Oncology nurse navigators strive to educate patients so that they can participate with confidence in decision-making about their treatment. Doing this with patients who have advanced disease, however, is much more complicated. It’s important to focus closely on the patient’s goals of treatment and care, because merely moving on to the next treatment is not always the wisest decision. Add to that a family that desperately wants to see their loved one alive—even if only existing and not truly living—and you have a very complex situation.
Patients’ treatment and care goals will likely evolve over time. Initially, the hope is that the patient will experience a miracle. But one cannot stay in that frame of mind for very long. The next goal should be to have longevity with good quality of life, living in harmony with the disease and treating it as a chronic illness. Then, as more lines of therapy march on, with drugs working minimally and side effects increasing, a thoughtful discussion must take place about revisiting expectations of treatment and the patient’s goals of care. This can be a difficult discussion, and the nurse navigator may be the only one actually having it.
Oncologists are taught to treat the disease, so they are always looking for the next treatment to offer and feel relieved when another treatment can be started. Patients may sign on for another treatment in an effort to avoid hurting their doctor’s feelings, because after all, he/she is trying to save their lives. But in such cases, patients don’t really have a life, do they? If they are riddled with side effects that are preventing them from enjoying their remaining time on this earth, then we are going in the wrong direction.
Here is an opportunity to request that the patient’s case be presented to the hospital’s tumor board for a team discussion (hopefully your palliative care team attends these weekly meetings). As the discussion unfolds about the next treatment to offer, the oncology navigator can serve as the patient’s advocate and discuss his/her current goals of care. If the patient has expressed the desire to stop treatment and instead engage in hospice, the nurse or patient navigator should say so. If the patient is undecided, the navigator should say that too, and promote palliative care involvement as soon as possible. It is also very appropriate to discuss having the patient and their family meet the hospice team that would be taking care of the patient at his or her home or in a facility. This way, the stigma of hospice, which conjures an image of the Grim Reaper, can be dispelled.
Most importantly, the decision to continue or discontinue treatment must be made by the patient and no one else. It is their life.
Discontinuing treatment should not be viewed as giving up. When presented in a way that the patient can look at the risks of treatment versus the benefits of that next treatment, it can be a “no brainer” to choose to preserve the quality of life for the remainder of his or her life. Research studies have shown that patients who engage in hospice sooner live longer and have better quality of life. This type of information must become known to the patient and their family. This is actually a way for the patient to take charge of how their time will be spent—away from inpatient hospital rooms, IV treatments, vomiting, pain, and other side effects caused by toxic drugs that may actually provide minimal, if any, benefit.
However, in some situations, patients may want to participate in a phase 1 clinical trial, not because they think it will be the magic bullet but to offer themselves up to research in the hope that what is learned may benefit another metastatic cancer patient in the coming years. It can be an amazing legacy to leave.
As long as patients are educated sufficiently about the pros and cons of treatment decisions, whatever they choose, support them in their decisions.