The emotional connection in the patient-caregiver relationship

The dictionary defines relationship as the way two or more people or organizations talk to, behave toward, or deal with each other. In reality, defining the patient-provider relationship is much more complicated and elusive. In every practice, there are patients who stand out, either as all-time favorites or the veritable thorns in the side. No matter how neutral we try to be and not play favorites, there are always a few who touch us in special ways.

Respect, trust, and mutuality

Oncology and nephrology practitioners have the most frequent patient contact of all the medical branches, so it is no wonder our relationships are so deep. Tarlier analyzed this patient-provider relationship. She defines the responsive relationship as being grounded in respect, trust and mutuality.1 Kaba and Sooriakumaran examined the doctor-patient relationship and how it has evolved since Ancient Egypt (4000-1000 BC). They note how it has vacillated between doctor dominant to what they term patient-centeredness. This approach sees the patient as a whole, not a disease state, recognizes the individual and that person's unique responses to a situation high lighting shared power and responsibility. It is perhaps a coincidence that the introduction of this approach, first promoted in 1956, occurred at about the same time that nurse practitioners and physician assistants came onto the health care scene in 1965.2

Definitions

So how to define and explain the relationship? For some advanced practitioners (APs), the relationship is analogous to love at first sight. The first time they meet the patient, they feel a bond that is mutual.

With other patients, the relationship has a rocky start. Often there is mutual dislike that changes as the patient and provider become better acquainted. There are patients who are angry or in denial.

Care providers can become frustrated at what at first seems like obstinate, noncompliant behavior. Then either a precipitating event or just the tincture of time breaks down the barriers and the bonds form.

And in other cases, the relationship begins as a routine visit and develops into one of closeness.

Bonds and kidney disease

However the origin, bonds are formed. Over time, the strands of that bond become more intertwined as the AP follows the patients and their families during the course of chronic kidney disease. Sometimes this means monitoring to slow progression; other times it is educating and preparing for renal replacement therapy and subsequently caring for the dialysis patient. In rare incidents, it is seeing the patient receive a kidney transplant and a new lease on life. In others, it may be attending a funeral. But in between are graduations, marriages, children and other special occasions.

This is not to imply that other patients, the vast majority of a practice, are given short shrift. It is just that some patients touch our hearts.

Why we care: Our experiences

A lady and her dog

I love my job. I love taking care of patients that are on the edge of the system. But to love and care for people means experiencing great pain and heartbreak. Ms. M.L. was a triplet-the last of three girls with rhyming names. Her two sisters had died from CKD and she was so fearful of the same fate.

She started dialysis four years ago due to acute tubulointerstitial nephritis but miraculously regained kidney function. Over the past year, however, she has not looked like her normal self. She appeared disheveled and was very forgetful. She was hospitalized almost monthly with volume overload after forgetting her diuretics for her advanced CKD and congestive heart failure.

I decided that I needed to see her weekly. She had no family. She never married, never had kids. She had her dog, Geo. She and I would talk for most of our visits about Geo. Over this past month, she missed every visit. I would call her and she would begin to cry, saying, "Denise, I just forgot. What's wrong with me?" I began to call her the night before these visits. She continued to forget. Two weeks ago, I called her again and I said, "Ms. M.L, do you know why I am calling you? Because I love you and I am so concerned about you. Please come into the hospital and let me take care of you."

She began to cry again. I have never told a patient that I loved them. But I meant it. I saw this sweet lady with no family and it gave me chills to think she was alone without anyone except Geo. She was worried about Geo. Who would take care of him?

She died this week from a massive pulmonary embolism. I found out yesterday. I sat at my desk in my office and cried. I cried on my way home. And I cried to my children, my husband and God last night. I cried because she was alone and I could not save her. But today, my administrator told me, "She is now with her two sisters; no more pain, no more fears, no more tears." I believe she is correct. My tears are now joyful tears. She is in a better place.

My heart is still broken. But I would prefer this broken heart to a cold one that is unable to feel when precious humans leave this earth.

This job is a gift; to take care of people when they are at their weakest, in pain, in fear and God knows what else. But I can enter into their world filled with pain and heartache and give these patients and myself the gift of compassion and empathy. Feels damn good.

