Person-Centered Care in Urgent Care?

PennyCook2013smallBy: Penny Cook, Executive Director Colorado Culture Change

It’s rare for me to write a personal article for our newsletter but I want to share a recent experience I had with our health care system. A few weeks ago I started out my morning like many others by going for a run. Before I even took the first bounding step, I twisted my foot (I was looking up at the full moon and was taught once again that I can’t always do two things at once). Luckily I didn’t fall or one of you might have put an alarm on me. Not thinking anything of it, I continued on that run and only hours later did I realize my stupidity as my foot swelled and I became unable to bear weight on it. Normally I try not to access our health care system for myself because of my cynicism and stubbornness but when I couldn’t even walk, it was time. My son drove me to the nearest Urgent Care Center and even as I hobbled in I was dreading it. I thought the wait would be forever, I would just be a number, the doctor wouldn’t really care about me, etc. You know what? It ended up being the two most fun hours of my day. Really! Here’s why.

The first thing they did after asking my name is told me how long I would most likely be there. How respectful of them. Next they asked me if I prefer Penny or Miss Cook. Rarely do I get to make that choice. They even gave me the option of using a wheelchair or not. Not wanting to lose my independence there, I said no. After completing the required paperwork I sat down to wait. But then another pleasant surprise when someone came out to the waiting room and passed around a basket with a variety of snacks. And they left it there so we all had access to food at any time.

I was sure this couldn’t last when I was shown to a typical, sterile examination room but when the nurse came in and asked if she could take my blood pressure and pulse before she even got out the cuff, I knew these people were my kind of folk. It only got better from there. The doctor spent time with me and didn’t even laugh when I told him what I’d done. The x-ray technician asked what I did for a living and when I told him, we bonded over the fact that his first job in high school was in a nursing home. He told me how it totally changed what he thought of nursing homes because people were living vibrantly in small households with lots of choices. Hmm…that’s a little ironic. Come to find out he’s from my old stomping ground in Rochester, New York and worked at the iconic, Fairport Baptist Home, one of the pioneer homes of culture change.

As I got fitted just right for my crutches, I thanked everyone who I met that day. I told them what a pleasure it was to be treated as a person by people who obviously liked to do what they do and work where they work.

My son could only laugh as I gingerly navigated the sidewalk on crutches with a huge smile upon my face. We are changing this institutional world of health care, one small step at a time. If you have your own story about person-centered care, please share it with.

Excerpts from Julie’s Journal

trocchio_julieBy: Julie Trocchio, RN, M.S.,Senior Director, Community Benefit and Continuing Care, Catholic Health Association

I sat in a doctor’s office while the urologist calmly and rationally drew me a picture on exam-table paper of where the cancer was and what we would do about it. I sat calmly listening to him, but I definitely was not rational. I could not think straight.

What he didn’t know was that in those few minutes of our conversation, I had been transformed — from a busy, healthy person to a cancer patient who was about to step into the unknown and perhaps closer to the end of the line. He has no idea what is really going on inside of me, I thought, so how can he take care of me?

When our visit ended he said, “Well, by our age, we all get something. This is yours. Me, I have a bad back.”

But cancer is different. So is every serious illness. Walking back from that visit, I decided I would try to use my experience to show doctors and others what it was like to have cancer and to be a patient. I started by trying to describe how cancer shakes one’s sense of self, and that became the first entry in this journal.

CANCER MADE ME LOSE MY COOL
One thing cancer taught me is that robust health can be deceiving.

I have always thought of myself as fairly cool. I am an active, walking-everywhere, traveling-to-interesting-places, non- (well, almost) TV-watching lady. Then I heard I had cancer — probably treatable, and even better, curable. And now I am none of those other things. I cannot exercise except for some stretches and short walks; my trips are cancelled; all my conversations seem to be about my health or lack of it. Oh, and I watch “Storage Wars” on cable TV, over and over.

I have so much time on my hands that I am boring myself. Even my dogs are finding me less interesting, missing their long walks. I miss laughing.
I used to talk to gym friends about politics, art and going to the ballet. Now I talk to my doctor about going to the bathroom. When he asks, “How are you feeling?” how do I tell him, “Uncool,” and have him realize this is serious?

YOUTH
They are so young, the doctors doing a residency in this specialty. “Where did you go to medical school?” I ask, and I learn they went to Harvard, or Georgetown, or George Washington University, or other satisfactory places. “Well, that’s good,” I say, while thinking, “Who was president when you were born?” Oh, dear.

