There are multitudes of cancer studies evaluating diagnostic markers and tools, treatment effects, novel treatment ideas, risk factors, genetic complexities, and more; it is well established that cancer is a complex topic. Additionally, the human lifespan has increased tremendously over time which means people may develop multiple health conditions which can affect their daily living. How often are studies looking at the mounting complexities that patients face in addition to a complex cancer diagnosis or treatment plan? There are some that evaluate co-morbidities for patterns and trends to help make better predictions and provide the best patient care. However, there are very few that take the approach of a study published in the British Medical Journal on April 12, 2018. This study focused on two key components understudied in the literature. The first is the co-morbitidy factors of dementia and cancer on decision making within the context of cancer patients. The other element evaluated is the experience of patients with dementia with the framework of decision making related to their cancer diagnosis and/or treatment.
The objectives of the small qualitative study focused on the complex decision-making process that this particular group of patients experience with their providers and how to meet informational needs for everyone involved in the care and coordination of care for dementia cancer patients. The authors interviewed the dementia cancer patients, their informal caregivers, and their oncology health care providers.
Not surprisingly, the research data illustrated the heightened role that informal caregivers play in the decision-making process and experience of those patients with dementia and cancer. Decision making by dementia patients in regard to their healthcare is challenged by their differing levels of comprehension and mental processing of risk and benefits of options. It is well established in the literature that informal caregivers, or family supports, advocate and play a large role for the general population of patients with cancer. In this study, the informal caregiver’s role as a support, and essentially a healthcare navigator, was critical.
Four reported themes emerged as part of this specific and targeted co-morbidity experience and decision-making process. The four themes are sections of a process arc looking at the initial time before a cancer consultation, how to communicate clinical information that is relevant and will accommodate the patient’s comprehension ability, the modifications that might need to be made as part of the care plan, and approaches to take after cancer treatment ends.
The first experiences, as part of the journey with cancer for the patients with dementia, were challenging because dementia patients had a harder time recognizing symptoms and tracking their relevance to their cancers. Adding to this challenge initially was the lack of health care provider awareness of the different needs of dementia patients in the context of their cancer diagnosis. An example provided during an interview focused on a health care provider giving the dementia patient complicated instructions that the patient could not interpret or follow. In addition, the role of the informal caregiver became especially important to assist in follow through on making and keeping appointments as well as for advocacy with health care providers to adapt their care and approaches to account for the dementia effects on the patient. From the health care provider’s perspective, gathering helpful information to guide their decision-making process prior to the initial consult was very challenging due to missing or unknown pieces of information not available because of the patient’s other condition.
The second piece identified in this decision-making experience process is the incredible value of taking more time to communicate clinically relevant information. While informal caregivers experience was that they tried to fully inform the clinical that more time would need to taken to facilitate the discussion and patient understanding, many health care providers did not initially slow down. Another challenge was that the patient was engaged at the time of consult but then later could not remember her involvement. Informal caregivers, again, play a crucial role in helping support the dementia cancer patient in recalling their involvement in their own healthcare decisions where possible. Complicating this part of the journey is the informal caregiver’s own ability or knowledge surrounding healthcare and treatment options relevant to the dementia patient’s diagnosis. Much of the provided “patient literature” given to the patients and those supporting them was still challenging to interpret and not all family members felt they could properly explain the information. Cancer treatment options for dementia patients also needed consideration because the effects of treatments on dementia have not been studied. Following necessary treatment protocols is a challenging endeavor for dementia patients when their instructions for in between treatments does not make it to long term memory. Their compliance levels decrease which could affect their treatment plans and results. Lastly, the planning process can take longer because of the number of people involved in that decision-making process in support of the dementia cancer patient.
The third component involves potential adjustments or adaptations to the care that dementia cancer patients receive. Continuity of care and care coordination are critical for this cohort of patients. Additionally, finding more understandable ways to explain what was or would be happening as part of treatment was important to the decision-making process. The ability to explain medically relevant information in a basic way is a gift; this population of patient needs providers that can do this seamlessly as part of their care. The authors noted the value of health care provider/staff training on treating the person with dementia and cancer. One surgeon quoted in the study said, “[It’s] useful to train some people to have more experience treating people with dementia because sometimes it can be stressful…we have to plan every patient properly and give a bit more time”. From the healthcare providers experience with dementia cancer patients, they indicated that without appropriate adjustments, challenges in communication, information, compliance, etc. can get out of hand quickly.
Lastly, after treatment ends, patient and informal caregiver experiences were challenged by the uncertainty of how to move on and relearn things that might have been removed from the dementia cancer patient’s memory after being involved in treatment away from home potentially.
This study sheds light on a critical piece of caregiving and healthcare that is often talked about but not necessarily practiced to its fullest. While there are limitations to this study, considering the experience and studying the decision-making process experiences from multiple perspectives in this way allows for a multifaceted approach to the customer service needs of those involved in complex healthcare decisions and plans. Co-morbidity factors can compound challenges, like for the population in this case; however, there are great opportunities to design learning and continuing professional development around this topic and others as part of quality patient care and best practice.