Year: 2022
Type: editorial
Abstract: Words matter.The language we use to describe the human experience is essential to understanding individuals' lived experiences and how we can best care for their well-being.Take the words formal and informal, for example.The word formal suggests official, proper, qualified, while informal suggests casual, unofficial, easy.Imagine then describing a group of individuals as unofficial, that is, as an unofficial person involved in the daily intense work of taking care of a loved one with a chronic or life-limiting illness.Then imagine trying to course correct a linguistic norm.This is the tipping point that I, as a caregiving scientist, am now trying to influence.I wrote my first scholarly article on the topic of caregiving in 2013 (Applebaum and Breitbart, 2013), a systematic review published in this journal summarizing the state of intervention research for caregivers of patients with cancer.In that paper and in many subsequent works through 2020, I repeatedly made a significant error.This error was a disservice to the field of cancer caregiving, to caregiving science more generally, but most importantly, to caregivers themselves.I referred to family caregiversthe friends and family members who are so intimately involved in the care of patientsas informal caregivers.It was an error of language, but more importantly, it was an oversight of the essence of human identity.Back in 2013, I had seen the phrase used in a handful of oncology publications written on the topic of caregiving, and in many more coming from the literature on dementia caregiving.The word informal was used, I believe, to differentiate family and friend caregivers from formal caregivers, that is, healthcare professionals who provide care to patients as part of their paid employment.The intended use of the word was to highlight the element of caregiving that is inherent in our work as healthcare professionals, and the fact that we are, in effect, employed (i.e., paid) to take care of others.We are, formally, caregivers.Yet, like many words being deeply examined today, informal calls for reflection.There is nothing informal about caregiving.There is nothing informal about the care provided by the thousands of caregivers who have now received support in the Caregivers, Couple and Family, and Bereavement Clinics at Memorial Sloan Kettering Cancer Center (MSK) since our programs began, or through the many clinical trials coming out of these clinical services.There is nothing informal about the care that at least 53 million Americans (AARP National Alliance for Caregiving, 2020) are currently providing to loved ones with chronic and/or lifelimiting illnesses, care that involves significant physical, emotional, spiritual, existential, and financial costs.And there was nothing informal about the decade that I stood by my Dad and gave every ounce of my soul to taking care of him, supporting him, and honoring his wishes.My Dad was Stanley Applebaum, the world-renowned composer, orchestrator, and arranger who is perhaps best known for his arrangement for Ben E. King's "Stand By Me."The memorable string line in the middle of "Stand By Me" that gives the song its orchestral feel was my father's creation, as were thousands of other arrangements he did for all of the top artists of the 50 and 60s.My Dad had Lewy Body Disease, a progressive neurodegenerative disease that can lead to fluctuations in consciousness.For him, these fluctuations meant visual and auditory hallucinations that were disturbing and often accompanied by life-threatening autonomic changes, like sudden drops in blood pressure or temperature.One moment we would be discussing a piece of classical music and the next, he would be unable to focus, distracted by a false perception of three men standing by his bed about to attack.During the decade that I took care of him, I served as his eyes, ears, and often, voice while he lay in stretchers, frequently for days in cold hospital hallways (Applebaum, 2022).I realized during the first or second of what was eventually thirty-something ER visits, that without me by his side, when my Dad was having an LBD fluctuation and was not oriented, there would have been no way for any of his "formal" caregiversthat is, his healthcare providersto know my Dad, to know anything more than what they could see in front of them with their eyes and in the medical record.I knew in those moments that without my conveying to the healthcare team who my Dad was in terms of his personality, his drive for life and desire to continue to be productive in all ways possible for as long as possible (he continued to write music until his last weeks), that he would be at risk for being labeled as another ninety-something-year-old man with multiple comorbidities and a likely poor prognosis, and that this label could significantly shape the care he would receive and the trajectory for his life.And so, I stood by him and was his fiercest advocate, formally so.
Source: Palliative & Supportive Care
Author: Allison J. Applebaum
Institution: Memorial Sloan Kettering Cancer Center
Language: English
Topic: Nursing care and research
Subfield: Pharmacy
Field: Health Professions
Domain: Health Sciences
Open Access status: bronze
Funder: National Cancer Institute
OpenAlex ID: W4290960680