dying. Wouldn’t it be wonderful for everyone to appreciate their lives today?

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Right before his hospital stay, we had an open house at our new office location and my dad was able to come eat lunch with me.

When Nikki Cockerham’s father, James Prestridge, entered hospice care where she worked, she was able to truly understand the emotions and fears that Compassus patients and their families experience. Here is her story: When I joined Compassus in 2012, I knew that I achieved my goal of attaining a great job. But I never imagined that having this job would put me in a position to be there for my family when I was needed most, which in turn showed me how to better help our patients. My father’s health started failing in 2013, a few years after he had retired as a truck driver due to diabetic eye problems. While my mom and I worked, he would sit home in his recliner all day and watch television. He was a fairly large man, and eventually he couldn’t get up and down out of the chair much. His diabetes led to renal failure and he eventually had cataract

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surgery and stents put in his leg, so he wasn’t able to drive anymore. All my dad ever knew was work, so being unable to even tinker around the house made his illness worse. As his illness progressed, Dad was adamant that he would not go on dialysis, so he was put on hospice care. I never truly understood what families went through until I was put in that position. It was a struggle to watch a once strong and independent man depend on someone else. I would go just about every evening after work to help him and spend time with him. My mom told me that he would not be still or rest all day. It was not until I got there and sat beside the bed that he would sleep. I was his only child, his baby girl. I knew he would be better off when he passed, even though it was still hard on me when he did in April 2014. My daddy is in Heaven watching over me and I know I will see him again one day. Hospice was the best thing for him. He didn’t have to continue going to the doctor — his primary physician came to him — and he was able to die peacefully in his home with us around him. Had I not been employed with Compassus, I don’t know if I would have been able to be there with him. It was a blessing to help with his care plan. I now know the feelings that people have when they are faced with the decision of hospice. Now when I answer the phone, I know how to empathize with new patients and their families because I have been there, too.


The jungles of Honduras helped Kelley Newcomer, MD bring her brand of medicine to Compassus Dr. Kelley Newcomer’s work as a medical missionary in Honduras particularly equipped her with the skills to be a hospice physician. She’s now medical director for Compassus in the Dallas, Texas, area and medical director for Manchester Place Assisted Living, but she once ran a diabetes clinic in the middle of the Honduran jungle. “In Honduras, I was used to not having a lot of things at my fingertips, (and) to really being practical with treatment and not ordering a lot of tests,” Dr. Newcomer says. “I had been practicing a very different type of medicine.” That approach served her well. “In hospice,” she says, “you have to be satisfied not knowing the perfect answer.” The satisfaction comes, she says, in being helpful to patients and their loved ones. “If you can come alongside a family in crisis and you can make that better for them — even just a little bit — they are so grateful and it’s so rewarding,” Dr. Newcomer says. “They’re so exhausted from constantly being on a treadmill, so to speak, and you can tell them, ‘It’s OK to stop.’” “I have never had patients tell me to do everything I can so they can keep going. If they can’t do what they want — the things they enjoy — they say, ‘I’m done.’” Working with hospice patients

was a natural progression from her geriatrics practice, says Dr. Newcomer, who received her medical degree from the University of Texas Southwestern. “My patients are very elderly,” she says, “and the issues are the same.” Dr. Newcomer, a Texas native who is board certified in Internal Medicine and Hospice and Palliative Care, chose to join Compassus because it allows her to do the hands-on hospice care she prefers. “When I first went to Compassus, I said to them, ‘I’m not your regular hospice doctor; I want to go see patients,’” she says. “Others want you to show up, sign paperwork and be on the sideline.” “Compassus’ big thing is, ‘We’re a physician-led company,’ and it’s true,” Dr. Newcomer says. “It’s wonderful to do something that you love with people who also love it. We have a really good team of nurses and chaplains.” She and her husband Mark, an ear, nose and throat doctor at a nearby medical school, have three sons — a high school senior, freshman and seventh-grader — and parents with significant health issues, “so we’re dealing with this firsthand,” she says. Dr. Newcomer also plays flute at her church and gives lessons — she received her undergraduate degree in music — and belongs to a book club that meets monthly. Everyday Compassion Vol. 7 Issue 1 9


Emotional return to Lombard Middle School By Ben Zigterman The Register-Mail Reprinted with permission by The Register-Mail in Galesburg, Ill.

