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In the 10 years that I’ve been practicing oncology, one thing I’ve come to learn is that chemotherapy can be either a friend or a foe. Chemotherapy certainly has its place. It has its time when it gives a patient both quantity and quality of life. As clinicians, however, we are all too aware that there also may come a time when chemotherapy robs life of both quality and quantity and leaves the patient battling debilitating side effects instead.
I remember a recent encounter with a patient who was undergoing treatment for metastatic breast cancer. As I sat across from her, watching as she struggled to hold back the tears that streamed down her face anyway, she apologized for feeling so “horrible and weak.” I had always known this patient as a fighter who fiercely embraced every treatment, but now she was really struggling. Even in those times when I had to deliver the most horrible news, she was always ready for the next round. I had never seen her like this before. On this particular day, she had the weight of the world on her shoulders. She just wanted to say No to everything.
She looked at me and she asked, “When is enough, enough?” I looked at her, took her hand, and said, “The decision about whether to continue chemotherapy is not based on dictatorship. It’s a democratic relationship in which you have the right to decide that you do not want any more treatment, even if that decision is just for now.”
I think for the first time in a very long time, she felt she could breathe a sigh of relief. She knew now that I didn’t judge her because she wanted to stop treatment. Her soul was tired, and her body was exhausted from the onslaught of different chemotherapy regimens. And now she had developed a painful palmar-plantar erythrodysesthesia, which made even brushing her own hair difficult. For this woman, hope was lost. Her quality of life was so compromised that even the little things she cherished for her ability to do them herself were becoming a challenge. Only another cancer patient can possibly understand the personal and intimate darkness of uncertain outcomes in battling cancer. Only another cancer patient can possibly understand the liberty and power she experienced in being able to say “no more treatment.”
As clinicians, we never want to give up our battle against cancer. We take an oath to preserve life, and when our ability to do this is challenged by the medical facts, all we can do is step back and examine the true meaning of preserve life in the absence of physical medicine. In this very instant with this patient, I was reminded that preservation of life should not be at the cost of life’s quality. Respecting a patient’s wishes in spite of what we think we can achieve with new medical interventions and novel chemotherapy agents means we should not try to override a patient’s desire to stop treatment. It is so important for us to offer patients a place where they can say how they truly feel. Patients must feel that they have their own voice, that they can decide what they need—for themselves and not for everyone else.
Patients who choose to stop treatment often do so because life as they once knew it has become overwhelm0ed by the intrusiveness of cancer. Cancer does not ask for permission, nor does it negotiate. I am humbled by the strength of cancer patients. They endure multiple office visits, diagnostic tests, and treatments, never losing focus or hope on the journey to survivorship. Don’t they also have the right to feel that when their quality of life has been lost, choosing to stop treatment is an acceptable decision? When cure is not realistic and medicine can offer no other options that will preserve quality of life and give it quantity, we owe it to our patients to provide care that will nurture a life of meaning and purpose not compounded by painful and debilitating side effects.
Embracing a patient’s decision to stop treatment does not mean we have failed. It means we understand the impact that powerful chemotherapy drugs can have on a person’s life. It means we understand that both quantity and quality of life are important to patients, and we see that both should be minimally compromised. When we embrace our patients’ decision to stop treatment, we embrace their humanity. We validate their acceptance of what the remainder of their life means to them on their cancer journey. Embracing a patient’s decision to stop treatment means saying Yes to supportive and compassionate care. ONA
Jia Conway is an oncology nurse practitioner at Cancer Care Associates in York, Pennsylvania.
