By Elaine Douglas, The MSA Coalition Board of Directors
Dignity is one of the most important aspects of being human. Simply, dignity is about being seen, heard, and acknowledged for who we are and treated as if we mattered. The realities of having MSA can threaten a person’s sense of dignity. As care partners, we have a key role in helping our loved one maintain their sense of dignity.
This role is important throughout the MSA journey. But there is no more critical time for focusing on this role than at the end of life. One article from a hospice agency explains that “[n]ear the end-of-life, most people have less control over their life due to illness. Therefore, caregivers must act in ways that help preserve the person’s sense of dignity.”
The article goes on to identify key aspects of dignity at this part of the journey. These are:
- Respect, which includes self-respect, mutual respect, and respect for privacy.
- Autonomy, which involves having and providing choices, as well as competence and independence.
- Empowerment, which can involve self-esteem, pride, and modesty.
- Communication, such as explaining and understanding information, both verbally and non-verbally.
Choice is a critical component of this phase in our journey. Do they want a feeding tube? A tracheostomy? DNR? When would they consider palliative care? Hospice care? And as death nears, who do they want with them? Are they considering Death with Dignity? The process of finalizing advanced directives can help direct your discussions about these decisions. Most importantly, it’s a way for you to learn what they want.
What if you disagree with their choices? You can have open and authentic discussions … maybe many of them. You can share research, information, stories, and feelings. But ethically and legally, patients have the right to make their own healthcare decisions. So, listen and learn; then honor their wishes.
Honoring our loved one’s choices about what they want – and how they die – is the ultimate expression of love and respect.