My friend said I should ask how the bars were around their schools. If they say, “I was too busy studying to find out,” it is good news. I ask this once to a young resident, he replied, and then I tell him why I asked. “You got me,” he said. The bars in LA, he had answered, were just fine.

“No one wants to have an urologist,” I observe to one of the residents. “Most of us want to have a family doctor, lots of us want an obstetrician, a few want a plastic surgeon, but no one wants a urologist, you should know this.”

“But if we need one, we are very glad you are there,” I quickly tell him. “We are glad to hear that this is a special specialty, for the best and brightest.”

COVERING BASES
I went to confession. I had not gone since before Vatican II, so the timing seemed right. The priest, Father O., new to our parish and wonderful, said God forgives us our sins, but the sacrament of reconciliation celebrates grace and forgiveness. Father O. said he goes twice a year, sins or no.

My penance was an “Our Father,” and he asked if I remembered the Act of Contrition. I did, but it evolved into the Memorarae, “despise not my petition but in thy mercy hear and answer me,” which I have been saying at every stop light.

A lot of nuns are praying for me. According to Jennie, one of my two daughters, her college roommate has all of New Jersey praying for me. My primary care physician is praying for the cells to reverse themselves, and she is a very good prayer. A nun from Syracuse is up for sainthood and needs a miracle to make it all the way, so I have been praying to her. I think I have my bases covered.

THREE CHANCES
In religious circles there is a joke about a man about to drown in a flood. A car comes by, offering to take him to dry land, but he says, “God will provide.” The waters rise to the second floor of his house and a boat comes by, offering to take him to safety. “No,” he says. Then, when the water gets so high he is on his roof, a helicopter tries to save him, but he insists that God will provide. When he drowns and gets to heaven, he asks God why he did not save him, and God says, “I sent a car, a boat and a helicopter.”

I, too, had three chances. When I first saw blood, and going to the bathroom hurt, my doctor said to go to the ER and let’s see if it is an infection, the most common cause. The physician assistant at the hospital gave me a prescription for an antibiotic and said, “See a urologist.” But I got better with the antibiotic, so I followed up with my doctor because a urologist was bound to do something awful to me, and it was probably just an infection.

I looked up “blood in the urine” on the Internet and read, “This must be attended to.”

At a solidarity meeting, Betty said, “I saw a drop a blood, just a drop, found out it was kidney cancer, had surgery and now I am fine.”

Three warnings.

I kept treating myself with lots of fluids and asking my physician, often when I was traveling, for a prescription for urinary tract infections. When I mentioned the blood during a physical, I made light of it, slipping it between “I have been eating more vegetables,” and “I think my eyes are getting worse with age.”

I told my GYN that when I got a urinary tract infection, I saw blood, and sometimes after spin class. “At your age, that happens,” she said. “Don’t stop spinning, it is great exercise.”

When I told my boss, a nurse, she asked, “How long have you been treating this as an infection?” When I said two years, she said, “Oh dear.”

I am a nurse too, or at least used to be. I should have warned myself.

HOW I FOUND OUT
I thought I was having lots of urinary tract infections, until we did a culture and no germs were there.

I saw a urologist who said my symptoms were most likely from stress, so I should take a vacation and drink less coffee, but to get a sonogram and “give us a sample to be on the safe side.”

The sonogram showed something was there.

“These tumors are very common,” said the radiologist who looked at the sonogram. “Take it out, get checked every few months for a few years, and you are good to go.”

But there were cancer cells in the sample.

“Get a CAT scan, and schedule surgery to get it out,” said the urologist. “All tumors have some cancer cells, so it could be minimal, but let’s find out.”

I waited two weeks to hear cancer was in the lining of the bladder but not the muscle.

“It could be hiding. I am haunted by the faces of patients who had hiding cells, so let’s dig deeper and biopsy again,” said the urologist.

“OK,” said I, who used to be afraid of anything a urologist might do.

Let’s do it and wait some more.

WHY, HOW?
So how did I get this cancer? I don’t smoke, at least not since everyone did. I don’t drink diet drinks or eat processed foods. I exercise and have a positive outlook on life. I think it is those X-ray machines in airports. I told this theory to my recovery room nurse, who said I shouldn’t blame it on airports. He asked: “Were you ever exposed to well water? It might have had arsenic.”

Now the research is telling us that smoking — ever — seems to be responsible for a lot of bladder cancer. So, maybe, because of bad decisions in my 20s, this was my fault after all.

