Navigators are vital in communicating realistic expectations to patients, and helping them to transition from one phase of hope to the next, especially when the treatment goes from curative to palliative.
For patients who had an early diagnosis of cancer and it has now reappeared in the form of metastatic disease, the patient expects the oncologist to go through a myriad of treatments with the hope of obliterating the cancer once again. When the oncologist says that this time the treatments are palliative and not curative, the patient will likely turn to you, their navigator and advocate, to try to “persuade” the oncologist to be more aggressive with the treatment recommendations. This is where the conversation gets tough.
Having a patient think differently about their cancer treatment, when dealing with metastatic disease, is difficult at best. Explaining, however, that their cancer is now a “chronic illness” can help reframe the discussion because the patient is likely receiving other medications for chronic comorbidities such as heart disease or asthma.
Where more confusion lingers, however, is in the discussions about the right treatments and in what order. There were very specific regimens that the oncologist followed when the goal was curative treatment. However, now things seem “looser” and less defined. Although there are more drugs being created and new drugs currently in use, when to receive them and how effective they will be remains an area where there are still shifting sands. This can result in the patient not feeling confident they are getting good care, the right care, and the right treatments in the right order. Again, this is where you need to step in and provide support and education.
We also need to help guide the patient through phases of hope. That may sound strange, but if we aren’t successful in helping the patient move and transition through these stages, the patient may not eventually experience a “good death.” Some cancers allow the patient to live in harmony with their cancer for years. Others, however, are very time-limiting—knowing the likely prognosis and time line for your patient will be very important.
Initially, patients hope and even perhaps expect a miracle cure. It is appropriate to support this concept, although a long shot, while still putting it into perspective—to be optimistic for as long as it is realistic. Then the patient realizes they will likely die of their cancer but plans for it to be many years from now, even decades. As treatments stop working and they move on to other more toxic therapies, patients will hope for quality of life for their remaining time, which they understand will be months instead of years. Finally, their hope would be and should be for a good death—pain-free, wishes known and carried out, financial and legal affairs in order, giving and receiving forgiveness, knowing their purpose for living, leaving a legacy of some sort unrelated to money, knowing they will be spoken fondly of after they are gone, and feeling a spiritual connection to a higher power. Such elements of a good death take time to orchestrate and cannot happen in a few days or even a week.
As a patient advocate and navigator, we have a critical role to help the patient move from one phase of hope to the next, making sure their goals of care are the goals followed, and that getting treatment for treatment sake is not getting good care. Physicians, as you may have witnessed, can be very hesitant to embark on a discussion about end of life. They are more comfortable talking about the next treatment than the profound discussions that should be happening in parallel.
Getting palliative care involved early on is also important and something the medical oncologist may not choose to pursue. Physicians feel they are capable of managing their patient’s pain; however, their solution is usually narcotics, which puts the patient into an obtunded state, preventing them from really living their lives. Palliative care specialists use other methods whenever possible so that patients are still enjoying their lives instead of just existing.
Yes, these are difficult discussions to have; however, they are so critically important because just as you navigate a patient through treatment and into survivorship, you also need to do the same with those who will not become long-term survivors. When all is said and done, there is nothing more fulfilling from a navigator’s perspective than knowing you have supported your patients in an extraordinary way to have them ready for end of life and to find peace.