Former colleagues and students greet John Delawder as he returns to Lombard Middle School, where he served as a teacher and administrator for many years. Ben Zigterman/ The Register-Mail

A longtime teacher and administrator returned to Lombard Middle School in Galesburg, Ill., as one of his dying wishes. John Delawder, 70, is on hospice care with atypical Parkinson’s disease and as one of his last wishes, Compassus arranged a visit to Lombard Middle School, where he had served as a teacher and administrator for many years. More than 30 people welcomed Mr. Delawder at Lombard, including former colleagues and students as well as current teachers and administrators. Principal Nick Sutton led Mr. Delawder on a tour of the building, pointing out what has changed over the years. “It’s a very, very pleasant surprise,” Mr. Delawder said. “It’s beautiful. The kids ought to really appreciate it.” Mr. Delawder served as teacher, dean and principal throughout School District 205 in Galesburg. He finished his career as assistant regional superintendent at the Regional Office of Education. “He’s been at almost every school,” his wife, Linda Delawder, said. His former colleagues were shocked to hear about Mr. Delawder’s situation and were eager to stop by.

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“It just totally broke my heart,” longtime Lombard teacher Phil Erickson said. “It was quite an honor to be able to work with him.” They bonded over similar values, Mr. Erickson said. “I enjoyed talking with him, not just about school business, but we’d talk about a lot of other stuff, too, because he’s a big family man, and I was a big family man, and we shared that interest,” Mr. Erickson said. Pat Callahan said he enjoyed working with Mr. Delawder when they were both assistant principals in District 205. “He was just a joy to work with as an administrator,” Mr. Callahan said. “He’s just a wonderful human being and a good Christian man.” Following the visit, Mr. Delawder visited the new football field and field house at Galesburg High School.


LEARNING TO BE HERSELF Willow was the most frightened dog I had ever known. Because of her profoundly timid personality, she had been returned to the Mo-Kan Border Collie Rescue, in Kansas City, Mo., three times by families who wanted a more engaging dog. Her last adoptive family hoarded animals, keeping them all in crates and giving them very little human interaction. That awful situation only served to intensify Willow’s anxiety and fear. Then I adopted her, and for a year I tried to help her out of her fearfulness. We also worked with a trainer, but nothing was working. She continued to hunker down in corners, resist petting, and avoid any interaction with me. Then, one night I was looking at the Mo-Kan website just to see the pretty faces up for adoption, and it came to me — maybe another dog could teach Willow how to be less afraid and more happy. I saw Holli’s photo. The Border Collie mix had been wandering the streets of Hollister, Mo., when she was taken to the city pound, whose employees contacted Mo-Kan. Holli was being fostered locally, so I called the foster mom and asked for a two-week try at seeing if Holli could help Willow come around. Holli was so happy, and so sweet and seemed

very smart, but Willow’s fearfulness was so severe that I realized it was going to take longer than two weeks. It has been three years now, and in that time Willow has learned how to be a happy dog simply by watching another happy dog. Willow saw Holli doing things, such as jumping up on a chair next to me to get petted. Willow would never do that; now, she does it all the time. Willow never stayed in the back yard by herself; I always had to be there. But when Holli came, she engaged with Holli and learned to be there with another dog. Willow does not hide in corners anymore. She greets me when I come home. She visits with company. Most of all, she has learned it is good to wag her tail and be happy. In the meantime, Holli and I have bonded because she is so sweet and happy and most of all, the smartest dog I have ever had. I am so blessed that I listened to my inner voice that said she could help Willow. She has been a real gift to both of us.

Holli, top left, helped shy, frightened Willow, above, learn how to be a happy dog.