NORMAL
Between procedures, I went on a short business trip and loved every minute: driving to the airport, getting a newspaper, standing in line to board, finding a nice restaurant. At my meeting, no one looked at me with sad eyes or had any idea of what was going on in my bladder. “How was your trip?” asked daughter Elizabeth. “Wonderful,” I replied, “I felt so normal.”

“Well, you are normal,” she said.

“I sometimes don’t feel normal when I think of what is going on,” I said.

She looked at me and said, “Then don’t think about it!”

So I stopped thinking about it most of the time, and she is right. It helps me feel normal.

COOKIES
I make my doctors cookies. I want them to know that I am not just the 2:15 appointment, but someone. I want them to know I appreciate their gifts but that I have gifts, too, even if it is just mixing butter with sugar and flour and putting it in the oven. I want them to look forward to seeing me and what I bring, to give me full attention. It always worked for subcontractors when we had our house remodeled. I am hoping it works on doctors, too.

WHAT PATIENTS WANT TO KNOW
The cancer center websites tell me a lot: the warning signs, probable causes, cell structure, treatments, percentages. But the National Institutes of Health (NIH), the Cleveland Clinic, Johns Hopkins, Sloan-Kettering, Dana-Farber — they don’t tell me what I really want to know: What will happen next? Will it hurt? Will it work? What then?

HARD LESSONS
My friend Lawrice said I should ask, What am I supposed to be learning from this?

So, OK, what have I learned: I have more friends than I thought and they are better friends than I thought. You cannot do enough sit-ups to protect yourself from cancer. Feeling well does not mean being well.

I wonder if this is what she meant?

REFERRALS
“I am really a lifestyle urologist,” says my doctor (something I wish he had told me before operating on me twice), “so I am sending you to two specialists.”

One is an oncologist who specializes in blood and urinary cancer. I am a bit concerned about this because those cancers don’t seem to have much in common, but she did a fellowship at NIH so that is all right.

The other referral is to a urologist who specializes in cancer. I am concerned that is a euphemism for cancer surgeon (which it was), and surgery is not my personal treatment preference. But he was kind and competent. Just what I needed.

A classmate’s husband is a cancer guru and promised to look over my treatment plan. A friend came through with the name of a personal trainer who has recovered from cancer and helps others to do the same. The Cancer Hope Network gave me Zooey and Anne, lovely ladies who have been there, done that, with bladder cancer. I am assembling quite a team.

ONCOLOGY
As a student nurse, a real nurse, as a visitor, I have passed many doors labeled “Oncology” and each time, yes, each time, I have said, “Not me, thank God, this is not for me.” Today it was for me, and I was happy to get the appointment so quickly. The office had dim lights, soft music and there was a waterfall. The oncologist was warm and welcoming and sympathetic. But still it all meant CANCER.

So it is not an infection, not stress, not a benign tumor and not an easy kind of cancer. It is the bad kind of bladder cancer (who knew there was a good kind?). Three doctors explained it to me, and I think I finally get it, although I acted like I did the first time. I say, “Take it out, get rid of it, I hate this troublesome bladder.”

But then I think, maybe if I pray hard enough, a miracle will happen and it will go away by itself. But no, that won’t happen. I need to be optimistic that surgery will go well, and I will soon be better.

So there you have it, all the stages: denial, anger, bargaining and finally acceptance. Guess the books are right.

TRISH
Trish was in my nursing school class and now does mind/body work. On the phone, she asks, “What is troubling you right now?” I say, “I think of surgery as an assault on my body, a violent act about to happen.”

For 30 minutes, she guided me to realize surgery will be healing, not damaging. “You must talk to your body,” she said. “Tell your circulatory system to get ready, your immune system to stay strong. Tell your urinary system you are sorry it is hurting. Tell them all you will need them to get well, that you love them and that you will all get through this. This works,” she says. And I believe her.

GETTING READY
Finish this, finish that. Cancel this meeting, reschedule another. Find a substitute, find a gift to thank substitute. Tell her, her and him. Buy lightweight books and lightweight robes. Change dental appointment. Make list for wonderful sister, Suzy, who will be coming from Wisconsin. Google “gas pains after abdominal surgery,” and buy what is recommended. Get pre-op prep and post-op pain meds. Buy and send birthday presents, order Christmas presents. Pack a bag, repack. Go to church to get blessed. Rest. Reassure everyone. Thank people for praying.

Bladder cancer has become a full-time job.

