#facingtheissues:8.1

photo credit: BricksInMotion

What actions help you to feel commitment and compassion from your caregivers?

The definition of care is “the provision of what is necessary for the health, welfare, maintenance and protection of someone or something.” For cancer patients, care is a big part of their lives, as are doctors and nurses. But, care does not only come in the form of physical medicine and treatment. It involves the everyday relationships, interactions and communication between those who provide care and those who receive it. Treatment works to diminish cancer, but commitment and compassion alleviate suffering as well.

Doctors and nurses come and go, trying to do their jobs as best they know how. Their responsibility is to treat cancer and make patients well again. It is more than a responsibility to medicine that drives some of these men and women to take care a step further.  According to the article, “The ‘Little Extra’ that Alleviates Suffering,” Maria Arman and Arne Rehnsfeldt found clinical evidence of this phenomenon. Nurses and caregivers who demonstrated ethical acts of compassion and commitment—“the little extra”—touched the lives of many. Nurses and former cancer patients were interviewed and involved in dialogues for the study to express their experiences with cancer care. The nurses discussed their interpretations of good care:

Nurses and researchers analyzed self-experienced cases that exemplified ideal caring. One common denominator was the importance of individualizing caring acts. Some examples involved the health care team making great efforts to meet patients’ wishes. In one case, a patient received permission and support to break off medical treatment in order to return home to die. A less dramatic example involved a woman patient connected to a respirator (and also anaesthetized) who was dressed in a violet dress because her relatives had mentioned to the nurses that she liked to wear violet. The dialogue then proceeded with reflections on what the little extra entails. The violet dress was symbolic of this. Doing the little extra means going beyond routines, daring to and feeling it is within one’s remit to do more. Intention is based on seeing the whole human being in the patient, seeing the healthy person within, and respecting his or her needs and wishes. The key concepts are: (1) seeing the whole human being; and (2) the little extra.

Sometimes it is hard for patients to understand all of the medical talk that seems to go in one ear and out the other. It is important for doctors and nurses to talk WITH patients and not AT them. Yes, they have cancer, but they are still people. To be treated like a person—not just a patient or subject to be pricked and prodded—can make a world of a difference in the lives of those with cancer. Simple acts, such as taking the time to show interest and listen to what patients have to say, are enough to comfort and alleviate suffering that medicine cannot. The article discusses the impact a physician made by taking the time to show commitment and interest:

Anne told us about a physician who came to see her and comfort her when she had a breakdown in the outpatient unit. ‘They came up and sat there, I don’t know how long . . . but he came, he and his patients, and kind of gave time to comfort me.’ Anne put emphasis on the time the physician spent with her and how she felt as if she were seen. At the same time, she was painfully conscious of the physician’s tight schedule, saying: ‘He had absolutely tons of other stuff to do.’ When asked what this situation meant to her, she burst into tears and described it as a kind of comfort. Comfort lies in the fact that the physician was showing compassion or commitment towards her: ‘Especially that your own doctor who you go to see, he shows he’s got feelings, you’re a person [cries] . . . exactly that.’ Later, Anne made it clear that in that moment, she ‘became a person’.

This is why our Patient Navigation Program ensures that no young adult faces cancer alone.  Patient Navigators help young adults manage their cancer experiences by providing increased knowledge of their disease, treatment options and lifelong implications of treatment choices; and effective communication with their clinical care team, family, friends, community, and others in their support network. In addition to providing cancer guidance, they go above and beyond to bring joy to patients. In-house activities, as well as outings, are planned regularly to keep the young adults active and entertained. Our patient navigators know how overwhelming the cancer experience can be, so they do everything in their power to make the best of it.

Much is lost with cancer, but feelings of worth and importance should not fall victim to this terrible disease. Some caregivers feel that they have a moral responsibility to give a little more and make care about more than just the medicine. The “little extra” can go a long way in changing the lives of those with cancer—all we have to do is CARE.

Read the full article here… Arman M., Rehnsfeldt A. The ‘little extra’ that alleviates suffering. Nursing Ethics. 2007;14(3):372–386.