Palliative Care: Is There Room for More?Evangeline G. MacMillan, BA, BSN, RN, CHPPN Sep 22, 2020
As a 2nd year MSPC student, I’ve gained incredible amounts of valuable palliative care knowledge from the best of the best in the field. I am forever grateful. Through this knowledge, I’ve become aware of many who could benefit from palliative care yet do not qualify because their diagnosis is due to an event, not an illness.
I’ve witnessed friends and family lose loved ones due to a serious illness. Some had palliative care &/or hospice care in place; grateful for the support their loved one as well as their family received. I’ve also witnessed friends and family who’s loved one had an event, altering their life as they once knew it. Those in the second group have struggled as much as those in the first, trying to make sense of their loved one’s event, the short/long term outcomes, doing all they can to support their family member. The difference is the second group has no palliative care support. They have no one asking their loved one how he/she is coping, what is helpful on a typical day, minimizing side effects of treatment/medications, or how are the caregivers coping and what resources would be helpful to them. The family members of the second group are on their own, often making their way through the unknown world of critical medicine and rehab, eventually caring for their loved one at home with no safety net to fall back on.
The 2020 Global Pandemic has proved to be enlightening and challenging in multiple facets, palliative care being one of them. A friend’s sister was diagnosed with an aggressive form of cancer. Outpatient palliative care was begun with goals of care and comfort measures in place almost immediately. Unfortunately, she was hospitalized & died shortly after due to procedural complications. The adult daughter of another friend suffered a grand mal seizure of unknown etiology followed by two brain hemorrhages. She remains hospitalized minimally responsive on a ventilator with a tracheotomy, IV fluids, and NG feedings. The outcome remains unknown.
Both sets of friends were/are unable to visit their loved one in the hospital due to the pandemic. Both sets of families distraught not being able to spend time with their loved one, feeling angst there is nothing they could/can do for their loved one. If the pandemic did not exist, both sets could spend time with their ill family member yet only one would have palliative care. Based on what I’ve learned in the MSPC program, I feel both sets of families would have benefitted from all palliative care has to offer to patients and their families. The ability to cope with their loved one’s illness or event and more importantly the palliative care support given to the loved one is invaluable in spite of the outcome.
Thinking of both friends had me wondering why is palliative care only for those with life limiting or serious illnesses. Limited research was found on my question. Garcia-Altes et al., state “Traumatic injuries have high morbidity and mortality rates and they can also cause disability.” (2012). Why, then, is palliative care not offered to those with a life altering event? I think of others I know who have had horrific experiences such as a 4 year old girl paralyzed from the waist down after being hit by a car when riding her bike, the high school girl who suffered a severe extremity and joint loss after accidentally being dragged under a limousine during prom, or my grandmother paralyzed on the right side from accidentally taking the wrong medication dose. Although the need for palliative care in TBI patients is recognized, there is insufficient knowledge to implement it (Creutzfeldt et al. (2015)) & (Kahveci et.al., (2017)). It is well known older adults suffer substantial morbidity and mortality after major trauma. “Only 2 percent of those who died within six months after discharge received palliative care during the trauma admission.”(Lilley et. al., 2018). Although further research is warranted, I strongly believe those who have experienced a life altering event would greatly benefit from palliative care and all it has to offer.
I’m well aware not everyone knows what palliative care is. I’m also aware there is a shortage of those with advanced degrees or training in palliative care. There is also the lack of reimbursement for palliative care’s invaluable service. Nonetheless, through conversation and actions, my hope is those of us in palliative care will further open our minds and hearts to gently and respectfully implement palliative care for patients with life altering events.