Lessons on Treating Cancer: A Caregiver's Perspective

Fighting cancer is much like fighting a war. As Sun Tzu states in Art of War, understanding yourself and the enemy will greatly increase the chance for victory. As a fellow in oncology, I have been uniquely primed for the war on cancer. I know the enemy well. However, when a loved one was diagnosed with end-stage cancer, I found I still had much to learn.

Acting as a primary caregiver, and taking a stance from the patient’s angle, taught me more about treating patients with cancer than all of my combined years of medical training.

Despite my medical knowledge and dedication, we ultimately lost our battle, but the war on cancer remains. I hope to take my lessons forward for the benefit of my patients and their families. Having gained perspective from the patient’s point of view, I am now a different doctor.

It is of the utmost importance when fighting cancer that patients have an understanding of their disease and undergo self-reflection while still maintaining a positive mental attitude. We cannot always prevent death, but we may prepare our patients so they are equipped to face it without fear.

Perhaps the most profound lesson learned from my experience was the importance of instilling hope. It is a difficult challenge balancing this essential element with the medical statistics or “realities” of cancer. We must be aware of the truth, but also understand that each case is different.

Fear can be destructive to a patient’s healing process, and can be overwhelming to the patient’s family. In any survival situation, it is vital for a person to have hope. The balance of educating the patient about their opponent, while simultaneously laying the foundation for hope, is a delicate one. Even the masters seem to struggle from time to time. It is now clear to me that this is where the true art of oncology lies.

Every doctor will approach the challenge in a different way, and unfortunately this is an area of discussion that is lacking in medical education. During our medical training, we must take it upon ourselves to master some of the difficult psychosocial challenges as well as the educational ones.

Healthcare is so much bigger than any particular disease. The average person does not interact with healthcare providers enough to consider it a familiar part of life. The simple act of going to see a doctor can be somewhat unnerving and even the best healthcare systems are often frustrating in some way.

We must remember that the patient has more to deal with than just treatment. Many long-term disabilities force patients to also learn a very complex healthcare program, and system inefficiencies add greatly to the stress of patients and their families. It is essential for all healthcare providers, including doctors, nurses, pharmacists, and social workers, to coordinate their efforts in empowering the patient. The healthcare environment must facilitate efficiency and communication.

Many aspects of healing are overwhelming to patients, and one that certainly tops the list is medication. With just about every prescribed medication having a laundry list of side effects, a patient can easily shy away from a medication, or take it improperly, if he or she does not understand how it fits into the larger plan of healing.

As with training a person on anything new, a cycle which includes education, reinforcement, and additional education will serve the patient well and lead to better symptom control, fewer hospital admissions, and better overall outcomes. For example, a high school math teacher is not evaluated on how well he or she knows math, but how well he or she is able to empower students to learn it. In comparison, our ultimate goal is to have the patient leave the facility with a full understanding of treatment techniques and engage in the prescribed method. This is a very large task, evolving emotional coaching as well as education.

There are times when a disease progresses regardless of treatment, or evolves at an unanticipated rate. Patients can easily experience out-of-control type feelings and seek new ways to establish order in their lives. Feelings of helplessness often set in and this can manifest in small acts of defiance. Refusing to eat as suggested, or refusal to take medications, may be the only factor a patient feels he or she can still control. Although the patient may still truly want to do their best to heal, the need to have some control overtakes rational thought. Frustration from the family or medical staff is futile. We must avoid trying to make the patient do what is prescribed, and instead enable them to be a part of the decisionmaking process. There is an art to the gentle empowerment of a patient, and a practitioner who masters this art serves his or her patient well.

Caregivers and practitioners often have their own idea of how the patient’s story will unfold. It should be recognized that the patient is the ultimate director of this. Each patient will have his or her own unique course, and this is particularly apparent when an end-of-life situation is nearing. The process of dying is as individual as we are from one another. Communication and recognition of non-verbal cues are essential during this time. It is important to identify agendas that may be caregiver driven and not reflective of a patient’s goals. End-of-life care requires guidance and skill in listening to the patient fully and allowing them to largely guide the transition.

In conclusion, a vast knowledge of both your opponent and oneself is essential in the battle of cancer. As medical oncologists, we must be intelligent and stealthy in our attack while arming our patients with education and empowerment to heal. However, we must not lose sight of the fundamental element of survival, hope. We will be called upon to fight utilizing tools of our minds, but most importantly, our hearts. Inspiring the patient to live courageously or die gracefully is an undeniable aspect of our field. As future oncologists, we will be faced with many challenges in patient care, and tailoring our art will undoubtedly require a lifetime. To be victorious, we must work to know our enemy, as well as ourselves.