GOALS
Here are my goals for surgery:

Don’t get an infection
Stand and walk that night
Walk a lot
Get my digestive system working quickly so I can get home
Leave cancer behind

THE HOSPITAL
Here are my observations:

I always thought that ICU nurses cared for machines, not people, but turns out they are the best, most compassionate nurses in the world. I had the same thoughts about operating room nurses, and the best nurse I met was an OR supervisor. She took charge of making sure I did not have pain after surgery. Some things you have to experience to believe.

All the quality policies in the world cannot make a quality hospital. Nurses had policies for doing a nursing assessment on each 12-hour shift, but only one nurse did so. All staff must wash hands entering a room, but only 1 in 3 did. When I asked a nurse to wash her hands, she gave me some look!

Travel and temporary nurses should be banned. They did not know the equipment or the policies. Nurses and aides who worked there the longest were the nicest, most caring, most competent. Longevity matters.

A teaching hospital is full of teaching. My first morning walking, I opened my door to the sight of about a dozen green-clad med students in short white jackets, spilling over the chairs in the chart room like puppies. I thought I was in an episode of “Gray’s Anatomy.”

The residents are so earnest, even when I tried to coax personal information and gossip. One of them, the most solemn, said very matter-of-factly when I had a discouraging moment, “Hey, this is the biggest surgery we do, and you are doing great.” It was the best hug I could have had.

Doctors don’t talk to nurses. These groups are on parallel paths, caring for the same patient. I would say to a resident, “… as I told the nurse, this is happening,” and it would always be news. They work in teams, but doctors and nurses are not on the same team. Makes me wonder what team I am on.

Infections happen, despite all efforts. Five days after discharge, I was in the emergency room for 10 hours, then readmitted to get IV antibiotics.

RECOVERY
It takes a village to recover from surgery. Every day in the hospital, I was visited by the residents on my service and a team of pain specialists. My daughter Elizabeth came daily, usually in the evening to play a few hands of gin to help me fall asleep. My wonderful sister Suzy came to take me home, and she never stopped cooking and doing. Her custard was amazing.

Daughter Jennie left her Florida school where she teaches — and her dissertation — to spend a week, ordering clothes and supplies and taking me on walks outside. Home-care nurse won’t quit until I get the hang of self care. Husband stepped up to all the chores. I told friends we did not need meals, but several brought soup, and each bowl was wonderful. I am not used to needing people, but needing I did, and the help was not only welcome and humbling, but healing.

WORDS TO LIVE BY
So many lovely and funny and touching cards and notes have come. But my favorite words came from a catalog: “Life is not about how fast you can run or how high you climb, but how well you BOUNCE.”

THE PORT
I am back in surgical admitting for the fourth time; I am getting a port for easier chemotherapy. I see some familiar faces, including the lovely lady who, my first day, had just graduated from probation to full time and who had taken down my information each time. (Actually she collected the exact same information each time — what are electronic records for?)

Everyone is nice, as always; everyone knows what they are doing; everyone went to good schools (I always ask, and I quiz the radiologist on bars in my hospital’s neighborhood). As I am wheeled into the room, my nurse and I spot a dozen blue-suited young men and women.

“FBI?” I ask the nurse. “No, looks like Secret Service,” he replies. Turns out they are med students interviewing for residencies in radiology. “Good luck,” I say to them.

I had been promised music during the procedure and that it wouldn’t hurt a bit. The music is Bing Crosby Christmas carols, and I tell the radiologist a surgeon would not stand for this. But they were right about it not hurting.

PREPARING FOR CHEMO
Monday is my first day. Daughter Elizabeth is coming with me, and we will be bringing catalogs and an iPad for shopping, because it is “Cyber Monday.” We have done other things to get ready; for example we packed snacks and books and hard candies from sister Suzy, who heard that chemotherapy can leave a bad taste. Elizabeth’s friend, Richard, who is an oncology nurse, gave me Chemotherapy for Dummies, which I have read carefully. I am wearing Betty’s Cancer Survivor bracelet because she is cured and does not need it, and Jennie’s Fighting Bladder Cancer bracelet which has the official bladder cancer colors: marigold, blue and purple. I have asked my sodality to pray that the chemotherapy will be healing, not hurting.

Yesterday we stopped by church to get a blessing for this next stage of the process. Father O. proved to be a powerful advocate with the Almighty before my surgery, so I am sticking with him, and I thanked him with blueberry cookies.

