What Matters Most to Patients and Their Families and How We Know

By Mary Koloroutis
Insights From 15 Years of Being at Our Daughter’s Bedside 

What do we know about what matters most to patients and their families in our care?  And, how do we know it?  We know what matters from listening to people tell their stories. They have shared their care experiences. Indeed, we have learned what is caring and what is not as expressed by them through their eyes and their perspectives.

We know what matters from the literature. There are many books written by patients about their illness and impact on their lives. There has been extensive research on the patient experience, patient distress and what constitutes quality care. Notably, there is growing understanding of the link between compassionate care, quality, and safety.

And, we also know what matters from our own personal experiences as a patient or family member. My husband Michael Trout and I, for example, have been at our daughter’s bedside for the past 15 years as she has navigated lupus nephritis, kidney failure, dialysis and two kidney transplants. In these circumstances, on the other side of the bed with your beloved child in the hands of healthcare professionals, what matters most becomes exquisitely clear!

I would like to share some of our insights spoken through the voice of the patient/family…
  • First and foremost, I need to know you are there —that you’re plugged into what’s going on with me, and that you have my back. I am highly vigilant. I am very aware of how you are with me because you have my care or my loved ones’ care in your hands.
  • I need to know that you are competent and that you have knowledge and understanding of my situation. When you are concerned enough to learn about me, and then you carefully communicate my situation with the other members of the team, it shows me that you are all in this with me—and with each other.
It doesn’t require more time…
  • I don’t need a lot of your time, but when you are with me I need you to listen with your eyes and heart.  As best you can, try to suspend judgment and understand me. Long after you leave, we will continue to live with the challenges of the illness. When you recognize and acknowledge our insights and expertise about our situation it further empowers us to cope and manage our recovery.
  • I know my body, I know what works and what does not work…. listen to me.  I ask that you recognize that I have information about myself that is of value to you and to my care. This is especially true if I have a chronic condition – I have endured so much, and I bring that knowledge and experience with me and it affects how I am with you today.  When you talk to me as though I am a beginner, I feel unseen, anxious, and at risk. Partner with me. Work with me, not on me.
Information matters to me…
  • Keep me informed. If I have procedures scheduled, I need to know what they are and why they’ve been ordered. You can anticipate that I am anxious about the procedure, and my anxiety increases when I am waiting without information. As best you can, keep in mind that change of shift times worries me.  I wonder if the next person will understand what I need and what has happened.  I wonder if the next person will know how to care for me.  I wonder if I will be ok.  It helps when the change of caregiver happens with me included so we are all on the same page. I am a big fan of bedside change of shift.
You can help to reduce my suffering…
  • Of course, I worry about pain and suffering, too. And when you are working with me, informing me, being there for me, knowledgeable about how and when to intervene, my anxiety and pain are lessened, and my suffering is eased. I feel held in your care. I feel that I matter to you. I feel that I am seen as a person in my own right, not as my diagnosis or your assignment for the day.

Chances are you have been a patient or the family member of a patient, too. So, you know what a difference a present and attuned caregiver can make. Next time you interact with a patient or family member try to pause and set an intention to tune-in, listen to, partner with, and empower those in your care. You make all the difference.