Ready or Not: Planning for Health Declines in Couples with Advanced Multiple Sclerosis

Abstract

This study explored how couples living with advanced multiple sclerosis approach planning for health changes together. A qualitative descriptive approach was used, with multiple in-depth interviews. Ten couples were interviewed, consisting of 10 participants with advanced multiple sclerosis and their 10 respective spouses. Interviews were transcribed verbatim and analyzed for themes related to dyad decision making. Particular focus was paid to how or if couples planned for worsening health, including advance care planning. Characteristics of couples who had made plans for worsening health included a desire to make decisions ahead of time, work in a healthcare field, and a life-threatening health event for the care-giving partner. Characteristics of couples who had not discussed plans for worsening health included diminished quality of communication between partners and hoping for a cure. Findings suggest that providers may need to assess quality of communication between partners, because strained communication may negatively affect the process of informed healthcare decision making.