I have been listening to and will bring an imagery/visioning/meditation tape. I decided against the ones with warring themes — little soldiers or motorcycle gangs battling cancer cells — in favor of a tape about a glowing light and being surrounded by loving people from my past and present.

I changed my toothbrush, as you should for any big occasion. I also had my hair done. Looking my best for a new audience seemed the right thing to do.

Yes, I am ready.

ROUND ONE, DAY ONE
Waiting seems to be the permanent speed in oncology. Everyone is gentle, and no one is in a hurry. Good thing I left my type A personality behind months ago. We wait for blood work, then to see the resident, then to see my oncologist,
Dr. A-C.

Blood work shows red cells up, so I can cut back on the iron pills. I am able to advise the resident what to do for her twin boys who are teething. Dr. A-C is informative and caring, and I am glad Elizabeth can meet her. Elizabeth says, “I feel well-informed now.” The doctor writes me a prescription for an antinausea drug that she says I will not need.

Once in the infusion room, sunny and surprisingly cheerful, my chemo nurse explains everything and gives me hand-out information about the drugs and side effects.

“Psst,” says Shirley, my neighbor to the right, “I have found it best not to read those things. They only put ideas in your head.” So I put it all away and start a great mystery novel.

Elizabeth stays for five hours, and we eat our way through the treatment: graham crackers, nuts, turkey sandwiches, soup. We have so much fun talking that we forget to cyber-shop. When it’s time for Elizabeth to get ready for her job, Debbie from my office comes to sit with me, and she swears it is not bringing up past bad memories of her own chemotherapy (which she did without taking a day off). My neighbor to the left shops feverishly on his computer. “Yes!” he yells, “I just got a $185, complete Nerf war game for $56!”

The drugs start. First I get saline for hydration, then two antinausea medicines and a steroid to boost everything, then Drug No. 1 and then No. 2. For each of these big-boy drugs, I listen to my imagery tape and have a vision of being surrounded by friends and family in Cape Cod with a warm light coming from a fountain that flows into every organ, every cell.

I did not know how I would feel: weak, sick? I had told myself, I will feel exactly the same. But what I feel is good. It’s working — all of it, the therapy, imaging, the prayers, the support (I got over a dozen “You go, girl” e-messages during the day), and the belief that all will be well.

SIDE EFFECTS
There is nothing humorous about chemotherapy’s side effects, but there are some heartwarming signs: Elizabeth brings home a thermometer and saltines. Wonderful sister Suzy researches integrative care solutions and suggests “sea bands” used for sea sickness. Jennie orders them — and everything else Amazon has for nausea. Husband shops for oyster crackers and ginger ale. Lawrice brings chicken soup and good company.

Wonderful brother Peter sends the most unexpected thing: ice cream. I think mint chocolate chip may be chemotherapy’s equivalent of penicillin for strep. Jill, who has had chemo twice, promises to walk me through this, and she promises it will not feel like this every day.

My insurer had a nurse manager call; she mostly talked about herself but distracted me for 15 minutes. And the dogs won’t leave my side, but that might have to do with the oyster crackers I generously hand around to all of us.

CHEMO CULTURE
My college roommate, Margaret, takes me for my second chemotherapy. She is a labor and delivery nurse; I knew she would be helpful. She gets a phone call right when we reach the treatment room. “Is it OK to use a cell phone here?” she asks the infusion nurse. “Of course,” is the answer. “There are no rules.”

In other words, what happens in oncology, stays in oncology. It’s true. Where in other parts of the department doctors rule, here, (fabulous) nurses rule. An example: Meg, my nurse, hears that I have been feeling like crawling in a hole, and she asks to see what I have been prescribed. She rearranges the order and times of the medicines and says, “I think this will work for you.”

There is a friendliness here you never see on the Metro or at the grocery store. “Your purse is great,” I tell the wife of a chemo neighbor. “$75 Vera Christmas item, my sister got it at an estate sale for $1!” she replies, and we spend 20 happy minutes talking about bargains and how to find them. “Love your dress,” calls a lady who is leaving for the day. “Vermont Country Store,” I shout across the room. “They mostly sell candy and nightgowns, but they have three dresses, and I got all three!”

Around the room, lots of pens and papers come out, since everyone here is looking for advice, any advice.

