Nurses, not infrequently, have been labeled (very often by other nurses) as “the worst patients; the difficult family member”. Here’s a couple reasons why: nurses invariably assume the role of caregiver in both their careers AND their lives. They historically will care for everyone else, before themselves (often contributing to the phenomenas of “compassion fatigue” and “burnout”.) Nurses put off their own health care needs, and when they do have a medical appointment can’t help critiquing everyone who comes in and out of their exam room. (At least I know I do!). Then there is the assumed family role, whether sought after or not, as the designated “spokesperson”—the patient advocate.
From my early years of nursing, I can recall numerous occasions when the other nurses in the unit would report, “the patient’s daughter is difficult; she’s a nurse”. I am sure I was reported as such when my mother was dying, as I expressed numerous opinions about her symptom management. I found myself truly between “a rock and a hard place”. I had knowledge about who my mother was, what her symptoms could mean for her, the family, the hospice team, but also knew I was a family member first. Oh the tightrope I balanced! I became her voice when she no longer had one, yet was reminded to remain within boundaries others felt I should recognize as “being just the daughter” and not the nurse!
This bias is a reoccurring hospice theme. I read an article recently in AJN, this same dichotomy expressed by another nurse-daughter. Then again, as I spoke with other hospice staff just last week about a nurse-daughter’s concern for her father’s increasingly distressing symptoms toward his final days, staff referring to her as “overly involved and highly emotional”. The hospice team’s bias too often surfaces with an expectation that this family member will be a problem. In the article I read, the nurse-daughter was conveniently used as a nurse, when a new situation arose, and the hospice nurse (who should always make the visit when a significant change occurs in a patient’s condition) instead assumed the nurse in the family would handle things. Or the dichotomous view, “she should let us (the “experts”) handle things, and just be the daughter”.
So, the next time you—the nurse/daughter or nurse/relative—are in the position of caregiver/advocate/family member, remember that someone (your loved one) is relying on you to help them speak a language that you understand in the midst of what seems a foreign land. It’s OKAY to be the nurse and the family representative. AND remember that you can also choose to be the family member, albeit at times a very knowledgeable one, that expects the hospice team to do three things: listen first, come when requested, and leave their biases at the door.
Thank you Amy for identifying the issues so clearly! “overly involved and highly emotional”?! “Overly”? “Highly”? Does that translate into, “I don’t have time or band width to listen.” or some version of “I’m in charge here!” or…..? “Involved” and Emotional” – YES! Difficult, energy-draining, and time-consuming to engage with? Yes! Engage that daughter/nurse from the first introduction and acknowledge the added difficulty of her position. Move forward from there together as much as that daughter can allow.
All of that is qualified at this point in my life by my having been a respectful but unrepentant (you knew that) family member/nurse on several occasions. Heaven help me when/if I become the patient.
Thank you for sharing your insights, passion and writing skills with all of us!
I hope this finds you and yours staying well and safe,
Doctors who want to keep the many medications, get blood draws, wait for a UAs before starting on Abx when the urine-and-behavior points to it being plainly dirty…nurses in hospice families do these too. Goals of care, folks! Gotta keep bringing them back to the palliative baseline.
…and be sure that the goals of care are what is most important to the patient
thanks once again, amy. it is/was a tough balance to maintain with ny own family. but my first focus was always the patient. thank you for your insights. such a good writer. noreen