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PURPOSEFUL LISTENING Look beyond patients’ conditions to truly know their hearts


Marilyn was one of our patients who had long lived on her own with a debilitating disease. She was a wife, mother and survivor whose determination allowed her to live life to the fullest, despite many trials. When Marilyn first came on service, she lived in a rural area in a small mobile home where it was difficult to tell where the outside ended and the inside started. But Marilyn was adamant about her home, and she defined space within it. Each area within reach of her chair — the dining area, the library, the living room — was clearly designated by walls only she saw. On the surface she may have seemed rigid, and even nonsensical. I think it was Marilyn’s creative personality that helped her find order in the midst of chaos. It was how she managed her life and the impossibility of it. Her boundaries helped her maintain a sense of peace in spite of it all. She soon discovered we both enjoyed reading and history. Marilyn could no longer read due to failing eyesight, but she loved for me to read to her. I began by reading short stories from the Chicken Soup books,

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which led to many stories from her childhood, as well as those of her parents. Marilyn grew up in Yuma, Ariz., and her mother was a local teacher who taught many generations of leading Yuma families. We soon moved to reading slim volumes of Yuma history selected by the librarian who brought books to the nursing home. She knew the family names of the earliest families here, as well as the various names of infamous outlaws, sheriffs and other local legends. Marilyn took delight in correcting my pronunciation, especially of rivers, names of towns and family names. She often said this was better than television and kept a list of points of interest to “research” later. Marilyn is completing her research now with the Ultimate Teacher, Our Lord. She was a blessing to me and to others in her world. People and their stories are powerful and personal. For some patients, it has taken the perspective of time to see any value in their stories; for others, they need time to heal. Some have tucked their stories so far back that perhaps it is the change that hospice represents, that moves them into the forefront. I share this as a witness to some incredible people we come to know, if we can see beneath the frail, often frustrated patients and into the stories they carry in their hearts and spirits.


Think You’re Too Old to Donate Your Organs? Think Again. 30%

99 million More than 99 million individuals in the United States are 50 years of age and over. If most people in this age group signed up to be organ donors, imagine how many more lives could be saved.

20% About 21 million — or 20 percent of the United States’ over-50 population — believe they are too old to register as a donor. People of all ages, however, can be organ, eye, and tissue donors.

2/3 Two-thirds of the individuals waiting for an organ transplant in 2014 were 50 years old or older. That year 2,371 deceased donors were between 50–64 years of age and 614 deceased donors were 65 or older.

120 million About 120 million people in the United States have signed up to be an organ donor. Add your name to the list!

AfricanAmericans represent the largest minority group in need of an organ transplant. Thirty percent of those currently waiting for an organ donation are AfricanAmerican.

12% A Gallup poll shows that 12 percent of people over 65 years of age mistakenly believe they are too old to receive an organ.

35% Last year, 35 percent of organ donors were over the age of 50. Source:

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Advance Care Planning relieves loved ones from making painful decisions for you.

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More than 30 years ago, Wendi Clarke of Buxton, Maine, and her mother were riding in a car when a difficult but important discussion took place. At the time, Clarke was appalled at the topic of conversation but, years later, she realized it was the most forward-thinking and loving thing her mother could have done. “While we were riding along — someone else was driving — she passed a brochure, her will and a spreadsheet to the back seat where I was sitting. The brochure was from a funeral home where she had recently made cremation plans and the spreadsheet reflected her wishes for the ultimate disposition of her assets,” said Clarke, a former paralegal at a family law practice in Gorham, Maine. “My reaction was, ‘Mom! Do we have to talk about this NOW?’ She caught me totally off guard. As time went on, she made a point of discussing her intentions with each of my four siblings. In hindsight, even though the topic and timing shocked me, I came to realize that it was good that she initiated that awkward and unsettling conversation with each of us. Upon her passing a few years later, there were no surprises and each of us was intent on honoring her wishes,” Clarke said. Unfortunately, not all stories have such a peaceful ending. As a hospice chaplain, I have witnessed the panic and anxiety experienced by some people who are forced to make end-oflife decisions for loved ones in the final

stages of death or who have already passed. At this time, sorrow and shock often negatively impact decisions that are made in the heat of the moment. That’s why planning is so crucial, as Clarke’s wise mother knew well. But in addition to planning for our death, we should also be planning for particular stages of our life — specifically health care and end of life. This kind of planning is called Advance Care Planning (ACP), and simply involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know your preferences. Charting a roadmap for your own healthcare with ACP puts you in charge of decision-making when it comes to your care. What’s more, it relieves your loved ones from making painful and unsure decisions for you. Advance Care Planning and some of the terminology that goes along with it may seem daunting, but we’ll explain what it all means. ADVANCE DIRECTIVES

Life can have unexpected twists and turns, such as the diagnosis of a terminal disease, stroke, heart attack or accident. Advance directives are written instructions concerning your medical care treatment options and who can voice your wishes. A good way to think about them is, “directions in advance (of your death).” These instructions will be

relied upon by your family, friends and doctor or other appropriate medical professional in the event you are unable to make your own decisions. LIVING WILL

Advance Care Planning involves learning about the types of decisions that might need to be made.

