Engage With Grace

(Originally published on Bedside Manner at Everyday Health)
This is a blog movement/piece that a lot of Health Care Bloggers are posting on their blogs. It’s a guest post written by Alexandra Drane and the Engage with Grace team.

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don’t express our intent or tell our loved ones about it. This has real consequences: 73 percent of Americans would prefer to die at home, but up to 50 percent die in hospital. More than 80 percent of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50 percent say they’ve talked to them about their preferences. But our end of life experiences are about a lot more than statistics. They’re about all of us.

So the first thing we need to do is start talking. Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide wherever and whenever they can … at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let’s start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let’s start a viral movement driven by the change we as individuals can effect…and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.

To learn more please go to www.engagewithgrace.org.

Honoring A Compassionate Nurse Who Makes Chickens Out Of Latex Gloves

(Originally published on Bedside Manner at Everyday Health)
On Thursday evening, in front of about 1,700 people at the Boston Convention and Exhibition Center, Cynthia French, a nurse practitioner from UMASS Memorial Medical Center in Worcester, MA, received the Schwartz Center Compassionate Caregiver Award. Cynthia has spent much of her career taking care of patients with lung disease.

It was a wonderful evening, which also honored the past nine winners of the award with a moving video (read: lots of attendees wiping tears from their eyes) highlighting the work of a few of them. Once we get it up on the Schwartz Center website in a few weeks, I’ll give you a link to it.

In her speech after receiving the honor, Cynthia, who goes by the nickname Cindy, talked about the moment when she realized what kind of a nurse she wanted to be.

I remember one of my first emphysema patients, a quiet gentleman who often came to our ICU because he could not catch his breath, even though he was only in his 40s. On my way home one day, I happened to see him struggling on the sidewalk outside a local convenience store - his oxygen tank and two young children in tow. I remember thinking he is someone’s dad. It was at that moment that I, a 19-year-old R.N., discovered that my job as a nurse was far more important than I had realized. I was not taking care of someone with an illness, I was taking care of someone’s dad! How could I not get involved?

Cindy also shared a mnemonic device - VALUE - that always reminds her of the foundations of good caregiver-patient communication.

V. value patient and family statements. A. acknowledge patient and family emotions. L. listen to the patient and family. U. understand the patient as a person. E. elicit patient and family questions. At the end of her remarks, she shared her experience with a patient she called “Emma.”

She was a beautiful young woman, who was developmentally disabled. At 30, she functioned at the cognitive level of a 6-year-old. She was stricken with a very serious lung disease that left her short of breath and oxygen-dependent. Despite Emma’s small stature and angelic appearance, her mom advised me that we needed to be cautious, as she was known to tear up exam rooms when anyone in a white coat approached.

So I took an exam glove, blew it up like a balloon, drew in eyes and mouth and, in a minute’s time, I was holding a chicken, complete with a comb on top of its head. The chicken and I went into the room to welcome our new friend Emma. Together we shared her delight and her fear quickly dissipated. I remained by her side during her entire visit and our exam room remained intact. She visited our clinic many times thereafter, and I always made sure to have a small gift and a big hug ready for her. Even my husband Herb caught the spirit. He would remind me to bring something back for Emma whenever we traveled.

We were with her until the end. Her mom gave me a picture of the two of us together and told me how much Emma looked forward to her appointments. That photo still hangs in my office, a daily reminder of the strength of patient focused, compassionate care.

It was such a pleasure to get to know Cindy, and to become indirectly acquainted with the many patients whose lives she has touched.

Two Doctors Who Deliver Top-Notch Care With Tenderness

(Originally published on Bedside Manner at Everyday Health)
I’d like to introduce you to the last two finalists for the Schwartz Center’s compassionate caregiver award - Marcela del Carmen, M.D., and Avra Goldman, M.D., both superb physicians and extraordinary human beings. You’ve met the other three finalists for this year’s award in previous posts. The winner of the Schwartz Center compassionate caregiver award will be announced Wed., Nov. 12 at our annual dinner at the Boston Convention and Exhibition Center. We’re expecting about 1,500 people and it promises to be a very moving evening. This is the 10th anniversary of the award, so we’ll be honoring the past nine winners as well.

Marcela del Carmen, of Massachusetts General Hospital, is an accomplished gynecologic oncology surgeon with an outstanding reputation and stellar credentials, coupled with a gentle and generous spirit - a powerful combination. She will hold the hand of the fearful and cry with a woman when the news is bad. She opens her heart to patients and promises they will never be alone on their journey.

“Dr. Del Carmen does not impose herself, entering your life like an expert who will tell you what is going to be done,” said one patient. “She is your partner, your ally in this battle for your life…She is compassionate, but never pitying. She not only listens, she actually hears.” Marcela connects deeply not only with her patients but also with their families and friends, understanding how important these support systems are to their well-being.

Marcela is driven by a deep belief that healthcare is a basic human right. A native of Nicaragua, she holds a weekly clinic for Latina women and has made many trips to Nicaragua, providing state-of-the-art surgical care for the underserved. Her research currently focuses on Latinas’ barriers to health care access. When Spanish-speaking patients first meet her, “the look of relief in their eyes when they realize their surgeon is able to talk to them in their own language is priceless,” commented a colleague.

Marcela is known as a skilled and engaging educator, enlivening her presentations with personal experiences. “I can only wonder how many thousands of patients will benefit from the meaningful observation experiences Marcela provides to so many novice clinicians,” said a colleague.

