Living with or caring for someone with a chronic illness — such as cancer, heart disease or advanced lung disease — can be stressful, to say the least. And when such an illness leads you or your loved one to being admitted to the hospital, the stress may become overwhelming, especially when navigating the emotions surrounding the decisions of medical treatment.
Along with the team of doctors, nurses and other medical specialists focused on treating the patient for their illness, there is another group of health care providers at the patient bedside dedicated to serving as a voice for the patient.
The Advanced Illness Management (AIM) team at Sharp Grossmont Hospital provides inpatient palliative care to help relieve symptoms and pain that may accompany the disease or treatment. Along with pain management, the specialists engage in meaningful conversations with the patient, their family and medical treatment team about the patient’s course of care, and ensure it aligns with the values and wishes of the patient and their family.
“Our purpose is to make certain that the care and treatment our doctors and nurses are providing is what the patient wants,” says Jody Atkinson, RN, a patient navigator for Sharp Grossmont’s AIM program. “My role is to be an advocate for the patient to make sure we are honoring their wishes and desires.”
Important conversations lead to quality care
Atkinson and her interdisciplinary team of nurse practitioners, nurses, physicians and social workers routinely meet with patients and their families, either in person, by phone or virtually. This could be a single meeting or a series of encounters over the course of the patient’s hospital stay.
During these meetings, they have intimate and frank discussions about advance care planning and how the patient defines what quality of life means to them as they manage their illness. From these candid conversations often comes a clearer idea of the patient’s beliefs and thoughts on what they would like their treatment to look like in various scenarios, such as the end-of-life stage.
“We communicate what we learn from these conversations to the nurses, hospitalists and intensivists to help develop a plan of care,” says Atkinson. “In a sense, we not only support the families, but we also support the medical team by having these difficult conversations that essentially will better guide the doctors in creating a personalized treatment plan with the patient’s best interest in mind.”
The AIM team also investigates the patient’s health and lifestyle status before coming to the hospital. They take such information and compare it to the patient’s current health status. Combining this data with the information from patient and family conversations gives the clinicians a more accurate idea of the patient’s prognosis and their person-focused plan of care.
“Palliative care is a new concept, but I think our presence in the hospital is definitely growing,” says Atkinson. “We assume that when a patient comes to the hospital, that they want treatment. But we are seeing a shift where we value conversations about our beliefs, how we want to live out our lives and what quality of life means as it relates to our health.”
Atkinson notes that these conversations are important to have even before coming to the hospital when acute events happen. She suggests that families have these honest discussions about their health and consider completing an advance health care directive.
“Having these discussions is needed in the outpatient setting at home, before a patient even steps into the hospital to avoid having to make difficult decisions when emotions are running high,” says Atkinson.
Palliative care and COVID-19
The essential role the palliative care team plays in patient care perhaps has been most evident during the COVID-19 pandemic, when visitor restrictions were put in place at the hospital.
“At that point, our team became the connection between the patient and their family, who could not physically be there at the bedside with their loved one,” says Atkinson.
Nearly two years into the pandemic, the AIM team remains in constant communication with families. The team calls them to make sure they have a good understanding of the care their loved one is receiving, and to help clarify any information they receive from their medical care team.
The AIM team may also ask the hospital’s spiritual care providers to meet with the family. Or they might work with the medical staff to arrange for the family to be with their loved one in the hospital, even if it is simply to stand by the hospital room door.
“For COVID-19, like with other serious illnesses, our team is focused on looking at the big picture with compassion and understanding, and treating patients as a whole,” Atkinson says.