Living wills aren’t only for senior citizens or nursing home residents; they are for any adult. In a living will, your wishes are spelled out to lessen the possibility of confusion or disagreement over what you want when your life reaches its end. A living will is a legal document detailing the kind of medical treatment and life-sustaining measures you want or don’t want, such as mechanical breathing (respiration and ventilation), tube feeding or resuscitation. Everyday Compassion Vol. 7 Issue 1 15


It is important that you let your physician know your wishes concerning a “do not resuscitate” (DNR) order, which is a request to not have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. Advance directives do not have to include a DNR order, and you don’t have to have an advance directive to have a DNR order. Your doctor can put a DNR order in your medical chart. WILLS

A clearly and carefully worded will is your greatest protection.


The person you’ve carefully chosen to make decisions for you is known as your Power of Attorney (POA) and responsibilities vary, depending on designation. The durable power of attorney, also called POA, is usually a person, or agent, you designate to make all financial, legal and medical decisions for you. “Durable” is the term that is key to have the authority continue beyond the point that the person granting the responsibility is no longer of sound mind. A financial power of attorney helps with financial matters only. A health care or medical power of attorney helps with medical decisionmaking. PHYSICIAN ORDERED LIFE-SUSTAINING TREATMENTS

A POLST (Physician Ordered LifeSustaining Treatments) is a medical order for seriously ill patients and is in addition to advance directives. The POLST often works in harmony with advance directives to assure that those who are seriously ill will have medical treatment options and preferences carried out.

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If there is no will, the state will govern how a person’s estate is dispersed. Wills can be written by individuals or a legal professional but you should realize any Will can be contested. The value of an estate can change over time and while it isn’t necessary to review one’s Will every year, it should be reviewed after a major life change such as the birth of child, divorce or death. “It is a good idea for a parent to discuss the content of their Will with their grown children to avoid, or at least reduce, any animosity that might arise after their death,” Clarke says. “Most of us know of a family that was shattered by bitter postdeath resentment and/or hostilities over their parents’ estate. It doesn’t even matter whether there is a lot of money or very little.” FUNERAL ARRANGEMENTS

I’ve sat beside a person who had died during the past hour, while family members frantically thumbed through the phone book, trying to find a funeral home to send a hearse for the body. It is a scenario that can be avoided by accepting the reality of death and planning for it as best as possible. The biggest gift a loved one can give to his or her family — such as

Clarke’s mother gave her family — is having final arrangements completed and made known before death or serious illness. Then, before a tragedy, surviving loved ones can concentrate on grieving and healing. Pre-planning eases the burden for loved ones, who otherwise would be forced to make the decision for you at an emotionally-charged time and they don’t have to second-guess your wishes.

Did you know… Most people say they would prefer to die at home, yet only about one-third of adults have an advance directive expressing their wishes for end-of-life care. Among those 60 and older, that number rises to about half of older adults completing a directive.



The most important thing is to begin the conversation with loved ones now, if you haven’t already started. It may feel uncomfortable at first, but it is a necessary conversation to begin the process to ensure that your end-of-life wishes are carried out as closely as possible. And, once final arrangements have been made, there can be a sense of relief for everyone involved. Peace of mind is priceless.

Only 28 percent of home health care patients, 65 percent of nursing home residents and 88 percent of hospice care patients have an advance directive on record.




Home Health Care Patients

Nursing Home Residents

Hospice Care Patients

50% 65%-76%

Even among severely or terminally ill patients, fewer than 50 percent had an advance directive in their medical record.

Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.

Source: U.S. Centers for Disease Control

Looking ahead with an Advance Care Plan benefits everyone and allows wishes to be honored.

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Advance Care Planning documents demand careful thought and planning.