And here’s a profile of Avra Goldman, M.D., of Boston Medical Center.

It may be the statue of liberty who summons the “tired, the poor, the huddled masses yearning to breathe free,” but it’s Avra Goldman, M.D., who tenderly cares for them. Her patients are the city’s neediest. They hail from all over the world and are often quite sick, with multiple chronic illnesses. Some are political refugees who have fled abuse and torture in their native countries. As the medical director of Boston Medical Center’s Family Medicine Clinic, Avra is their lifeline. Visit her clinic and you may see her in an examining room with a Somali or Kurdish patient, and several generations of their family members, gently explaining something through an interpreter. She creates a place of warmth and trust, where “tears can flow and stories of childhood trauma or wartime torture can be shared,” says a colleague. Avra regularly testifies on behalf of her patients at asylum hearings.

Avra not only has a busy clinical practice but also does volunteer medical work in the southern Africa country of Lesotho; mentors medical students and residents; and runs her department’s home visit program, regularly making house calls herself, delivering superb medical care and ensuring that her patients have adequate food and are safe in their homes.

Avra visits nearly all newly admitted patients. She’ll make room in her overbooked schedule for those who trust only her. And she connects deeply with her patients. “Dr. Goldman always knows what is going on medically with me, but more importantly, she understands what is going on spiritually and emotionally on my journey,” said one patient with AIDS.

A serious head injury at age 20 left Avra frightened of and intimidated by doctors but determined to become a different kind of practitioner. “I wanted to make sure that my patients’ voices were heard, their fears allayed and their needs met,” she said.

Stay tuned for the winner.

A Rabbi Attends To The Needs Of Patient's Hearts And Souls

(Originally published on Bedside Manner at Everyday Health)
One of the finalists for the Schwartz Center’s compassionate caregiver award is an extraordinary chaplain at Boston-based Hebrew SeniorLife, an integrated system of housing, healthcare, research and teaching programs.

Rabbi Sara Paasche-Orlow creates and oversees religious programming at seven Hebrew SeniorLife sites; conducts regular Torah study sessions and “conversations with the Rabbi”; and somehow finds the time to attend to the spiritual and religious needs of individual patients, families and staff.

“Transformational” is the word used over and over by admirers to describe what Rabbi Sarah has done in four short years. She created a clinical pastoral care program to increase the number of spiritual caregivers; developed a Palliative Care Service to improve end of life spiritual care; devised ways to embrace the Russian residents with tenuous connections to their Jewish roots; and always works hard to create an atmosphere of inclusion: Passover’s ritual meal - the Seder - now includes gospel songs of freedom, so staff feel included.

Families tell of their agitated loved ones dying peacefully after a visit from Rabbi Sara and of her gift of connecting with the most difficult or confused patients. One chaplain intern said the following about her weekly Torah study sessions: “Despite the medical challenges of her students - hearing loss, speech impediments and dementia - Rabbi Sara leads the study into topics that are intellectually and emotionally challenging…struggling with the residents around difficult topics rather than coddling them because of their infirmities or age.”

One daughter of a resident wondered if Rabbi Sara might be a Lamed Vavnik - one of the 36 people in the world who are living saints, according to Jewish mysticism.

In my final post, I’ll tell you about the two physician finalists. Selecting a winner will not be easy.

A Nurse Delivers Food, Medication, And Compassion To Patients' Homes

(Originally published on Bedside Manner at Everyday Health)
In my last post about nurses and their public image, I wrote about one of the nurse-finalists for the Compassionate Caregiver award given by the Boston-based Kenneth B. Schwartz Center.

This year, the Schwartz Center received 112 caregiver nominations from throughout Massachusetts. The award - now in its 10th year - is a wonderful way to honor some of the state’s most extraordinary caregivers. Here’s a profile of Mariapat Toye, RN, MS, the other nurse-finalist.

As the program manager of Baystate Medical Center’s pediatric/perinatal/adolescent HIV/AIDS program, Maripat Toye is a problem solver, a surrogate mother, a clinician, a social director and so much more. Her patients’ lives are complex and poignant: the toddler who is terrified of the needles that draw his blood regularly; the pregnant teenager who refuses to take her medication because she fears her family will discover her illness. Maripat drew silly characters on the boys’ band aids and met that mother-to-be most mornings at her methadone clinic to dispense her HIV medication.

“Maripat uses her role as a nurse and program manager to make a population of patients, often feared or forgotten, to feel as though they are as important as any VIP,” said a colleague. A fierce advocate for her patients, Maripat knows many of the tougher neighborhoods of Springfield and Holyoke, MA, delivering food, medications or simply a helping hand to patients and families. Mothers who are overwhelmed or cannot deal with the financial burden of planning funerals for their children turn to Maripat. And her reach goes far beyond western Massachusetts: her expertise has taken her to Africa, India and Vietnam, where she has led HIV/AIDS trainings.

On their birthdays, the youngest patients receive birthday cards in the mail and their special day is celebrated during clinic visits with crowns, glitter, cakes, and gifts. For patients who have lost their parents, Maripat keeps files with their pictures and accomplishments, so they know someone is keeping track, lovingly.

The concept of a medical home - a practice that coordinates all of a patient’s medical needs - takes on a whole new meaning when it comes to Maripat’s clinic. “Patients know they have a special medical home with Maripat,” said a colleague, “often more stable than any home they’ve ever had.”

Stay tuned for posts about the final three finalists - a chaplain and two physicians.