- See more at: http://www.chausa.org/publications/health-progress/article/september-october-2013/excerpts-from-julie’s-journal#sthash.LvIFMQBe.dpuf

The Power of Purpose

Leiderby: Richard Leider, founder of Inventure – The Purpose Company – Richard is one of the foremost executive coaches in the world. Richard Leider holds a Master’s Degree in Counseling and is a Nationally Certified Master Career Counselor, a Senior Fellow at the University of Minnesota’s Center for Spirituality and Healing, a Carlson Executive Fellow at the University of Minnesota School of Management and a guest lecturer in the Harvard Business School and Duke Corporate Education. Richard is quoted regularly in the Wall Street Journal, The New York Times and USA Today, and on PBS public television, NPR public radio, and other media sources.

Click here to hear Richard’s views on the Power of Purpose

Outliving Memory: Husband’s dedication keeps wife with Alzheimer’s grounded

By: Barbara Peters Smith
Published: Herald-Tribune , Sarasota FL, Saturday, June 29, 2013 at 11:00 p.m.

VAGO Bob Vago wakes up each day well before the sun burnishes a small lake between his backyard and Oscar Scherer State Park in Osprey. The peaceful, marshy view, with herons and eagles, bobcats and deer, is what compelled him and his wife, Kay, to claim this spot after exploring the Florida coast from Tampa to Fort Myers.

Now Kay lives across town, with a less-expansive window looking out on a tidy little lawn. When he reaches her room it is usually still dark, and she is half-asleep.

“Is that you, Bob?” she asks, a note of panic detectable in her familiar Scottish burr. “Did you just get up?”

An engineer by training and character, Bob doesn’t like to lie.

“I got up early,” he tells her. “Would you like a cup of tea?”

As he makes the tea, her mind is on the cozy breakfast they will share in bed. When he gives her a jam half-sandwich and she declares it the best she’s ever had, Bob knows he has once again succeeded in keeping Kay’s anxiety at bay for the next 24 hours.

The two have been almost inseparable since meeting at a dance in 1950 on Jersey, in the English Channel Islands. Kay moved with Bob from England to Canada, Chicago and eventually Florida, his full partner in a career that took him from avionics to cryogenics and produced 20 U.S. patents.

So when she turned to him one day in their Osprey home and insisted that he was her grandfather from Glasgow, it was a wrenching moment he had not seen coming.
READ MORE

I was given just 15 months to live.

Heather by: Heather Von St. James – Mesothelioma Survivor

In 2005, at the age of 36, and only three months after giving birth to my beautiful daughter Lily Rose, I was diagnosed with pleural mesothelioma. Upon learning of this life-altering diagnosis, my husband Cameron and I embarked upon a search to find the best mesothelioma treatment care available. Our search eventually led us to Dr. David Sugarbaker, a renowned mesothelioma surgeon at the Boston based Brigham and Women’s hospital. Today, I am a seven-year mesothelioma cancer survivor and have made it my mission to help other mesothelioma victims around the globe. I share my personal story to help spread hope and awareness for others going through this, in hopes that one day no one else will have to. HeatherV

Ideas to Inspire!

ALentertainmentby: Denise B. Scott – nursing home and assisted living administrator; coach & mentor to care organizations

For some reason, many leaders in healthcare like to equate stuff in their lobby to person-centered care: player pianos, coffee for visitors, seating areas with plants.  Leaders that were eager to tell me about how they are “doing” culture change have proudly presented each of these examples to me – Pathetic.

The greatest pianist, coffee or seating does not make up for the fact that most healthcare organizations deprive people of their dignity and individuality.

Extreme? Perhaps. True? Absolutely.

The idea of person-centered care is not new.  It has a long history in various levels of healthcare. Yet somehow the concept of person-centered care still struggles for the respect that clinical outcomes, quality measures and financial results get.

But is what a person wants any less important than what a person needs?

Don Berwick, former CMS Administrator, describes himself as an extremist in his article on patient-centered. It is one of the best articles I have read on the subject.  In it, Berwick addresses common objections that I often see.

One objection is, “What do we do if a person wants something crazy or foolish? In a training seminar that I recently conducted, a staff member asked, “Do people just get anything they want now?”

The answer is “Yes!”

On rare occasions a “No” may be necessary.  BUT we shouldn’t make blanket policies that affect everyone based on one situation.

As Berwick writes, “…rare occasions make for very bad rules for the usual occasions.”  He also addresses the fear that person-centered care will have a draining effect on staff members.

Take Action: Person-centered care goes beyond customer service and aesthetics. It asks, “What do you need and want?” It acts on the answer and then asks, “How could I do better?”