Advance Care Planning:

BEYOND THE DOCUMENTS The patient had end-stage COPD and was in the emergency room in acute respiratory distress. Though she had an Advance Directive instructing no intubation, her distressed family requested the procedure. Medical personnel gathered the family and explained the patient’s wishes and how she had relieved them from the burden of that decision by signing an Advance Directive document. Intubating would have 18 Everyday Compassion Vol. 7 Issue 1

denied the patient’s wishes, so the family agreed to abide by them. A 68-year-old male nursing home resident had completed a POST (Physician Orders for Scope of Treatment) document indicating he didn’t ever want a feeding tube, given his advanced Alzheimer’s Disease. It also indicated that he didn’t want to be intubated, but did want CPR. Unfortunately, his document was not signed by the physician, so when

he experienced respiratory arrest in the emergency room, the patient was subsequently intubated. Without the physician’s signature on his POST document, it was deemed invalid and because no family members were present, his wishes were not honored. Ensuring the Advance Directive and the other documents have been properly completed is an important step toward making sure an individual, such as these patients, gets the care that will honor their wishes. But appropriate documents are only part of Advance Care Planning; the process also assures that decisions are reached based on the premise that the patient fully understands the choices in planning their care. Making informed treatment decisions should involve lots of thought and examining such things as: One’s own understanding of their medical condition, potential complications and potential gaps. Prior experiences with family or friends with serious illnesses. Understanding life-sustaining treatments needed in medical emergency (CPR, mechanical ventilation, tube feeding) and their benefits and burdens. oals for treatment (comfort care, G trial treatments, full intervention) or any associated fears and worries. Documents that provide specific instructions for end-of-life care, such as a living will, do-notresuscitate order or a POST (Physician Orders for Scope of Treatment) form, a physiciansigned order form which puts into action treatment preferences for patients who are nearing the end of their lives.

When those key discussions do not take place and a medical crisis occurs, the perils and pitfalls become evident, particularly for those involved who are already under extreme pressure.

It’s important to know and document a patient’s wishes prior to admission.


Earlier this year, Compassus– Lafayette launched a new inpatient palliative care program in a large community-based hospital. The Advanced Practice Nurse (APRN) interacts daily with families, primarily in the ICU, and sees first-hand the dynamics of families in crisis. As a result, it is imperative to be assertive and begin these crucial yet difficult conversations. It is a great gift to give loved ones so they are not further burdened with making difficult decisions during a crisis. It should never be assumed that family members know what a patient would want and encouraging someone to share their wishes now will only help their loved ones later.

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Your Advance Directive Share the document and keep it handy

Ensure that your wishes are known by making copies of your Advance Directive and distributing them to your Power of Attorney, your family, and your physicians. Request that your physicians make it a part of your permanent medical record. Keep a copy in your home, and take one with you when you travel or are hospitalized. And keep an electronic copy on your computer, tablet or smartphone.




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Barriers to Advance Care Planning

So why have only one-third of adults prepared an Advance Directive?



While Advance Directives are supported by state laws, there is still no clear process to allow an individual’s wishes to be known and ensure that care is tied to those documents. A study found that nearly a third of terminally ill participants did not want cardiopulmonary resuscitation, but less than half of their physicians knew of their preference. Even when patients had written advance directives, their instructions had been discussed with a physician in only 42 percent of the cases.

The majority of Medicare beneficiaries of all racial and ethnic groups say that in the event of a terminal illness with less than a year to live, they would want to die at home and would not want to receive life-prolonging drugs with uncomfortable side effects or mechanical ventilation. However, researcher Amber Barnato, MD, MPH, and colleagues have reported differences in the distribution of preferences for end-of-life medical treatment by race/ethnicity. For example, compared to Caucasians, African-Americans are more likely to die in the hospital and to use intensive care and life-sustaining treatments, according to research. African-Americans also incur higher medical care costs in their last 12 months than Caucasians. While some of these differences are due to regions with higher end-of-life care treatment costs, some differences may be due to minorities’ lower usage of hospice services and Advance Care Planning documents.


