Talking to loved ones about your clinical trial

Families are commonly the strongest support network a patient has when dealing with serious illness. From helping with transportation or childcare needs to offering words of encouragement, family members are especially an integral part of any cancer patient’s team. This team sometimes forms early during the diagnosis stage of the cancer journey. During the diagnosis process, the family network provides a sounding board and some degree of patient advocacy. When family members attend doctor visits with the patient, they are getting firsthand information about their loved one and not a filtered summary of the appointment.

In an ideal scenario, a patient with cancer is able to receive the best care available at a hospital not far from their home. But not all hospitals have the same capabilities related to the field of oncology.  There is variability in specialists, scanning technologies and surgical expertise. A patient may, after considering the plan proposed by the oncology team, decide to look into clinical trials as a care option. This may happen during the diagnosis stage. Sometimes a person undergoing cancer treatment experiences problems related to the chosen therapy. This can be in the form of disease progression signaling that the therapy is not working. And sometimes after a period of no evidence of disease, cancer cells return. These situations can also lead a patient to look into other options.

When a patient becomes interested in a clinical trial, it can be difficult for the family to understand. This is particularly true when loved ones are interacting as part of the care team and very involved in the treatment process. It can be hard to accept more change or adapt to new ways of doing things. On top of this, not everyone has an understanding of clinical research. One on hand, interest in clinical research was spurred by the COVID epidemic and volunteers eagerly screening for the vaccine.  On the other hand, medical misinformation has accelerated in recent years.

So whether family have been closely involved with care, or learning about it through phone calls, social media or text, there may be questions around the decision to enroll into a trial. Any dialogue will likely revolve around potential results or outcomes, safety, side effects, and location. There may also be conversation about clinical research in general. It can be helpful to have information about the research center and the trial readily available, including the trial number (which can be looked up online) and the details of the protocol (how many visits, where, for how long). If a patient is electing something experimental over something standard, there will probably be different conversation particularly if the care will be delivered elsewhere (city or state).

For adult patients, care is ultimately self-directed. Many different inputs comprise decision making along the cancer journey and family can be a significant factor. But ultimately it is up to the patient to decide for him or herself what steps to take in order to achieve the desired outcomes. When talking with loved ones about cancer treatment decisions, here are a few things to consider:

Your energy level. Anticipate any questions and concerns and plan for the conversation accordingly. Maybe an email or a social media post is easier since there is time to put thoughts into words – though then there is the rush of notifications and texts that might follow. Again, choose timing wisely.

Empathy. Emotionally, cancer effects everyone differently and we all accumulate baggage with the disease. This happens before most people are ever even diagnosed themselves. So talking with family about a new plan can be met with a range of emotions, all amplified by the care and concern for the patient. On top of this, if travel is involved, it can change how family members are involved moving forward which is hard on them as well.

Keep your team focused. As care approach or location changes, so might the role loved ones were had been playing as part of the overall patient support system. Think about how your needs may change because of the trial and consider proactively asking for family support. A patient that will be flying for treatment has new needs. The logistical preparation involved can be significant – family members help lighten the load with meal prep, airport rides and research.

Change is never easy but often is part of the cancer journey. Clinical research is an avenue many cancer patients ultimately travel down even though not part of the original plan.