A young leukemia patient's journey through palliative care

Clinical Experience

It has always been my objective as a nurse to provide comfort, care, and support for people who are going through chronic illnesses and particularly illnesses with poor prognoses. However, one cancer patient in her early 20s provided the primary inspiration for me becoming a nurse. Her young age and her generally positive outlook on life made it difficult for me to confront issues such as mortality. This patient frequently shared with me her hopes and dreams for the future as if she had not been diagnosed with a terminal illness, and I did my best to support her dreams while providing care.

I worked with this patient while a student in nursing school and had an opportunity to train as a patient care advocate, about five years ago. My supervisor entrusted me with a wide range of responsibilities in addition to shadowing the nurse practitioners. I had the opportunity to learn specific techniques like changing intravenous dressings, while also providing psychological support for the patient, who was sometimes alone in her room.

The patient had been diagnosed a year earlier with a rare form of leukemia, and I was told by the nursing staff that the patient had lost thirty pounds before I started to work with her in the critical care unit. When I first met the patient she was in critical care, but she was moved to many different units including oncology and ultimately, palliative care while I was in the hospital as a patient care advocate. During my care for the patient, her weight stabilized but she often lacked appetite and towards the end of her life, she was being tube fed. At several stages, when the patient was moved to different units, I lost temporary contact with her but had the opportunity to work with her long enough to get to know her and her family and would often see her for several weeks at a time.

Reflection

One of the most difficult aspects of working with this particular patient was the frequency of fluctuations in the mood of her family members and the patient's eventual death. I worked with the patient for seven months. Her condition varied a lot during this time. The patient came from a diverse cultural background. Both her parents spoke Spanish as a first language and both were Jewish. Her father was from Panama and her mother was Cuban. The patient spoke some Spanish with her parents but mostly English and it seemed that she was more comfortable speaking English. Her parents worked hard, but at least one of them would come to the hospital to see her every day. Additionally, the patient had an older sister who lived several hours' drive away. The sister I only met once during my time with the patient, although I was told that the sister visited several other times. Reflecting on my observation of the patient when she was with her family, I would say that regular contact with family members is critical for many patients. Even when there seems to be some emotional intensity or conflicts regarding treatments or care decisions, the presence of family is important overall especially for the terminally ill.

No one incident stands out, but there was an occasion that made me realize that care decisions are often family affairs. When it comes to invasive treatments, a patient often wishes to refuse but the family members want to do everything they can to ensure that their loved one is exhausting every possible treatment. In this case, the patient was amenable to her parent's wishes for taking new and potentially risky treatments and surgeries. Only a few times did they argue about it, and only when the patient had just gone through a long track of chemotherapy that left her feeling physically drained and not interested in undergoing anything that brought her so much discomfort. The entire family, including the patient, did not seem comfortable with the idea of mortality but towards the end of her life, the patient as well as her parents seemed to gain a level of acceptance and simply wanted to see that the patient was comfortable, surrounded by loved ones, and as happy as she could be.

Summary

Looking back on this seminal nursing experience for me, I can see why I have gravitated towards critical care as the best environment for me to work in. I understand how to maintain grace under pressure, especially when there are multiple parties involved in patient treatment. Because I also recognize the different ways families communicate and respect different cultures in this regard, I believe I will fit in well in a critical care environment. I noticed that not all the nurses on staff while I was working at the hospital were able to remove their personal beliefs from their work, and several seemed to be judgmental at least when they were out of earshot of the patient. I believe it is important to remain professional and nonjudgmental because every person has a different idea of what they want out of care.