-Denise

Let me be normal

Some patients accept the strict hemodialysis dietary restrictions and some fight against them with their last breath. She was one of the fighters. All she wanted was ice. We were in Tennessee and it was darn hot in the sum mer. She and the dialysis staff had a running argument about ice. The compromise was a promise for all the ice she wanted when she died.

It was one of the most fun funerals I have ever attended.

Everyone had a cup of ice to throw on the gravesite and many laughs were shared to balance out the tears. We still tell the story at the dialysis unit.

-Lynn

Making a difference

I have just returned from an eight-day medical trip to the Dominican Republic near the Haiti border. We typically see folks who simply don't have any access to medical care. If anyone needs emergency care, they must travel 6-8+ hours via horrible road conditions to Santo Domingo, the capital, for substandard health care. We volunteers travel to remote locations twice a year, providing primary medical care and supplying medications for six months at a time until we return.

I saw a 22-year-old gentleman who was diagnosed with diabetes (blood sugar was 400) obesity, and hypertension (180/100) at my last visit six months prior. His father had recently died from diabetes and obesity. The patient was given a diabetic-based diet and told to exercise and lose weight. He was truly in fear for his life and was afraid he would die like his father. He was asked to follow up in June when we returned.

I saw him last week; his blood sugar was down to 150 and his BP was down to 140/80. He had lost 24 pounds so far by diet and exercise and with no medications.

We cheered him and gave him tons of emotional support-he was beaming. So excited and motivated. It was so very nice to see something positive. He still has more weight to lose, but he is motivated. I am pretty sure that when we see him at our next visit, he will be in even better shape. Fingers crossed...

-Kelly Ann (Waves of Health Mission)

The wave of emotions

He was teenager on hemodialysis at Children's Hospital in Washington, DC. Yet at 6' 3" he did not fit in with the other patients and, as we all know, teenagers hate to stand out. He was finishing high school at a local alternative high school not because he was a problem but because he was in and out of the hospital with malignant hypertension. He graduated high school in August and the entire dialysis unit threw him a party. The staff and patients said it was nice to celebrate something good for a change. He moved that summer to Mississippi to live with his mom and go to college. She called us around Thanksgiving to tell us he received a transplant. We all started yelling and cheering, but that was not the complete story: She told us something had gone terribly wrong and he had coded and died in the recovery room. He was 18 years old.

-Kim

Teaching a lesson about life

This is a bad day. A patient I have known and loved for over 28 years has died. This one really blew me away; I had just seen her Friday. I was worried about her and knew she wasn't doing well. But go home and die? I didn't expect it. She was a French teacher for years, taking school classes to France and doing peritoneal dialysis across Europe.

Someone once asked her why she taught French. She explained that when she was very young, she heard a black person speaking French and she was so impressed that a black person could speak French, she decided she wanted to speak French too. I miss her.

-Jane

Visits strengthen bonds

In 2004, the Centers for Medicare and Medicaid Services changed its regulations for its monthly capitated payment for nephrologists and increased practitioner reimburse ment for face-to-face dialysis visits. In our view, this has served to increase and strengthen the bonds between many APs and their hemodialysis patients. In many practices, the AP sees the patient three times a month and the physician sees them monthly.

One big advantage to seeing patients during dialysis treatments (as opposed to office visits) is fewer time constraints and opportunities to catch up with family and caregivers. This frequency of contact between patient and AP offers the opportunity to give patients individual attention. This can lead to better compliance and barriers are often identified in informal discussions with staff, families and patients. When successful, a partnership is formed and hopefully outcomes improve.

So what makes a patient special? The same indefinable qualities that attract people to each other or build friendships. These relationships are built on respect, communication, and trust and enrich all our lives-patient and provider both.

References

Tarlier OS. Beyond caring: the moral and ethical bases of responsive nurse-patient relationships. Nursing Philosophy. 2004; 5:230-241

Kaba R, Sooriakumaran P. The evolution of the doctor-patient relationship. International Journal of Surgery. 2007; 5:57-65