RESOURCE CENTER: MEDICAL HOME: COMPASSIONATE CARE

"Compassionate care" is one of the defining elements of the Medical Home. It can be hard to define, but we know it when we experience it.

By collecting anecdotal examples of compassionate care, the Consortium hopes to spark discussion among families, providers, educators, and proponents of Medical Home -- and to encourage the growth of compassion in all healthcare settings.

Dr. D. surprises me with �no reason� calls, just to check on my son's progress. We correspond via e-mail � about tests my son needs, a recent article � and he adds at the end of an e-mail, �I'd enjoy a chat by phone, if you have time.�

We walked into our daughter's hospital room and found the Chief Resident sitting beside her crib, reading her Harold and the Purple Crayon, one of her favorite books. No other doctor had given this attention to her as a person, a child, and a human being who had just been diagnosed with Stage 4 neuroblastoma.

An X-Ray technician gave us a special moment of grace when our son needed a chest X-Ray in the middle of the night. He was sleeping when we were called in, so I was cradling him in my arms. The woman taking the X-Ray managed to position him, take the X-Ray, and gently hand him back to me without ever waking him.

I took my daughter to the pediatrician I had when I was a child because he was very experienced. But he was also much older and pretty cranky! But when he was with my daughter his whole demeanor, voice and body language changed, especially when she was very sick. They had their own special zone with each other.

Prior to our son's surgery, our doctor arranged for with everyone who would be working with him to meet with us, in person or by telephone, prior to this important day. We knew our concerns were heard and understood.

Dr. M.'s assistant is a magician when it comes to scheduling multiple appointments and procedures for our family. She once scheduled a set of multi-disciplinary procedures in the OR with three different physicians. We were in the hospital for only 1½ hours that day, total!

During a checkup the year my daughter was in sixth grade, her neurologist asked her how school was going. She said �OK.� Knowing that she is usually pretty enthusiastic about school, he said �Just OK?�

She was able to tell him how frustrating it was to have an aide shadow her all day. My daughter has Spinal Muscular Atrophy (SMA) and walks short distances but falls easily. One of the teachers had told the aide to shadow her. The teacher was married to a lawyer and was overly concerned about being sued if my daughter fell while in her class.

The neurologist wrote a letter to the teacher about my daughter's need for independence and normalcy in her day, especially as she goes through adolescence. I had spoken to the teacher about it, but coming from the physician, it really made a difference.

Dr. B. listened with earnest to our concerns about care prior to coming to the hospital, and he followed up with a note summarizing our conversation.

One day my son told his ENT doctor that he could look in his mouth, �but no stick.� The tongue depressor makes him gag. The ENT laughed, said okay, and even today, will not use �the stick� with my son.

I have a document I prepared to help new providers quickly get acquainted with my son's complex medical history. Dr. D.'s empathy and respect for this approach was heartfelt. She offered good advice on how to tailor the document to best serve the needs of clinicians, especially in an emergency room setting.

My son had suffered many bad and painful experiences with IV starts and blood draws. A new nurse came into the ER, and just before she started the line I looked her straight in the eye and asked, �Are you good?� She looked right back at me and said, �I'm good.� Actually, she's great. Since then she has started many IV's for my son � and always with one stick.

On a non-clinic day, a geneticist-cardiologist spent 4 hours with our whole family. What struck us as remarkable was that he had read every one of my son's medical records. It was wonderful to tell our story to him with him interjecting, �I saw that he had this surgery....�

Our gastroenterolgist is extremely considerate of the challenges we face medicating our son, who does not have a g-tube, and must feel well enough to cooperate with meds up to six times a day. He is creative in working with us to avoid hospital admissions because of missed or refused doses.

We had been home three days, after traveling out of state to meet with the specialist who diagnosed our son's rare medical condition. The doctor called and told me he had done nothing for those three days but think about my son and research his disorder. He had discovered some case studies of possible treatments, and would call our pediatrician and neurologist to discuss this with them. He has continued to collaborate with our son's cardiologist, pulmonologist, neurologist, and orthopedist over the last two years. Nothing could have prepared us for the outstanding collaborative relationship we have developed.

As the �healthy sibling,� my daughter has faced a tremendous amount of stress. At age 3, she witnessed a life-threatening event for her younger brother. Several nurses have shown compassionate care for her by answering her questions, finding her a coping clinic, and showing interest in her well-being.

Last summer, many of my son's physicians were on vacation, and he was presenting with potentially serious complications. A care coordinator was our lifeline. She advocated for us, and sustained us until diagnostic procedures could be scheduled. She said to me on the phone, �You are not alone,� and it was heartfelt and sincere.

I received an unexpected phone call from a nurse at my son's pediatric practice. She wanted to see how he was doing, whether his asthma meds were being administered, if it was going all right and did we need any support. It was a great follow-up to his care.

We were at the hospital for my 3-year-old daughter's first radiation treatment. It began disastrously, as my daughter was frightened and the hospital didn't want to include us in the procedure. Then Dr. M. entered. He started playing a game with my daughter, making clowns out of tongue depressors and bandages. He made one for her and one for her brother. It changed her fear to trust, and treatment could then proceed � for her and for us.

We first met Sister C. the day of our son's first major surgery. She appeared at his bedside before 6:00 a.m. to pray with us before he was brought to pre-op. Since that day, she has found us either in person or by note every time we have been back in the hosptial. I've never had to ask for her. I recall sitting in the medical surgical ICU one day, exhausted from the previous day's events. I looked up, and there she was.

Our daughter's geneticist had some test results to share with us. He told us she had Prader Willi Syndrome. In answer to our questions, he told us that because of this rare, complex syndrome, she would never go to college, have children of her own or live independently. All my dreams for my only child were destroyed in this 20-minute office visit.

While I vividly remember the devastation I felt, that's not all I remember. I remember this famous physician coming out from behind his desk and sitting next to us. I remember him telling us not only what was going to go wrong with our dreams for our daughter, but also what we could expect to go right � that someday she would walk, talk, relate to us, and achieve things we didn't think possible.

�The one guarantee I can make," he said, "is that she's going to surprise you.�

What I remember most is that at one point he laid his hand on my arm to comfort me. And it did, that human gesture confirmed for me that he was not only brilliant, but wise. I know, because we've talked about it since, that he considered giving me that comfort as important a part of taking care of my daughter as giving a correct diagnosis.

When my son needed surgery for severe respiratory problems, I consented; my husband could not. Our son's physician showed more tenacity and compassion for our son, our family dynamics and our marriage than I ever expected.

He said it was very important to my son's health that my husband and I �get on the same page� regarding treatment. He arranged for the three of us to come to his office on a non-clinic day (ensuring ample time for discussion) and had a heart-to-heart discussion.

He told us he didn't want our son to have a tracheostomy, but that he really felt that he needed it. He wanted our son to retain his cognitive function, and he could not predict how much longer our son could function without adequate oxygen intake. Because of his giving his time, being honest, voicing his concerns for our situation and for our son, and showing his willingness to listen to our views, my husband was able to communicate his fears about the surgery in a way he had never done before.

Because of this, we were able to make a plan for our son's treatment, which included a trial of a non-invasive respiratory intervention. We all agreed that this would be the last trial prior to surgery. We were finally all on the same page.

Do you have an example of compassionate care to add? Please send it to us at info@neserve.org. We reserve the right to edit all submissions.