Patients with advanced cancer and their family caregivers face especially challenging physical and psychological experiences as they navigate a terminal disease and accompanying treatments. Thinking about death and discussing emotionally challenging topics such as end-of-life preparations are difficult for most people.
They explore whether mindfulness, the psychological process of bringing one's attention to experiences occurring in the present, can enhance the ability of patients and families to consider and discuss emotionally challenging topics such as end-of-life preparations and support timely advance care planning.
Twelve patient-family caregiver pairs participated in a pilot study of Mindfully Optimizing Delivery of End-of-Life (MODEL) Care, which combines mindfulness meditation, mindful communication practices, and information about advance care planning.
It focuses on emotional and communication capacities to enable patients and their family caregivers to respond to the experience of living with advanced cancer and to talk about the disease and future care preferences with greater ease.
MODEL Care successfully supported patients and their family caregivers in thinking about and then talking about the care they would want to receive if they become unable to speak for themselves, enhancing their ability to respond to emotional challenges, and decreasing barriers to end-of-life planning
They found that MODEL Care improved ability to cope lowered emotional reactivity and enhanced ability to respond to issues that incited emotion.
It strengthened the patient-caregiver relationship and communication with each other. MODEL Care also improved both patient and family caregiver communication with the physicians caring for the patient.
Patients also reported that mindfulness practices helped them to respond to the physical challenges of their disease and treatment. Patients noted that the practices enabled them to cope more effectively with the symptoms of their disease allowing them to meet the pain differently.
Caregivers reported changes in their loved one's ability to cope with their disease following the mindfulness sessions. One caregiver shared, seems to be much calmer regarding his diagnosis and fear of death. Caregivers also reported benefits to themselves including finding "peace" and an increased ability to "cope with the stress of cancer."
Family members then struggle to know what their loved one would want. Quality of life of both patients and caregivers is enhanced when both parties have the ability and willingness to have these conversations while the patient feels well enough to express their preferences for the types of treatment they would or would not want.
People need to be able to convey their wishes and to be respected for what they want their end of life to be like. Existing advance care planning programs do not directly address emotional barriers to having these conversations and making advance care decisions. They support patients and their family caregivers in developing mindfulness skills to approach and do both with greater ease.
Future research could build on the findings of this pilot to explore in depth the relationship among mindfulness practice, ability to communicate mindfully about advanced disease care preferences, the ease with which patients and caregivers engage in these sensitive conversations and concordance between expressed care preferences and treatments received.