Inspire: Berwick shares some ways to bring patient-centered care alive:

Control – Give control over to patients, residents, and the loved ones they choose. Take over control rarely and only with permission.

Transparency – Share outcomes, processes, and errors freely. Apologize when things go wrong.

Individualization and customization – While the environment is important, the focus of culture change should be on creating systems that are adaptable to individuals.

Training – All staff should be equipped with the skills they need to support residents’ needs and wants.

What do YOU think? Is coffee in the lobby enough or should you say “yes” to everything a resident wants? Is the answer somewhere in the middle or is that a slippery slope back to mediocrity?  Tell me here!  

Extremely thankful for you reading, Denise

The Great Bridge

by:  Martin Bayne – Journalist, Buddhist monk, MIT graduate, and well-known advocate for the aging; cofounder & CEO of New York Long-Term Care Brokers, one of the nation’s largest LTC insurance brokers, Martin developed Parkinsons disease at the height of his career and has spent more than a decade energetically advocating from a wheelchair while personally experiencing life in LTC facilities.  He knows whereof he speaks.

We call the bridge between birth and death “aging.”

In it’s ascendancy, we are “young” even though our 10 trillion youthful cells have already started losing DNA telomere base pairs each time they divide.

If we survive youth, our aging cells become senescent and start to die. We call this “growing old”.

We are the only species that attempts to manipulate this natural cycle. (Ever see a  toothless lion in the wild?)

Because of our aversion to death, we prolong or “stretch out” this aging cycle, but the mind and body have no blueprint for these extra years, and without an instruction set, we simply create more hospice, skilled nursing, and assisted living beds.

What is the answer? In my lifetime, man has discovered DNA and mapped the human genome, rocketed to the moon and back, invented the transistor and created ambitious machines the size of small cities to explore sub-atomic particles. Yet, elder care remains stuck in the nineteenth century:  we still throw the confused, demented and disabled in “facilities” hoping God will sort it out.

Solving the aging dilemma is like nailing Jello to a tree. In truth, despite what the country’s most astute geriatricians, erudite scholars, and faceless Internet experts will tell you, there is very little one can do for an 82 year old woman with Alzheimer’s, a frail, 97-year old man in protracted renal failure, or a 62-year-old journalist with 19 years of Parkinson’s under his belt.

I know.

Learning Compassion for Dementia Patients

by:  John L. Roberts, JD; Member of the Board of Directors, Mass. chapter of the Nat’l Academy of Elder Law Attys.

In July, I took a ten minute Virtual Dementia Tour that opened my mind and heart to the emotions that might be experienced by a person who has diminished capacity.  The tour was provided by the staff at Keystone Woods Assisted Living in Springfield.

Have you have ever taken a guided tour that provides a cassette tape, illustrated book, or a live tour guide who directs your attention and helps you understand a new or unfamiliar place?  The dementia tour is just the opposite. (more…)

The dementia tour used props and devices that made it difficult or impossible for me to walk and do simple tasks.

The tour began as the tour guide placed headphones over my ears.  I did not hear the clear and confident voice of a tour guide. Instead, the headphones played distracting bits of conversations, sirens and noises, to simulate the mental confusion that goes with inability to process and sort out sounds and voices.

To simulate macular degeneration and loss of vision, my eyes were covered with yellow tinted goggles that had a solid black focal point that obscured the center of my field of vision.

The tour guide had me take off my shoes and insert plastic sheets with prickly spokes, to simulate neuropathy and loss of feeling in me feet.

The tour guide put thick plastic gloves with bumpy spikes on both of my hands, taking away my sense of touch, and any dexterity that I may have had.

These artificial impairments set me up for the indignity of dementia, and the very serious emotions that a person with diminished capacity has to deal with every day:

CONSTANT IRRITATION: I felt annoyed that my hearing and vision was being interfered with.  Why couldn’t I see the full field of vision? What little I could see was obscured through a yellow filmy haze. But this was only the beginning.

ANGER: The tour guide gave me quick instructions of what I was supposed to do next: fold up a pair of socks, straighten up my dinner plate, brush my teeth, and several other tasks that I couldn’t hear through the cacophony that was pouring into my head from the earphones.  Why wouldn’t she speak more clearly?  I asked her to repeat the instructions, but she was too busy, and sent me into the assisted living room to begin my day.

FEAR: I can only imagine the panic I would be feeling if this demonstration was the real thing.  Someone who should know and understand my needs has just taken ten seconds telling me what to do, and pushed me away.