A key part of the problem is our society’s denial of death and dying, and of being in a circumstance in which we are unable to make our own decisions and speak for ourselves. “We don’t really acknowledge the waning days of life like we do with a birth,” says Judith Peres, MSW, a policy consultant in palliative care and long-term services. “Denial about death does a disservice of not dealing with life-review and life closure issues that some people would choose to do if they were thinking about dying as part of this last phase.” CONFUSION

Despite a strong preference for quality of life at the end of life, many Americans worry about potential conflicts between palliative care and doing whatever it takes to extend a patient’s life, a poll found. Almost half — 47 percent — of respondents said they worry that emphasizing palliative and end-of-life care options could interfere with doing whatever it takes to help patients extend their lives as long as possible. One way around end-of-life denial has been to discuss palliative care (which may or may not involve end-of-life care) much earlier.

Reprinted courtesy of the Centers for Disease Control

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Support For

CAREGIVERS Caring for someone at the end of life can be physically, financially, and emotionally exhausting. Realize this is a difficult time for you, too.



It is important to care for yourself as well as the dying person. This means taking time to eat nutritious meals, sleep, exercise and avoiding becoming socially isolated. Allow others to show their support by accepting their offers of help. Although you may feel guilty or anxious about leaving a dying person’s side even for a moment or asking for help, doing so will help you avoid caregiver burnout. 22 Everyday Compassion Vol. 7 Issue 1

Respite care temporarily relieves people of the responsibility of caring for family members who cannot care for themselves. Respite care allows you to have a break while knowing that the dying person is being well cared for. It is provided in a variety of settings, including homes, adult day centers and nursing homes. Respite care providers can ease the day-to-day demands of caregiving by assisting with daily living activities, giving medicine, housecleaning, grocery shopping, cooking and providing emotional support.


Family and friends often want to help, but they may be uncertain of what is needed. Be prepared to ask for help with specific tasks, such as grocery shopping, doing laundry, picking up medicine from the pharmacy or sitting with the dying person while you rest. Consider the interests of family and friends; if someone enjoys reading, ask him or her to read aloud to your loved one. Someone who enjoys cooking may be happy to prepare an extra serving for you.




Setting up a phone tree or a listserv for the family can reduce the number of calls to the house of the dying person. A listserv is a way to send the same message to a large group of people by email. A website or Facebook page also allows loved ones to share news, thoughts and wishes.

If you belong to a church, synagogue, temple or mosque, you may have a strong support network ready to help. If you don’t, you may still request volunteer help from faith, ethnic-based and other civic organizations whose mission is to provide such services.

Communitybased services across the country support independent living and are designed to promote the health, wellbeing, and independence of older adults. Often, community-based senior citizens’ services offer companionship, household help, caregiver respite, adult daycare and transportation.

Reprinted courtesy of

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Celebrating One ‘Sweet’ Birthday Aide Kendra Duke gave Glenn Boutwell a happy birthday with a small surprise party.

Most of us remember having birthdays as a child, but as we grow older, that special excitement is lost, especially if you know it may be your last one to celebrate. Glenn Boutwell is a quiet man who raised his family of two sons and a daughter with his wife, who passed away several years ago. Glenn was living alone when he became a hospice patient with end-stage Chronic Obstructive Pulmonary Disease (COPD). Glenn wanted to remain at home, even as he grew weaker, thanks to a son and daughter who attentively looked after him and friends who provided meals. He lived in his chair surrounded by everything he needed for the day, including his phone, television remote and snacks. Snacks and sweets were about the only thing he would eat regularly, despite the full meals delivered to him. He simply didn’t have enough energy to eat much. Eventually, he moved in with his daughter, who placed his recliner, table, and TV in a room just for him. She also installed cable and his own telephone so he could retain as much independence as possible. He enjoyed the hospice visits and became especially fond of aide Kendra Duke. As Glenn’s birthday approached, Kendra wanted to make it extra special for him, so she thought about his favorite foods. He was now basically living on cookies, cakes and a nutritional drink. He continued to lose weight and would become very

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upset if he thought someone would be taking away his “sweets” because he didn’t want anything else. Kendra decided to make him the last visit of the day in order to surprise him. She called ahead and made sure that he knew she was coming, but that her visit would be later than normal. As she approached his room, she could see him leaned over in his chair, asleep. She walked in singing Happy Birthday, and he perked right up to see a huge balloon bouquet, cookies, and bags of candy. He was thrilled to have a party “just for my birthday!” Sometimes we forget what making a big deal about a birthday really means to someone who has forgotten what it feels like to celebrate. The smile on Glenn’s face was priceless and a reminder that every person needs to be celebrated.


