By Donna Stewart, RN, BSN, CCM
After the recent death of my father from lung cancer, the various family stressors that accompany such a loss, and then the very unexpected passing of one of my patients, I realized I needed to make the time to schedule a long-past-due massage. I’ll admit I was looking forward to everything that’s associated with a good massage…the scent of various essential oils that wafts around as soon as you enter the spa, the warmth of the massage table, the therapist’s gifted hands complemented by relaxing music that lulls you into that wonderfully sleepy state. And so it all progressed, just as expected, until the therapist, after providing some focused massage to my neck and shoulders, suddenly stopped doing what she was doing….no massage, no movement, no sound…she was just perfectly still. I had never experienced this before, and my brain immediately woke up. “What’s happening?” “She’s not saying or doing anything,” “Am I supposed to say something?” I was no longer as relaxed as I had been! Then, just as I began to feel a bit concerned, the therapist moved silently and deftly placed a warm pack on my neck and shoulders to continue the rest of the massage. While I acknowledge that this scenario is genuinely far from stressful per se, during these few odd minutes, I realized that I was feeling a bit exposed or vulnerable and suddenly realized the vulnerability that our patients’ families may think in any given situation.
Earlier, I mentioned that one of my patients recently passed away unexpectedly. The day after her death, I received a call from her husband. He explained that he was getting ready to transport his wife for burial back to their home state and asked if he could meet with me when he returned, as he said he needed help understanding how to navigate the healthcare system. I readily agreed to meet with him but was not entirely sure what he might need help with because, I assumed, given his wife’s diagnosis and the associated treatment needs that she had had, he most likely had experienced how to function within both the military and civilian health systems.
We met soon after the new year, and he tearfully explained that he had no idea how to do anything associated with the insurance or our new medical record system “or how to do any of this stuff.” He admitted that he needed to figure it out soon because he wanted to ensure his daughter’s needs were met before she started college in the fall. He seemed almost defeated when confessing that his wife had taken care of everything – even amid her diagnosis and treatment – including things like calling for her referrals, monitoring the insurance and medical records portals for her daughter and herself, coordinating her appointments, etc., and that he had no idea how to access any of this information. I immediately provided him with guidance and education regarding the various information and accesses he would need to succeed in this new journey. Still, something kept gnawing at me after that visit. During my massage experience, it suddenly became clear to me what that gnawing was about. This husband was experiencing a level of vulnerability he had never known before and was turning to the one person he knew his wife had counted on to help make sense of things when her life seemed chaotic.
Now, as case managers, we all understand the depth of vulnerability that our patients experience when facing a devastating diagnosis or condition that sends them our way in the first place. We also make a concerted effort to include and wrap our arms around the patient and the family as best we can. With my new patients, I frequently try to think about any potential needs that might pop up before the patient even realizes they have a need, all in my effort to decrease further stress if possible – from diagnosis/treatment education to insurance needs to counseling to anything else.
But how often do we get so busy making sure that each patient on our caseload is so well taken care of that we may inadvertently overlook the spouse, parent, or family’s needs, too? Try as I might, I’ll be the first to admit that while I do try to make every attempt to adhere to the defining principles of the patient-centered medical home model – for example, integrating care from many sectors of the patient’s community, like their family for instance, in the effort to deliver care in the most appropriate way for the patient – I may lose track of the spouse’s or family’s status while trying to take care of every medical need that requires attention for each of my patients. It’s not intentional at all, but it does happen. When cases like this one come up, where a patient suddenly passes away, and her family is left to struggle with more than just the grief process, it gives me pause and makes me question whether or not I did my best in managing all aspects of this case. And, instantly, I feel vulnerable again…
What does it mean to be vulnerable? What image comes to mind when you think about “vulnerability?” Merriam-Webster’s definition says that being vulnerable is when “one is capable of being physically or emotionally wounded.” Since the late 1600s, this word has been used metaphorically to describe being powerless against non-physical attacks. In other words, a person can, at any time, be vulnerable to failure. Dr. Brene Brown defines vulnerability as “uncertainty, risk, and emotional exposure.” She even goes so far as to say that when we have felt vulnerable, we may remember times of great courage. In the case management world, we acknowledge that our patient with the new diagnosis of cancer or MS or ALS is undoubtedly in a new vulnerable state. Still, we may also encounter people from other vulnerable populations, such as those with disabilities, mental health issues, homelessness, poverty, or trauma, to name a few. During these encounters, we are called on to face not only the patient and family’s vulnerability but also our own.
These are the times to recognize that what we do in caring for our patient population while at the same time remembering to take care of ourselves requires great courage. To get comfortable with vulnerability, Dr. Brown says that it’s essential that we are mindful of adopting the practice of openness and awareness of our thoughts and feelings and that once we become aware of where we are in this effort, we may become more certain about those changes we want to see in our life. Dr. Brown also notes that trying to strike out vulnerability creates a negative impact because “without vulnerability, there is no love, no belonging, and no joy.”
I, for one, have used this case to help me change how I care for my patients, myself, and those around me. I now more frequently ask the patient about themselves and their significant others, what they are thinking and feeling, and what needs they might have beyond the obvious medical needs, while at the same time applying this process to my family, friends, co-workers, and myself. Before this, I was uncomfortable asking certain people what they thought or felt. Still, I strive for love, belonging, and joy, so I am willing to step outside of my comfort zone and ask such questions because now, more than ever, we could all use a sprinkle of each of these in our lives.
So, I encourage each of you, during any given time, to explore your thoughts and feelings – inspire your patients to do the same and experience the benefits of vulnerability.
References:
Brown, B. (2015). Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead. Avery.
Centers for Disease Control and Prevention. (n.d.). Patient-Centered medical homes. Patient Centered Medical Home (PCMH). https://www.cdc.gov/nccdphp/dch/pdfs/dch-cmh-issue-brief.pdf. March 15, 2024.
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Bio: Donna Stewart has been a Registered Nurse for 39 years, and 27 of those years has been in case management (CM). She is a military veteran who served in the U.S. Air Force and her experience, prior to CM as a civilian, includes working inpatient med-surg, ER, OB, renal transplant, vascular/plastic surgery, eye surgery-center intake coordinator, and as member of the OR vascular surgery team. Donna joined CMSA in 2018 and became a certified CM in 2021. She is the spouse of a retired military member and cherishes her current career-path that is focused on serving military beneficiaries, both active duty and retired and their families, at various Air Force base locations.