FRUSTRATION: I fumbled with the pair of socks, and tried to remember what tasks the tour guide told me to do.  How am I supposed to get through this if no one will help me?  There is a sitter in the room, watching me to make sure that I don’t trip and fall and hurt myself.  I ask her to help me remember what to do next.  Without looking up from whatever she is reading, she just tells me “do the best you can.”

SADNESS: I know I could do some of the tasks, if only someone would prompt me, or give me just a little bit of time or attention.  But no one does.  I am alone in this semi darkness.

After 5 or 10 minutes of futility, the tour is over.  I have a small understanding of the emotions experienced by the person with dementia, and a much greater understanding of the importance of our responses to the need for care. The Virtual Dementia Tour helps people learn the  importance of a positive environment for those with dementia, and is explained  as: “Your Window Into Their World.”

Joanne Koenig Coste wrote about need for this understanding in Learning to Speak Alzheimer’s.       The Alzheimer’s Association has a booklet on activities at home that explains how to approach the person with diminished capacity.        Psychologists and other experts have explained how to avoid the need for antipsychotic drugs that are often prescribed when the frustration, fear and sadness leads to erratic behavior.

Alzheimer’s – a One-way Time Machine

by: Lon Pinkowitz, EVP FuturAge Consultants; Advisor to CCAL

Having been a caring witness to the long goodbye that is Alzheimer’s, that eventually ended the lives of my father and mother-in-law, I know well the ravages it wrought to their minds and bodies.  Watching the devolution of a life is a painful process, but if one pays attention there is an opportunity to discover the essence of a loved one, as the carefully crafted layers of a life history begin to peel away.  It is a time machine of sorts, one that can offer an opportunity to better view the unencumbered core around which their life was built. (more…)

Over the last five years of my father’s ten-year journey, his life as an electrical engineer vanished and soon he and I, no longer remembered as his son, but rather a friend he had come to know,  shared his vivid experiences during WWII.  This emotionally charged part of his life had deeply etched memories.  I got to know him as he recounted the good and bad of those experiences, as well as his relationships with fellow soldiers/friends who were now back among the living.

As time passed, WWII slipped into oblivion, and my father revisited teenage years; years replete with the newly reconstructed reality of his core as an artist.  He shared with me that he, his brother and father had been together just the day before.  He confided in me that this resort hotel (an Alzheimer’s home to those not privileged to share his vision) was a favorite place that they liked to go to relax.  He happily recounted what they had done, giving me insights into feelings he had that I would never had known had we not traveled together, raconteur and avid listener.

Unrelentingly, Alzheimer’s deconstructed his body as well, eventually stealing the ability to communicate, his control over bodily functions and his auto-immune system, all of which required a skilled nursing facility for the last 10 months of his life.

Although the journey was emotionally wrenching, I appreciate having had the opportunity to discover the essence and building blocks of the wonderful person that was my father.

Living with Dementia

by: Richard Taylor, PhD – Author, Alzheimers from the Inside Out, Richard’s experiences and people’s reactions to his eight years living with symptoms of dementia.

In the eyes of many others, sometimes even the eyes of care-partners, I am seen as less than a complete someone. Just because my memory sometimes fails me, just because my cognitive abilities some seem to slip, just because I don’t always think like you do, nor do I remember as much or how you do – (more…)

Please, please know that in my own eyes, and I hope your eyes, I am still a whole and complete someone. I am still me. I am still Grandpa, and Dad, a friend, and whole and a complete human Being. I am in my mind still and have always been a complete person.
I am not becoming any less a person simply because I cannot remember like you, talk as you do, or think as you do. I know many of you want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be.

I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am , today!

From – Alzheimer’s from the Inside Out –
Health Professions Press, 2006
By Richard Taylor, Ph.D.

“I race up and down the corridors of my mind, frantically seeking to make sense of what’s going on around me. Sometimes this process makes me even more lost, and I become lost about why I am lost!

It is amazing to me to ponder the possibility of missing the ultimate unique moment of my life, my death, because I have no words to describe it, or understand it, or appreciate it.

Perhaps too much time is spent trying to answer and question each other, when what I really need is to feel like I am being heard. I know you don’t have all the answers. You also don’t have all the questions!

“Don’t worry if you don’t know all the answers,” says the examiner.
“Which ones is it okay for me to not know?” ask I.

How can I do this “right” in the morning and “wrong” in the afternoon? Why do I recall details no one else remembers and forget major points everyone knows?