Penelope ‘wasn’t acting right’ and EMS transported her to the emergency department. Her distraught daughter, Lynn, arrived within minutes and scrambled to find the notebook listing her elderly mother’s vital signs over the past several days.
Penelope had stopped chemotherapy for multiple myeloma and was being treated for a recent urinary tract infection (UTI). She did not understand why people were making a fuss over her. She appeared more content than confused to the ED physician. He wondered if admitting her to the hospital would be in her best interest. Was it appropriate to talk to her daughter about doing less or proceed with the standard workup for evaluating patients with altered mental status?
Lynn breathed a sigh of relief at the mention of offering her mother palliative care. She had raised this question four days earlier with Penelope’s primary care physician when the UTI was first diagnosed. Lynn was shamed into believing it was too soon to discuss options about end-of-life care. If not then, when? Is the right time to bring up this subject after the patient’s admission to the ICU?
Might the best time to turn over a new leaf – acting in your patient’s best interest rather than following protocol – emergency department?
The following steps acknowledge turning over a new leaf:
Be the change
It takes tenacity and advocacy to change the hearts and minds of healthcare professionals who follow established standard medical protocol. Family caregivers many not have a formal education, but they often have practical experience and common sense on the care of family members. They are the best advocates for defending their loved ones from the potential offenses of the healthcare system and providers fearful of patients dying.
Penelope’s decision to stop chemotherapy implied that she was done with medical intervention and prepared to die. Lynn advocated for end-of-life care, but Penelope’s primary physician denied it. Lynn allowed the physician to change her mind instead of speaking up and changing his mind.
A caregiver’s tenacity is a force that makes change possible. Physicians abide by standard protocols while treating patients with chronic illness. Caregivers need to stand on the principles of compassion and humanity in the care of their loved ones. You cannot expect the healthcare system to change if you’re unwilling to confront you’re own fear about your loved one dying.
Handle the truth
The truth will not only set you free, but will allow your patient the freedom to just…be. Patients are continually reminded that there is something wrong with them. They can make things right by taking medication, watching their diets and not being sedentary. They experience constant scrutiny and their interest in living often wanes.
Penelope’s life was unmanageable and burdensome. Did that imply she needed hospitalization or admission to an extended-care facility? Could the situation be as simple as discontinuing her antibiotics and allowing her to return home? Was palliative care truly appropriate?
The best ways Lynn could care for her mother were to show compassion, resist the need to find something wrong and to understand that Penelope had reached that stage in life requiring less treatment of disease and more respect for well-being. As a caregiver, when you can handle the truth of this premise, palliative care makes sense.
Nothing ventured, nothing gained
The ability to live and let die is a daring venture. It’s often scary. As a caregiver, you must fully acknowledge the inherent risk of managing another person’s life . . . possibly harming yourself. Like most, you accept the challenge because the value of saving another person’s life is worth making sacrifices.
Lynn had been juggling the concerns of holding on and letting go of her mother for quite some time. While the primary care physician suggested holding out hope, the emergency physician provided the permission to let her mother return home. Lynn was willing, able and ready to have her mother accept palliative services. It was time to stop saving her mother’s life and allow her to live carefree.
As a caregiver, when you permit your loved one refusal of further medical intervention, you reduce significant obligation and stress. Rescinding these restrictions allows your patient to regain self-respect. In all likelihood, patient’s spirits will rally and you’ll see them smile again. This is the blessing you’ve earned.
Think from your heart
While turning over this new leaf, you might ask, “What would Jesus do?” Several thoughts come to mind: 1) Honor your father and mother, 2) Love one another as yourself, 3) With God (love) all things are possible. This basic principle of these tenets resonates with the practice of nonviolence – do no harm.
Lynn had reached that point of caregiving when doing no harm became the best option. She moved her focus away from treating disease and toward respecting her mother’s humanity.
As a caregiver, you might listen to your heart, but can you think from your heart? You need simply to focus on making a bad situation better. The heart acts like a processing plant –taking the impoverished elements from the veins, oxygenating them, and disseminating goodness to the entire body. When bringing your heart to each season of caregiving, you bring a world of good to your patient.
Turning over a new leaf is often met by protest. Penelope’s grandson did not understand why she was being discharged from the hospital without further treatment. The physician explained, “Releasing her was the honorable thing to do, given the current circumstances and Penelope’s lack of interest in hospitalization.” The young man began to appreciate this different way of treating his grandmother. Perhaps this would prove a teachable moment for a future caregiver.
Lynn tightly wrapped Penelope up in her wheelchair, almost seeming to skip out of the ED without looking back. They were both lighthearted and enjoying newfound freedom.
With palliative care, all things are possible.