As a young woman, Shirley Murr, originally of Detroit, Mich., planned on doing medical missionary work. But when life didn’t take her in that direction, she decided it was not where the Lord wanted her. Or so she thought. Instead, Shirley, who now works at Compassus in Springfield, Mo., took basic nursing classes, graduating in 1957. Shirley headed west to Montana after graduation, meeting and eventually marrying Vern. Montana’s cold winters became too difficult, so the couple moved to Springfield, Mo., in 1988, near other family. Shirley applied at several healthcare agencies, including Compassus, but she was hired as a supervisor at another health center. But administrative issues were stressful and one morning, her favorite patient commented that Shirley had not spoken to her that day. Shirley knew then that it was time for a job change. In 1990, she came back to Compassus and interviewed with Anne Cobb to be a hospice nurse. During the interview, Anne pushed a piece of paper across the desk and asked Shirley to look at it. It was Shirley’s application from 1988 and across the top of the paper, it read, “If this woman returns, hire her!” Shirley retired in 2000 from fulltime employment with our company, but she continues to work “PRN,” or as needed. Working PRN has given her the feeling of having done something worthwhile at the end of the day, she says. “This is where God wanted me — it just fit. This is where I am supposed to be.” And remember Shirley’s original

THE ACCIDENTAL MISSIONARY Sometimes we get what we want without realizing it Shirley Murr, left, celebrates 25 years with Compassus, along with Kay Koch, Director of Clinical Services for Team 3.

plan of doing medical missionary work? A moving encounter with a patient’s family showed her that it didn’t go by the wayside, after all. One of her patients was in the dying process and the family was at the bedside. She did what hospice nurses do — get the pain under control, get the patient comfortable and put the family at ease with the process. Shirley stayed with the patient and family until the patient passed. One of the patient’s granddaughters then asked her, “How long have you been in this ministry?” Shirley knew at that moment that God had led her on her medical missionary journey — just not exactly the path she had anticipated. Everyday Compassion Vol. 7 Issue 1 25


7 Questions to Ask Your Doctor From Caring Connections, a program of the National Hospice and Palliative Care Organization If you or someone you love is very ill, ask the tough questions. These are samples of the kinds of questions we suggest that you ask. We are sure you will want to ask others, as well. Before you have these conversations, take some time to think about what you want to know and make a list to help you remember.

1 Will you talk openly and candidly with me and my family about my illness?

2 What decisions will my family and I have to make, and what kinds of recommendations will you give to help us make these decisions?

Make a list of questions you want to ask your doctor so you don’t forget anything.

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3 What will you do if I have pain or other uncomfortable symptoms?

4 How will you help us find excellent professionals with special training when we need them (for example, medical, surgical and palliative care specialists, faith leader, social workers, etc.)?

