The cancer continuum describes a series of phases over the course of the cancer experience initiating at diagnosis. Understanding the phases of the continuum can be helpful for the patient, the caregiver, and the healthcare provider in a number of ways.
This same continuum can also be used to help the stakeholders to be more consciously aware of how the needs and roles transform over time. Why is this of value? Patients have different levels of needs at different times. Failing to identify these clearly can put stress on relationships with caregivers, family members, and healthcare providers.
During the initial phase of diagnosis, there is what we would identify as a crisis point for the patient. Patients and their loved ones experience varying degrees of shock and chaos. This is followed by the initial 4 to 8 weeks involving staging, education, selection of treatment plans, and entry into treatment. Patients and caregivers typically wonder how treatment will impact the many parts of their lives—family, finances, profession, and more.
Some patients welcome a higher degree of involvement by their caregivers while others find self-managing their care empowers them. It is important for patients to decide what works best for them. Healthcare providers can help caregivers and families avoid tension and miscommunications by helping patients to identify the level of support they desire in what parts of their life and encouraging them to communicate this to their family and caregiver.
During the treatment phase, it’s common for caregivers to take a primary role in coordinating care. Caregivers often take on the majority of tasks, including research, insurance, finances, childcare, nutrition, cooking of meals, general household tasks, driving, and more. This provides some caregivers with a much needed sense of control in a situation that seems out of their hands. Meanwhile, patients struggle with going from living a healthy, independent life to needing support physically, emotionally, financially, and more.
Healthcare providers can assist by paying attention to how the patient and caregiver are working together while facing feelings of overwhelm during the initial phase. As a caregiver to my late husband, I was extremely grateful for the tasks the oncology nurse offered up to me that made me feel like I was making a difference for him.
The next critical transition point occurs approximately 6 weeks to 1 month prior to the end of initial treatment, though, as with all these timeframes, it is somewhat dependent on the individual and their circumstances. As patients and caregivers begin to realize the schedule of treatments and consultations is coming to a close, many have a hard time imagining life beyond treatment.
Patients who have been well cared for and supported through treatment by their healthcare team may experience a potential challenge leaving the perceived safety of this process. Trying to integrate back into communities where there will typically be less support and fewer resources can create a significant amount of stress, feelings of isolation, and overwhelm at the prospect of having to fend for oneself. As well, they may need less hands-on care from their caregiver and prefer, instead, to take more of a leading role again.
It is important for caregivers to recognize as their loved one needs less physical care and is more able to live independently. If a caregiver tries to do too much, the cancer survivor may become frustrated or feel suffocated instead of supported. As a patient recovers from treatment, they face other issues and challenges. Their needs and the tasks related to those needs change. From a healthcare provider perspective, being aware of the connection between the shift from one phase to the next in the continuum and the impact it may have on how the patient and caregiver have been working together can help to support them evolve their relationship more consciously.
As patients move into the survivorship phase, which can include a wide range of scenarios all the way from curative outcomes to those dealing with chronic or metastatic and terminal diagnosis, needs often evolve again. Whether treatment has been curative or patients in this phase are left to deal with living with longer term or life long situations, things will never be the same for the patient and their family.
This phase brings another opportunity for patients and their caregivers to check in and redefine roles based on needs. By applying the concept of the cancer continuum to the changing nature of patient and caregiver roles, healthcare providers can better prepare families to transform over the course of the experience, creating a potentially healthier outcome for their relationships and less stress on those relationships.