5 Will you support me in getting hospice care?

6 If I reach a point where I am too sick to speak for myself, how will you make decisions about my care?

7 Will you still be available to me even when I’m sick and close to the end of my life?


SERVING THOSE WHO SERVED FOR US Former combat soldiers may need a unique kind of care The Japanese attack on Pearl presence of this combat veteran Harbor, Hawaii, in 1941 stunned who had not spoken one word of virtually everyone in the U.S. military. his wartime experiences to any Japan’s carrier-launched human being until his death was bombers found Pearl Harbor totally nearing. Now his wife, children and unprepared. President Franklin grandchildren were hearing the Roosevelt quickly addressed Congress horror that Brian had kept silent for to ask for a declaration of war for this nearly 50 years. event, “Dec. 7, 1941 — a date which Sometimes veterans need will live in infamy.” communities that can offer the nonFor men and women who served medical languages of confession, in our Armed Forces, their lives were repentance and forgiveness. And forever changed by their experiences. above all, they need to be taken However, for many, they returned back seriously as moral beings who have home to America, never to speak of stood for us in hazy and complicated those wartime experiences again. places and who now bear witness to I am reminded that hundreds of what that commitment entails. thousands of veterans suffer from As Brian’s death quickly combat-related postapproached, he traumatic stress (PTS) needed sacred space and its effects. to express the toxic Our Compassus Dr. Warren memories that had employees and staff Kinghorn, a staff haunted him. are honored to serve psychiatrist at Rituals can Durham Veterans often help our all veterans: past, Administration veterans experience present and future. Medical Center, wrote the confession, We never take lightly forgiveness and in a recent article, “In 2012, more Army the ultimate sacrifices cleansing they are soldiers died by men and women make seeking prior to suicide than have their death. Rituals on our behalf. died by hostile fire are taking place all in Afghanistan.” An around us all the time. estimated 22 veterans I often urge choose to complete suicide every day. individuals and families to consider Compassus served World War II some ritual or ceremonial observance veteran Brian along his end-of-life of acknowledgement if that will help journey. As his death neared, Brian provide comfort and possible closure reflected upon members of his troop for the journey yet to be traveled. who never made it back home and We are honored not only to hear all the suffering he witnessed during their stories but seek to honor their their tour of duty. wishes as they near the end of their I was humbled to be in the life journey.

Veterans frequently need to experience confession, forgiveness and cleansing prior to their imminent death.

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Interested in volunteering for Compassus? Volunteers interested in assisting hospice patients and their caregivers can help in three areas, which offer a wide variety of tasks and activities.




Patient Support Volunteers provide companionship to the patient and respite for the caregiver. Ways to help include:

Bereavement Volunteers support families and friends of deceased patients. During the grieving process, the volunteer is an invaluable resource, especially for those who lack a solid support network. Ways to help include:

Administrative Volunteers help the hospice staff, often by working in the office. Ways to help include:

Friendly visits Writing letters Reading to patients Light housekeeping Running errands Meal preparation Hair care

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Typing, filing and other light office work

Assist with grief support groups

Sending birthday cards, sympathy cards and bereavement notes

Coordinate community resources

Assisting at community workshops

Help Bereavement Coordinator with writing letters and making calls

Coordinating support services Making deliveries


My Promise to Daniel After fighting three primary cancers in 30 years, Daniel Collins, 74, was coming home from the hospital to die in his own bed. What I didn’t realize that day last April was that because I, the hospice nurse, was present upon his return from hospital, Dan believed he would die that same day. As I completed my admitting paperwork at the kitchen table, Dan’s son-in-law told me that Dan was sitting up, exhausted and too terrified to sleep because he believed he would die as soon as he slept. His head bobbed back and forth as he fought to stay awake. I quickly explained to him that I was there to move in his equipment, arrange his medications, and make sure he had everything he needed to keep him comfortable in the days and weeks ahead. He was skeptical, but decided to trust me and soon fell asleep. When he awoke, he was pleasantly surprised to find me still sitting at his bedside. I explained to him that hospice is not a timeframe or a place, but a philosophy of care, and that we help people to live life to the fullest with their disease before we help them die peacefully from that same disease process. When Dan started telling his family that he thought maybe he had a week to live instead of a day, I explained that instead of counting down his days, he should maximize the time in between with his wife and family. He decided to get out of bed and go get a haircut and his family posted pictures of him on Facebook in the barber’s chair smiling and laughing. Soon after that, he ventured to the mall to buy some clothes to fit his new slimmer build so he could look handsome as he socialized. It helped

divert his attention away from death. Every week there were pictures of Dan on Facebook at christenings, parties, eating in restaurants — all documenting for his extended family how well he was doing. On Father’s Day in June, he was leaving a party and had a bad fall that bruised his nose. Though he laughed it off and said it didn’t hurt, he became weaker every day and eventually was forced back to bed. One day he asked me, “How will my death look?” I promised him if he would trust me that I would ensure that his death would be painless and he would just go to sleep peacefully. On the morning of July 13, 2015, I decided to visit him and spend some time with him. He was agitated when I arrived so I took his hand and said, “Dan, it’s Sandra. I’m going to stay right here so you can relax now.” He immediately settled down and went into a peaceful sleep and stayed like that until 3:53 p.m., when he took his last unlabored breath. My promise, with God’s help, was fulfilled.

Daniel Collins’ experience with hospice care included happy outings and family time.

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